From self-reliance to self-direction

From self-reliance to self-direction Concerning patients with severe psychiatric disorders

Student: Raisa Kumaga Student number: 10024727 Class: Bachelor of Social work Guider: Annelies Kosijungan Assessor: Asna Chander Version: Definitive end product Date: 30-05-2014 By order of Parnassia Bavogroep Bavo Europoort Fact- Ouden Noorden Outpatient team

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Table of Contest Voorwoord .............................................................................................................................................. 6 Chapter 1 Introduction ............................................................................................................................ 8 1.1 Brief introduction .......................................................................................................................... 8 1.2 Motivation ..................................................................................................................................... 8 1.3 Problem analysis............................................................................................................................ 9 1.4 Purpose of this research .............................................................................................................. 10 1.5 Research question and subsidiary questions .............................................................................. 10 1.6 Concept definitions ..................................................................................................................... 11 1.7 Importance of the search for the Social Workers ....................................................................... 11 1.7.1 Relevance of the research .................................................................................................... 11 1.7.2 Usability of research ............................................................................................................. 12 1.7.3 Innovative character of the research ................................................................................... 12 1.8 The tassel ..................................................................................................................................... 12 Chapter 2. Organization Description ..................................................................................................... 13 2.1 Parnassia Group Netherlands ...................................................................................................... 13 FACT Old North of Bavo Europoort ............................................................................................... 13 Transition of ACT to FACT .............................................................................................................. 14 Chapter 3. Target description................................................................................................................ 15 3.1 Who are the patients with severe psychiatric disorders? ........................................................... 15 3.2 The patients of Bavo Europoort .................................................................................................. 16 Chapter 4. Theoretical framework ........................................................................................................ 17 4.1 Introduction ................................................................................................................................. 17 4.2 Theories ....................................................................................................................................... 17 4.2.2 The capability approach ....................................................................................................... 17 Summary........................................................................................................................................ 21 4.2.3 Pyramid of Maslow's ............................................................................................................ 21 Summary........................................................................................................................................ 22 4.3 The United States ........................................................................................................................ 22 4.3.1 The strengths approach........................................................................................................ 22 Summary........................................................................................................................................ 24 4.3.2 Wellness Recovery Action Plan (WRAP) ............................................................................... 24

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Summary........................................................................................................................................ 26 4.4 The terms..................................................................................................................................... 26 4.4.1 Hospitalization .......................................................................................................................... 26 4.4.2 Rehabilitation ........................................................................................................................... 27 4.4.3 Self direction and self-reliance ................................................................................................. 28 4.4.4 Pyramid of self-reliance............................................................................................................ 28 Summary........................................................................................................................................ 29 4.5 Self direction................................................................................................................................ 29 4.5.1 Four groups of self-direction ................................................................................................ 30 4.5.2 Four elements of self-direction ............................................................................................ 30 Self management........................................................................................................................... 32 4.5.3 Professionals and self direction............................................................................................ 33 4.5.4 The attitude of the professionals ......................................................................................... 33 Summary........................................................................................................................................ 34 Chapter 5 Summary theoretical framework ......................................................................................... 35 Chapter 6. Methodology ....................................................................................................................... 37 6.1 Research Group ........................................................................................................................... 37 6.2 Data collection method ............................................................................................................... 37 The quantitative method............................................................................................................... 37 The qualitative methods................................................................................................................ 38 6.2.1 Sub question 1: What kind of ways are there to encourage self-direction.......................... 38 6.2.2 Sub question 2: Which EPA-patients in FACT Old North are self-sufficient ......................... 38 6.2.3 Sub question 3: How can the encouraging methods of self-direction be implemented in the FACT Team Old North .................................................................................................................... 39 6.3 Measuring instruments ............................................................................................................... 40 6.5 Procedure .................................................................................................................................... 45 6.6 Analysis of data ........................................................................................................................... 47 Chapter 7 the roadmap ......................................................................................................................... 48 Introduction....................................................................................................................................... 48 Preparatory phase ............................................................................................................................. 48 Implementation phase ...................................................................................................................... 48 Concluding phase .............................................................................................................................. 48 Timetable goals: ................................................................................................................................ 48 To do list ............................................................................................................................................ 48

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Deadlines ........................................................................................................................................... 48 Chapter 8. The results .......................................................................................................................... 51 8.1 Introduction ................................................................................................................................. 51 8.2 Sub question 1: What kind of ways are there to encourage self-direction?............................... 51 Introduction ................................................................................................................................... 51 Definition for the interviews and observations............................................................................. 51 Summary of the turf list ................................................................................................................ 52 Summary of all the interviews in the Netherlands........................................................................ 52 Summary of ACT Teams in Ohio .................................................................................................... 59 Observations in Columbus and Canton ......................................................................................... 64 8.3 Sub question 2: Which EPA-patients in FACT Old North are self-reliant?................................... 66 Introduction ................................................................................................................................... 66 Screening process .......................................................................................................................... 66 8.4 Sub question 3: How can the encouraging methods of self-direction be implemented in the FACT Team Old North? ...................................................................................................................... 67 Introduction ................................................................................................................................... 67 Readiness Ruler by the center for evidence based practice at Case Western University............. 67 Organizational changes in implementation .................................................................................. 67 Challenges of implementations ..................................................................................................... 68 8.5 Similarities and differences of the theoretical framework ........................................................ 69 Introduction ................................................................................................................................... 69 Similarities ..................................................................................................................................... 69 Differences .................................................................................................................................... 71 Chapter 9 Conclusion & discussion ....................................................................................................... 73 Introduction....................................................................................................................................... 73 Discussion .......................................................................................................................................... 74 Validity of the statements ............................................................................................................. 74 Validity of the observations.......................................................................................................... 75 Reliability of this research ............................................................................................................. 75 Generalizability/ extern validity of this research .......................................................................... 75 Challenges & Dilemma’s ............................................................................................................... 76 Chapter 10 Recommendations .............................................................................................................. 77 Introduction....................................................................................................................................... 77 Importance of The Readiness Ruler ............................................................................................. 77

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Importance of peer support .......................................................................................................... 78 The Advocacy for encouraging self-direction amongst the younger patients. ............................ 78 For future studies .......................................................................................................................... 79 Appendix 1............................................................................................................................................. 80 Appendix 2. Turf List .............................................................................................................................. 82 Appendix 3 interviews in the Netherlands ........................................................................................... 83 Appendix 4. Observation list and interviews Ohio .............................................................................. 109 Bibliography......................................................................................................................................... 122

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Voorwoord?? Since the beginning of this year, I worked hard on this Bachelor thesis. I have been working on this research a little longer than I expected due to my trip to the United States. However I am grateful for getting the opportunity to do a part of my research abroad. It was a lifetime experience that I will always remember in my career development. It was also a challenge to write the whole thesis in English but I am very pleased with the end result. I have performed this study in collaboration with Bavo Europoort FACT Oude Noorden. Therefore I want to thank the team leader Sjaak van Berkel and the team members for contributing in my study. I hope that this study will contribute to a further development of the organization . In addition I want to thank my supervisor Annelies Kosijungan, my supervisor has given me support at the questions I had about my research. She also encouraged me to do my study in the United States. I would also like thank Patrick Boyle director of implementations at the center of Evidence Based Practice at the Case Western Reserve University for providing me to visit the ACT team and for his support during my stay in Cleveland, Ohio. It has been an added value for my study! At last I want to thank God, my parents , my boyfriend and my friends for being there for me through this process and supporting me for taking the step to go to the United States. I hope you enjoy reading this research as much as I enjoyed this experience by writing it. Raisa Kumaga 27-05-2014

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‘’In the long run, we shape our lives, and we shape ourselves. The process never ends until we die. And the choices we make are ultimately our own responsibility.”

― Eleanor Roosevelt ‘’If opportunity doesn't knock, build a door” ― Milton Berle

‘’The Constitution only guarantees the American people the right to pursue happiness. You have to catch it yourself.” ― Benjamin Franklin

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Chapter 1 Introduction 1.1 Brief introduction Coaching aimed at self-management, independency of clients! These are words that are heard frequently in the political sphere as well in psychiatry, but policeman Witkamp, from RotterdamCharlois is skeptical with regard to this new approach. ‘'The psychiatric patients that I encounter rarely call for help when they find themselves in critical and dangerous situations. . They don’t see themselves as patients’ (Eimers& Pike, 2012). There is also a stigma against mental illness. Besides this fact there is also a problem of stigmas that are attached to mental illnesses and other negative preconceived notions of mental illnesses. A lot of people assume or think that people with mental illnesses are crazy. Consequently, they believe it to be impossible to reason with people that have mental illnesses. This reasoning raises the following question: How can self-management and independence of psychiatric patients successfully be achieved? A good example of self-direction (self-management) is presented in the film “Untouchables”. This true story is based on a crippled man that gets his life because of his unorthodox nurse. The man can’t move his body from his neck and physically he is not able to do anything.. His nurse provides him with a way to indicate what he finds important. Because of this he is able to take back control over his own life, which in turn helps him to be acknowledged as a person and individual. He was scared to commit himself in a relationship with a woman, but with the help of the nurse he was able to encounter a relationship with the woman. He becomes more encouraged to speak about his needs and problems (Olivier Nakache, 2011). Professionals need a different approach towards patients with severe mental health illnesses if they want to establish self-management and independence of these patients. They also need to find a manner in which patients are given the ability to make their own decisions, rather than making the decisions for them

1.2 Motivation The short introduction shows that self-direction is increasingly becoming a more important subject .A police officer is convinced that self-direction concerning psychiatric patients is not feasible. In films such as Intouchables with a romantic character it shows that self-direction is possible. Self-direction gradually gets more attention in the society because of the cuts that are made by the Government. The budget deficit was 6.3% in 2010 and falls in 2013 to 2.9%. (CPB Document: Economic Outlook 2011-2015, 2010) The Government can’t spend a lot of money for health care. Therefore the Government wants patients to be less dependent from authorities and health care organizations. They believe that patients should make more use of their social network, so they can participate in society (Geestelijkegezondheidszorg 2013). The mental health care wants to restructure the outpatient treatment. This development is effective by the agreement between the Ministry of health, welfare and Sport (VWS) and the Netherlands mental health care organization (Volksgezondheid Welzijn en Sport, 2012) . With the transition from ACT to FACT the approaches of the professionals will shift. The ACT model is originally from the United States and is developed by Stein and Test (Stein & Test, 1980). Therefore

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FACT team Old North needs findings from the United States to encourage self-direction. In America they have longer experience with the ACT model. The findings will provide insight to encourage selfdirection concerning patients with severe psychiatric disorder for both parties.

1.3 Problem analysis In the mental health care (GGZ) patients were treated with the medical model. The attendants knew what was best for the patients and they decided a lot without the wishes of the patients. They were also more often clinically treated. Patients with severe mental illness are in treatment for a long time, making them hospitalized (BTSG Info bulletin, 2013). With the socialization there was somewhat change in the treatments. However the Mental Health Care is still characterized as an organization whereby patients remain in long term-care and are depended on the care. In recent years, the use of the social model decreased. Patients are receiving more and more control over their treatment and the focus is on recovery (Trimbos Institute, 2008). In the mental health care patients are insufficiently motivated by the professionals to get more out of themselves. Patients are not used to be self-director in their own lives and treatment while they find self-direction and selfreliance important (Handgraaf, 2013). Studies suggest that patients have low self-esteem in their own forces and capabilities (Boon, &Nugter, Dijker, 2005). For example, by lack of self-confidence they take pleasure with their daily activities in a Day Activity Centre (DAC) instead of following a path a paid job. Going deeper in the mental health care Recovery supportive care is going to go deeper in order to develop more self-direction among patients. The last year’s patients were especially encouraged to have a day activity through volunteer work. Due to the introduction of the social care (Wmo) in 2007 self-reliance is expected amongst the citizens. With the Wmo every citizen can continue to live independently and participate in the society because of daytime activities, volunteer work and social care/sheltering houses etc. As a result, the part self-reliance is achieved among patients ( Wet maatschappelijke ondersteuning, 2005-2006) The ministry of Ministry of health, welfare and Sport (VWS) has introduced the Public program in 2009 called Welfare New Style (Movisie, 2011). Due to changes in politics, the increased knowledge about diseases and mouthy about treatment options, shifts the way professionals work. Social work focuses on the power of the client. With this approach the professional is asked to work more questions based and by responding on the needs of the clients and challenge them to find a solution by themselves. The patient is self-director in their own treatment. Not every professional deal with this way of work without any problems (GGZ Nederland, 2013). Professionals should encourage the self-direction of patients with severe psychiatric disorder because otherwise the recovery and rehabilitation will be hindered. It Is important that the power of the patients are more emphasized, so they can solve their own problems and are less dependent on the health care organizations. Also because of the cuts in the health care the cost will go up when patients remain in the treatment for a longer time. The outflow of patients is increased because patients are written out or they are redirected to a general doctor, which is an advantage for the specialist care. Especially in the outpatient care the problem is noticed due to the transition of ACT to FACT. The research will be limited to the FACT Team Old North. The ACT model focuses on the stabilization of

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patients with severe psychiatric disorders (EPA). The ACT model uses crisis management whereby the professionals takes the initiative and solves all the problems for the patients. That is no longer realistic and achievable for all patients with severe psychiatric disorders. The FACT model is going to be implemented in teams, however the professionals keeps using the attitudes of the ACT Model (van Veldhuizen, Bahler, Polhuis, & van Os, 2008). It is therefore important that the mental health staff understands the balance between support and taking care of everything (Cora Brink, Movisie,2012). The target group is the patients with severe psychiatric disorder (EPA) who are in treatment within the mental health care. It is a serious psychiatric disorder, because it affects all areas of the life of a patient. The degree of severity of mental health diseases are not applicable here (RIBW Nijmegen en rivierenland). EPA-patients have severe limitations on the relations and social functions. Research shows that 31 percent of the patients with an EPA suffers from schizophrenia (Delespaul, 2013).

1.4 Purpose of this research The aim of this research is to advance the autonomy of patients in the mental health so self-direction is achieved. The client wants the self-direction of EPA-patients to work as encouragement. Patients who were dependent must do more things themselves and make their own choices and matters into their own hands. The social network contributes a big role as a supporting factor in the lives of these patients. Through this research there will be more understanding by professionals on the possibilities of patients concerning self-direction. Hereby it’s important to take into account that there will be obstacles in the process of self-sufficiency to self-direction. The barriers are both present for the staff as they are for the patients. This research will design a covenant for the professionals to encourage the self-direction of patients. The important thing is that EPA-patients participate in society and apply coaching aimed at selfmanagement in their treatment. As a result patients will have more confidence which will leads to more intrinsic motivation, so recovery is also achieved.

1.5 Research question and subsidiary questions The research question for this research is: In what way can patients with severe mental health disorders who are already self-reliant in FACTteam Old North, outpatient team be encouraged to self-direction? In the next part answers to the following questions will be found. 1) What kind of ways are there to encourage self-direction? 2) Which EPA-patients in FACT Old North are self-reliant? 3) How can the encouraging methods of self-direction be implemented in the FACT Team Old North? The first question examines the different ways of encouraging self-direction. Because of the Theoretic framework and the observations in the United States that part of the question can be answered. It will result in directives that benefit the FACT-employers in encouraging the selfdirection. In the first subsidiary question attempt will be made to determine which EPA-patients within FACT Old North are self-sufficient. By selecting the group who are already self-reliant its more realistic to apply self-direction in their treatment, than it would be in the case of patients who are not self-reliant and unstable. The following questions makes it possible to examine the measure of

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Self-sufficiency (done with the self-sufficiency-matrix). The answers to these questions will make it possible to assess what the most effective way of implementation of self-direction would be.

1.6 Concept definitions This chapter introduces you to the concepts of the central question to achieve more clarity on the subject. In the theoretical framework the concepts will be described in more details. Self-reliance/self-sufficiency: self-reliance means that people are able to live and do things independently. For example general washing, getting dressed, cooking and the ability to function socially (Davies, 2008).Self-reliance is divided into three aspects, social independence, relational reliance and practical independence (Davison, 2008).The first aspect, social independency means that people can handle themselves in society and among the daily life situations regarding social areas, such as leisure, colleagues, friends and family. The second aspect, relational reliance means entering into and maintaining contacts and relationships, people are able to enter into a bond of trust. The third aspect is the practical independence. That has to do with home care, housing, like doing the groceries, cooking, dress up and personal hygiene. Self-reliance is measured with an instrument called the self-sufficiency-matrix. Self-reliance is measured in different domains, such as income, addiction, general daily life, social network, social participation and contact with the justice system. This instrument can be applied during different stages of the treatment. The instrument can also be used as evaluations to see progress on the different domains. Self-direction: Self-direction is emphasizing the power and possibilities of patients, so that they have more self-confidence. Self-direction is based on the importance of the motives to shape their own life. Patients should decide how they want to see their life and how the professional support has to be. In this regard a strong social network forms an important component for self-direction. Selfdirection is about patients that make their own choices and decisions. It stems from the right to have self-determination. While self-reliance is only the degree of doing everything on your own. Patients with severe mental health disorders: Patients with serious psychiatric disorders can’t function in different domains of their lives. These patients have serious psychotic disorder, such as bipolar disorders and other serious disorders on axis I and axis II of the DSM IV (GGZ Netherlands, 2011). I will discuss this in more details in chapter 3 of this research. Boosting/encouraging self-direction: Boosting or encouraging self-directions means that professionals can encourage the behavior of patients. The patients are motivated to be their own director in their life and treatment (Van Dale, 2013).

1.7 Importance of the search for the Social Workers 1.7.1 Relevance of the research This research is relevant to the field, because there are changes in the health- care sector. Professionals must adopt a different role in the treatments. Patients have to participate in the society and do it themselves or use the environment to achieve the participation. This is also known as the participation society. This requires a new attitude for professionals. Before the mental health care was supply-oriented, but now they are demand-oriented. The social worker clarifies the question and then determines how the patients can do it themselves or with the help of the social

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environment. Nowadays social workers don’t pay attention to the powers of the patients, his network, the street or district. Social workers solve the patient’s problems, so the patient can participate faster in the society. However, this backfires on the patient’s ability to be self-resolving. The developments in society demand a cultural change between patients and social workers. Such a change isn’t easy, because the patients are used to appeal to the Government institutions and healthcare system when they encounter problems. Another factor that forms a difficulty in obtaining such a change is the fact that social workers have always learned to solve problems for their patients and to support vulnerable people rather than giving them tools to tackle their problems themselves. With this research it can be examined how patients can get more self- direction in their lives. It contributes to the new policy (Welzijn Nieuwe Stijl) for professionals that work in healthcare (Invoering WMO, 2013) 1.7.2 Usability of research In this study the clients are Sjaak van Berkel of Bavo Europoort FACT Old North and Patrick Boyle of center of evidence based practice at Cleveland Case Western University, who specializes in the ACTmodel and has contacts with teams in Cleveland. By involving the clients as much as possible in the research, this research will be of more use to the involved parties. The clients will also be able to give me advice and guidance while conducting this research. In addition, the close co-operation will contribute in the reliability of the results (Verhoeven, when research; practice book methods and techniques for higher education, 2010). The results and the methodology will lead to new directives for the professionals. They can apply this in the treatment to encourage the self-direction of patients. 1.7.3 Innovative character of the research The subject in this study is: ‘from self-reliance to self-direction’. For years, patients have been encouraged to participate more in the society by doing volunteer work etc. Nowadays patients are living in the neighborhood instead of mental health clinics and they are encouraged to prevent social isolation by having daily activities. In the Netherlands they have a law called: ‘Law Social support’ which facilitates the participation of patients. In this current development, the government wants to go beyond just participation. The patients are expected to make their own choices and involve their environment to this end. They have to be less dependent on the mental health care system and the Governmental institutions. The Government must cut back, while patients are inclined to themselves to solve their problems. However in practice, self-direction is not encouraged by patients with severe psychiatric disorders. The reason is because they are a vulnerable group. In this research directives will be developed to encourage the self-direction concerning patients with severe psychiatric condition more.

1.8 The tassel This research is structured as follows. In the next chapter the organization is going to be described. In chapter 3 there will be a description of the target group. Subsequently the theoretical framework which includes an introduction to the central concepts from the research: self- reliance and selfdirection are given. In addition a description of the theories that describe the self-direction of people will be given namely the Capability approach and the Pyramid of Maslow. There will also be a link with theories and approaches from the United States. These theories and approaches can contribute in the development of the directives. The methodology is set out In Chapter 5. Hereby the methods that will deliver the results are being considered. The roadmap is described In Chapter 6. In Chapter 7

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the results of the part questions are described. Finally, in Chapter 8 the conclusion and the discussion will be described.

Chapter 2. Organization Description 2.1 Parnassia Group Netherlands FACT Old North is part of the Department of ambulatory treatment and support of adults of Bavo Europoort. Parnassia group is an organization within the mental health care (GGZ) with nine health businesses, including Bavo Europoort. In Parnassia group 90% of the care is clinical, outpatient treatment is 8% and 2% has part time care (Parnassiagroep, 2013).The mental health care organizations are located in different regions, such as North Holland, Haaglanden and Rijnmond. At Parnassia group decision-making on important issues, such as the restructuring of outpatient treatment is handled by the Board of Directors and the directors of the health businesses. Most of the mental health care organizations are since 2008 part of the Health Insurance Act (Trimbos Institute funding of the GGZ, 2012). Parnassia group uses a diagnosis Treatment combination (DBC). The DBC invoice is sent to the health care provider. In a DBC invoice the treatment is mentioned, the minutes for the diagnosis and other costs. The total time spent in minutes will be charged. Depending on previously created care costs, it might be that patients have to pay the treatment on their own. There are now over 40 ACT teams and 90 FACT teams in the Netherlands. A considerable part of these teams meet the principles of ACT and FACT and are qualified to obtain the certificate of the CCAF Foundation (Stichting Centrum Certification ACT and FACT, z.. j).There are a total of 18 FACT Teams in Rotterdam (BavoEuropoort, s.d.). In the following paragraph the FACT team in Rotterdam will be described. FACT Old North of Bavo Europoort The FACT-team is multidisciplinary and can consist of the following disciplines: psychiatrist, psychologist, experience worker, nurse, personal coach, addiction expert, and employment expert and specialist rehabilitation. The team uses dual management. There is a team leader Sjaak van Berkel and a team leader in the field of care, Niels Mulder. There are seven teams each with about seven to eight attendants. In each team there is a foreman according to the FACT-Model. The foreman is the link between the team leaders and the employees. For a description of the organization chart of Bavo Europoort I refer you to the annex. The purpose of the FACT teams is to stabilize patients by giving them insight into their disorder and by having they participate in the society. This is achieved by exploring the problems, tempt the patient into accepting mental health care, motivating them to accept treatment through and delivering high-quality of care. FACT provides long-term care to patients whose intensive treatment is necessary (Ebbers, 2013). The outpatient treatment of Parnassia Group is restructuring, whereby the IMR is going to be added together with the ACT teams. In the next part the transition of the ACT model to the FACT-model will be described.

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Transition of ACT to FACT FACT Old North uses the FACT Model. The F in the Dutch acronym FACT originally stood for function. The FACT team can function in different ways. It functions exactly the same way as an ACT Team, but it also has many more other functions. However the writer stated that the F can be used in English as ‘’Flexible’’. Standard ACT focuses only on the most severely ill psychiatric patients living in the community. These patients have risk of relapse, hospital re-admission and their medication and housing are unstable.(Bond,e.a.2001) estimates that this target group constitutes 20% of the longterm mentally ill patients in a population. So there is a group of 80% patients who are more stable, long-term mentally ill living in the community To combine the two groups in the Netherlands the FACT model is used. The whiteboard is an important aspect of the FACT-model that gives a review of the intensity in care for the patients. The whiteboards include specific sections with the names of patients who are at risk of dropping out, patients with whom the team has recently lost contact and patients who are hospitalized or in jail. Alongside each patient the casemanager is included with the information whether the patients have to be visited once a week or more. Multidisciplinary collaboration between case managers and psychiatrists facilitates the use of leverage (Weeghel et al., 2005), which is important in improving adherence to psychiatric treatment. Team members have different roles, with different degrees of intrusiveness. For example one member can use forced treatment, while another member can maintain a more neutral or closer relationship with the same patient. With this they prevent patients from dropping out. (Veldhuizen, 2007) FACT delivers 7 head products: 1) Cure 2) Care 3) Crisis intervention 4) Community treatment 5) Supporting client expertise 6) Control 7) Check Treatment is developed by the multidisciplinary directive schizophrenia. FACT ensures medication, psychological interventions, psycho-education, and family approach (Dutch Association for Psychiatry, 2005). If necessary the FACT team brings this actively to the patient. During crisis or recurring psychosis the FACT team will support the patients, so they won’t leave their environment and get treatment at a hospital and avoid hospitalization. FACT ensures symptom reduction through medication and therapies. In addition there is also attention for the multiple and complex questions from patients, such as substance use and opportunities for paid work. The FACT model utilizes experienced expertise/ peer support. Patients often have a disturbed relationship with their social environment. FACT teams aim to improve the interaction between patient and their environment. Family members get psycho-education through family nights and other interventions. The FACT-team is in some cases responsible for requesting permission to ensure the safety of patients. In this case pressure and forced interventions are applied when patients have reduced mental competency and are a danger to themselves and others. Differences and similarities of ACT and FACT FACT focuses on all patients, both the patients who do not require intensive community based care as well as the patients that have received intensive community based care for a longer time. The last group consists of the patients who are unstable with a lack of disease awareness and motivation for the treatment. Another difference is that FACT teams have more patients in the caseload, around 180-220 patients, while ACT teams have 100 patients in care. As a result, the team members know all patients, and it is a communal caseload. FACT teams mainly consist of an individual caseload (1 on 20-30) and co-operation take only place in certain patients. In an ACT team all patients are on the Whiteboard. While in a FACT team only the patients who need intensive care are displayed on the

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Board. Another big difference is that FACT-teams are operated in districts. Furthermore, ACT-teams are focused on stabilization and subsequent rehabilitation differs from FACT-teams that strongly focus only on rehabilitation. Similarities are that FACT team works outreaching and have a multidisciplinary team.

Chapter 3. Target description In the Netherlands a major proportion of the total burden of disease among the adult population is mental disorders. In a study by the Dutch Mental Health Survey and Incidence Study (NEMESIS-2) show that 1.896.700 adults (18%) had a mental illness in the past year (NEMESIS-2, 2010). About five percent of Dutch people suffer from severe psychiatric problems, of which means one percent of the population has very serious psychiatric problems. These are patients with complex problems in combination with an addiction or being homeless. The people who use long-term care receive about 62% care at home. About 13% stays in an institution. The rest of the patients stay at various homes and institutions (national platform GGZ, 2013).

3.1 Who are the patients with severe psychiatric disorders? An estimated 160,000 people In Netherlands live with a serious mental illness. A patient has a serious psychiatric disorder when a psychiatric disorder according to DSM IV has been reported. Also the presence of symptoms and complaints of the disorder is important. In addition, there must be a longterm course of the disease and restrictions in social and/or social functioning. The term serious refers to the combination of the condition with the restrictions of the disorder (GGZ Netherlands, 2009). Patients with severe psychiatric disorder suffer from different problems. They find it hard to make their own decisions and have difficulty with daily tasks. Social contacts are not obvious for EPApatients, because they have trouble developing and maintaining contact. In addition they suffer from a lack of energy, which is an obstacle when they try to participate in society. Also they experience cognitive impairment, such as lack of initiative, difficult interaction, slowed thinking, varying concentration and a misinterpretation of reality (Landelijk platform GGZ, 2013). Severe psychiatric disorders include disorders such as schizophrenia, psychotic disorders, but it can also be severe affective disorders like(depression, anxiety and bipolar disorders). In addition it can also be any organic disorders such as Autism, ADHD and severe addiction problems with comorbidity. Schizophrenia and other psychotic disorders are most common. Research says that an average of 55 percent is struggling with schizophrenia or any other psychotic disorder. 22% of patients with a disorder have a neurotic and personality disorder. The origin of disease is explained by an interaction between biological, psychological and social factors. The rhythm of patient’s ordinary life is interrupted. As a result, lifestyles and future expectations become distorted (GGZ Netherlands, 2009). 20 percent of the population is unable to lead a fully independent life. Because of multiple problems as a physical or mental limitation, debt or addiction temporarily or long term dependency of professional assistance. For three- quarters of this group it is a temporary issue. They lose their selfdirection for a period but some of them get it back by temporary support. The remaining 5 percent of the total need permanent support of the mental health care.

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3.2 The patients of Bavo Europoort In FACT Old North locations Bavo Europoort, there are currently 80 ACT patients and 90 regular patients. The ACT patients are frequently visited because they are unstable. The regular patients are stable and are less frequently visited. Most patients with a serious psychiatric disorder (EPA) are undergoing long-term treatment. However, there are also patients who prematurely discontinue treatment or are referred to the general practitioner. In FACT Old North there were 85 patients in 2011, 63 patients in 2012 and in 2013 only 50 patients (Quick Report: written out patients PBG to health business and reason deregistration). One reason for discontinuing treatment may be because the patients shunned care or are referred to other health care organizations. In addition, patients can also be written out because they commit suicide or death, move to another region or their whereabouts are unknown (C.L. Mulder, 2012). FACT focuses on the group of patients outside the mental hospital. The term that is used is long-term care in mental health care. The patients from this group have a serious psychiatric disorder, such as schizophrenia or psychotic problems. This often leads to complex problems restrictions on multiple habitats. It concerns people who usually had long-term care or still even need permanent care. The patients from the group live outside the psychiatric hospital. They live in their own home, alone, with their parents or partner. There are also patients who live in residential facilities. A small group of patients are homeless. In addition there is a group of alarming care avoiders. This group is seen as alarming because they pose a danger to themselves and their environment or by their psychiatric illness. From FACT they deploy intensive community-based care to these people to get them into care and continue treating them. Many patients have been treated in a psychiatric hospital regularly in the past and sometimes for a longer period of time. After their discharge from the hospital, they receive treatment by FACT and they are in the beginning of their recovery process. The patients in FACT Old North are adults between the ages of 18 and 65 years in Rotterdam. The patients often do not ask for help. The request are mostly coming from the environment of the patient, such as family, neighbors or others involved in the patient’s life. They report patients because they are worried about the state of health of their loved ones (van Veldhuizen, Bahler, Polhuis, & van Os, 2008). An example of a typical FACT patient from the Handbook FACT A 36 year old man of Dutch descent has been diagnosed with bipolar disorder since his 26th year. He has had some manic and depressive episodes in the past and has also been forced to get treatment in a psychiatric hospital. He uses lithium. The practitioner has teamed up with the patients to develop a crisisplan. The patient knows what to do when others tell him that he is happy and is not going to sleep. He currently resides in a protected living form and everything seems reasonable. He works and the social workers visits him once or every two weeks at his home or at his workplace. One day his manic episodes surfaced again when it shows that he has not taken his lithium for a while. The team is now visiting him every day to motivate him to start lithium again In addition they assist him by solving problems at work.

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Chapter 4. Theoretical framework 4.1 Introduction The theoretical framework is the perspective of this research. The goal is to work out the concept of ‘self-direction’. First of all some theories will be described, to determine what the visions are from different philosophers and researchers concerning self-direction. In the first chapter the vision of Martha Nassbaum and Amartya Sen will be described. An important aspect of self-direction is that patients have the ability to make choices. Nussbaum and Amartya Sen believe that each person should have the freedom to make choices in his/hers life. In the capability approach its clear what patients need to fulfill this desire. In the next chapter the pyramid of Maslow will be described. The different needs that are not satisfied can obstruct the process to self-development and self-direction. ACT was developed in the United States by Test and Stein (1978). As a result, the United States has more experience than the Netherlands with self-reliance and self-direction concerning patients with severe psychiatric disorders. When the theories and approaches are examined it can be verified how professionals apply self-direction. The Strengths model and Wellness Recovery Action plan are both approaches, where the self-direction of patients is important. In addition to the theories and approaches, it is important to clarify the concepts of this study. The concept of self-reliance is clarified by the measuring instrument, self-sufficiency matrix, which employees utilize. This will not be extensively described in the theoretical framework. The concept self-direction is discussed extensively by the four elements of Movisie. In addition, a closer look will be taken at the important aspects concerning professionals in encouraging self-direction. Chapter 5 contains the summary of the theoretical framework.

4.2 Theories 4.2.2 The capability approach Martha Nussbaum is an American philosopher and Professor of philosophy of law and ethics at the University of Chicago. Nussbaum has teamed up with Amartya Sen (Economist) and developed the ' Capability approach '. The question which they ask in this approach is: What is a person actually able to do and what real possibilities are there for them? Amartya Sen believes that the policy should be focused on what people are able to achieve quality in their life. The policy aims to remove obstacles so that people have the freedom to live how they want to. The policy also has to reassure that the people have their individual ability to make independent choices and deal with those obstacles. This allows an individual to develop and reach a State of wellbeing. The most important thing in this theory is that people have the freedom or the opportunities to live the life they want to live. (Robeyns, Sen's capability approach and gender inequality: selecting relevant capabilities, 2003) Nussbaum (200 00) states that there are ten main capabilities, whereby each man is capable to function properly: life, physical health, physical integrity, sense perception, imagination and

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thinking, feelings, practical reason, social ties, play and control the political and material environment. These capabilities are a directive to develop policies that enable people to live a proper life. The themes such as human welfare, justice and development are seen as the ability to function properly in society. In the next part the different components of capabilities will be set out. According to Amartya Sen ' capabilities 'are what an individual actually does and is. A capability for patients can be: a selfdirector over their own life. The self-direction will be described with the four aspects, ' Functions ', ' Freedom ', ' Resource ' and ' Agency ' of the capability approach. So it can be determined how these components relate to the EPA-patients (Alkire, 2005).

Functions

Freedom

capabilities

Agency

Recource

Figure 2.

Description of the four aspects The Freedom refers to the freedom to change the functions and achieve or apply it, such as work, being part of a group etc. When an individual experiences the freedom they will use these functions in their own life. The agency is the ability to set goals and to pursue a desirable way of life, but also the ability to deal with obstacles. The resources are the tools and facilities of which individuals use to achieve the functions. Functions and work Individuals must be given the opportunity to undertake their own activities to develop themselves. Amartya Sen calls this functions that make life worthy. An example of functions are working, power to rest, being able to read, being healthy, being part of a group, being respected etc. (Robeyns, The Capability Approach: a theoretical survey, The Journal of Human Development, 2007). EPA-patients have the desire for a paying job. Research shows that there is a strong link between having a paid job and self-direction (Lijzenga&Tideman, 2013). The financial reward for what they do is seen by patients as recognition and provides a contribution to their self-worth. The work must also connect to the level of the patients. There are patients who had prestigious jobs for their condition and now they sit in a Day Centre folding cases. Secretary of State, Jetta Klijnsma has set up a project called

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People with possibilities (MMMensen met mogelijkheden). She indicates that people with mental disorders have difficulties on the labor market. Employers do not want a patient, who may not operate properly on the work floor. With this project patients with psychiatric conditions are encouraged to participate in the society by having a paid job. ‘’People with possibilities’’ works together with employers and professionals of the mental health care (Project MMMensen met mogelijkheden, 2013). Freedom and stigmatization of patients Patients suffering from severe mental illness have limited freedom to be the own director of their lives. This is due to the obstacles caused by psychiatric stigma. International research shows four dominant negative images about psychiatric clients:    

People with mental illness are dangerous People with mental illness are unpredictable and unable to fulfill social roles People with mental illness are responsible for their condition Mental illnesses are chronic and have a poor prognosis (Hayward & Bright, 1997)

Dutch research gives the conclusion that the negative stereotypes in The Netherlands about people with mental disorders aren’t that negative. There is a distinction in the various disorders in which the respondents see aggression. For example, the Dutch population finds people with addictions more aggressive and sees people that suffer from schizophrenia as more reliable than people with depression. However in his research Kwekkeboom(2000) states that the psychiatric stigma will increase with the introduction of moving patients from clinics to independent homes in the society. The willingness to accept psychiatric clients will decrease as different researchers believe when more intimate contacts take place (Boon et al., 2005), (Heesbeen and others, 2006) (Van 't Veer, 2006). The Dutch population accepts a psychiatric patient as neighbor or colleague. However when someone with a mental illness wants to be a teacher or a babysitter for them, the population will not accept it. As one gets more often in contact with psychiatric clients more often, they accept people with a psychiatric condition faster than when they do not live nearby (Boon, &Nugter, Dijker, 2005). Consequences of stigma The psychiatric stigma has consequences for patients. Negative image about people with a psychiatric condition leads to discrimination. Research has been done about the experiences of stigma and discrimination among people diagnosed with schizophrenia (INDIGO). The research shows that respondents experienced obstacles at work, with family, social relations and mental health care. There is a high unemployment among psychiatric clients that leads to poverty and marginalization. In addition they have lost friends as a result of their condition and with establishing new contacts they face rejections once they disclose their disorders. Patients with psychiatric disorders also have less contact with family, because they misunderstand and neglect them. Another consequence is the NIMBY effect: protests by local residents at the arrival of a property or facility for people with mental illnesses. As a result, patients with a psychiatric disorder also feel alienated and not welcome in the neighborhood. Patients also indicate that stigmatization takes place in the mental health care. They find that the social workers treat them demeaning and suspicious (Plooy, Van Rooijen& van Weeghel 2008).

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Infringement of the self-confidence Another important consequence of stigma is the influence on the self-image of people with a psychiatric condition. The stigma is internalized in the patients themselves. The patients believe that the negative stereotypes are correct and that the condition ensures that they are less capable and socially acceptable than others. This makes it difficult for patients with severe mental illness to have self-confidence and apply self-direction in their life (Plooy, Van Rooijen, &Weeghel 's, 2008). Agency and disabilities of patients According to the capability approach by Amartya Sen, people must have the ability to pursue a desirable way of life. They must also have the ability to deal with obstacles. Because of the disabilities of patients it is hard for them to achieve their goals. For example, a patient may want to be a business manager, but because of his/her disabilities it is difficult to achieve this. In the psychiatric diagnostics the following psychological functions are distinguished; -

cognitive functions: awareness, attention, orientation, judgment ability, abstraction ability executive function, intelligence, memory, perception, self-and body perception, thinking affective functions: mood, affect, somatic mood equivalents conative functions: psycho-motor learning, mimicry and gestures, speech, drift life, willingness to live and behavior personality

Disabilities are shortcomings of the normal operations of the man dealing with himself and his environment. The disabilities are only noticeable when the environment is disturbed, because of the disabilities and reports it to the patient. The disabilities of patients with severe psychiatric disorders arise in a later stadium in their life. Patients with schizophrenia experience psychosis that can deteriorate many functions. Things that patients did before the psychosis cannot be done anymore. Patients feel powerless and this may provoke anger or anxiety. You can investigate disabilities through different ways. The disease-oriented way, the functional task analysis, the assessment of basic skills and with functional Diagnostics. If the disability is identified, it is important to treat this, so that the patients can participate in society. The underlying disease should be treated and the function must be trained. In addition, it is important that the compensatory skills are improved and resources are deployed. Medication, cognitive behavioral therapy and other treatments can significantly reduce function disorders. (Plooy, Van Rooijen, & van Weeghel, 2008). Resources for patients The resources are the tools and facilities which individuals use to achieve the functions such as work, being part of a group, being respected and acknowledged etc. Amartya Sen and Nussbaum assume

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that the Government should provide citizens the ability to lead a fulfilling life. In the Netherlands the social support Act issued(WMO). The municipality assures that the inhabitants can do their household, can move in and around the house, can move locally and can meet other people. In addition, from 2015 the WMO will also carry out the daily life and personal life structures. Each municipality has its own rules about what facilities they offer and what conditions there are to qualify for a supply. The municipality, first of all looks at what the person can do by himself and what the environment can contribute to compensate the difficulties (Buis, 2012). Later in the theoretical framework the Wmo will be described in further details regarding self-reliance.

Summary The capability approach of Martha Nassbaum and Amartya Sen focuses on the individual ability of citizens to achieve quality in their life. The question which they lay down in this approach is: what is a person actually able to do and what possibilities are there for them. The most important thing is that citizens are given the freedom and the ability to live the life they want to live. The '' capabilities are '' are what an individual actually does and is. EPA-patients are in this case the director of their own life to achieve quality and a fulfilling life. The four components of capabilities are Functions, Freedom, Resource and Agency. The Functions are activities that contribute to achieving a fulfilling life, such as work. Patients have a great desire for a paid job, though it is difficult to achieve because of the psychiatric stigmas. However, the financial reward gives recognition and a sense of self-worth. The Project ‘People with possibilities’’ has been set up to guide the group of patients to paid jobs. The Freedom refers to the freedom to change the Functions. An obstacle for patients is the psychiatric stigma, making them less confident. Agency is the ability to set goals and to pursue and deal with obstacles. For example, it’s hard for them to work, because they have disabilities. Resources are tools of individuals to achieve the Functions. The Wmo is a good tool for individuals to participate in society. According to the capability approach the themes human welfare, justice and development are seen as the ability of people to function properly in society. They must be given the opportunity to set up their own activities to develop themselves. Also in the pyramid of Maslow, the needs of selfdevelopment are the highest phase that a man must reach. How the pyramid of Maslow affects the patients will be described in the next part.

4.2.3 Pyramid of Maslow's The pyramid of Maslow is a well-known theory in social-agogic courses. The pyramid gives a view of different needs of people. The most important needs are given at the bottom, if these are not fulfilled, one will not reach with the other layers. The pyramid of Maslow consists of: Phase 1;the organic and physical needs. Phase 2; the need for physical safety and security. Phase 3; the need for social needs, such as social contact Phase 4; the need for appreciation, honor, respect and recognition Finally the final Phase the need for self-actualization. The need to live their life how they want it.

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Figure 3.

In FACT-Teams the treatment emphasizes on the achievement of the biological and security needs such as a place to stay and food (bed, bath and bread)there is a group of patients in the FACT-teams who are homeless. Also there are patients who experience a psychotic episode and are threatened to get thrown out of their home. In this regard it is important for the social workers to find a place to stay for the patients, before social needs can be achieved. The social workers need to take over the self-direction of the patient, so that the patient has bed, bath and bread. If this is not fulfilled the other needs cannot be achieved. More stable patients have generally voluntary work and a number of social contacts and maintain the self-reliance. However they reach the last need self-development filling in the personal development and their own life, with great difficulty. This is because treatment is focused on realizing structural daytime activities.

Summary The pyramid of Maslow has five different stages that indicate the needs gradually. Maslow states that only after satisfaction of the basic needs a human being can aspire to the higher needs. The first basic needs are biological needs, such as oxygen, drink, eat and sleep. The second phase is the security needs this means that human beings have the certainty that they are safe, for example having a roof over their heads. In the third phase, there is a social need. A human being needs to have social contacts. The fourth phase consists of self-esteem needs from respect to appreciation. The last phase means that man is in need of self-actualization. For EPA-patients it is difficult to achieve the last and highest stage, because the treatment is focused on the first three stages, a roof over their heads, food and social contacts.

4.3 The United States 4.3.1 The strengths approach Strengthsmodel was developed by Charles Rapp (1992) from the empowerment theories within the Social Work. Over the years in the development of the Strengthsmodel, the empowerment approach has been connected more to the recovery process of patients with severe psychiatric disorder. In the United States Rapp noticed that existing casemanagement teams focused on the connection between the patient and the mental health. The treatments were not focused on support in the home situation, while patients were interested in having work and leisure. In 1993 the model was officially part of the curriculum model of the social-agogic courses in Kansas. Meanwhile, the Strengthsmodel is utilized in over 40 States in America. The Strengthsmodel aims at strengthening every component, namely choices or options, authority and control. The ultimate goal is to seek action in the empowerment concerning patients. Without action empowerment is powerless. Rapp points out that the patients remain caught in their role as

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mental health- user, making them limited in their dreams and development of their identity. Through the Strengthsmodel the patient's own initiative can be stimulated. In addition, the Strengthsmodel focuses on the quality of life of a patient, his performance and satisfaction. This is for a large extent allocated to the type and quality of the niches or domains of life, which a person is located in. Rapp believes that functions, individual qualities and the qualities of the environment are the quality of the niches. An environment must enable a patient to develop. This is called enabling niche (Wilken, Het Strengths Model van Rapp: werken vanuit de kracht van cliënt en samenleving, z.d). Several studies show that the Strengthsmodel has good effects on the quality of life of mental patients and the skills of patients. Both dealing with stress sensitivity, self-management of medication and the everyday functioning of patients improved (Rapp & Winter stone, 1989; Kisthardt, 1993). Also practical and communication skills in living, working, learning and leisure are significantly improved (Modrcin et al 1988). In addition, research has shown that family members felt less burdened. Another study has shown that the Strengthsmodel together with the ACT model is a good combination for achieving more quality of life for patients with psychiatric condition. Also Rapp pleads for an aggregation of both models, because the principals of the ACT model overlap and connects each other (van Veldhuizen, Bahler, Polhuis, & van Os, 2008). The study compared the both methods (Barry et al, 2003). Many aspects of both of these methods had the same effect. However, with the Strengths model patients had a better progress on the area of functioning in the daily life. In a recent Dutch study there were small positive changes on the self-direction of patients (Wezep&Michon, 2011). Psychiatrists also spoke more on an equivalent way with the patients, making them more and more self-directed in their own treatment. A tricky aspect what the researchers noticed is that the case managers did not know when they can leave the responsibility of the patient and at what point they should intervene. Seven principles of the model The model consists of seven principles (Goscha & Rapp, The Strengths Model: Case Management with People with Psychiatric Disabilities, 2006) : Integration and standardization: Rapp implies that patients with severe mental illness also have the right to participate in society. The patients have access to social facilities, various options and possibilities and must decide where they want to live and work. Ecological perspective: The patient is always interacting with his environment and depends on them. The patient uses resources from the environment to solve their problems. There are three principles. The first principle is the principle of mutual independence. A part of the ecosystem changes the relationship between the other elements. This is seen with micro, meso- and macro level, which influence each other. An intervention which precedes an analysis of resources and forces is called a ‘’cycle principle’’. The third is called ‘Adaptive principle’, which aims to tune the environments and people. The interventions are aimed at skills that are applied or found in the surrounding area to create a custom environment. This may include niches (protected environment) in which the patient can apply the skills and talents. Resilience: Recovering from damage in the lives of the patients and to live without noticeable problems. There are seven factors that promote resilience: understanding, independence,

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relationships, initiative, creativity, humor and morality. Rapp believes that the social workers should adopt a respectful and caring attitude. Hope: The patients should be helped to establish future goals with a lot of hope, so they can achieve their ambitions more easily. Environmental forces: it is important that the patient uses the possibilities of the community, also called community development (Kretzmann & McKnight, 1993, Sullivan). The resources are identified, so that the patient can use them for their recovery. Recovery: Recovery is based on the theories of the rehabilitation. It is important that the patient has personal support from family or job contacts. Empowerment: according to the Strengths model, empowerment is an important component. Empowerment is described as a desired situation, where both options and powers have an objective and a subjective reality. There may be a degree of options for the patients but the patients have less power because the environment limits them. Patients are not being empowered and have lack of authority and control in their life. In addition empowerment can be influenced by subjective factors. A person can get a lot of choices, but in his experience, these options are limited. One reason may be that the patients are not aware of all the options available. A patient may also have insufficient confidence in himself and in the environment to actually have control over their life. For example, a patient may have the option to get a paid job, but because he has insufficient confidence he holds still with his familiar daytime activities within the daytime activities Center (DAC). Rapp argues that many patients still accustomed to a dependency relationship, in which the professional has the ultimate power.

Summary The Strengthsmodel has been developed to strengthen the choices, options, authority and control of patients. The American researcher Rapp developed this approach, because he noticed that patients remained caught in their role as GGZ user and as a result are limited in their dreams and identity development. By the strengths approach the patient's own initiative is stimulated. Furthermore, the strengths approach goes out from the quality of the patient, his performance and satisfaction. A large extent is allocated to the type and quality of life domains, in which a person is staying. Rapp argues that the environment should allow the patient to develop. The model consists of seven principles namely, integration and standardization, ecological perspective, resilience, hope, environmental forces, recovery and empowerment. The Strengthsmodel and the ACT model can be a good combination to promote the quality of life at EPA-patients. Because of the strengths approach patients learn to deal with stress, self-management of medications and it improves the everyday functioning of patients. Also practical and communication skills improve. A patient with a psychiatric condition has developed an approach for herself to utilize self-direction in their treatment. This patient’s name is Mary Ellen Copeland. In the next chapter the Wellness Recovery Action Plan by Mary Ellen Copeland will be described.

4.3.2 Wellness Recovery Action Plan (WRAP) WRAP is a self-help tool developed in America. The recovery, empowerment and peer support team (HEE-teams) is working on this instrument from 2011 in Netherlands. This self-help tool is based on

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principles as recovery, peer support and self-management. Mary Ellen Copeland developed her own WRAP in de 80’s, after she stayed in a psychiatric hospital for her condition. She herself experienced that the mental health care mainly consisted of treating symptoms with medication. The doctors or workers told her she could never lead a fulfilling life. Because of the WRAP she has taken back the direction in her life. From 1997 the method is used in the mental health care and the Copeland center in America supports the training and information for the WRAP. American studies (Cook, et al, 2011) show that the WRAP significant improves on symptoms and important psychosocial aspects of recovery (Fukui, et al., 2011). The WRAP is developed for patients who experienced long-term problems that have made them dependent and marginalized in the society. This instrument can be used by patients who are stable with serious mental illness (HEE-team, 2012). The purpose of WRAP is for patients to have an individual plan to achieve and maintain recovery by using ' wellness ' as a strategy and self-direct this wellness. In this method the actions, wishes and approach of the patients are emphasized. In addition, it is also about planning the responses and actions of the environment when the patient is unable to make his own decisions in crises. The WRAP training sessions are facilitated by patients. The aim of peer modeling is to give other patients hope and empowerment in their recovery and quality of life. In the WRAP training the patients learn selfmanagement skills and they fill in the action plan in which they indicate what they need to lead a pleasant life. In addition, the patients also indicate what they need when times are not going well. Concepts that are central in the WRAP are: hope, personal development, responsibility, standing up for yourself and support. These concepts are included in the training. The training is developed to give the patients tools for developing an own WRAP. The option is there to adjust the WRAP every time, because the process of recovery is also dynamic. (Boertien, Bakel, & Weeghel, 2012). Seven parts of the WRAP WRAP consists of seven parts adapted to the main objective: What do I need in order to feel good about myself. – Toolbox for a good feeling: a collection of affordable and easy ways to feel good. This includes small things such as a hot bath or hiking. -Daily maintenance plan: a list of things that the patient does or can do daily in order to feel good. In addition, the patient writes another list of things what he uses often or not that often, to make himself feel better. – Action plan for Triggers: a list of external stimuli that the patient has experienced before, that can nourish a crisis. This allows the patient to create action plan so that he can continue to feel good despite a certain trigger – Action plan for early warning signs: a list of early warning symptoms for moments that show when the patient has a possibility of having a relapse. We must act before the situation worsens. – Signals of slippage: the patient makes a plan for when he relapses. The plan aims to prevent the crisis. -Crisis plan: when a crisis could not be prevented, a clear plan is made as to what has to be arranged. The cooperation with the social environment is defined at this stage.

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– Post-crisis plan: In the post-crisis plan the transfer of the responsibilities of the social environment to the patient is described. Concrete agreements are made. (Wezep m. v., z. d).

Summary Mary Ellen Copeland developed the Wellness Recovery Action Plan (WRAP) in order to advance her own self direction and has brought this in a model. Patients establish a plan and choose who they want to involve in this plan and how they can make themselves better to achieve more quality in their life. The WRAP is developed for patients who experienced long-term problems, are dependent on mental health care and are at the bottom of society. In this approach the action, wishes and approach of the patients are inventoried. Peer modeling is an important aspect in the WRAP because the trainings are not led by professionals but by former patients. The patients are the peermodels for the patients because they have experienced something similar and they have now also recovered. In the training sessions the patients write an action plan, in which they indicate what they need to lead a pleasant life. Concepts that are central in the WRAP are: hope, personal development, responsibility, standing up for yourself and support.

4.4 The terms In this part the concepts are being described. Self-reliance is not widely discussed in this research because it is measured with the self-sufficiency matrix. However, it is important to have background information on this topic. Self-reliance is described here from the hospitalization syndrome and rehabilitation. These are concepts that both are linked with self-reliance. Patients who are hospitalized by having long term care in the mental health have insufficient skills to function independently in their everyday life. Rehabilitation was created, so that with the help of treatment, patients can participate in the society.

4.4.1 Hospitalization The American sociologist Erving Goffman (1961) studied the influence of institutions, such as prisons, monasteries, hospitals and psychiatric hospitals on the individual. He described this in his book Asylums (1961). Hospitalization is a major event. Long-term stay often leads to a hospitalization-syndrome. Hospitalization means the occurrence of changes in behavior, which may or may not be desirable, as a result of hospitalization and a long stay in a home (BTSG Info bulletin, 2013). The hospitalization syndrome is caused by an interaction between the individual/the occupant and its surroundings. In the institution the residents are subjected to rules. They are obliged to listen to these results. As a result, they lose skills such as initiative, creativity and ultimately their own independence. Some characteristics of the hospitalization syndrome: - Decrease in interest for themselves and others - Decrease of initiative, they find everything right - Depended behavior, accepting things as they are - Apathy - Disappearance of personal habits - Less social contacts - Negative self-image - No vision or interest in the future - Loss of enthusiasm, spontaneity

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Because of the changes in mental health hospitalization syndrome occurs less than it used to be. With hospitalization an individual can no longer fully decide about themselves. Nowadays a patient has more rights in a psychiatric hospital. Social workers, however, make accurate report on the behavior of a patient, the mood, how he has slept and discuss this in a meeting without the patient there. This situation does not happen in a normal social intercourse between adults, this influences the everyday life and the ability to function independently of patients (Algemeen, Praktische psychiatrie , 2009).

4.4.2 Rehabilitation When patients are fired from the hospital and they are back in their own living environment, the characteristics of hospitalization syndrome disappear. However, the dependency towards the mental health continues and because of that they cannot function in society. Social workers use rehabilitation methods for the patient to prepare himself for the society. The definition of rehabilitation according to Bennet (1978) is the process by which a psychiatric patient is helped by using remaining abilities, so they can function at an optimal level as normal as possible (Wilken & den Hollander, Psychosocial Rehabilitation, an integrated approach, 1999). Rehabilitation has two main schools of thought. The first one is the environment-oriented approach that focuses on the direct physical and social environment of patients (Watts & Bennett, 1991). The interventions are offering a small living area and places for day care in society. The second main school of thought is the development-oriented approach. This approach comes from America, the Boston University (Anthony, Cohen, Farkas, & Gagne, 2002). In this movement, the treatment works with different phases. It is also called the individual rehabilitation approach (IRB), which seeks to work with the patient to establish goals that he wants to pursue. The IRB is based on minimizing illness and maximizing health. An important starting point in the rehabilitation streams is to improve the honor of the patients. The honor refers to the way the patients have been treated over the years. In the previous chapter the consequences of hospitalization was discussed. The attitude of social workers, such as taking over practical matters, not taking the patient seriously, caused the hospitalization syndrome. In the rehabilitation method the attitude of social workers are characterized by solidarity, recognition, respect, equality and hope. Herewith the feelings of the patients after a radical experience will be repaired. In addition to repairing the honor of patients, recovery is also an important factor in the rehabilitation. Recovery is1 a process in which patients with a psychiatric disorder tries to give content and take direction of their lives again. In the rehabilitation method the social worker actively works with the patients and undertakes interventions to improve the living environment of the patients. The social worker activates the patient to consider daytime activities and entering into new social contacts. In short in the rehabilitation method, recovery, empowerment and self-reliance are used as a spearhead for the patients with severe psychiatric disorders (Plooy, Van Rooijen, & van Weeghel, 2008).

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The patient develops self-confidence, a self-concept beyond the illness, symptom management and a sense of wellbeing, hope and optimism about himself. He is fulfilling a meaningful life in a community of his own choice while striving to his/or her full potential: psychiatric rehabilitation journal, 2011 volume 34, no3 214222

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4.4.3 Self direction and self-reliance In the previous chapter I have described rehabilitation, which encourages self-reliance in patients with severe psychiatric disorder. Self-direction is in fact an extension of self-reliance. Where selfreliance focuses on participation ability and participating in the society, self-direction focuses on the own choices of patients. In this paragraph the two concepts will be defined, so that it becomes clear what the differences are. The scheme makes clear that self-reliance means that one can function independently in the society. It is important to determine what compensation a patient needs to be able to participate in the society. The Social Support Act(Wmo) connects this with the compensation duty in the Wmo. The compensation duty means that each individual situation has to have the most adequate supply so that a patient can participate in the society. This will compensate the limitation of the patients. The Wmo act tries to promote self-reliance among people with the compensatory services (Brink, Zelfregie, eigen kracht, zelfredzaamheid en eigen verantwoordeijkheid; begrip ontward, 2013). Selfreliance also indicates on the collective self-reliance among civilians. It emphasizes that an individual, despite his circumstances, that decreases his/hers self-reliance, can still participate in the society with the help of the social network instead of help from the government (Wet maatschappelijke ondersteuning, 2005-2006).

figure 4.

4.4.4 Pyramid of self-reliance The need for support does not occur at every layer of the population. Movisie2 has drawn up a pyramid where the dependence on support has been divided in different layers of the population (Brink, Zelfregie, eigen kracht, zelfredzaamheid en eigen verantwoordeijkheid; begrip ontward, 2013). They call this the pyramid of self-reliance. One percent at the top of the pyramid consists of the people who use intensive community-based care. This implies that for these patients availability of intensive community-based care (FACT-teams) and connection to regular care is important. This group has heavy psychic, mental or physical limitations, are permanently in clinics and cannot express their wishes and preferences. For this group help from social network is an important intervention. Four percent of the population depends on permanent support. They get help from multiple parties such as family caregivers, volunteers and professionals. It is important that the various forms of help are well coordinated and that case management is used. Patients that are located in the temporally dependent support benefit a lot from social workers that offer sufficient

2

Movisie is the rural knowledge Institute and consultancy for applicable knowledge, opinions and solutions. They address social issues of well-being, participation, social care and social security.

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space for the choices of the patients. Finally, the biggest layer is eighty percent who are independent. They are responsible for the citizens ' initiatives and volunteer work.

figure 5.

Summary Self-reliance has to do with a few of the aspects in this research: hospitalization and rehabilitation. Nowadays the hospitalization syndrome does not occur that much than in the early days. Though a lot of the patients with severe psychiatric disorder permanently use the mental health care. This makes them dependent on the social workers and the independent functioning of patients is therefore limited. With rehabilitation methods they can function properly in the society and become self-sufficient individuals again. Rehabilitation is a process in which a psychiatric patient is helped to use his remaining power to function at an optimal level that is suitable for the patient. Rehabilitation has two main schools of thought namely, the environmental-oriented approach and the development-oriented approach. In treatment, recovery, empowerment and self-reliance emphasized, so that the patient can participate in society. With honor repair the professionals approach the patient in a different way. Self-reliance is participating in the society dependently. To make this possible, the Government has developed a law since 2007 a law, called social support (Wmo), where self-reliance is the starting point. In the pyramid of self-reliance the different layers of the population are displayed and divided into dependency on support. Eighty percent of the population is completely independent and does not use any support. They contribute within the citizens ' initiatives and volunteer work. One percent of the population is the citizens who never will get their direction and are not self-reliant. In combination with the self-sufficiency matrix it can be determined at which layer the patients of the FACT are placed.

4.5 Self direction Self-direction means giving direction in your life with help from the social network to be selfsufficient and to participate. Movisie assumes that people experience self-direction when they can base their life on their own values and motives, as they have control over what they do and what happens to them. The competences and the own strength are needed to create own choices and to perform this. Another aspect is also that one can make optimal use of their own strength and sees recognition and support in their own environment. In addition to the definition of Movisie defines self-direction as the organizing/coordinating of an individual’s life with the aim of having a satisfying good life in his own eyes. It is necessary that individuals retain the self-determination as right and their own power as ability. This allows patients to take their own strategies as activity into practice. Taking direction in your life is also the ability to determine independently how he/she wants to live, work and the social contacts he would like to

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have. The right of self-determination arises from the human right to create own perspectives in life (Feiten en cijfers Movisie, 2013)

4.5.1 Four groups of self-direction Movisie drew up a scheme that makes the concepts self-direction and self-reliance more clearly by placing them in groups of people. On the left side they categorize the dependent people who use self-direction or put the direction outside themselves. On the other side there are groups who are both self-directed and self-reliant or are self-reliant but put the direction outside themselves. Individuals who are both self-reliant and self-directed are referred to as the independent group. In addition, there is a group that is dependent on help but makes their own choices and are selfdirected. They are characterized as the organizers. Individuals who are dependent on help, but fails in having the direction are called the patronized. This means that others determine the important choices for them. Finally the last group is called out ‘’of control’’. These are people who are unable to organize help, while they actually need it (Brink, Zelfregie, eigen kracht, zelfredzaamheid en eigen verantwoordeijkheid; begrip ontward, 2013).

Figure 6.

4.5.2 Four elements of self-direction Self-direction is about deciding and not about being independent and doing it yourself. The concept is worked out by using four elements, namely: ownership, own strength motivation and social contacts.

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figure 7.

First element: ownership Ownership is the core of self management/self direction. The patient decides his/her own choices and decisions. Ownership is also about the imagination of the patient. Autonomy and identity are important factors in this. Losing autonomy by for example a forced hospitalization has been a devastating experience for many patients. Patients with severe mental illness are vulnerable individuals. People in vulnerable situations do not feel autonomous all the time. Especially when patients have a psychotic episode in which the social worker intervenes in the situation of the patient. The skills of patients are reduced or they do not get the space and support of others. It requires a lot of power and energy to take back the initiative. Because of this, there are limits when we talk about self management. It may be that choosing and deciding will be a burden for them or they make wrong choices that could harm them or others (Cora Brink, Movisie, 2012). Second element: own strength The second element of self Direction is one’s own power. This indicates the ability of people to shape their own lives, such as strength, power and competence so that they can decide for themselves (Verkooijen l., 2006). This ability is achieved through knowledge, skills and self confidence of the patient. Own strength can be learned through consciously practice and experiment with making choices. Confidence and skills can be practiced by means of certain interventions, such as the poweroriented approach and the drama-and winners triangle. As a result, patients learn to increase their strength of choice. Third element: motivation Motivation is an important component in self direction. Patients who are motivated can express their own values and motivators. This makes it easier for the patient to stand behind his/her own decisions. Each individual has motivation and a desire in life. Sometimes patients can lose perspective, making them not motivated. Social workers should give courage, time and support so he can return perspective to the patient. The social worker must join into the dream and motivation of the patient, even though he/she thinks that it is not feasible. Otherwise the patient is prone to choose a dream or activity that is feasible in the eyes of the social worker and which is not his own dream.

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Fourth element: social contacts Usually one discusses decisions along with others to get a different perspective. A network ensures that patients get care, share fun and appreciation and offer each other practical help. In short, the network is a source of strength and support, that is mutual. Because of austerity by the Government more and more patients are obliged to depend on their environment .Patients with severe psychiatric conditions have small circle of social contacts. Because of their condition, they have also lost many friends and they find it difficult to make new contacts. With Own power conferences the patients can bring old and new friends together to find a solution and make a decision. In the Mental Health Care self management is an important aspect to realize self-direction in the treatment. This will be described In the following paragraph.

Self management In psychiatry self- direction can be encouraged by utilizing self management in the treatment. Selfmanagement refers to an active engagement of the health care consumer in dealing with his or her disorder, meaning that the person with the disorder is an active participant in care, rather than someone who simply follows recommendations and complies with the treatment plan developed by a health professional (Bisker, 2003). It implies that the patient is capable of monitoring the health and cognitive, behavioral and emotional reactions that contribute in having a satisfactory quality of life. However, self-management requires high demands on patients. They must have knowledge about their disease, know what the consequences are and what they can and need to do in order not to make the symptoms worsen and last of all prevent and control it. Patients should also be proactive in customizing their personal lives, so that they can deal with their disease in daily life and participate fully in society (Ursum, rich, heijmans, Ca, & s m, 2011). Forms of self-management in the mental health care are: E-health, setting up goals for the treatment plan, drawing up a crisis map, organize a own- power conference, Illness Management and Recovery (IMR) etc. Within the mental health care instruments and guidelines are developed so patients can cope with their illness. Patients receive psycho-education or cognitive behavioral therapy etc. Self management is however barely used in the psychiatry. A patient may have a relapse or disabilities whereby setting up the treatment plan is more difficult for the patient. Social workers are tempted to take over the things for the patient, so that for example the treatment plan can be handled faster. Because of the time pressure, high performance standards and protocols social workers are obliged to finish the treatment plan in a certain time. So they can send the DBC invoice to the health insurance (van Hout, et al., 2012). According to Goossen, nurse specialist within Dimence and lector at Saxion in the Netherlands, the mental health care must be more efficient. That means that treatment should be adjusted to the individual situation and choices of the patient. As a result, the adherence of the patient will decrease. The patient should be faithful to his own choices instead of to the doctor. This provides intrinsic motivation of the patient. There are not a lot of researches that show the effects of using various strategies for self-management. Goossens is doing research on patients with bipolar disorder with regards to self-management. He is now still working on conducting interviews with professionals and patients. With this research he can determine which determinants will succeed in selfmanagement.(Vermeer, april 2013).

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Patients often lack skills which results in professionals solving the patients problems so the patients get help faster and it takes less time. In the following paragraphs, the role of the professionals with self direction of patients will be described.

4.5.3 Professionals and self direction The policy that is focused on self-reliance and autonomy of the active citizens is an austerity policy. The politicians believe that the welfare state in the Netherlands makes the citizens passive. In a welfare state the government helps the people with a lot of arrangements and facilities. In the framework of the support act(Wmo) new assumptions are developed called Welfare new style(WNS). This has been developed for social professionals as new vision, attitude and approach (Central Government Introducing WMO, z.. j). Formerly the professionals took the responsibility and made the patient depended on them, so that the patient could participate in the society. The Government now expects the citizens to take their own responsibility. Working with self direction is not a revolution, but less and less professionals use this in their field. It is not intended for the patients to be left alone and have to figure out everything. But the professionals must balance when to take the responsibility or leave it up to the patients (Cora Brink, Movisie, 2012). It is expected that the professionals encourage the patients in their capabilities and power. The professional strengthens the skills and power of the patient. The professional has a good conversation about the responsibility of the patients and encourages him to take initiative. In this way he improves the selfdirection of patients.

4.5.4 The attitude of the professionals Professionals find it difficult to leave the responsibility with the patient. In the report "building together: vision and attitude for the social professional of the Organization", they give as reason that professionals like helping other people and solving problems .They want to ‘’help’’ the patients as much as possible , so that he/she can participate in society as soon as possible (van Hout, et al., 2012). This is called the reperationreflex.3 With this attitude patients can’t be autonomous. First of all, to gain more empowerment4 it is important that the professional has a positive basic attitude. Hereby a positive view of humanity is necessary as well. As professionals you have to assume that every person wants to lead an acceptable life. Each man can solve his own problems and they also have the right to plan their own life and responsibility. Regardless of the psychological condition of a patient. Characteristics of a positive attitude; -

patient is the centre of the conversation not his/her problems; assume that everyone has strengths and wants to survive; search for the complaints and the talents of the patient together; to motivate people , create a perspective; pay attention to the social environment of the person.

In order to encourage the power of patients, it is important as a professional to ask about the talents of the patients and how they have solved his previous problems. The social worker recognizes the 3 4

Reperatiereflex: the tendency of social workers to get straight with solutions and advice. Empowerment: a learning process in which you become a master again of your own existence. You dare to

make your own choices again, using your own strength, power and capabilities.

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suffering of the patient, so that the positive side can be inventoried. In addition, the social worker trusts the strength and the decision making ability of the patient and supports him with finding their skills. It is also important that the social worker gives the patient space and encourage the patient to try new things (Cora Brink, Movisie, 2012).

Summary Patients experience self-direction as directing their lives based on their own values and motives. They also have control over what they do and what happens to them. One needs their competences and strength to create their own choices and carry them out. Self direction has four elements which are linked to each other . A patient has to own every element of the self-direction in order to implement it in their life or treatment. The elements are ownership, own strength, motivation and social contacts. Patients can be divided into four distinct groups. Patients who have become independent and self-reliant and self directed. Individuals who are self-reliant and are self-directed are referred to as the independent group. In addition, there is a group that is dependent on help but makes their own choices and are self-directed. They are characterized as the organizers. Individuals who are dependent on help , but fail in having the direction are called the patronized. This means that others determine the important choices for them. Finally the last group are called out of controlpatients. These are people who are unable to organize help, while they actually need it. In the mental health care self direction is utilized with self management in the treatment. Self management refers to an active engagement of the health care consumer in dealing with his or her disorder, meaning that the person with the disorder is an active participant in his own care, rather than someone who simply follows recommendations and complies with the treatment plan developed by a health professional. Due to time pressure and performance standards social workers do not have the ability to let patients use self management in their treatment. There are new ideas in the context of the WMO that will change the attitude of the professional. This is called welfare new style. In the past, social workers aimed at solving patient’s problems, nowadays the social worker encourages the patient to take initiative and the responsibility lies more with the patient.

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Chapter 5 Summary theoretical framework The capability approach of Martha Nassbaum and Amartya Sen focuses on the individual capabilities of citizens so that they can live a fulfilling life. It is important that FACT-employees take into account that patients have the right to make their own choices, so that they can shape their lives the way they want to. In addition, it is important to understand what the obstacles are of patients. The obstacles are stigmas and disabilities. So the Fact-employees should consider that these obstacles occur when they are encouraging self-direction concerning EPA-patients. According to the capability approach, the themes of human welfare, justice and development are seen as the ability of people to function properly in society. They must be given the opportunity to arrange activities to develop themselves. Also in the pyramid of Maslow the needs of selfdevelopment are ranked as the highest stage of what a man can achieve. If patients remain focused on fulfilling the bottom three stages, they do not get the opportunity to develop themselves, while Nussbaum and Amartya Sen suggest that taking opportunities are very important. FACT-employees specialize in crisis-and case management. It is therefore important that employees solve the crisis and focus on the following stages, so that they can eventually take inventories with the patient on how they can lead a fulfilling life and develop themselves. In the United States they are already further with the self-direction concerning patients because many approaches and methods originally are from the United States. The Strength model, a model developed from the empowerment approach to strengthen the choices, options, authority and the right of say concerning patients. The American researcher Rapp developed this because he noticed that patients remained caught in their role as mental health care user and as a result remained limited in their dreams and identity development. By the strengths approach the patient's own initiative is encouraged. In addition, the strengths approach aims at the quality of the patient, performance and satisfaction. Mary Ellen Copeland developed the Wellness Recovery Action Plan (WRAP) in order to promote her own self direction and developed this in a model for the behavioral health care. Patients establish a plan and choose who they involve and how they can recover, so they can have a quality of life again. Self-reliance has to do with a number of aspects: hospitalization and rehabilitation. Self-reliance means that patients can function again and get involved in the society. In the pyramid of self-reliance the different layers of the population are divided into their corresponding dependence on support. In combination with the self-sufficiency matrix it can be determined on which layer of this pyramid the patients of the FACT belong to. On the other hand, self-direction is an extension of self-reliance. Besides the fact that patients with severe psychiatric disorder should be able to participate in society, it is also important that they give self-direction in organizing their own lives. Self-direction has four elements linked together. A patient should have to apply each element so self-direction in their life or treatment. In the previous chapter several groups of self-direction was described. In this study, the attention will be focused on the out of control-patients who are self-reliant, but who put the self-direction outside themselves. This study seeks to boost up the self-direction of the independent patients who are self-reliant but not selfdirective.

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In the mental health care self-direction is applied with self-management in the treatment. As a result of time pressure and high performance standards care takers do not have the opportunity to allow the patient to be self-directive in their treatment. Another obstacle for employees is the way of working. In the past, care takers attempted to solve the problems of patients, nowadays care takers have to encourage the patient to take the initiative and leave the responsibility with the patient. In the context of the Wmo there is a new reference points of thinking developed for professionals: namely Welfare new style. The concepts and theories that have been developed will be a good tool during the research. It gives a picture of in which direction the research will lead, namely in improving the quality of life concerning patients with severe mental illness through self-direction. The approaches all aim at the same thing, in other words improving the quality of people's life. This is done by citizens themselves to make choices in their life. There are some aspects that can form an obstacle for boosting selfdirection especially disabilities, psychiatric stigma and the hospitalization syndrome. To encourage self-direction, it is important to use the four elements of self-direction as starting point, namely ownership, own strength, motivation and contacts. A patient must be in possession of all four elements to be self-directive in her/his life to have a quality life. In the next chapter the concepts will be further handled.

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Chapter 6. Methodology This research for self reliance and self direction concerning patients with a serious psychiatric disorder is a qualitative research. This means that the research is carried out in practice. Whereby the meaning that people who are participating in this research give will be of great value . The attention will be focused on the experience of the participants and observations by the researcher. In the framework of this investigation part of the examination will be held in the Netherlands and another part in the United States of America (USA). By practical reasons dichotomy is applicable. In America the research will be connected to various ACT teams in Cleveland. The main question is an explanatory question type, only focused on the Netherlands, because America is involved only in the chapter search results and will give answer to the question. As a recommendation, the American findings will be in place. The research group will be described In this chapter. After that, the data collection method and how the two part questions are resolved will be shown. Finally, the measuring instruments, the procedure and analysis of the data will be described.

6.1 Research Group This research is being conducted at FACT Old North, Bavo Europoort and in Ohio, USA. There are two groups of patients in a (F) ACT-team. The ACT-patients, who need more intensive care and regular patients. This research is based on the regular patients, because they are more self-reliant and more stable. Movisie calls this the out of control-patients (Brink, Movisie, 2013). In the FACT team Old North ninety patients belong to the regular group. Thirteen patients are self-reliant according to the self-sufficiency matrix and with this group self-directed should be encouraged. In addition three F(ACT) members, two family members and four clients of the client council are interviewed. In the United States four professionals and one patient are interviewed. In total the group consists of twenty-seven respondents. It is not a valid research, because the size of the group is irrelevant. In America the researcher will be linked to an ACT Team in Canton and in Columbus. Here the researcher can do observations about how the care takers encourage patients to be self-directive and how patients anticipate on this.

6.2 Data collection method For this study observations, interviews and literature review are used in order to achieve the qualitative research. They will exploit three qualitative and quantitative methods to obtain information and data. This will make the research reliable, useful and valid. The use of three different methods is called triangulation, which strengthens the reliability. The research will be useful, because it provides insight on patients with severe psychiatric disorder which will be useful for both organizations . With the results both organizations could study the self-direction further. In the next part methods used in this research will be considered. The quantitative method The quantitative method is the assessment form of the self-sufficiency-matrix. The degree of selfsufficiency-matrix is a quantitative method, because of the numerical information. This gives a precise information of the self-reliance of patients with severe psychiatric disorder. Also this increases the validity of the research results. Details about the part questions will be worked out more specifically.

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The qualitative methods Interviews: In this research Interviews will take place to obtain data and information. The professionals of FACT Old North will be interviewed on how to encourage self-direction and how to implement this in the treatment. Experiences about boosting self-direction by professionals, the client’s council and the social network through the interviews will be clear. This is carried out in interviews (Swanborn, 2002). For part one questions and part two a half structured interview will take place. On one hand there is enough space for respondents to answer, on the other hand, there is still guidance in the interview. Literature study: Another qualitative method used is literature study. The articles on self-reliance and self-direction provide background information for the preparation of interviews and observations. This is used during the operationalization and for encryption for the observations and interviews. In addition, the articles will be a good substantiation for the chapter results. Also in part question one literature study will be used to examine existing directives. Observations: For this research observations will take place. The behavior is studied to gain insight from the observable characteristics of self-directive behavior. Most observations are going to be held in the ACT Team based in The United States of America. The research will take the form of a structured observation. The elements of self-direction will be the guiding principle of the observation. The respondents will be informed that an observation will be taking place, however, the patients are unaware that it is about self-direction. This can prevent patients to pretend that they act like they have the elements of self-direction while they do not. With encoding the subjectivity of the observation will be kept small. The concept of self-direction will be converted into measurable behavioral categories so the researcher can observe the behavior. With the literature study it is already known what behavior occurs, however this should be described more specifically. The intersubjectivity of the observation will be achieved by making the codes public for the employer of the FACT team and the social workers. Also the intersubjective can be enlarged by making selections. This means that a number of aspects of the behavior is observed. With a log all the observed behavior are tracked and noted. This makes it also possible to grade the observed behavior (Verhoeven, Wat is onderzoek: Praktijkboek methoden en technieken voor het hoger onderwijs, 2010). 6.2.1 Sub question 1: What kind of ways are there to encourage self-direction The answer for this sub question is going to be answered through the interviews and observations in the Netherlands and the United States. The interviews will be summarized so the important aspects of encouraging self-direction will be exploited. An important aspect is involving the social network of the patients in encouraging the self-direction. . To get answers to this interviews are being held. So the opinions about promoting self-direction are clear. The social network may have a different opinion than the social workers. In addition client councils have a lot of knowledge about encouraging self-direction since they themselves have been or still are patients in care. 6.2.2 Sub question 2: Which EPA-patients in FACT Old North are self-sufficient This part question will be solved by using the self-sufficiency matrix for patient with severe psychiatric disorder. In this feature the evaluation tool will be explained.

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The degree of self-sufficiency-matrix The self-sufficiency matrix(ZRM) is originally from America by the Utah Homeless Management information system. The ZRM is developed in Netherlands by researchers, executive professionals and policy officers and workers of the mental Health Care in Amsterdam, income services, social affairs and employment and a large number of employees of different institutions from the mental health care, substance abuse treatment, social care and social rehabilitation. With the selfsufficiency-matrix (ZRM)a standardized assessment of the self-sufficiency can be given. Organizing, retain and or reducing professional assistance is essential is this aspect of self-sufficiency. It is also important to determine whether the person actively or passively asked for using the professional assistance and this weighs in the score on the ZRM. The degree of the self-sufficiency matrix is a snapshot. With the ZRM the functioning of the patient can be examined. The ZRM is classified in five levels of self-sufficiency. The lowest level on the scale is minimum self-sufficiency. The highest level is maximum self-sufficiency. The scores between one and five with a short description indicate: an acute problem, non-self-sufficiency and fully selfsufficiency.. For each level on each domain there are indicators. The indicators cover important issues and characteristics of the domain and reflect the level of self-sufficiency on the domain. The indicators provide handles for the reliable assessment of the scores. The situations of the patient are compared with the criteria described in the cells of the ZRM. The different domains on which can be scored: finance, day care, housing, family relationships, mental health, physical health, addiction, ADL-skills, social network, social participation and justice. (Lauriks, Buster, De Wit, van de Weerd, & Tigchelaar, 2013) To collect information for the assessment different sources can be used. Especially the patient himself, colleagues and administration, such as files are helpful. The ZRM is often used during the intake phase, progress or outflow conversation with patients. The patient can then choose how low or high he scores on the various domains. Bavo Europoort uses the ZRM to apply for social care for the patients. Information can also be provided by colleagues or partner organizations that are contact in the patient. The third source of information can be obtained by using recent reports in registration systems, case registers and client files. 6.2.3 Sub question 3: How can the encouraging methods of self-direction be implemented in the FACT Team Old North When it is made clear which patients are self-sufficient through answering sub question 2, the implementation of self-direction concerning EPA-patients will be investigated. It is important to find answers on which attributes are observable in self-direction and how this can be entered in the treatment. In this study directives are developed for encouraging self-direction for the FACT employees. However it should be examined how the employees will get to know the directives and how they can use this with their patients. The team will use the guidelines correctly. With the introduction of the results, the help and/or care will improve answers through interviews and observations with the FACT team.

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6.3 Measuring instruments Operational capability: In what way can patients with a serious psychiatric disorder, who are already self-sufficient in FACTteam Old North, outpatient team be encouraged to self-direction. 1. Encouraging has to do with: -

the degree of motivation in patient the degree of confidence in the patient the degree of presence of stimuli from the environment’

Part aspect Degree of motivation of the patient

Degree of confidence of the patients Degree of the present of the stimuli in the environment Part aspect Degree of motivation of the patient

Observable to measure Yes

Yes No

Observable to measure Yes

How is it observable The patient radiates energy, enthusiastic and is actively seeking for solutions. Observable with observations Observations, question them -

How is it observable The patient radiates energy, enthusiastic and is actively seeking for solutions. Observable with observations Observations, question them -

Is this measuring what I want to know? yes

Yes yes

Is this measuring what I want to know? yes

Degree of confidence Yes Yes of the patients Degree of the No yes presence of the stimuli from the environment 2. the degree of presence of stimuli from the environment has to do with: -

The social workers delegate the tasks to the patients. The social environment provides support and recognition in the dreams of the patient

Part aspect

Observable to measure

How is it observable

The social workers delegate the tasks to the patients.

Yes

Observations and question them

Is this measuring what I want to know? yes

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The social environment provides support and recognition in the dreams of the patient

Yes

Question them

Yes

3. Self-reliance has to do with: -

Degree of social independence: the patient has leisure, colleagues and friends Degree of relational reliance: the patient is able to have and retain contacts and relations. Degree of practical independence: the patient can take care of themselves and perform daily activities such as cooking, washing, dress up, shopping, household

Part aspect

Observable to measure Yes

How is it observable

Degree of relational reliance

Yes

Degree of practical independence

Yes

Few characterizes of hospitalization syndrome

Yes

Analyze with the ZRM if the patient has social contact Inventories with the ZRM how high the patient score with caring for himself Observations and questionings

Degree of social independence: the patient has leisure, colleagues and friends

Analyze with the ZRM if the patient has day care

Is this measuring what I want to know? yes

Yes

yes

4.self-direction has to do with: -

Ownership: degree of making choices and decisions in the patient's own life Own strength: the ability to make decisions. Motivation: levels of motivations in patients Degree of existing social contacts

Part aspect Ownership

Observable to measure No

Own strength

No

How is it observable

Is this measuring what I want to know? yes

Yes

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Motivation

No

yes

Degree of existing social contacts

No

yes

5. Level of making choices and decisions in their lives has to do with: -

How often patients dare to control the conversation. The patient takes the initiative in solving his/her problems.

Part aspect How often patients dare to control the conversation.

The patient takes the initiative in solving his/her problems.

Observable to measure Yes

How is it observable

No

Observation and questioning

Observation

Is this measuring what I want to know? yes

Yes

6. The ability of making their own decisions has to do with: -

How much self-knowledge the patient has. How often the patient takes his responsibility How mouthy and recognize his own strength on the different habitats. Degree of confidence of the patient How much space does the environment give to the patient make their own decision.

Part aspect

Observable to measure Yes

How is it observable questioning

Is this measuring what I want to know? Yes

How often the patient takes his responsibility

Yes

Questioning

Yes

How mouthy and recognize his own strength on the different habitats.

Yes

Observation and questioning

Yes

How much selfknowledge the patient has.

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Degree of confidence of the patient How much space does the environment give to the patient make their own decision.

Yes Yes

With the ZRM or questioning interview

Yes

7. Level of motives of the patients has to do with: -

Knowledge about the meaning of life Patient knows what he wants to achieve/ dreams are in life

Part aspect knowledge about the meaning of life

patient knows what he wants to achieve/ dreams are in life

Observable to measure Yes

How is it observable

No

Observation and questioning

Look into the client files or take part in a meaning of life meetings

Is this measuring what I want to know? No, because not every patients meaning of life is clear

Yes

8. Level of contacts has to do with: -

The patient gets appreciation and fun with and of others The patient has someone in his environment that offers practical help and gives that back.

Part aspect the patient gets appreciation and fun with and of others

the patient has someone in his environment that offers practical help and gives that back.

Observable to measure Yes

How is it observable

Yes

Observation and questioning

Question

Is this measuring what I want to know? Yes

Yes

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9. Serious psychiatric conditions has to do with: -

Problems in the areas of life: housing, finance, social functioning, physical functioning, psychological functioning, sense of purpose, practical function, day care The presence of symptoms and complaints of the disorder A long-term course of the disease Limitations in social and/or social functioning

Part aspect

Observable to measure Yes

How is it observable

the presence of symptoms and complaints of the A long-term course of the disease

Yes

Look into the client file and diagnose

Yes

Yes

Question how long the patient is in treatment

Yes

limitations in social and/or social functioning

Yes

Look into the GAF score

Yes

problems in the areas of life: housing, finance, social functioning, physical functioning,

Look into the client files and with the ZRM

Is this measuring what I want to know? Yes

10. How can the encouraging methods of self-direction be implemented in the FACT Team Old North Implementation has to do with: -

Change is integrated into the functioning of the organization Setup/plan: how will the directives be decorated Run/do: how will the directives be in motion Monitors/check: how to follow the new directives

Part aspect

Observable to measure nee

How is it observable

Is this measuring what I want to know? Yes

Setup/plan: how will the directives be decorated

Yes

Interview

Yes

run/do: how will the directives be in motion

Yes

Observation and interview

Yes

change is integrated into the functioning of the organization

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monitors/check: how to follow the new directives

Yes

Observation or evaluation assessments

No, because I only measures how the FACT-employees use the directives. Here is my research too small for

11. Change that is integrated into the functioning of the organization has to do with: -

Directives are in used in every contact with the patient Others note that the team uses a different approach The team involves the social environment in encouraging self direction

Part aspect

Observable to measure Yes

How is it observable

Others note that the team uses a different approach

Yes

Interview or with evaluation assessments

The team involves the social environment in encouraging self direction

Yes

Observation and interview

Directives are in used in every contact with the patient

Interview employees, patients can fill in the evaluation assessments

Is this measuring what I want to know? Yes

No. Only after a longer time the environment can verify if they noticed the change. Yes

6.5 Procedure While I was waiting for the assessment of the research design, I reached out to the client council and the team members of the FACT team. I have emailed the client council twice before the coordinator of the council called me. He asked if I wanted an one-on-one conversation with him of speak to all the members of the client council. However he mentioned that the other members weren’t that interested in answering my questions and he was the only one that was interested. I planned to speak to all the members but if only he was interested, I wouldn’t mind interviewing him alone. At the end he tried to convinced the members and I was able to interview them all. On the family evening at FACT Old North I explained my thesis topic to the family members. Afterwards I asked if they wanted to be interviewed. I forgot to ask if they had any questions. I wrote my mail and number on a paper and gave it to the family members, so that they can think about it and contact me. Three family members mailed me back and I made an appointment with them. I did one interview at the office. Another interview was taken place at her work. I told them that I would record the interviews and not use their name in the research. I also explained what my research is about and what the definition of self-direction is. Then I went to my internship to choose the degree of self-sufficiency through patients from EVITA and the matrix. I had an appointment with the counselor that is in charge of social care. She uses the

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self-sufficiency matrix and EVITA a lot. From the conversation it turned out that I can’t use EVITA for my research. I thought that EVITA will give a overview of the patients scores but unfortunately EVITA only a few patients of several teams were scored. So I had to find another way to screen the patients on their self-reliance. They advised me to select the patients on the FACT whiteboard with case managers and then score the patients with the degree of the self-sufficiency matrix. I could make a clear distinction of the perception of the case manager and the degree of self-sufficiency. The plan was to select the patients with all the team members in the Tuesday meeting, because then they all the patients will be discussed. But I went to a Tuesday meeting and eventually one of the case manager said it was better to select the patients with only him. That was a lot of work so in retrospect I understand why it is better to screen the patients with one case manager. He selected twenty patients and from the twenty only thirteen were self-reliant according to the self-sufficiency matrix. We initially thought that the patients would score a three on self-reliance but the matrix showed that they scored even higher than a four. After screening the patients I asked the case manager some questions. I reached out to the other case managers at the office. I went to their rooms and we sit and made an appointment. Another case manager i reached out through Facebook to get her email. I emailed her about my research and asked if I could interview her. Though he is not from the same team as the other case managers, they still work at the same office and use the same FACT method. The interviews were all longer than I expected because the turflist/scorelist takes a lot of time. But I managed to ask most of the questions to the case managers. Ohio, United States In the United states Professor Boyle arranged the sights to visit and we drove to the sights. He was able to contact two ACT Teams. One in Columbus and another in Canton. The appointment with Columbus was a short notice, but a productive day. I introduced myself and didn’t tell the case manager what the behavior categories were. Otherwise the case manager might act according to the list and not according to how she approaches clients . The first visit was a crisis. The patient has not taken her medication for a few days. The team is concerned and know she can decompensate very quick. This is the second time in a few days that a professional visited her. I didn’t do any observations, because she didn’t belong to the target group. At the next visit we went to a young man who is chronically depressed. He lives with his mother and father. I doubted if I had to take my observation paper with me and score the categories in front of them. The professional introduced me to the patient. I decided to not take the form with me and just observe the conversation. I have done this, because if the patient would see me with forms he might feel nervous or suspicious. So I thought if I would have an open attitude he would be more likely to be open in the conversation with the case manager. In the car I filled in my form and scored the categories I have seen. I also took the moment to interview the case manager. In the next visit we went to a psychiatric hospital to visit a patient who will be dismissed the next day. I took the opportunity to asked two questions. I wasn’t able to ask more questions because I had no time left. Eventually the answers of the patients weren’t enough to use in my research. In Canton I did a group interview with two professionals and one nurse. I told them that I would record it and after the interviews I went into the field and did my observations. I had introduced myself to the case manager and explained that I will pay close attention to the interaction between

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her and the patients. The first visit was a patient who had to go to the doctor The observations didn’t go well. The case manager had three contacts and that were all short visits, causing me not to observe the interaction between the case manager and the patient. In an ACT team the contacts are often briefly.

6.6 Analysis of data The research will be written in English, because the research will be partly conducted in the USA. This allows the professionals in Cleveland to also read the research. The results of the self-sufficiency matrix will be attached. The interviews will be literally written out and developed into a verbatim. The place and time of the interviews will be described as well. The time estimate for the interview amounts thirty minutes and writing out the interviews will take three hours. For the observations all the behaviors will be described. After all these methods the researcher will give a reflection about the interviews. In addition, the data will be encrypted first. There are three forms of encoding (Strauss and Corbin, 1998): open encoding, axially encoding and selectively encoding. First of all the texts and fragments will be classified. The relevant fragments are then tagged and compared with each other that is open encoding. Different themes from the turflist/scorelist were people had an opinion about where placed together. The themes in the interviews in The Netherlands are: Protection and responsibility towards patients with severe psychiatric disorders, Initiative and solutions , Skills and competencies, Calling to other organizations to arrange things, stigma and imaging , dreams and wishes and Social network. In the United States the themes were different because an different angle was used. The questions were partly based of the theoretical framework and some questions from the Netherlands. Some themes came back in the answers of the questions. The themes are: Authority and control of the patients, responsibility and protection, stigma and Imaging, skills and competencies, dreams and wishes of patients, social network and American strategies for self-direction in FACT teams. The observations were analyzed by writing a summary of the amount of behavior categories were scored.

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Chapter 7 the roadmap Introduction In this chapter how and what activities that are going to be performed will be described. The time frame work in which these activities will be carried out will also be shown. In the preparation phase the preparations needed for this research will be described. Then the implementation phase will also be described. . Because I will do researches in America, my date of graduation will be delayed. Finally, the concluding phase will be described.

Preparatory phase In this phase I will concentrate on making the interviews and observation categories. I will invite the parties for the interviews. I will carry this out from February/March. In addition I will be preparing for my exchange to the United States. It is important that my research draft is translated in English.

Implementation phase In this phase interviews and observations will be performed. I want to travel to Cleveland in the middle of March or early April. So I have from February to March to perform my Interviews in Netherlands. In America I will immediately start with the observations. In the meantime I will process the Dutch data. To analyze the data from the Netherlands and America I need at least a month.

Concluding phase In this phase I will write my research results, conclusion and recommendations. I will discuss this with my client in Rotterdam. After that I will announce the final result and defend this. I will come back from America in June/July and I want to be able to defend the results of my research at the end of August. I have to discuss with my evaluator when I can hand in my Thesis.

Timetable goals: -

I want to graduate with a delay of one month(august) I want to work on my thesis for four hours a day. I will perform this at the Erasmus University Library. I want to write and make preparations for funds for America in February.

To do list -

Contact client council and the person who is responsible for the family evenings for the interviews. Prepare the interviews Translating the draft in English Make a budget cost for America.

Deadlines In this part the deadlines are indicated. Because I go to America I will deviate from these deadlines and will be delayed. I want to keep my defense in August at the latest. It is therefore important that I meet with the evaluator on time to make sure when I can give my piece. Week

Date

What

Who

Period 1

6 september

Hand in proposal

Student

Remarks

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assignment at graduation Coordinator 2

7 january

Directive handing research design

Student

5

28 january

Deadline 1e attempt research draft

Student

8

18 february

Feedback rating Assesssor and 1st attempt coach research design

15

7 april

Deadline concept end product 1eattempt

Student

18

28 april

Feedback rating concept end product

Assessor and coach

16

15 april

Deadline 2e attempt research draft

Student

Rating 6 mei

18

29 april

Deadline concept end product 2eattempt

Student

Only for students who have not yet handed in their concept.

19

6 may

Deadline 1e attempt end product

Student

Rating 27 mei

19

6 may

Feedback research draft 2eattempt

Assessor

Feedback rating 1e attempt of the end product

Assessor

Deadline 2e attempt handing

Assessor

22

23

27 may

6 june

Rating 18 februari

Rating 28 april

Coach

Coach Rating 27 juni

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end product

Coach

25

18 june

Hand in propositions

Student

26

27 june

Feedback rating 2e attempt end product

Assessor

Defense for students end product 1eattempt

Student

26

23 t/m 27 june

Coach

Coach Assessor Cliënt

27

30 june, 1 t/m 4 july

defense for students end product 2e attempt + second chance

Student Coach Assessor Cliënt

28

9 july 2014

certification

50

Chapter 8. The results 8.1 Introduction In this chapter the results of the interviews and observations of the (F)ACT team in the Netherlands and the ACT teams in Ohio are described. In the first paragraph sub question one will be answered. The turflist/scorelist that was used for the interviews will be explained and summarized. Then the answers of the Netherlands are summarized and the themes are presented . Afterwards the observations and the answers of the questions in the ACT team in Canton and Columbus are described. In the next paragraph the selection of the EPA patients of FACT Team Old North will be displayed. Twenty patients were selected with the social psychiatric nurse I. Beek. The thirteen patients who are self-reliant according to the self-sufficiency matrix are capable to achieve selfdirection. At last sub question 3 will be answered. With the phases of the IDDT Organizational changes the implementations of methods are introduced.

8.2 Sub question 1: What kind of ways are there to encourage self-direction? Introduction There are different ways to encourage self-direction. Through interviews it will be clear what the different parties think about self-direction and how they encourage self-direction. For this sub question three professionals of FACT Teams are interviewed, a social psychiatric nurses I.beek and A.Maatjes and a social worker V.Ilic. In addition three relatives of patients and four attendants of the client council were interviewed. At first the definition of Movisie and the self-sufficiency matrix are used to develop a specific definition. With the definitions a turf list is made to determine how many times the respondents encourage, support the behavior and if clients have their own voice in these aspects. With the self-sufficiency matrix the domain where patients score higher than four is used, because at those domains the patient can be a self-director as well. In addition the theoretical framework aspects like the hospitalization syndrome and stigma of patients are included in the turf list. In the first part the turf list is being presented with a short conclusion afterwards. Subsequently the interviews from the Netherlands and observations and interviews of the ACT teams in Ohio are summarized. In Columbus Ms. Robbinson caseworker at the behavioral community health care center works in an ACT team. She has been interviewed and observed. In addition the ACT/IDDT team tree professionals were interviewed. The program maker Ruby, a team leader and a psychiatric nurse. The researcher observed a professional named Paula. Definition for the interviews and observations Definition Movisie: Self direction is the organizing/coordinating of an individual’s life with the aim of having a satisfying good life in his own eyes. It is necessary that individuals retain the selfdetermination as right and their own power as ability. This allows patients to take their own strategies as activity into practice. Taking direction in your life is also the ability to determine independently how he/she wants to live, work and the social contacts he would like to have. The right of self-determination arises from the human right to create own perspectives in life. Specific definition: Self direction is the own responsibility and taking an active role in your life and treatment. You have your own life and treatment in control. You organize your life with help of the social network. The client decides in the treatment about medication. The client has self confidence about their own abilities and know what he wants to achieve in life (her/his dreams). The client knows his own strength on the different habitats (psychic functioning, physical functioning, meaning of life, housing, finance, practical functioning, social functioning and day care) and can also adapt this

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and carry them out. Self direction is deciding about their financial expenses. The client has a job or day activity such as volunteer work or course, that he has chosen and is satisfied about it. The client has social network and gets support and recognition for his choices/decisions and wishes. The patient has the skills to call to agencies or takes the initiative to ask the social network to arrange things. Summary of the turf list According to the list all the professional who were interviewed, encourage the patients on the area of practical functioning and housing, finance, treatment, searching information on the internet, day activities, family and relationships and the meaning of life. However only two professionals encourage the self-care , like presentation of the patients. One professional stated that its hard to say something about the presentation of the patients, because that is a sensitive topic. Also the way patients want to dress is their own choice. Nobody encourages all the skills and competencies. One professional encourages to let patients be more interested about themselves and others, to don’t accept the things how they are , excel in life and encourages the enthusiasm and spontaneity of patients. They all encourage the vision and interest for the future and self-confidence of patients. It’s not clear whether the professional encourages the mouthy and the language. Some stated that the mouthyness of the patients depends on the assertively behavior of patients and other stated that control of the Dutch language isn’t really part of the treatment. All the three professionals encourage delegating tasks such as searching information on the internet, find solutions for their own problems and calling to organizations. However nobody really encourages patients to use the social network to arrange things. The families that were interviewed only helps and supports on finance and emotional aspect. One of them supports in the housing and self-care. The clients of the client council have handles their own finance and they are all mouthy. However three of the four has a housing and are interest about themselves and others, take the initiative and are enthusiastic and spontaneous. Only two people have a vision and interest of their future and only one client has confidence. In addition two people experienced the consequences of stigmatization on work and their confidence and one on family and relationships.

Summary of all the interviews in the Netherlands Professionals of the (F)ACT team The professionals at the ACT Team encourages patients by asking open questions such as ‘’What do you want and what are your aims’’. They listen to the wishes and opinions of the patients. As a professional it’s important to know the wishes, interests and complaints of the patients. Some good tools are also to look at where the patients wants to be in 10 years and reflect on their strengths and activities before the mental health illness started. Another professional uses motivational interview to encourage the patients. With motivational interview she takes the direction but if patients functions well, than she can just sit back and let the patient talk. Social network Families are an important aspect of the social network for patients with severe mental health disorders. But these patients mostly don’t want the family to intrude in their life and choices. One parent stated that his son doesn’t want him to interfere. He thinks he is autonomic for himself even though the parents disagree with that. Another parent stated also that the patient doesn’t want his mom to interfere in their choices and day activities.

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The parents have one to two weeks contact with their son. The families all agree that they can give emotional and material support. One family stated that when their son is upset or there is something wrong he mostly goes to his father and brother. Another family said that they give their son a lot of administrative, financial support and emotional support. The families feel like the patients either don’t make any choices at all or make bad choices. One family stated that the patient will never be self-reliant and have self-directed care. She hopes it but she doesn’t see that happen. She says that if the mental health care will give more structured help and medication or therapy and his son has more motivation to better his life, maybe then he will achieve more self-direction. The client council The client council consist clients who are stable and are representatives on behalf of the patients in the mental health care. There are differences about whether patients know and what they want to achieve in life. One client stated that he doesn’t really know what to do in life because he just sees what comes on his way. He doesn’t really dream he sees whatever happens. He was a chef cook but because of the cuts in the organization where he was staying, he was forced to stop. However he would love to do something with math or psychics. He took the own initiative to check out some courses at home. Another client was really enthusiastic and said she want to be part of the society and want to work as a peer consult. She is now currently in a program of the Parnassia group to be a peer consult. One patient stated that he can always do something to excel in life. However he wasn’t that positive in life before, but now he has a radical attitude towards others who try to direct his life. He said: ,,I used to listen to what people say about my decisions and what to do in life. Nowadays I’m like whatever your opinion is I’m doing what I want to do in my own life. If somebody direct your life, you can’t be happy, so you need to make your own decisions and what you want in life how hard it is, you should just do it. ‘’ The other client wasn’t that radical he said: I listen to other people, especially to my mum. Another client said: I listen to other peoples opinion, but I choose what I want to do and what I think is good for me. But if people don’t agree I don’t remove them out my life. But I know pretty clear what’s good for me’’ One of the patients said: I listen to the opinion of others, but I won’t always follow them. But I know some people can give a different perspective of the situations, for me the task whether I do something with it or not.’’ Mostly they listen to either the social workers or their family relatives and see if they agree. Protection and responsibility towards patients with severe psychiatric disorders Professionals of the (F)ACT team The professionals acknowledges that there are patients that never really think about their future and dreams because they have other priorities. That’s why it’s hard for them to answer these kind of questions. When patients don’t take the initiative to undertake or arrange things some professional feel the urge to undertake it for the patients. Hospitalized patients and patients with a lot of negative symptoms are also obstacles to obtain the self-direction. These patients are flattening in conversations and passive, whereby the professionals are more likely to put more energy into making the wishes and choices clear for the patient. With these patients it’s important to organize the thoughts, but for this matter a long road has to be walked. You have to start at square 1 and than

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analyze in the first phase what the interest are of the patient to find a entrance to talk about their wishes and activities. The professionals acknowledge that it’s hard to let the patient go and they often protect the patients, because they feel responsible for the patient’s life. So letting the patients fight with their disabilities and fall so they can learn to stand up and learn from their experiences, is still a hard quest for some professionals. One professional stated that she is somebody that does a lot of things for and with the patients. The professional says that in forced treatment its common that the professionals takes more control in the patient’s life. They try to not to, but there is an urge to take control. In the couple of years and because of the rehabilitation model the professional learned to not run too fast for patients and get things done for them. Nowadays if patients say that they can arrange it by themselves the professional often let them do it themselves. When its needed the professional can step in and take over. One professional stated that as long as the patient is selfreliant she doesn’t have any problem with patients making their own decisions. She even said that patients like to have a feedback about the things they undertake. On the question whether they experienced any moments when they felt that they had to take over the direction, the professional stated that she bites her lips if she is doubting.’’ Patients needs to experience failure in life. Sometimes they need to fall really hard in order to learn about the experience and say: I shouldn’t have than that this way.’’ Social network One family relative said that she pampered him a lot, because she has a helpful character. So she is used to take control and guide him to protect the patient. However nowadays she tries not to take the initiative anymore and send him money immediately for example. Because of all the bad experiences the family feels like you have to find your solutions on your own. Even with making choices the patient don’t let the family interfere and he tries not to have a lot of contact with the family. Skills and competencies Professionals of the (F)ACT Team One of the professional stated that its hard to encourage the skills and competencies so the patients can be more self-directed and achieve their way of life. She/ he says that the professionals doesn’t have a lot of time and manpower to fulfill the request of patients. The patient is not able to do it by themselves so the professionals need to help them and that might be walking through every steps hand-in-hand. Also its important that the patients stays stable because with every psychiatric relapse the patient functioning decrease. So the skills aren’t enforced because of lack of people in the team due to the cuts in the mental health care, the patients severe mental health illnesses and because some professionals don’t acknowledge the importance of encouraging the skills. A professional stated that what a lot of professionals do now a days are giving the patients medicine at home and a small talk. In addition there isn’t a lot of recourses to enforce the competencies like sport groups, skill trainings, cultural things to be inspired(museums etc.) However one professional acknowledged the importance of encouraging skills and competencies so patients can be more self-directed. It’s also important to adjust to the patient in the conversation to see what kind of skills and competencies the patient already have to use to excel more in life. Another thing professionals do is

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to let the patient be recovery directed by attending IMR training and talking with peers about the different difficulties in life. In one-at-one conversations with only the professional, the professional emphasize the good things/strengths of the patient. Social network The family members acknowledged that skills and competencies are important. One of the family members stated that his son loves chess and would like to teach others. However the family members said that before he would definitely be able to do that. But he can’t organize and his behavior isn’t suitable. After all the psychotic episodes and his severe mental health disorder he isn’t the same person like before. The mother also noticed that skills he will use for getting his tobacco are easier for him to do than using the skills for example to teach people chess. But she acknowledged that in his situation that he might want to use it but he just can’t. A good reason why professionals should emphasize building these skills. One of the skills that was frequently talked about in the interviews were being initiative and finding solutions. In the next part the statements about these skills are described. Being Initiative and finding solutions Professionals of the (F)ACT team Professionals noticed that when patients don’t take initiative in their wishes and choices, that means the need isn’t that big. The professional stated that it’s a constant analyze in whether the patient has the inability to be initiative or they just don’t really want to be initiative because the need isn’t there. Some patients don’t know where to find their solutions. Also if a patients comes with a solution it doesn’t directly means that they going to do something with it. Sometimes the patient just like to fantasize about dreams. They just live how they live now and are fine with it. One of the professional mentioned that some patients don’t recognize that they need medication to be more self-directed. Another professional stated that it doesn’t occur that often that patients find their own solution. She/he said: sometimes I’m even surprised that the solution the patient finds worked out and the fact that I’m surprised shows that it doesn’t happen that often. Searching information on the internet is highly encouraged. Some professionals search with the patients together and some refer them to the internet at the office of the ACT team. A social worker stated that younger patients more likely use the internet than the older generation. Social network One family member stated that their son cant organize. He can’t plan and he never takes the initiative to ask his mom to help. His mom always have to take the initiative to arrange things. One family was also really different about whether it was the patient’s own initiative to find daily activities or not. The father opinion was that his son found his own volunteer work and he went to the volunteer agency alone to find volunteer work, while the mother insist that the social workers of the organizations gave him an option to do volunteer work and that he only went to the agency once. Comparing to other situations that’s just a little percentage of his initiative the mother stated.

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The client council Concerning finding solutions one client said that if the social workers offer a housing for him he will decline it. He says I want to choose where I want to stay so I’m searching on my own. Also when he had financial problems they would go to the social workers to help with their debt. This was his own initiative because he needed help. However one client said that the social workers gave him an option to follow a course about budgeting. He said it was very helpful and he and his wife never knew that there were that kind of courses. Most of the clients are enthusiastic in life. Though there is one client that also noticed that he rationalizes a lot and that there should be more enthusiasm in his life. He says; I can see the shadow sides of things too’’ Everybody feels great when they make their own decision or undertake something and it works out. However two clients said it’s an temporary feeling. One client says: ,,It’s nice at that particular moment and after that it’s over, because after a while I see the negative side of the things I undertake. I always see something in my achievements what didn’t went well. However it doesn’t stop me with making choices. ‘’ Calling to other organizations to arrange things Some professional noticed that it’s hard to let the patients call by themselves, because of the high threshold of the organizations. The waiting list takes hours and some are so complicated. So the professional are easily to call for the patients. While other professionals let the patient call by them self first and try it and if it doesn’t work out than take the step to call. To communicate with complicated organizations it’s important that patients are eloquent and mouthy. One of the professional stated that its hard to encourage and stimulate that skill because some patients can speak Dutch and some not. But she doesn’t do anything about it. If the patients are assertive they are more likely to take the initiative to call the organizations by themselves and find their way. Stigma and imaging Professionals of the (F)ACT Team One professional said in the interview that she worked a lot of years with a group of patients with severe mental health disorders that never recovered, hereby heir imaging about patients is deformed. So sometimes she needs to tell herself: Wait there are people with schizophrenia that can function. She also acknowledged that because of the experiences with the severe patients its not always realistic to let all the patients be self-directed. That’s why they are in care at an (F)ACT team, patients can’t be overestimated. Because of the imaginings and stigmas patients are more likely to have a lack of confidence. Professionals stated that its important to emphasize the strengths of the patient: ‘’You should always give the patients hope’’. Patients have also have expectations what can trouble their lack of confidence. For example they have a different imagining, because they didn’t work for a long time due to their mental health disorder. Therefore when they are stable it’s a threshold for them to get to work again. Sometimes for the professionals its easier to encourage the patients than other times. It takes a lot of time and energy to remove these thresholds sometimes the professionals don’t have any time for that. One professional stated that time shouldn’t be an excuse but it still happens. Also it depends which patient you have regular patients take less time

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than real ACT patients. Another thing what one of the professional stated is that you have o acknowledge that being insecure is difficult buts it’s a normal behavior. Social network When questioned about the imagining of psychiatric patients the families all refer to their sons. They all think it’s hopeless to ever get the patient back on track and have more self-direction. One family said his son will never be able to work. However in the families they don’t give the patient the psychiatric label. They all accepted that he has a severe mental health illness and aren’t ashamed of it, because they acknowledge that it’s not changeable. Another family said: ,,I feel worthless, my son is like pulling a dead horse’’. Both families suffered from bad experiences of the patient, whereby the whole family was burdened. They don’t like the company of the patient when there are family gatherings. One family stated; his brothers and sisters hate the patient. The client council The clients don’t care what people think about them. One client said: ,,I have worried my whole life about what people thought about me. But I recognized I have to stand up for myself. This is my life and other people have misused my life and ruin the quality in my life long enough.’’ Another client said when she was working the stigmatization was a burden for her. It also brought a lot of tension in her relationship with her partner. That’s why back then she couldn’t undertake things in life because in the beginning she was so depressed and wasn’t active. One client stated that the stigmatization influences the self-direction of patients. In the beginning he was burdened about all the stigmas and imagining of his co-workers. Therefore he wasn’t excited to go to work again and re-integrate after a depression episode. He said: ,,The stigmatization is really a problem in the society and it won’t vanish that quick. However there should be more attention about this subject’’. Most of the clients have a lack of confidence. One client stated that she developed more confidence because she undertakes more things by herself. This increases her self-confidence . Another client that don’t have a lot of confidence said that it’s hard to gain more self-confidence because he will always find something to ruin his confidence. He acknowledge its an obstacle for him. Day activities and dreams Professionals of the (F)ACT Team Patients having a day activity is an important goal in the treatment, so they won’t be isolated. One professional said in the interview that he/she asks if the patients have more time left over to have another day activity or simply check if they can do something beyond their level. The professional does that by asking about the interest of the patient and whether the patient know what more possibilities there are for him/her. The professionals use the rehabilitation model to see how the patients can achieve their dreams. One of the professional stated that he/she offers to look into it together. If the patients dismisses the professional leaves it and sees if there are other more realistic goals in a short period of time. One patient stated that he wanted to run a restaurant the professional told him that’s a nice idea would u think u will ever do this? And the patient reacted with yeah definitely one day but not now. Some patients aren’t aware about the future they are not ambitious. There are patients with severe mental health disorders that can’t even plan one hour ahead. That’s why it’s hard to give more awareness about excelling and getting more out the patients

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than they are doing now. The professional also acknowledged that in the treatment it will have negative effects if the professional confront the patients about their dreams that are not achieved yet. If the professional constantly talks about the dreams the patients sees that he is still not achieving their dream. With this kind of approach you will discourage the patient in his dreams. Another point that was made in the interview is that it’s hard to find a day activity for the patient because they have high demands on their self. Therefore the patients get disappointed and unsure about themselves. A professional mentioned that the dreams aren’t questioned that well in the treatment. It’s also difficult to know about their ambitions. Some dreams and wishes aren’t feasible for example if a patient want to marry the professional can’t find him a husband of wife but what they can do is emphasize that its normal to have that idea. Social network All families knows the dreams and wishes of the patient. However one family stated that the patient doesn’t have any ambitions and knows that he cannot achieve something in life. The family thinks that the patient doesn’t know where he will be in 5 years. The other family also stated that their son doesn’t have any long-term goals. The family said: ,,He really feels terrible that he will not make his dreams come through’’. The patient love to play chest and he is really good in it. However he never thinks about how to use this hobby into something he can do as a daily structure.’’ The family stated: ,,He just loves to play chest and it’s just something to say’’. The family noticed that he wouldn’t be able to do something with chess, because of some reasons. They stated that he wouldn’t be able to undertake something with the chess because he doesn’t looks representative, he doesn’t know how to organize, his behavior and language is different than it used to be. ‘’He has just slipped to the edge of the society. ‘’ Also another big reason is that the addiction is an obstacle because giving people chess lessons and an addiction won’t go together they think. Also they feel that if he really want to do something with the chess his son doesn’t really needs them but rather get the support of the social work. The other family stated that she knows the patient’s wishes and dreams however it’s not realistic, because the disorder and behavior makes his songs all about himself what will not attract the public audience. But he doesn’t get that. The client council About the vision and interest of their future there are different comments. One client said her future image is important. ,,You need a goal in life, just accepting how my life is, isn’t enough for me’’ . However another client who was just discharged from the mental health hospital said his future isn’t that clear, because he needs to be back on track. Also the position of life make a difference about whether they think about their future. Another client stated that when he was working he was thinking a lot about what he wants in the future. But now he stopped working and just accept how things goes . He invents small, short-term goals that achieve successes. One of the clients said his interest about his vision and future came back after a long time. He noticed that you need to put in your own initiative to achieve something you want, otherwise nothing will happen in life. ,, You have to stand behind your ideas and you have to develop yourself, regardless what people think about you and your decisions’’.

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Social network Professionals of the (F)ACT team One remarkable discovery is that professionals are not likely used to involve the social network(family, neighbors, the community etc) in the self-direction of patients with severe mental health disorders. Professionals are also not educated about what the community has to offer to help the patient to have more self-directed care. Professionals rather help the patients than reach out to the social network. Some of the reasons are because the professionals don’t have insight of the social network. They also feel that a lot of patients don’t have a social network anymore because they used to be really ill with a lot of psychotic episodes. This had damaged the families and the community like neighbors because of the nuisance . Another reason is that patients been in treatment for such a long time that the professionals are closer to the patient that the social network. Either way the professional acknowledge that they should invest more in the social network of the patients to see who still has contact with the patient. They only ask about the social network in the assessment phase or when they are setting up the treatment plan. In the interview a professional said that ‘’ it would be better if we don’t assume that the system is still the same as the at beginning of the treatment and will always be the same or is not changeable. Even though the social network is not involved in the treatment another professional stated that when patients find a solutions that work it’s more likely the patient and the system that gives the initiative. The attendants aren’t present in some of the successes. The reason he/she is saying that is because the professionals only see the patients once or twice a week so they don’t see them that often. So more likely the patients are obliged to find solutions by themselves or ask people because the professionals aren’t always available. Furthermore she/he recognized that still patients need more encouraging of the attendants for the patients that can indicate their needs and what they want in life to fulfill it in the way they want it. But for these patients you need to put a lot of energy in time and invest getting in contact with the social network to make the next steps. To get in contact and to restore the relationships of the patients and the social network cost time. The client council The clients of the client council try to do a lot by themselves and if it doesn’t work out they say they have their case managers. However some clients stated that they will rather ask help in their family like partner and friends and use the case manager as last option.

Summary of ACT Teams in Ohio Authority and control of the patients Patients with severe psychiatric disorders are accustomed in being depended on the professionals. The professionals are often the only person in their life. One patient said in the interview that he doesn’t take the control in calling institutions to arrange this. Because he only needs the payee center and Paula his case manager. He also said he doesn’t really make a lot of decisions. If he needs help the first thing he would do is call his case manager.,, She helps and supports me a lot. Every time I have a problem I call Paula.’’ The American approaches like the strength approach emphasizes the authority and control of patients. The professional in Columbus stated that she starts the

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conversations with her patients the question: ,, What do you want?’’ The role of the professional is to inform, provide suggestion or material so they can decide for themselves. In addition she tells them that she is here to support them and not make the decisions for them. The professional mentioned that in order to encourage the initiative, performance and satisfaction of life of the patients, she reminds them of their progress. She let them know how far they came and how long it has been when they were hospitalized for the last time. She reminds them of their accomplishments like having a new house and environment. It is a fact that most professionals want to solve everything for the patient because it makes the problems go away faster and it’s easier. One professional stated: ,, It’s like raising your own kids if you keep doing that they going to keep coming back from the time they 20/30/40. That’s not the goal but when you teach them while their young and encourage the self-independence, they will progress through the stages very well. For older patients that are in care for a longer time it’s hard to encourage the self-directions.,, Patients were institutionalized and are now back in the community. So a lot of things have changed for this patient and yeah It’s a hard nut to crack, said the nurse’’ Patients are comfortable to certain environmental forces, Professor Boyle. ‘’ So when certain ways of professional changes patients get uncomfortable and that’s an normal mechanism. However it’s up to the professionals to let them see the importance and benefits of taking care of themselves. Professor Boyle: ,,it’s a lot more interesting and challenging to help people help themselves.’’ To keep the authority and control by the patient the professionals you have to engage with the patients and be open about the expectations. One professional said: ,, I also talk about partnership with the patients. I tell them that they are in charge and I’m just here along the ride. I encourage them to make decisions . If you give them more control and if you let them know that you will be okay with that, you will get better results’’. Responsibility and protection The strengths approach talks about professionals having a hard time leaving the responsibility when they are using the model. In Canton they solve this by assessing the patients needs and functions frequently. Some days patients can be capable of managing more, other days they have environmental stress or struggle with their symptoms or abuse of drugs and alcohol. So in that case the team members step in a little bit more . In the Netherlands it was clear that professionals feel responsible for the patients and want to protect them. The professionals in Canton also refer their patients as ‘’children’’. Parents always want to have the best for their children likewise for patients they want the best for them. However it’s important to respect how the patients want to live. One professional said: ,,There is one guy he is in his mid twenties. I would like more for him but he is happy with his current situation. I learn over the years that you have to adapt on their choice of living their life. Everybody in his family wants him to conform to their reality not the clients reality, while the client is just doing fine now.’’ One professional also stated that you have to determine what is important, some things you have to let go of it. But we have to do it in order to let the patients experience the natural consequences. ,,I’m pretty big on that everybody should be responsible for their own choices there is no free pass because you have a mental disability’’. In addition letting go and giving patients more responsibility has to be clinical driven as well. ,, It’s sort of subjective but there has to be a clinical reason you really have to think about it and you have to think if it benefits the client situation and life’’. In Canton they find it difficult to delegate task such as phone calls,

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because it’s easier and quicker just to do it for the patient. One professional said:,, I always tell the patient, we will not do it for you but we will do it with you and we are beside when you do it’’. In Columbus the professionals have a hard time leaving the responsibility and control with the patient when it comes to managing money. Most of the patients would like to manage their own money. The professionals give them the opportunity to manage their money. When they are not successful then the professional find them with utilities shut off, loss of housing or with no money at all and they have no clue where the money went. The professionals try to give the patients control over their money by giving them weekly budgeting sheets and go over it weekly with them. They also support the patient by cashing their checks and figure out how they spend their money and having a calculator or a bill box. Only a small 5 percent of the patients in the Columbus team are able to budget on their own and do their own grocery. The professional stated: ,,The most part they require the hands on with budgeting they really do. Even the patients we assume have higher functioning’’. So the professional leaves to responsibility to the patients when she observed and sees that the client is successful on that area. In addition she praise the patient and try not to touch that area in a negative way. However when the professional sees that the actions and decisions of the patients affect their mental stability or their children, jobs or education, she will intervene. Stigma and imagining The self-confidence of patients is an important aspect in order to gain more self-direction in their life. The patients have to feel good about their selves and their decisions. Because of the stigmatizations and imaginings in the society patients have a low self-esteem. A lot of patients have a lot of shame and guilt. So it is necessary to let them know its normal but it’s also okay to remove the shame and guilt in their lives. The professionals are all on equal level but the experiences of them are different than theirs . The nurse said that she believes that in her heart. Another professional said: ,,If you want to be normal you have to act as a normal person so you have to really educate them’’. The professional in Columbus stated that she increases the self-confidence by reassuring and encourage the patients to follow through, giving them the opportunities to lead and make decisions. She also said that fostering hope is important. ,, Some clients don’t have any support system, we are the only one for them. So if we can go there and see them that’s giving hope and encouraging that is giving the client a reason to take their meds and go to the agency to arrange things tomorrow’’. In the Netherlands it was shown that the patients experienced the stigmatization in the work field. The professional in Canton said that first of all the patients are scared to apply for jobs because the patients aren’t representative. So they link them up with clothing and job employment skills. The professionals teach the patients these skills or they refer them to organizations who can boost their social skills. They also refer them to peer support centers and other organizations. In the Netherlands the arguments of professionals was that they don’t have a lot of time to encourage the skills. The professional in Columbus said: ,,Honestly I don’t know how we do it but somehow we pull it off and the team members work really well together. We see our clients a lot, a 1-3 days a week. We are all aware of their goal. So in morning meetings if another professional goes to my client I tell them remind my client about the job information, remind them of their goal, encourage my client to do self-reliant things’’. Competencies and skills is correlated with stigmatization. The society has a label on psychiatric patients. Some patients aren’t able to function as normal person do, but the professionals are there

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to help them improve their skills again. In the next part it will be clear what the professionals in Ohio think about the skills. Skills and competencies In Canton the professionals stated that the lack of competencies is correlated with symptoms like disorganized thoughts and psychological disabilities. When the symptoms decrease the skills will improve . That’s why medication is also an important aspect in maintaining self-direction. The professional Columbus said that often medication is the key in having friends, a stable life, work etc. So she uses that as an reinforcement in the treatment. However some patients cognitively ability been severe since they were born or because what they did younger. So in that case the professionals should figure out what the patients are still capable to do. One professional said: ,,You always try to let them be the best they can be today. Some patients surprise me’’. It does happen that patients backslide again. However it’s important to talk about working on the skills and the independence of the patients. ,, What’s impossible today can be possible tomorrow’’. Dreams and wishes of patients The professional in Columbus has around 16 patients in her caseload. She knows the dreams and wishes of all the patients in her caseload because she asks them. She does their Individualized personal program and therefore she is aware of their goals. The professional stated: ,, I know exactly what they want to work on their hopes and dreams. I use it every day to use it to encourage them to remind them especially when they backslide’’. My approach is:,, Hey John you told me you want to work so if we go to Mac Donalds your probably submit to a drug screen. And the patient will tell you themselves yeah I should probably not smoke’’. The professionals in Canton realize in order to know the dreams and wishes of patients and be on the same page, you have to ask what can make their life better. However that’s not easy to get out from the patient. One professional stated:,, I have one individual for example, I really want to know what she enjoys to do because she is isolated. It took some time but eventually I figured out she likes having coffee. So you have to know the person and learn to trust them’’. It takes time to get to that point with a patient to really know their inner dreams and wishes. The patient that was interviewed said I want a wife and children. Some patients don’t have big dreams and want big accomplishments. For this patient just having a normal life, like other people is satisfying for him. However this patient uses alcohol and said that it might come between achieving this wish. He said he is attending groups but isn’t really convinced that his alcohol abuse is really a problem. The professionals in Canton figure out what the patients want by listen to the patients and respect what the patients satisfaction is in their life. In the diagnostic assessment in Canton they have a section with the question: What do you want to accomplish after the treatment, what is your desire outcome. The professional said: ,, One individual said I want to go to school so you ask them in the beginning what they want to change. Sometimes they are not on that level yet. But while you are working with them in the treatment you can still ask them’’. The goals of the patient change every week so that’s why it’s important to ask what the goal is for this week. One professional used an nonexisting example of a patient that’ wants to be an astronaut. In order to achieve that goal the professional said you have to ask the patient what kind of things he need to arrange this goal. Another professional said that you should asses if the goal is realistic for them too. As a respond one

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professional said:,, It is realistic right now because its realistic for them. So you follow that wish it may be something else tomorrow’’. Patients have different kind of dreams and dreams can be reality. Because of the imagining of patients with severe psychiatric disorders, people think they can never be an astronaut or attorney. However professor Boyle said that the professionals often forget what’s important about that dream. ,,One individual experienced that It was important to be around smart people. From sitting in front of the Tv, smoking cigarettes to being with people with PHD and that transformed him. So it wasn’t unrealistic. He is not an astronaut but he is working at NASA cleaning tubes. Same thing happened to a guy. He wanted to be an attorney but didn’t had his GED, so we got him a job at an attorney office. So all of a sudden he got access to money people, education. He was around different kind of people. We presume he wants to go to Mars or something. But we don’t know before we ask what the importance is of the goal’’. At one of the visits in Columbus a young man stated that he wants to go to school again and do math. The case manager said she can talk to the person in the team that handles employment and education(vocational person). The young man didn’t came with any other options and the professional said that she would go online and find information about schooling. So the next time she visits him they can talk about it. When asked how the young man can do this things for himself, the professional stated that when he is ready he can do it by himself. Patients being initiative doesn’t happen that often. It’s more likely that the professionals provides the resources. However providing resources is a part of encouraging self-direction. Encouraging self-directions means being creative but also to not push the patients too hard, said the case manager.’’ . Patients often don’t know what their options are and most of the time they are scared as well. That’s why it’s important for professionals and the community to provide these resources. So the patients can help themselves and have a meaningful life. In the next part the professionals in Ohio describe how they use the social network in encouraging self-direction. Social network The Americans figured out resources in the community so patient be more self-directed. The professional in Columbus said that patients can get a free bus pass so they can maintain the communication with the family and also visit them or visit community spots and organizations. The professionals in Columbus are aware of what the neighborhood can offer to the patient. This because the professionals give the patients resource sheets where different resources in the community are displayed. However family are also not used in encouraging self-direction. The professional in Columbus stated that most patients don’t have any contact with their family or the relationship with the members are bad. She said: ,,In that case if I know there is a problem, I would not incorporate them with anything of the client’’. So the professionals here don’t restore the relationships within the family members. The patient from Canton also admit that when he has a problem or needs something the first thing he will do is call his case manager. ,, I don’t really talk to my family didn’t seen my brothers in years. They don’t live near Canton.’’ It is import to inform the patient of the recourses in the community when they just start in the team. ,,Some of the patients don’t have a clue what the community has to offer them. I think our team we are specialized in is making patients aware of resources’’, said the professional.

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In Canton they also have a mental health organizations called ‘’Foundation ‘’that provides a lot of services for patients. It is consumer based and they have a lot of different kind of groups such as double diagnose groups, women empowerment groups, men empowerment groups and WRAP trainings to obtain more self-direction in their life. The people that work at the organizations are patients that are in recovery ,dedicated to living more satisfied lives and to help others along the same path. Canton is a small city in Ohio, therefore the team can use the community more easier. Everybody knows and helps each other. The patients provide their own day activity and the professionals only interfere in medication appointments. There are a number of clients that have jobs downtown’’ The patient in the interview confirmed this. He said: ,,Yes I do a lot of things. I work at a lot of stores here on the street(shows it ). I know the people so sometimes I work at the grocery store or I help in the barbershop. I just walk in and ask. And some days I go to the payee center and get some food and money’’. The professionals in Canton also try to find out who the friends are of the patients or if there is any support for the patients.,, It’s interesting because when we step down on the intensity of the treatment. We do a referral form and in that form we mention what kind of support the patient has’’. They include the family by discussing with the families what role each person will have and where to assist in. Conclusion of American interviews. In the interview the professional described different kind of ways and approaches. The case managers should know what is in the community to provide information to the patients where they can find the solutions or find how they can achieve their dreams and wishes. In Columbus they have recourse sheets for this. In Canton they use stage wise-intervention. In that way they know in what stage the patients are and it will help determine which intervention is needed and what kind of approach the professionals will use. One professional said: ,, If they are in pre-engagement phase you shouldn’t use strategies that are used later on in the treatment.’’ In addition the professionals asses with the staff how independent the patients are, what kind of assistant the patient need and what kind of approach. Should the professionals teach or coach and should they take more control. However the professionals asses this without the patient. So in what degree is it giving patients more control if they asses the patients without them. They also use an clinicians development assessment. In this assessment they reflect on their own approaches towards patients. In the next part based on the behavior categories the observations in the house visits with the case managers are presented.

Observations in Columbus and Canton In Canton and Columbus three patients were observed. At one visit the patient looked weary, his hair wasn’t done and he had saggy clothes on. It looked like he just woke up, because he had tired eyes. His answers were short. Therefore the patient didn’t radiated energy . The patient was asked whether he knows what to do in life. He said he wants to do something with math. The patient didn’t take the initiative to find out how he can fulfill his math dream. Because of his tiredness or depression he might wasn’t able to take more control in the conversations. The professional took control and said what the options are in the agency so they can help him to fulfill that dream if he wants that. However he was motivated and strived to achieve his full potential. He didn’t had a straight posture or had his head high. He was eloquent enough and knew how to formulate his wish.

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He was confident enough to say that he is able to do something with math and he emphasized that he is serious about it. Because of his wish in math he wants to develop himself. The case manager encourages strength of the patient by being supportive about his wish. The patient has interest in Math so he might be really good in math and he knows that he wants that in life. Tough it wasn’t clear if he has hope for this wish and confident about really succeeding. It was also not clear if he already did some research about his wish and took the responsibility to find out how he can fulfill it. In one visit the patient was in the hospital and the next day he would be discharged. It was a young Afro-American man with glasses. The professional asked what he will do after he will be discharged. He said he will call organizations so he can get his GED. So here the patient wants to develop himself and strives to achieve his full potential. Both of the patient know their strength and could say three positive things about their selves. It is the question if he is really going to do that tomorrow. The professional can ask in the next visit If he did call. He also therefore takes the initiative to search and bring information on the table when the professional will visit him again. In the car one patient called and asked about his/her money, she said she is going to call an organization so the client can get his money. Here I didn’t observe any self-direction being encouraged because the case manager has control over some patients money. There were two situation it was observed that the social worker speaks to the social network frequently. At one visit the patients parents were home and she asked them if the patient have things to ask or say. In another visit she told the patient that she spoke to his grandma often since he was admitted to the hospital and that she was concerned.

Behavior categories concerning the attitude of professionals in promoting selfdirection In the theoretical framework ‘’Welzijn Nieuwe stijl’’ talked about significant attitudes of professionals who encourage self-direction. In this part it will be clear if the professionals in the United States already have this kind of attitude. At all the three visits the professional puts the patient in the centre of the conversation not by asking his/her problem but by asking about their opinion and wishes. One patient didn’t took her medication in a few days. The professional gave the control to the patient in being honest about the reason why she is not taking her medication. The professional was transparent and made it clear that she has to take action. The patient her eyes were big and it took longer for her to process the information. She also gave the same answer. The professional asked what the complaints are but didn’t emphasized the positive side immediately. At a different visit she asked about the complaints so she can get the positive side out of it. The professional trust the strength and the decision making ability of the patients. In both visit she agreed with the patients decisions and didn’t downgraded it. She emphasized that it’s a good idea to do math or call for a GED even if he is just out from the hospital. She also mentioned that if they need help with it they can just ask for it. She also supported the patients with finding their skills with this approach. The professional didn’t gave the patients advice at once. She asked if the patients wants to know more about the vocational person. The professional didn’t interrupt the patients and try to let them speak. Even though they didn’t have a lot to say she still tries to give them control in the conversation by asking a lot of open questions. The researcher observed that the professional often give the patients options to do or to arrange so they can get a step further to their goals.

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The professional in Canton was respectful and caring in every visit. She was kind and had a warm character didn’t gave patients advices immediately. The professional brought a patient to an appointment and she listened to her and her interests. In every visit she asked how the day went and If they need any help from her. Besides the behavior categories that were observed there was a lot of categories that were absent. In chapter 9 the conclusion & discussion the validation about the research will be explained.

8.3 Sub question 2: Which EPA-patients in FACT Old North are self-reliant? Introduction In this part sub question 2 will be answered. In order to encourage self-direction patients needs to be self-reliant. These patients are participating in the society and are independent. However they still are depended of the professionals. This research tries to shift the patients who are self-reliant and put the direction outside of themselves to being patients that are self-reliant and self-directive. In that way they can get more control in their lives. First of all the screening process will be described. Afterwards a list of patients that are self-reliant are displayed so that they can be encouraged to be more self-directive. Screening process With the FACT Whiteboard twenty patients are selected whom the professional think they are selfreliant. After that all twenty patients are screened by using the self-sufficiency matrix. They were scored on different domains. The screening shows that there are ten patients that score higher than a three. According to the public health organization( GGD) all the domains has to be higher than 3 to regard patients as self-reliant. Especially the domain daily activities/work has to be high in order to qualify patients as self-reliant. Though there were four patients of the ten patients that had a score of 2 on the dominion addiction, they are still self-reliant. On the other domains because on the other domains they score high and most of the patients are nicotine addicted and are still capable to function with their addiction . Three of the ten patients are female the rest is male. Another discovery is that the patients that are qualified as self-reliant are between 30 and 63 years old. Severe psychiatric disorders develops at an early stage and disorders such as schizophrenia don’t have a progressive process but a static process. So these patients have been in the mental health care for a couple of years and finally managed to get their life back in order and participate in the society. According to the self-sufficiency matrix thirteen patients of the twenty are self-reliant 1. Patient 1(30 y.)(M) 2. Patient 2 (39 y.)(M)( scored 2 on the domain addiction) 3. Patient 4( M)(59 y.) 4. Patient 5(M) (50 y. ) 5. Patient 8 (F)(63 y.) (scored 2 on the domain addiction) 6. Patient 10(M)(59 y.)(scored 2 on the domain addiction ) 7. Patient 12(F)(40 y.)(scored 2 on the domain addiction) 8. Patient 13(50)(F) 9. Patient 14(43)(M) 10. Patient 17(45)(M)

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11. Patient 18 (57)(M) 12. Patient 19 (52)(M) (scored 2 on the domain addiction) 13. Patient 20 (36 )(M)

8.4 Sub question 3: How can the encouraging methods of self-direction be implemented in the FACT Team Old North? Introduction After the observations and interviews in both the Netherlands and America it is clear that selfdirection and patients having more control in their life is correlated with skills and competencies. In Canton the professionals stated that the lack of competencies is correlated with symptoms like disorganized thoughts and psychological disabilities. So that’s why it’s important to stabilize patients with medication first. The patients with severe mental health disorders who are self-reliant are often stabilized on medication so the next step for them is to work on their skills and competencies so they can be more self-directed. In this chapter the outcome of sub question 1 will be described and afterwards the focus on the implementation will be presented through the stages of organizational changes. Readiness Ruler by the center for evidence based practice at Case Western University Its noticed that Americans use the stage wise person centered approach to determine where the patient is at so all the team members to use the same approach. They use the readiness ruler produced by the center for Evidence based practices at Case western university to assess the readiness of the patient. Between a scale of 0-10 the patient can answer how important it is to be self-directed in the 8 habitants that were used in the turflist/scorelist. They can also tell how confident they are on it. In that way the professional can also foster the initiative of the patients. Because how higher the confidence and the importance of the patient is, how more likely the patient is initiative. To implement this in an FACT Team there are a view steps and considerations to look at. In the next part this will be described. Organizational changes in implementation The centre for Evidence based practice has stages of implementations that goes together with the stages of changes from Procheska en Diclemente. The FACT team will be introduced with a new encouraging method. They are already experiencing a lot of changes, because they just transitioned from an ACT team to a FACT team. However this will help them fulfill the FACT approach of being recovery centered. Building skills so patient can be more self-directed. The team has to be ready and willing and able to use this encouraging method. Stages

Stages of change

Stages of implementation

1

Precontemplation

Unaware or uninterested

2

Contemplation

Consensus building

3

Preparation

Motivating

4

Action

implementing

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5

Maintenance

Sustaining

(Prochaska, Norcross, & Diclemente, 1995)& (Hyde, Falls, Morris, & Schoenwald, 2003) Figure 3

Stage 1: In the first stage the staff is in the precontemplation phase. They are not sure if they want to use this method and are unaware or uninterested. It is important to know if they already doing something for patient to boost their skills. Trough the interviews in the Netherland it is clear that they don’t have something to encourage skills for patients so they can be self-directed. ‘’One of the professional stated that its hard to encourage the skills and competencies so the patients can be more self-directed and achieve their way of life. She/ he says that the professionals doesn’t have a lot of time and manpower to fulfill the request of patients. The patient is not able to do it by themselves so the professionals need to help them and that might be walking through every steps hand-in-hand. So the skills aren’t enforced because of lack of people in the team due to the cuts in the mental health care, the patients severe mental health illnesses and because some professionals don’t acknowledge the importance of encouraging the skill’’. Stage 2: After stage 1 the staff can be in the contemplation phase where consensus building occurs. The team has to figure out if they really need it and develop awareness of available options. It’s also important to examine the teams missions, values, goals and vision. Because if not every team member agrees on it, it’s hard to implement the method. In addition the pros and cons will be assessed , the consensus will be developed and the concerned are explored. Stage 3: In the preparation phase the team members have a pretty clear idea about the encouraging method and are willing to utilize it. The team members are motivated and decide if they want to implement the method or not. Stage 4: In the action phase the method will be implemented. The team members have to be trained in using the interventions in the treatment. Also the stage-wise interventions to see where the patient is at in his self-direction and skills have to be trained. Afterwards the monitoring strategy has to be developed.. This can be done through evaluation forms. In this phase it is also important to keep an eye on the barriers and talk about it during the supervisions of the team. Later in this chapter the challenges of implementing a method will be described Stage 5: the last 5 is sustaining the method so the team members will keep using it. Now the outcomes can be monitored and the new method can be introduced in other teams. One important aspect in this team is providing ongoing training in the encouraging method. At last the organizational culture changes and team members will give more attention on skills and competencies in order to let patients be more self-directed (Ohio Substance Abuse and Mental Illness Coordinating center of Excellence, z.d.) Challenges of implementations When a method is implemented the team has to be willing to change and utilize the method. This comes with challenges while implementing in a team. First of all it’s important that the goal of the team is the same like the goal concerning self-direction. Self-directed care is recovery based. With self-direction patients can maintain the recovery. FACT Teams try to go beyond stabilizing patients and are more likely to be recovery centered. One professional in the ACT Team in Canton said:,, I

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think it has a lot to do with the team too. You need a passionate team in order to help people be more independent. They also need to have the philosophy of promoting self-direction. Because of the trainings that are provided we understand why it’s important to encourage self-direction’’. Another challenge is that staging requires more assessing. FACT teams are structured already but because of time pressure from the patients and the staff it’s hard for professionals to have the time to fill in assessment forms. So the culture in being more structured has to exist in the team in order to implement the method.

8.5 Similarities and differences of the theoretical framework Introduction After answering the sub question it is important to know if they differ from the theoretical framework. In this paragraph the similarities and differences of the theoretical framework are analyzed. First the similarities of the capability approach, the pyramid of Maslow and self-reliance and self-direction are analyzed. Then the differences of the results and the theoretical frame work are described. Similarities The capability approach Amarya Sen and Nusbaum stated that to fulfill quality in life it’s important that people can direct and organize their own life. The professionals that were interviewed in the Netherlands all agree that patient should follow their wishes and dreams. The professional stated that they give care by listening to the wishes of the patient. They all feel responsible for the quality of patients life. The four components of the capabilities are important to achieve quality of life. Trough the interviews it is shown that professionals try to initiate day activities in the life of a patient. Some professionals also direct them to work if the patient wants too. Amartya sen also stated that individuals must be given the opportunity to undertake their own activities to develop themselves. The clients of the client council agreed that when they achieve or arrange something on their own without help they feel great. They even said that arranging and achieving something with success boost their self-worth. However stigmatization limited this freedom. The interviews with the client council has shown that stigmatization is indeed a big problem amongst the patients. Some of the clients stated that the stigmatization causes them to lose their self-confidence again. Some have had negative experiences with stigmatization that causes them to be bitter about whatever people think of them as a mechanism to survive and move on with life. Amarty sen stated that people must have the ability to pursue a desirable way of life. However this is an obstacle for patients with severe psychiatric disorder. The interviews shown that professionals don’t invest a lot of time to improve psychological functions and increase their skills. They also stated that after psychotic episodes research shows that the functioning’s of the patients decrease. One of the professional said that it is important to improve the skills and competencies of the patients that are decreased because of their disorder and because of the hospitalization syndrome. Research shows that medication and therapy and other treatments can significantly reduce function disorders. One professional also stated that a lot of patients don’t even know that with medication they can function better and get more self-direction. Family members stated that because of lack of therapy and other treatments their son will never have self-direction.

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Pyramid of Maslow’s With the pyramid of Maslow it shown that people have to fulfill their needs in order to reach other layers. Family members stated that in the condition their sons are in, they can never be self-director in their life. They are saying this because these sons are still on the bottom of the pyramid. One of the family members their son would probably be hanging between self-esteem needs and love and relationship needs. He has a house and food. However he has not a lot of social contact, he doesn’t work or has a day activity where he encounter new people. He is stable but still hear voices and is paranoid so he likely has to be afraid and doesn’t have self-esteem. The other family member also sees that with their son he can never be self-director because he can’t even do basic things like finance and administrative work. He also makes bad decisions about friends , his behavior and addiction makes it harder to get to the last step self-actualization. That’s why professionals of FACT team also stated that they are used to fixing the crisis’s and giving the patients at least the bed, bath and bread so they have an entrance to get the trust of the social workers. Self reliance & self-direction In the theoretical frame work it’s stated that rehabilitation model has a shifted attitude in the mental health care as aim to prepare the patients for the society. They emphasize on the recovery empowerment and self-reliance of the patient. In addition actively improve the living environment of the patients and activities them into day activities. Professional stated that having a day activity is an important aspect that they encourage. When screening the patients of FACT old North According to the pyramid of self-suffiency the thirteen patients are either placed in the layer of 4% or 8% whereby patients are permanent depended on care or temporary depended of care. Because of the interview with the family member it has shown that patients should be self-reliant in order to fulfill self-direction. Self direction means one has four elements ownership, own strength/empowerment, motivation and social contacts. The similarities with the interviews are that ownership is definitely a core of self-direction. The clients that were interviewed stated that making their own choices and decisions are really important for them. Also the professionals said in the interview that their aim is to let the patients decide for themselves. One of the family members stated that their son makes bad decisions that harms them. So there are limits concerning self-direction. About the third element motivation it’s important that social workers join into the dream and motivation of the patients even though he/she thinks that is not feasible. Most of the professionals that were interviewed encourages the dreams of the patients. In the theoretical framework its stated that work has a lot to do with developing self-direction. Also in the interviews with the parents It is noticed that they all emphasize the meaning of working. They feel that if their patient would work, they would have more structure in life and therefore more self-reliancy and self-direction. Self-management In the mental health care self-direction is applied with self-management in the treatment. The patient that are self-reliant and have a high score are capable to monitor their own medication and are aware of their symptoms so they can control it. As a result of time pressure and high performance standards care takers do not have the opportunity to allow the patient to be selfdirective in their treatment. This was clear in some of the interviews with the professional that stated that self-direction cost a lot of time, energy and man power. Just like previously stated professionals are more likely to protect the patient. In the theoretical framework it’s also stated that professional

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more likely find it difficult to leave the responsibility with the patients. This was also shown in the interviews. They also use the reperationreflex, because they want to help and protect the patient rather than letting them solve it their selves. In addition working with self direction is not a revolution, but less and less professionals use this in their field. It is not intended for the patients to be left alone and have to figure out everything. But the professionals must balance when to take the responsibility or leave it up to the patients. When answered professionals stated that the moment they see the patient lacking in skills to handle a situation they know to step in. One professional said if a patient says I can pay my own rent and I let them, but after I while I see the rent isn’t paid I step in.

Differences In this paragraph the differences between the results and the theoretical framework are described. In the theoretical framework the self-direction is influenced by four elements one of the elements is social contacts. Social contacts are important so the patient can get different perspectives. Also the social network ensures that patients get care, share fun and appreciation and practical help. However while interviewing the social contacts like family members it’s clear that the family members are burdened. One family member stated that their son doesn’t need them to help him with obtaining more self-direction. They say they can’t do anything, because he doesn’t listen to them. The other family member said the same their son also don’t listen to them. They reach out by giving their sons administrative, financial help and support. They feel hopeless and can’t change the situation if the patients don’t want to. Both of the family members said that they don’t see their son having a lot of self-direction. Though they have hope, they already assume that it’s not possible in this state. One family member said that the brothers and sisters hate the patient, because of his condition, they don’t like to be around him. Another thing is that professionals don’t reach out to the social network so the patient and the social network can solve the problem or arrange things. The professionals stated that they either don’t know who are in the social network of the patient or they assume that because of everything that happened in the past the relationships are scattered. However they acknowledge that it’s better to re-evaluate the relationships of the social network of the patients, because sometimes the patients have new social contacts. Also they feel that they should make more effort to get the social network back together after they lost contact. But because of lack of time it’s hard for them to invest in getting back families together. One professional also said that it’s not clear what’s available for the patient in the community. Because of lost of social contacts and bad experiences the patients are more likely to seek help in the Mental Health care. Some patients been in care for years to the professionals are closer to them, than their own social network. However when the client council was asked who they turn to when they have problems or need help, most of them answered their partner first and second the professionals. Also the imaging about the definition of ownership regarding to self-direction is different. One of the family members said that her son makes his own decisions and I can’t do anything about it, because he has the right to make his own choices. However his choices are wrong. He decides to steal and be in contact with the law enforces. So when we say the patients has to be self-directed does that mean that every choice and decision they make they should make it even though its bad? Movisie stated that its important to have a balance in when the professionals should intervene when patients make bad decisions. However for the social network finding that balance is harder than the professionals.

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The professionals know at what point they should intervene and get grip of the self-direction of the patient. The third element of self-direction is motivation. Motivation is an important component in self-direction. Patients who are motivated can express their own values and motivators. It makes it easier for the patients to stand behind his/her own decisions. In addition it also stated that patients can lose perspective and not be motivated. Some of the clients of the client council didn’t have any future perspective but does that mean, that they are not motivated to have a desirable and quality of life. They just feel that the present and how they are functioning now is more important, than what they can achieve in their life to better themselves. In comparison with the theoretical framework the client council don’t experience all the obstacles of stigmatization. The client council stated that they had a lot of bad experience with stigmatization at their jobs, sometimes relationships and self-confidence. But hardly experienced professionals in the mental health care stigmatize them.

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Chapter 9 Conclusion & discussion Introduction FACT team Old North has a caseload with patients with severe psychiatric disorders. Some of these patients are stable and self-reliant. Because of the cuts in health care in the Netherlands a lot has changed in the mental health care. Patients are required to be more independent in the Netherlands. In the United States self-independence is a big value for professionals and patients. Therefore they are also accustomed with encouraging self-direction. With this collaborations the Dutch can learn from the different ways of Americans. In this chapter the conclusion and discussion will be described. First of all the purpose of the research and the research question will be repeated, followed by the answer of the question. Afterwards in the discussion paragraph it will be questioned whether this research is valid, reliable and extern valid. At last the challenges and dilemmas will be presented before in the next chapter the recommendations will be shown. Purpose of the research The aim of this research is to advance the autonomy of patients in the mental health so self-direction is achieved. The client wants the self-direction of EPA-patients to work as encouragement. Patients who were dependent must do more things themselves and make their own choices and matters into their own hands. The social network contributes a big role as a supporting factor in the lives of these patients. Through this research there will be more understanding by professionals on the possibilities of patients concerning self-direction. Hereby it’s important to take into account that there will be obstacles in the process of self-sufficiency to self-direction. The barriers are both present for the staff as they are for the patients. This research will design a covenant for the professionals to encourage the self-direction of patients. The important thing is that EPA-patients participate in society and apply coaching aimed at selfmanagement in their treatment. As a result patients will have more confidence which will leads to more intrinsic motivation, so recovery is also achieved. Research question In what way can patients with a severe mental health disorder, who are already self-reliant in FACTteam Old North, outpatient team be encouraged to self-direction? Answer to the research question Patients have a high value about the direction in their life. The patients wants to be more selfdirected and they know what is best for them. Trough the interviews and observations it’s clear that there are a lot of ways to encourage self-direction for patients with severe mental health disorders. As a result a lot of professionals start encouraging by using the basic motivational interview questions about what the patient wants in his/her life. In the Netherlands the social network is not used for patients to encourage more self-direction. They either don’t know what is in the community for the patient or the families don’t have any good relationship with the patients. In the United states the professionals have a clearer view of what the community have to offer so the patient can find solutions or achieve their dreams and wishes.. They have organizations like Foundations that provide peer support, volunteer opportunities, paid employment and inter-personal empowerment trainings who are operated by patients themselves. Professionals also have a resource sheet for patients so they can see for themselves what the community has to offer for them.

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When patients have a psychotic episode in which the professional intervenes in the situation of the patient and may admit them to the hospital. In the literature they talk about the hospitalization syndrome that can develop lack of initiative and just accepting the things what are given to them. The skills of patients are reduced and It requires a lot of power and energy to take back the initiative. In order for patients to decide for themselves they have to shape their competences. This ability is achieved through knowledge and skills and self-confidence. Confidence and skills can be practiced by means of certain interventions. As a result patients to learn to increase their strength of choice and don’t be scared to take the initiative. Self-confidence is an important aspect. While interviewing the client council it makes clear that even though they work in a council and are already really self-reliant they are not self-confident enough. In the United states they also encourage patients to build skills and competencies to be more self-directed. They do this by using stage-wise interventions. They asses the patients to see at which stage they are so they what kind of approach the whole team has to utilize for that particular patient. They also know by staging patients where they have to focus on so they can be more self-directed. In every meeting they fill in an assessment to see in what stage of their mental health recovery the patients are at.

Discussion Validity of the statements When analyzing the interviews the validity of the statements can be questioned. The professionals give their explanations trough their own reference frame. How they see the situations is always different than how other professionals in the mental health care would state it. The explanations are also not valid for every patient in the mental health care. However it can give a good general imagining of how professionals think about the self-direction of patients in the mental health care. There are also a lot of family members that I could have interviewed that would have a different opinion about the self-direction of patients in the mental health care. These family members that were interviewed agreed that self-direction is hard for their own relative with severe mental health disorders. Though there are other family members that would say that their patient are qualified for self-direction. Every person is unique and has his own experience regarding to self-direction in the mental health care. Likewise the clients in the Client council they have been in care for a number of years. They represent the group of patients that are in the mental health care. Though they answered the question based on their own opinion so it’s not clear if every patient in the mental health care thinks like this. In the United States the interviews were given in different settings that can give a barrier of the validity. One interview was given in a car, so the professional had to think about my questions and concentrate on the road. Another barrier while giving the interviews at both teams are the language barriers. It might occurred that the professionals interpreted the questions different. In addition to language barrier the reference frame of the professionals in the United states are different than that from the Netherlands. They have a different view of self-direction and experienced it different with their patients than in the Netherlands. In the United states they focus on other things like getting patients to be more independent on the public transportation than in the Netherlands. Concluded all the statements that are given by all the parties aren’t hundred percent valid, however it can give a clear view of how a small group who are involved in the mental health care , thinks about the self-direction of patients with severe mental health disorders.

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Validity of the observations In total six visits were observed. Not all behavior categories were observed. Not in every visit the professional is able to encourage self-direction. Some patients aren’t mentally stable to encourage the self-direction skills. Two patients were psychotic and it was hard to have a conversation with them. Also patients with severe mental health illnesses have negative symptoms that can stand between the behavior categories. For example a patients that suffers from negative symptoms won’t be able to radiate energy or take initiative in asking questions. Some behavior categories are hard to observe in only one visit of a patient in 5 a 10 min. In Canton the professional had short visits. She brought a patient to the doctor, afterwards brought some medicine to a regular stable patient and brought a patient to a group session at the office. I asked what she does with the regular patient. She answered that she only brings him medicine and that’s it. She doesn’t had a lot of time with the patient and there are several reasons for that. She might have a busy schedule so she has to make the visits shorts. The shorts visits of the professional could also be because she doesn’t really have a relationship with the patient. Some patients are reluctant with the help of professionals and don’t want them in their house for that long. However it wasn’t observed that the patients wanted us to be gone. Also there were some no shows in both teams so the researcher couldn’t collect a lot of data. Reliability of this research The reliability of the research is achieved because of the use of structured lists. For the interviews a turflist is used. With this turflist/scorelist the different aspects of self-directions were scored during the interview. The aspects in the turflist/scorelist were formed with the theoretical framework and the operational phase so the questions would be specific. Also by scoring the aspects of self-direction it gives an illustrational view of how many people of the three groups(professionals, family and members) encourages, support and use the aspects. The behavior categories during the observations helped with observing specific behavior. The intersubjective was enlarged by making selections. A number of aspects of the behavior is observed. With a log all the observed behavior are tracked and noted. This makes it also possible to score the observed behavior in the observation list. However as already said in the validity part the observations aren’t enough to make them reliable. Generalizability/ extern validity of this research There are a few reasons why on the one hand this research can be used in other teams and populations and on the other hand is not extern valid. First of all in other FACT teams in the Netherlands and the United states they foster to be more recovery based. With the results of this research they can use it to be more recovery based. Also the target group in the mental health care are the same. Even for patients that has not have a severe disorder this can be helpful for them as well. In the results the respondents had some aspects were they had the same answers. They all feel like they protect and are responsible for the patients wellbeing and they all try to let go of the patient and let them be self-directed. The answers even were the same on some degrees in the United States. Another reason is that a lot of the observations and interviews were similar with what was found in the theoretical framework. However because of the number of people that were interviewed and observed it’s not sure if what the three or four clients of the client council said the patients whom were screened with the self-sufficiency matrix will say the same.

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Challenges & Dilemma’s In the interviews it was clear that because of the transition of ACT to FACT the professionals feel that they have time pressure and have a caseload problem. They also recognize the affects due to the governmental cuts in the mental health. Some professionals stated that they don’t want to use time as a excuse and some realize that because of power of outside they feel like they can invest enough in all the patients of their caseload. Self-direction takes time and is not something that will develop over night. Another challenge what came out from the interviews with the professionals in the Netherlands is that they feel they have to protect and be responsible for the patient’s life. In an extend it is important to be protected and feel responsible, because patients with severe mental health disorders are often vulnerable and can be a danger to themselves. However how long should the professional be protected towards them and can they let the patients go? Patients stay in the caseload for a long time while they are functioning well and are stabilized on their medication is it because the professionals can’t let them go? In the interviews some professionals stated that they try the best to give patients the control so they can experience how to fall and stand up again. So in some degree they acknowledge the importance and value of self-direction. Tough they don’t invest in building skills so patients can be more self-directed but not enough to focus on building skills in the treatment. At last self-direction is a hot topic but how do the patients feel about it. Is it realistic for patients to be self-directed in every area so in the near future they don’t need the FACT teams anymore. Some family members were convinced that self-direction will not be possible for their sons, because they feel the situation of their sons are too critically. Also is self-direction really that important in the mental health. Maybe patients can still fulfill a satisfying life when everything is provided for them and they will answer if they like it or not. Some patients are okay with their situation and accepted it, so why change that because ‘’WE’’ professional wants them to excel in life? Shouldn’t in the spirit of ‘’self-direction’’ the patient decide whether they want to be initiative and get more control in their life?

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Chapter 10 Recommendations Introduction After the research in the Netherlands and the United States I have set up two recommendations. Collaborations on the International level is a opportunity for both parties to learn from each other. The United States and The Netherlands both see the importance of self-reliance and self-direction. However in the United States the ACT teams are more stage-wised with their patients and they have different tools to help staging patients. Some uses assessments and fill in forms. I experienced that in the teams of the Netherlands we are not that strict in procedural working. It takes time and we want to invest in the patient and not by filling in forms. However staging patients makes it clear on which phase you should invest with the patient . In addition all the team member can have consensus about each patient. Importance of The Readiness Ruler It’s not strange that patients don’t have a lot of self-confidence and so just accept everything people recommend them to do. Therefore they lack social skills and being initiative. Also In the observations and interviews the term taking initiative was frequently used by professionals and family members. They recognize that the patient doesn’t really take the initiative. So to encourage self-direction patients with severe mental health disorders need two things more self-confidence and skills and these components goes hand in hand. So in order to build up skills it’s important to know where the patient is at with their readiness to build skills on different areas.

Figure 4. Produced by the Center for Evidence-based Practices at Case Western University with support from the Ohio Department of Health, Mental Health and Alcohol & Drug addiction services

The center for evidence based practice at the Case western University implements IDDT and ACT. With the readiness Ruler the importance and confidence of the patient to change and be selfdirected can be assessed. The scale is between 0 that is not important or not confident till 10 very important and very confident. On the different areas such as psychic functioning, physical functioning, meaning of life, housing, finance, practical functioning, social functioning and day activity the patient can decide where he should take more control in. How the higher the importance and confident level on the readiness ruler is, how more initiative the patient will take on the areas initiative. It is stage-wised because 0-3 is the pre-contemplation phase, 4 till 6 is the contemplation phase and 7 till 10 is the action phase.

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An example a patients who never calls to organizations and let the case manager call for him to arrange thing. With the readiness ruler the case manager can ask the patient: ,,Oke so how important is it for you to learn how to arrange skills in order to call organizations and how confident are you about it?’’ During this process the case manager can see in what stage of change the person is and what barriers there are in order to get a higher score. Maybe the patient is scared to talk to these organizations or she is not eloquent enough etc. In addition the patient gets more insight with a abstract number on the importance and confident that eventually help her to be more initiative when she scores a 10 on both fields. Case managers can use this readiness ruler but there is one person what I discovered in my research, that is a special key for patients to get more self-direction. In the next part this person will be described. Importance of peer support In the United States the community services like ‘’Foundations’’ where I talked earlier about provide services like WRAP trainings. The service Foundations is also operated by patients and they help other patients to encourage self-direction. In the theoretical framework the American developed WRAP-training by Mary Ellen Copeland was introduced. The WRAP training also uses peer support to encourage self-direction. A peer support in an FACT Team would be of a great value. Developing selfdirection is a long but an important investment. Professionals in the Mental Health often stabilize the patients and rehabilitate them back to the society, tough they don’t take the time to teach people to maintain skills. It is easier to assume as a professional:,, Oke the patient is stable, he is doing is volunteer work and he is fine, when he/or she needs us we will step in!’’ Therefore the patients don’t get a lot of visits because he is stable, what results in neglecting to encourage and maintain skills. The FACT members already have a big caseload and in the research they stated its hard to find time. So why not lighten this burden of the team with a peer support in the team. It is one of the criteria of a FACT team to have a peer support. This research emphasized the importance of a peer support in a FACT team. To be recovery centered and to encourage self-direction amongst patients with severe psychiatric disorders, a team needs peer support. The reason is not only for the team members to take more work but it will also have a greater value in the team. Peer support shows patents a different way of a severe psychiatric disorders. The experience worker took the control in his own life and this will give the patients hope and they will help the patient foster being initiative. The peer support can use the readiness ruler or after the case manager assessed with stage the patient is at, the peer support can visit the patient and do role players to encourage skills in the specific area. I also want to address the importance to foster self-direction amongst the younger patients in the caseload. The Advocacy for encouraging self-direction amongst the younger patients. I noticed that screening the patients in the caseload of the FACT Old North that the patients who are self-reliant are between age 30 and 60. One of the severe psychiatric disorders is schizophrenia and that’s develops at around 20 years. So these patients that are self-reliant been in the mental health for a long time, have been experienced with being hospitalized and been through a lot. Eventually

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they get their life in order and participate in the society again. But now we have to develop skills for this group because some of them are not self-directed. They belong to the group whom are selfreliant but don’t have self-direction. Movisie called them the out of control-patients and with the readiness ruler and peer support we try to shift them to being self-reliant and self-directed. In my opinion it is a better investment to encourage self-direction amongst the younger patients who just experienced the mental health. It is just like raising children when you teach them things on a younger age they can easily use them later on in their life. When the younger patient is stabilized on medication that can reduce some skills, the professionals should focus on encouraging the skills again. So in the future they will be self-reliant and self-directed and don’t need to get treatment from an specialized team like FACT teams. For future studies In the United states I found more things that the teams in The Netherlands don’t do. Eventually I focused on encouraging skills. However maybe in the future somebody else can look deeper into using the community in encouraging self-direction. During the research I noticed that the Americans make a better use of community services and applying sheets with resources for the patients than in the Netherlands. The professionals I interviewed had no clue what the community has to offer, while nowadays the community is a bigger component in the treatment of patients with severe psychiatric disorder. The FACT team also try to incorporate the community more with different kinds of pilots, but I think they can also learn a lot from the Americans on this area. I also think that professionals should find a way to recur the relationships of family with patients or get a better insight of the people around the patient. These people in the social network can help encourage the self-direction with giving the patient support and help try to find solutions. So I think it is of great values to invest in the social network of the patients with severe psychiatric disorder.

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Appendix 1 Finance

Day activity

Housing

Somatic

5

Relationships Mental health 4 4

Patient 1 (1984) Patient 2 (1975) Patient 3(1952) Patient 4(1955) Patient 5(1964) Patient 6(1976) Patient 7(1948)

4

5

3

5

5

4

4

4

3

5

5

3

2

4

3

3

5

4

3

4

5

4

5

4

4

5

5

2

5

4

4

5

4

4

5

4

2

2

Patient 8(1951) Patient 9(1987)

4

4

5

3

4

4

4

2

5

5

4

5

Patient 10(1955)

3

3

5

5

5

5

Patient 11 (1975) Patient 12 (1974) Patient 13(1964)

3

2

4

4

4

3

3

5

5

3

4

3

5

4

5

3

3

4

Patient 14 (1971) Patient 15(1986)

3

4

5

5

5

4

3

2

4

3

4

4

Patient 16 (1968) Patient 17 (1969) Patient 18 (1957) Patient 19 (1962)

3

2

5

4

5

5

3

5

5

4

4

4

5

4

5

5

4

4

3

4

4

4

3

3

80

5

Patient 20(1978)

3

Addiction

4

4

5

4

Patient 1(1984)

4

General daily living routines 4

Sociaal network

Participation in the society

Criminal justice

3

3

5

Patient 2(1975)

2

3

3

3

5

Patient 3(1952)

2

4

3

3

5

Patient 4(1955)

5

5

3

4

5

Patient 5 (1964) Patient 6(1976) Patient 7 (1948) Patient 8 (1951) Patient 9 (1987)

3

4

4

3

5

2

3

4

3

5

5

5

1

2

5

2

4

3

3

5

4

4

4

3

5

Patient 10 (1955) Patient 11 (1975) Patient 12(1974)

2

4

4

3

5

2

4

4

3

5

2

3

3

3

5

Patient 13(1964)

4

4

3

3

5

Patient 14 (1971) Patient 15 (1986) Patient 16 (1968)

4

4

3

3

5

5

4

4

3

5

4

4

3

3

5

Patient 17

3

3

3

3

5

81

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(1969) Patient 18(1957)

5

5

4

4

5

Patient 19 (1962)

2

3

3

3

5

Patient 20(1978)

3

4

3

3

5

Appendix 2. Turf List Hulpverleners Sociaal netwerk (Motiveert) (Bied steun)

Patient weet wat hij wil op de volgende gebieden: (eigen inrichting geven) o Praktisch functioneren & huisvesting: Huishouden/huisvesting/basisbehoeften: boodschappen

o

Financiën( eigen beheer)

o

Praktisch functioneren: Zelfzorg( kleding, presentatie)

o

Psychisch functioneren: Vaardigheden/competenties( assertief,initiatief, mondigheid, kennis, ) Psychisch functioneren: Behandeling/medicatie(welke medicatie, zelf info op internet of huisarts opvragen) Dagbesteding (zelf gekozen, opgezocht en tevreden mee)

o o o o

Sociaal functioneren: Gezin/ relaties(steun,respect en erkenning, beslist met wie hij/zij contact heeft of welke rol ) Zingeving: Dromen en wensen ( weet wat hij kan en leuk vindt)

Hulpverleners motiveert Vaardigheden en competenties zoals( tegenovergestelde van hospitalisatiesyndroom en functie beperking)  Interesse voor zichzelf en anderen

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Sociaal netwerk ondersteunt |

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Cliënten |||

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||| initiatief zijn, niet de dingen accepteren zoals

Cliënten (Beslissen zelf> eigen invulling) |||

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ze zijn -

Visie en belangstelling voor de toekomst Enthousiasme en spontaniteit Mondigheid , beheersing van taal Zelfvertrouwen

Taken delegeren:  Bellen naar instanties  Initiatief nemen om sociaal netwerk te vragen voor zaken   Zelf oplossingen vinden voor problemen  Op internet informatie zoeken

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Beeld van Patienten Gevolgen van stigmatisering:  Op werk  Familie 

Relaties



Hulpverlening



Zelfvertrouwen

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Appendix 3 interviews in the Netherlands Interview hulpverleners Anja maatjes SPV 25-03-2014 1) Hoe vaak komt het voor in een week dat de Patienten de leiding nemen in het gesprek en kenbaar maken wat hun willen in de behandeling? Dat is moeilijk te zeggen. Het wisselt heel erg naar wie je gaat sommige mensen weten precies wat ze willen,maar dan is het niet altijd te volgen. Het komt wel voor dat Patienten de leiding nemen in het gesprek . In een week wellicht 4 van de 10. Kan in een andere week weer anders zijn 2) Motiveert u de Patienten om zelf keuzes en beslissingen te maken? Ja, maar dat verschilt per Patient. Sommige zijn heel in de war, waardoor het motiveren lastig gaat. 3) Op welke terreinen/domeinen motiveert u de Patienten? Hoe motiveert u de Patienten op deze domeinen

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Huishouden, basisbehoeften, financiën. Dat doe ik door open vragen te stellen zoals: Heb je boodschappen gedaan, wat heb je vandaag gedaan, wat ga je vandaag doen. Bij sommige mensen vraag ik heb je eten in huis. Ga je zelf koken heb je zelf boodschappen gedaan. Kom je rond met het geld. Je ziet vaker bij Patienten dat ze aangeven dat ze te weinig geld hebben. Dat de Patient het wel of niet redt is dat aan u of de Patient. Aan de Patient als die zegt ik heb 5 euro daar red ik het mee. Dan vraag ik wel verder wat ga je er van kopen, maar het is aan de Patient om te bepalen of hij/zij daar tevreden mee is. Zelfzorg: zelfzorg vind ik wel een lastig gebied om te motiveren. Je ziet bij onze Patienten dat ze onverzorgd zijn. Ze dragen kapotte kleding, vieze kleding en ruiken niet fris. Het ligt eraan of het steeds gebeurd dat je echt ziet dat hij/zij continue slechte zelfzorg heeft. Dan probeer ik het wel voorzichtig te zeggen’’ is je wasmachine kapot of is er wat met je gas en licht’’, maar het blijft wel lastig om dat te motiveren. Wat is er lastig aan? Omdat je iemand toch heel direct aanspreekt op zijn zelfzorg. Terwijl zelfzorg wel iets is wat hij zelf, maar het is wel belangrijk in contact met dat hij goede zelfzorg heeft. Anders gaat het met de sociale contacten ook niet zo geweldig, want dan gaan mensen met een grote bocht om hem heen lopen. Hoe ver ga je om de cliënt te laten douchen? Ligt aan het antwoord. Kijk iemand moet wel de kans hebben van wat hij niet bewust van is, bewust te worden en er zelf iets mee te doen. Behandeling/medicatie: Ligt aan de Patient, soms vraag ik wil je de bijsluiter wil je het zelf lezen of samen lezen. Of vraag ik of ze er later op terug willen komen. Ook geef ik aan dat ze informatie zelf kunnen vinden op internet en dat kunnen ze ook samen met mij doen. Bij welke Patienten is het wel mogelijk om het hun zelf te informatie te laten opzoeken? Ik bied het aan hoe ze de informatie willen weten, of vraag of ze al wat van de medicatie weten. Als iemand net begint met medicatie is het heel anders dan iemand die na een aantal maanden vraagt: ‘’ Wat neem ik eigenlijk in?’’ Dan vraag ik wat heb je gehoord , waardoor je informatie wil etc. Dagbesteding: Nooit ongevraagd als iemand dagbesteding heeft waar hij tevreden mee is moet hij er lekker mee doorgaan. Het is wel goed om te kijken als iemand extra tijd over heeft of als je denkt er zit meer in hem om meer te doen dan kan je wel gaan kijken of er meer mogelijkheden zijn voor dagbesteding. Hoe prikkel je ze dan. Ik ga het eerst vragen of de Patient het wil. Dan ga ik vragen stellen om te kijken welke interesses hij/zij nog meer heeft en of hij/zij weet welke mogelijkheden er zijn. Hoe weet je of de Patient er open voor is om geprikkeld te worden? Hoe de Patient reageert. Als je vraagt naar wat hij nu doet en wat het inhoudt en of hij er tevreden mee is . Dan kan je in de antwoorden zien of de Patient het zwaar vindt of zich juist verveeld dan kan je daar op doorvragen. Gezin/relatie: Ik probeer zicht te krijgen in de vrienden van hem/haar. Je kijkt of hij/zij eenzaam is en contact heeft gehad met familie/vrienden/kinderen. Patienten hebben toch wel behoefte in contacten ik vraag het na, maar ik beïnvloed het niet. Dromen/wensen : Dat kan niet bij iedereen maar ik vraag dan wel altijd wat hij/zij nodig heeft om die droom of wens te bereiken. Dit hoort echt bij de rehabilitatiemodel. Bijvoorbeeld als iemand de MBO nog niet heeft afgemaakt en hij wilt astronaut worden, dan moet je heel veel stappen terug doen om te kijken wat hij nodig heeft en die droom te bereiken. Het is ook lastig omdat mensen afhaken bij een wens die steeds terugkomt. Ze komen er dan niet aan toe en gaan niet gestructureerd op zoek naar mogelijkheden. Hoe los je dat op? Ik bied aan om samen te kijken. als iemand het afwijst dan laat ik voor wat het is en dan kijk ik of er ook andere wensen zijn die realistischer zijn in korte termijn. Vaak hebben Patienten veel wensen en dromen en hebben ze het idee dat ze het ook kunnen. Het is niet aan ons om te zeggen dat

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kan je helemaal niet. Het hebben van wensen en dromen kunnen al vervulling van iets zijn. Ik ken iemand die een slechte zelfzorg heeft en slecht eet. Hij zei een keer: ‘’ik zou wel een restaurant willen openen’’, en toen zei ik ‘’Leuk denk je dat het je ooit zou kunnen doen?’’ en hei zei weer :’’Ja zeker wel ooit maar nu niet’’. Hoe probeert je dat weer in de behandeling te laten terugkomen? Af en toe vraag ik wel hoe het met de dromen en wensen zijn. Je moet niet constant hetzelfde zeggen, want het kan ook de andere kant op werken als je steeds vraagt . De Patient wordt hierdoor geconfronteerd met het feit dat hij zijn dromen nog niet heeft bereikt en zo neem je ook weer die dromen en wensen van hem af. Het is wel goed om er over te brainstormen en over te praten ook al komt hij/zij er nooit aan toe. Het is niet altijd haalbaar. Hoe vaak zou het wel haalbaar kunnen zijn als het vaker wordt aangeboden? Weet je onze doelgroep is heel erg ziek. Sommige hebben last van positieve symptomen. Ze hebben hierdoor weinig energie voor andere dingen. Dan zijn er ook mensen die negatieve symptomen hebben hierdoor zijn ze inactief en door medicatie kan je ook je energie verliezen. Dat zijn allemaal remmende factoren om die dromen en wensen haalbaar te maken. Het klopt dat door die positieve en negatieve symptomen de vaardigheden en competenties ook verminderen. Worden die vaardigheden en competenties gestimuleerd zodat ze kunnen bereiken wat ze willen bereiken? Eigenlijk komen we er niet aan toe zouden we wel moeten doen, maar daar hebben we mankracht voor nodig. Als je iemand daar echt bij wil ondersteunen heb je daar echt tijd voor nodig. Op het moment dat je met iemand er aan de slag gaat en dat wordt gestopt, omdat je ook andere dingen moet doen, is de Patient niet in staat om eigen machtig aan de slag te gaan. Dat is vooral bij onze doelgroep. In de psychiatrie zijn er verschillende lagen die mensen kunnen dat prima alleen. Maar bij ons niet omdat ze te ziek zijn. De vaardigheden kunnen op zekere hoogte wel verbeterd worden, maar niet volledig. Vooral Patienten met de diagnose schizofrenie. Elke keer wanneer de Patient psychotisch is geweest functioneert hij/zij slechter. Daarnaast zie je ook dat ze drugs gebruiken en geen goede structuur hebben. Het maakt al heel veel uit als je getrouwd ben of in een goede relatie zitten om beter te kunnen functioneren. En de Patienten die wel stabiel zijn en zelfredzaam zijn? Sommige hebben die vaardigheden, maar door de ziekte is het verminderd of door bijwerkingen van de medicijnen. Je ziet ook mensen die echt niet in staat zijn om dingen zelf te doen. De vaardigheden kunnen niet nog meer versterkt worden door de mankracht, de ziekte en omdat we niet altijd het oog ervoor hebben. Bijvoorbeeld de sportgroep dat zijn Patienten die je op kantoor spreekt en dan zie je ze op de sportgroep en doen ze hele gezonde dingen. Dan wordt je wel even op verkeerde been gezet, omdat je toch ziet dat ze in staat zijn om sociaal te zijn, motorisch te zijn en het leuk vinden om elke week op een vaste tijdstip te komen. Er is dus wel een bepaalde beeld waardoor de vaardigheden niet echt gestimuleerd kunnen worden. Er zijn genoeg ideeën om met Patienten te doen als onderdeel van de behandeling. FACT is sociale psychiatrie. De belangrijkste obstakel zijn de financiën. Er wordt steeds verder bezuinig. Wat je uiteindelijk nog bij mensen thuis kan doen is medicatie afgeven en een gesprekje. Iedere hulpverlener wil best wel veel meer doen, maar de Patient is niet in staat om zelf te zeggen: ‘’Ik wil dit en dat.’’ Patienten hebben jaren geleerd om zichzelf te redden en dat lukt ook wel. Maar de middelen zijn er niet om leuke dingen te doen zoals sportgroep, vaardigheidstrainingen, bioscoop, museums en andere activiteiten. Het hangt tegenwoordig allemaal af van mantelzorgers etc. en partijen waar ook op bezuinigd wordt. Door al die bezuinigingen moeten we ondertussen wel creatiever worden bijvoorbeeld door zelf een sportgroep op te

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zetten. Vaardigheden- Zelf bellen naar instanties: Ja dat motiveer ik wel . Hoe vaak lukt het? Het valt tegen. Het is ook wel bekend dat het lastig is om instanties te bereiken. Ze zitten dan lang in de wachttijd en dan met hun prepaid telefoontje gaat dat snel op. Ook is het een drempel om hier op kantoor te bellen voor sommigen. Als het echt snel moet gebeuren dan hebben we de verantwoording om te bellen voor hen. Als het niet veel kwaad kan dan kan de Patient het wel zelf. Als iemand problemen heeft met de huur dan moet je geen drie maanden wachten. Stel het lukt de Patient niet om het te regelen, omdat hij bijvoorbeeld het nummer niet heeft van de woningbouwvereniging, dan dreigt er straks een uithuis zetting. Dan is het wel onze verantwoordelijkheid. Als iemand lid wil worden van de bibliotheek kan ik aanbieden om te helpen, maar als hij dat niet wil dan ga ik het ook niet overnemen. Voor het aanvragen van de Rotterdam pas heb ik wel een proactieve houding, omdat het een goede pas is met veel voordelen om gratis activiteiten te doen. 4) Hoe vaak tonen ze initiatief in het vinden van oplossingen/behandeling/dromen en wensen en schakelen ze de sociaal netwerk hierbij in? Dat zou eigenlijk wel gezonder zijn om beroep te doen op sociaal netwerk. Je neemt als hulpverlener sneller de taak op je om samen met de Patient te kijken in plaats van beroep te doen op het netwerk. Misschien doen we dat wel te vaak vooral , omdat je het idee heb dat de netwerk van een Patient vaak niet bestaat, doordat ze ziek zijn geweest. Omdat ze zo ziek zijn geweest dat de netwerk niet meer in intact is. Is er wel zicht op het netwerk van de Patient? Ja op zich wel als je de behandelplan maakt en tijdens intake worden er zaken gevraagd over de vrienden en familie van de Patient. Maar zeker in een grote stad zie je dat de Patienten vaak alleen zijn. Neemt de Patient het initiatief om aan te geven dat ze iemand hebben in de sociaal netwerk die hun kan helpen of laten ze het sociaal netwerk buiten beschouwing?. Er zijn mensen die nog heel goed contact hebben met het sociaal netwerk, waardoor het vanzelfsprekend dat ze hun vragen. Bij mensen waar het niet zo is wordt het niet besproken. Misschien ook wel te weinig, omdat het een mechanisme is vanuit de bemoeizorg en ACT dat we alles vanuit het team doen en de sociaal netwerk weinig betrekken. Je merkt nu dat die mechanisme zich steeds meer terugtrekt. Het is geen slecht idee om het systeem meer te activeren. Hoe kan het meer geactiveerd worden. We zouden vaker moeten inventariseren welke personen er rondom de Patient zijn. Nu gebeurt het alleen bij een intake of bij het begin van een behandelplan. Het zou goed zijn als we minder vanuit gaan dat het contact met het systeem zoals in het begin was, het zelfde blijft en onveranderlijk is. Want wat ik bij mezelf merk is, dat in contact met het systeem je vaak hoort dat de familieleden ongelofelijk belast zijn. Dit komt mede door de periode toen het slecht ging met de Patient, waardoor ze overbelast raakten. Dan begrijp ik het heel goed dat ze dan weinig contact hebben met de Patient. Als de Patient weer stabiel en zelfredzaam is er dan nog sprake van overbelastheid van de familieleden? Ja daar zouden we meer bij stil moeten staan. We werken ook allemaal in patronen en dat is ook allemaal onderzocht en we doen veel dingen binnen kaders. Terwijl er best meer speling/flexibiliteit in kan komen. En als Patienten zelf oplossingen vinden in problemen kom je als hulpverlener sneller met adviezen of laat je het aan de Patient over. Ik kijk wel eerst wat er bij de Patient leeft, welke ideeën hij/zij heeft. Maar dat is ook lastig, omdat ze soms niet weten waar ze oplossingen vandaan kunnen halen. Maar ik ben zelf ook wel een doener. Laten we even dit kijken etc. Ik ga niet ongevraagd dingen opleggen, maar het hoort wel bij bemoeizorg om touwtjes in handen te nemen. Dat proberen we niet altijd te doen, maar het is wel een neiging wat we

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hebben. Maar we hebben in loop van de jaren ook wel geleerd om niet sneller te rennen dan de Patienten. Als dingen niet komen dan is de behoefte ook niet zo groot. Het is ook constante aftasting om te onderzoeken of het onvermogen is van de Patienten of ze vinden het gewoon niet zo belangrijk. Als ze een oplossing noemen hoeft het niet te betekenen dat de Patient er gelijk iets mee wil doen. Soms fantaseren Patienten gewoon en vinden ze het fijn om te zeggen ik wil dit graag en daar blijft het bij. Ondertussen leven ze hoe ze leven en vinden ze dat ook wel prima. Maar u zegt sommige Patienten weten niet waar ze oplossingen kunnen vinden en zoeken. Hoe ondersteunt u ze hierbij. Internet daar kan je veel vinden. Dit doe ik dan samen met ze omdat ze bijvoorbeeld niet weten hoe een computer werkt. De Patienten willen ook graag wel samen dingen uitzoeken. Ondersteunen en samen doen is dus een belangrijk aspect. Het komt niet zo vaak voor dat Patienten zelf een oplossing vinden. Een enkele keer ben ik verbaasd als het wel lukt en het feit dat ik verbaasd ben geeft wel aan dat het niet zo vaak voor komt. Hoe komt het dat u verbaasd bent als een Patient zelf een oplossing vindt? Door de ziekte zijn mensen niet in staat om oplossingen te vinden. Daarnaast heb ik ook een bepaalde beeld van Patienten, omdat ik al jaren heb gewerkt met de groep met ernstige psychiatrische aandoeningen. Hierdoor is mijn beeld gedeformeerd. Soms moet ik mezelf wakker schudden,want er zijn ook mensen met schizofrenie die beter functioneren, maar die komen wij niet zo vaak tegen. De Patienten die zelfredzaam zijn de Patienten die voorheen bij IMR in zorg waren. Door de transitie hoop ik dat mijn beeld zal wegtrekken. Ik heb altijd in bemoeizorg gewerkt of in een kliniek. ik heb met de ziekte mensen te maken gehad. Terwijl dat niet de complete doelgroep is. Het is ook een remmende factor omdat ik er nog niet mee om kan gaan. Aan de andere kant zijn we ook realistisch dat sommige mensen het niet kunnen. Dat is de reden dat ze bij ons in zorg zijn. Hierdoor blijven ze nog overeind. We moeten ze ook niet overschatten. De Patienten die het wel is gelukt zijn ze zelf gestimuleerd of is er iemand anders die het heeft waargemaakt waardoor het lukte. Combinatie van maar ik denk de behandelaren nog het minst. Realistisch gezien hoe vaak zien de behandelaren de Patienten. Sommige zie ik maar een keer per week. Het initiatief komt van de Patient en ook wel het systeem. Is het goed dat de systeem en Patient het zelf doen? Voor sommige Patienten is het wel goed, maar er zijn ook mensen waar ik blij voor ben dat ze gewoon eten en huis hebben en buiten het ziekenhuis zijn. Daarnaast zijn er ook Patienten die meer ondersteuning en stimulans van ons nodig hebben. Welke groep is dat? De stabiele Patienten die ook goed kunnen aangeven dat ze meer willen in hun leven. Maar daar moet je veel meer tijd insteken. Zo iemand moet je eigenlijk elke dag op sleeptouw moeten nemen en een stimulerende factor zijn voor die persoon. Dat kan door ochtends bellen om naar die ene afspraak te gaan. De Patient heeft vaak een duwtje in hun rug nodig, om meer uit zichzelf te halen. 5) Als een Patient die al zelfredzaam is iets wil ondernemen of doen hoe vaak laat u ze zelf de taken uitvoeren op de volgende terreinen: ( zie turflijst) als ze het aangeven dan altijd. Dat is voor de zelfbeeld heel goed. 6) Heeft u ingegrepen in de inkomsten en uitgaven van Patienten, zoals dat u zelf besliste wat hij met het geld kon doen of kopen en/of bewindvoering Als iemand geen bewindvoering heeft dan doe ik het niet. Maar als blijkt dat iemand zijn rekeningen niet kan betalen of geen boodschappen doet, dan zijn we wel verantwoordelijk om bewindvoering aan te vragen. Als iemand in zijn eigen woonomgeving kan blijven door middel van bewindvoering dan vind ik het wel okey als wij ingrijpen in zijn financiën. Als iemand alleen diepvriesmaaltijd wil eten moet hij dat zelf weten, maar als iemand gedreigd

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wordt om uithuis te gaan of criminele zaken doet dan zijn we verantwoordelijk. Sommige willen geen bewindvoering, omdat ze denken dat ze helemaal geen geld meer krijgen. Ze hebben niet idee dat door bewindvoering je je rekeningen kan betalen zonder schulden. De Patienten die meestal bewindvoering krijgen leven chaotisch en kunnen geen verantwoording dragen. Daarnaast hebben ze geen overzicht. Als je heel lang niet in een bepaald structuur leeft dan verlies je ook het zicht dan weet je ook niet meer hoe je gestructureerd kan leven. Als je altijd al bij je ouders heb gewoond en daar alles werd geregeld is het lastig om dan zelf verantwoording te dragen voor zaken. Ik hoef niet gelijk bewindvoering aan te vragen en de regie over te nemen. Ik kan ook de Patient bewust maken, zodat hij het ook zelf anders kan doen zonder dwangmaatregelingen. 7) Heeft u geholpen met het vinden van dagbesteding voor de Patient Ja hoor. Wie neemt het initiatief hierin? De vraag wordt door mij gesteld en soms zegt de Patient zelf ‘’ik wil wat doen ‘’en dan ga je daar op in. Dan stel ik vragen zoals: Waar denk je aan of wat zou je willen . Bij sommige Patienten opper ik dat ze dagbesteding nodig hebben, omdat ze dan de hele dag binnen zijn. Dan vraag ik ook of ze de hele dag binnen willen zijn of niet. Je stelt zoveel mogelijk oriënterende vragen. Het is een vast onderwerp in gesprek. Het is veel lastiger als de Patient niet zelf op dingen kan komen en veel ondersteuning nodig heeft in het vinden van een dagbesteding. Als je iets oppakt met een Patient kan je niet zeggen in de komende 6 weken heb ik geen tijd als je weet dat er Patienten zijn die het niet zelf kunnen . In mijn functie moet ik medicatie brengen behandelplan besprekingen doen en staat dagbesteding niet altijd voorop. In een FACT Team moet je wel van alles een beetje doen hierdoor is mijn rol veelzijdig en moet ik al mijn taken goed verdelen. Hierdoor komt het wel voor dat ik te weinig ondersteuning biedt in het vinden van dagbesteding. Wat gebeurt er als u niet met de Patient samen dagbesteding zoekt? Soms helemaal niks dan blijft het bij de vraag en soms gaat de Patient zelf zoeken. Ik kijkt altijd eerst of de Patient zelf zaken kan doen. Als een Patient in staat is om dagbesteding zelf te vinden dan is dat prima. Als iemand wensen heeft en verwacht dat ik er veel tijd insteek laat ik hem wel in de steek. Hoe vind u dat? Ik vind het vervelend maar het is de waan van de dag . Ik weet dat het nou eenmaal zo is. Het is niet goed maar daarmee moet je het doen. Ik kijk ook wel binnen in het team wie er meer tijd heeft om de persoon te ondersteunen. Dan is het natuurlijk fantastisch als we stagiaires in het team hebben die het kunnen oppakken met de Patient. 8) Op welke momenten vind u het moeilijk om taken te geven aan een Patient die zelfredzaam is. Op momenten dat ik twijfel dat het gaat lukken. Als het niet lukt en het verstrekkende gevolgen kan hebben voor de Patient. Als je bij iemand thuis bent en je ziet allemaal stapels rekeningen en ik zeg er wat van dan kan de Patient zeggen: ‘’Ik doe het wel allemaal.’’ Terwijl een week of twee later bezoek je hem weer en is de stapel hetzelfde gebleven. Aan de ene kant denk ik ‘’oke doe het nou maar ‘’en aan andere kant als ik zie dat het niet gebeurd en iemand houdt het af is het moeilijk om de regie bij de Patient te laten zonder dat iemand zijn hoofd stoot. Ik weet allang dat de brieven belangrijk zijn en er iets gedaan moet worden. Ik wil hem beschermen, maar zijn autonomie gun ik ook. Ik voel me verantwoordelijk als ik de gevolgen toelaat bijvoorbeeld wanneer de politie langskomt door een boete. De Patienten snappen door de verwardheid de situatie niet. Dan is het voor mij wel een afweging of ik dan dwingender moet worden om in te grijpen of niet. Op de momenten die u afweegt , op welk punt beslist u om toch dwingende maatregelen te nemen? Ik toets het altijd in het team, want er komen ook andere hulpverleners langs bij de Patient die wellicht zaken hebben geobserveerd. In het team bespreken we dat wat de interventies zijn. De bescherming is dat ook een belemmering voor Patienten die het wel taken zelf kunnen doen. Ik heb dat wel afgeleerd, als Patienten zeggen dat ze het kunnen dan prima, doe het maar zelf. Je kan altijd hulp en ondersteuning aanbieden voor wanneer het niet lukt. Dan zeg ik bijvoorbeeld als het niet lukt bel dan maar gewoon dan kunnen we samen er naar kijken. Ik heb niet de neiging om de taken over te nemen. De enige moment

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wanneer u taken wil overnemen is dus wanneer u ziet dat er grote consequenties zijn? Het is belangrijk dat je bij de Patient binnen mag blijven komen. Je moet respect hebben voor de Patient . Op een gegeven moment ga je proactief zijn als je ziet dat het problemen gaat geven als je hem de taken geeft.

9) Hebben EPA Patienten de juiste vaardigheden en competenties om zelfregisseur te zijn. Sommige wel en sommige niet. Als een Patient een gedesorganiseerde type van schizofrenie heeft, is de psychose wel verbleekt maar desorganisatie blijft. Dan moet je meer regie nemen anders wordt het nog chaotischer voor de Patient. Iemand met en paranoïde waan is nog best wel in staat om dingen zelf te ondernemen. Betreft behandeling en medicatie is het belangrijk dat je kan voorzien naar tevredenheid van de Patient. Heel veel Patienten hebben geen ziektebesef en willen geen medicatie. Heeft iemand geen maatregel dan is het hun keuze als ze geen medicatie willen. Dan hebben ze ook meer autonomie dan mensen die een rechterlijke machtiging hebben en gedwongen medicatie krijgen. Sommige Patienten beseffen niet dat met de medicatie, het de Patient juist lukt om meer regie te krijgen in hun leven . Het is ook belangrijk dat e Patient zich kan redden in zijn omgeving. Als de Patient het niet redt dan kan je hem niet maar laten in zijn omstandigheden, omdat hij autonoom is. 10) Hoe draagt u bij om de vaardigheden en competenties te vergroten. Het is belangrijk om er oog voor te hebben . iedere mens kan wel iets in de dingen die hij wil en het is ook wel zoeken in de hele kleine dingen. Maar iedereen kan wel een talent of vaardigheid zoeken en benoemen. Als iemand niet in staat is om de huis op te ruimen en het wel wil kan je via hele kleine dingen bijvoorbeeld hem bewust er van te maken. Als iemand in staat is om zijn salontafel op te ruimen, maar niet heel het huis is dat al goed. Als iemand er niet mee zit dan is het niet aan mij om hem te dwingen om zijn hele huis op te ruimen. Als ik zeg je kan hartstikke goed tekenen, je moet gaan tekenen en de Patient kan het wel maar wilt het niet , dan moet ik hem niet dwingen om iets met zijn tekenkunsten te doen. Je moet goed kunnen aansluiten bij de Patient en veel in gesprek gaan om de vaardigheden en competenties eruit te krijgen. Ik grijp soms terug naar het verleden van de Patient. Of dan vraag ik of de Patient een denker of een doener is. Al pratend kom je achter veel vaardigheden en talenten van de Patient. Het is zoeken mar als de Patient niet die zoektocht aan wil gaan moet je het ook niet forceren. 11) Hoe schept u meer zelfvertrouwen bij Patienten Door nadrukkelijk de goede dingen te benoemen. ‘’Wat gaat goed’’ en ‘’ik zie dat dit hartstikke goed gaat’’. Je moet Patienten altijd hoop geven. Het kan even duren maar het komt goed. Elk mens heeft een schouderklopje nodig. Er is de neiging om juist op de problemen te letten. Ik ben er wel bewust van en ik zie ook dat mensen groeien als je complimenten geeft over alles, zelfzorg, keuzes en beslissingen etc.. 12) Kent u de dromen van de Patienten en draagt u bij het verwezenlijken van de dromen en wensen van Patienten. Niet van iedereen. Sommige kunnen het niet toelichten. Bij de behandelplan kopje zingeving, als je dat beschrijft zeggen mensen meestal: ‘’ ja ik vind het goed zo hoe ik nu leef. Dat mensen zeggen’: ‘’het is goed zo’’, hoort het bij de ziekte of komt het doordat ze gebrek hebben aan vaardigheden (zoals ambities voor de toekomst). Ze hebben het idee dit is het. Sommige zijn er niet van bewust of zijn niet bezig met hun toekomst en ambities. Er zijn Patienten die geen uur vooruit kunnen plannen. Hierdoor is het

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moeilijk om mensen bewust te maken dat er meer uit hun leven te halen is dan wat ze nu doen. Dan vraag ik me ook af is het mijn wens of die van de Patient. Als de Patienten hun omstandigheden accepteren, verbeterd dit hun kwaliteit van hun leven? Ik vind wel dat je een poging moet maken om duidelijk te krijgen wat hun wensen zijn. Het is een hele zoektocht. Het is lastig omdat je er veel tijd in moet investeren. In gedeelde caseloads is het lastig om de collega’s het zelfde spoor laten te nemen bij de Patient. En door verschillende planningen elke week is het lastig om een droom of wens van de Patient te volbrengen. . Dan ben je paar weken later bij de Patient en dan is de droom of wens weer weggezakt en vaak weten de Patienten het ook niet meer wat ze vorige keer besloten. Toen ACT net begon had een gemiddelde FTE fulltime professional maximaal 10 Patienten. Tegenwoordig moet je meer Patienten bedienen waardoor er minder tijd over is. Kunnen de wensen niet op andere manieren bereikt worden? Ja bijvoorbeeld door het systeem bij in te schakelen. Maar dan moet je wel contact hebben met het systeem. Dan moet ik investeren in het systeem om de volgende stappen te kunnen maken. Ik moet investeren in het activeren of zoeken van de systeem en om de verhoudingen weer te herstellen dat kost allemaal tijd

Interview Vesna Ilic maatschappelijk werker 8 april 2014 1) Hoe vaak komt het voor dat de Patienten de leiding nemen in het gesprek en kenbaar maken wat hun willen in de behandeling? Als hulpverlener ga je met een doel naar een Patient toe en dat kan zijn voor medicamenteuze behandeling , financiële hulpverlening of motiverende gespreksvoering. Op het moment dat Patienten zelfredzaam zijn en al heel veel dingen zelf kunnen dan nemen ze meer het regie in het gesprek. Want dan geeft hij/zij vaak zelf aan wat zijn behoeften zijn en wat hij nodig heeft van ons. In een week zie ik ongeveer twintig Patienten soms minder soms meer. Van die twintig Patienten weten de helft of iets minder van de helft wat hun behoeften zijn en maken ze deze kenbaar. 2) Motiveert u de Patienten om zelf keuzes en beslissingen te maken? Op welke terreinen/domeinen motiveert u de Patienten? Hoe motiveert u de Patienten op deze domeinen Ik motiveer Patienten inderdaad om zelfstandig te leven en zelfstandig keuzes te maken. Patienten die zelfstandig wonen maken elke dag keuzes om bijvoorbeeld naar vrijwilligerswerk te gaan of boodschappen te doen etc. Dus daar in probeer je ze te motiveren. Als er tegenslagen zijn of als er iets is, waardoor ze twijfelen of het niet zien zitten probeer je ze te stimuleren Hoe doe je dat? Door motiverende gespreksvoering: ‘’Wat is er nu aan de hand, wat zijn de voordelen van bijvoorbeeld het hebben van dagbesteding en wat zijn de nadelen. Zet dat maar op papier, zodat het overzichtelijk is ‘. Met zulke opmerkingen kom je al een hele eind verder. Daarin neemt de hulpverlener de regie, maar op het moment dat mensen in goed vaar water zijn en alles redelijk verloopt, dan kan je achterover leunen. De Patient geeft zelf dan aan wat hij wil. Er zijn ook Patienten, zoals FACT Patienten, die kampen met weinig geld en veel schulden, slechte zelfzorg, maar aan de

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andere kant niet toekomen om dat soort zaken op orde te krijgen. Je motiveert met een ander doel bij de instabiele Patienten. Bij hun ben je meer bezig met primaire behoeften. Bij reguliere Patienten heb je een andere invalshoek. Welke invalshoek is dat? Op het moment dat ze alles op de rit hebben en ze doen nu vrijwilligerswerk, maar ze willen een betaalde baan kan je ze daar naar toe motiveren. Er zijn heel veel Patienten die een betaalde baan willen ook de instabiele Patienten. Hoe wordt het gemotiveerd. Je kijkt naar wat ze willen en wat de mogelijkheden zijn. Als een Patient zegt ik wil piloot worden dan kijk je wat ze nodig hebben en wat de mogelijkheden zijn. 3) Hoe vaak tonen ze initiatief in het vinden van oplossingen/behandeling/dromen en wensen en schakelen ze de sociaal netwerk hierbij in? Ik denk dat zowel FACT Patienten als de reguliere Patienten moeite hebben met het nastreven van hun wens. Voor de reguliere Patient is hun wens en duidelijker en hebben ze dit helder voor zichzelf bedacht. Die Patienten kunnen hun wens ook benoemen. FACT Patienten is het nog erg een chaos op allerlei gebieden. Ik heb nu bijvoorbeeld een Patient, een reguliere Patient die zelfstandig woont. De Patient volgt een opleiding aan de kunstacademie, maar dat vindt ze onder haar kunnen. Ze vind dat ze meer en beter kan. Ze is zelf aan het kijken naar een andere opleiding waar meer van haar verwacht word en ze meer kan leren. Dit kan ik alleen stimuleren en ondersteunen. Ze heeft het aan mij verteld en ze is nu bezig met het zoeken naar de juiste school. Dus ik leer meer van haar dan zij van mij. Soms is ze wel onzeker, want ze is bewust van het feit dat ze een psychotische terugval kan krijgen. Ook weet ze dat de medicatie haar creativiteit kan onderdrukken. Hoe ondersteun je haar daarbij? Je bespreekt haar onzekerheid. De reden dat ze onzeker is komt doordat ze psychotisch kan zijn. Ze is dan bang dat mensen dat kunnen zien en daar voelt ze zich onzeker over. Ze heeft de label psychiatrisch Patient en dat maakt haar ook onzeker. 4) Als een Patient die al zelfredzaam is iets wil ondernemen of doen hoe vaak laat u ze zelf de taken uitvoeren op de volgende terreinen: ( zie turflijst) Dat is sowieso de insteek. Als mensen vragen wil je even bellen dan zeg ik eerst: ,, Hier is me telefoon bel maar eerst even zelf, als je niet uitkomt dan zit ik er bij. Probeer het eerst zelf. Je kan waarschijnlijk meer dan wat je zelf denkt.’’ Als de ervaring is dat de Patienten niet serieus worden genomen bij instanties dan bel ik wel . Initiatief nemen om sociaal netwerk te vragen voor zaken. Je kan de Patient vertellen wat de mogelijkheden zijn in de wijk. Bijvoorbeeld waar de buurthuis is etc. daarmee ben je bezig met vergroten van netwerk. We merken wel dat we weinig gebruik maken van de netwerk, maar we werken er steeds meer naar toe door een pijler ‘’Netwerk in de wijk’’. Ik denk dat de Patienten sneller bij ons komen dan bij hun eigen netwerk. En als het niet lukt met ons dan pas gaan ze naar het sociaal netwerk. Sommige Patienten zijn al jaren in de psychiatrische zorg. Hierdoor staan de hulpverleners dichterbij de Patient dan het sociaal netwerk. Sommige Patienten hebben in de loop van de jaren de familie het heel zwaar gemaakt. Sommige families kunnen het niet meer aan en zijn belast geraakt. Dat beïnvloed de relatie op een negatieve manier, waardoor ze geen contact meer hebben met de Patienten. Ook wanneer ze weer jaren stabiel zijn is de stap nog steeds heel groot. Hoe motiveren de hulpverleners de Patienten om de netwerk meer te betrekken in het leven van de Patienten? Ik denk dat dat nog te weinig gebeurd. We hebben ouderavonden en niet alle Patienten zijn er van gediend dat vader en moeder komen. Daarnaast zijn er ook families die heel erg betrokken zijn en ook families die juist niet. Ja, wat kan je daar aan doen. Wat ik doe is de familieleden informeren met toestemming van de Patient. Het is natuurlijk fijn als er een contactpersoon is die je kan

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betrekken in de behandeling. Zelf oplossingen vinden voor problemen: Dat hoop je altijd. De hulpverleners zijn er altijd mocht het niet lukken dan grijpen we in waar we kunnen. Op welke moment grijp je in? Op het moment dat de Patient zegt ik regel de financiën en de huur wordt niet betaald, dan grijpen we in. Want dan zie je dat de Patient niet adequaat kan handelen en door zijn handelen hij zijn huis kwijt raakt en hij maatschappelijk teloorgaat. Internet informatie zoeken: Heel veel mensen hebben geen internet dus dan ga je er vanuit dat mensen die internet hebben zelf informatie zoeken of mensen kunnen hier komen tijdens inloopuren. De jongere generatie is meer actief met het zoeken van informatie op het internet. De oudere generatie heeft er moeite mee. Echter zijn er ouderen die open staan voor een internetcursus. 5) Heeft u geholpen met het vinden van dagbesteding voor de Patient Ja 6) Hoeveel bijdrage heeft u daarin geleverd en wat heeft u daarvoor gedaan Dagbesteding vinden met de Patient is heel moeilijk, omdat ze hoge eisen stellen aan zichzelf, een betaalde baan willen en meer willen dan mogelijk. Hierdoor raken ze teleurgesteld en voelen ze zich onzeker. Echter op het moment dat ze een baan vinden of vrijwilligerswerk dan zijn ze ook echt tevreden ermee. Het vinden van een dagbesteding kost veel energie, omdat Patienten vaak ambivalent zijn. Ene keer wel willen, andere keer weer niet. Daarbij zien ze ook veel obstakels op de weg en maken ze zichzelf het moeilijk. Hoe maken ze het moeilijk voor zichzelf? Door heel veel van zichzelf te verwachten en onzeker te zijn. De Patienten hebben voor een langere tijd niks meer gedaan dus ik denk echt een stuk onzekerheid. Welke verwachtingen hebben ze? Ze hebben een heel ander beeld, omdat ze door hun ziekte heel lang niet hebben gewerkt. De Patienten zijn na een lange tijd weer stabiel en re-integreren in de maatschappij, maar dat is een heel nieuw ervaring. Dat kan een drempel zijn en daarin moeten de hulpverleners de Patienten in motiveren. En dat kan de ene keer beter dan de andere keer. Op welke momenten zijn dat? Als de Patient zodanig gemotiveerd is. Soms moet je de Patient ook op elke stap begeleiden, hand-in-hand. Soms zijn er Patienten die afhaken, omdat ze onzeker zijn. Opeens komen er dan drempels , waardoor ze het beeld hebben dat ze het niet willen of kunnen. Hoe worden die drempels weggenomen? Soms lukt het niet en dat kost dus heel veel energie om die drempels weg te nemen. Soms heb je er ook geen tijd voor en dat zou eigenlijk niet een excuus moeten zijn. Maak je dat vaak mee dat er geen tijd is voor het inrichten van de leven? Dat ligt ook aan de Patient een FACT Patient heeft meer tijd nodig dan een regulieren Patienten. 7) Op welke momenten vind u het moeilijk om taken te geven aan een Patient die zelfredzaam is. Op het moment dat een Patient zelfredzaam is heb ik er geen moeite mee. Zij vinden het fijn dat ze feedback krijgen en terugkoppelingen. Er zijn dus nooit momenten dat je denkt ik neem nu even het regie over? Nee, soms heb ik me twijfels maar dan bijt ik me lip . Je leert ook door te vallen en op te staan dat hoort bij het leven. Soms moet iemand hard op zijn nek gaan om te zeggen, ‘’ oke zo dat het ik dus niet moeten doen’’. De kans bestaat dan een Patient struikelt en valt, maar het kan ook zijn dat de Patient valt en blijft staan.

8) Hebben EPA Patienten de juiste vaardigheden en competenties om zelfregisseur te zijn. Nee, vaak zijn de ernstige psychiatrische Patienten de moeilijkste Patienten die bemoeizorg nodig hebben. Als je die Patienten de regie geeft dan lukt het niet. En Patienten die zelfredzaam zijn maar toch een ernstige aandoening hebben zoals schizofrenie en terugvallen hebben? Ja hun hebben wel vaardigheden, want ze staan open voor de behandeling. Bij Patienten die al weten wat ze willen is het belangrijk om de gedachte te

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ordenen. Bij Patienten die gehospitaliseerd zijn is het heel moeilijk om tot iets te komen. Hier is een lange weg voor nodig. Hoe doe je dat dan? Ik zeg niet dat het onmogelijk is. Om ze ergens toe te motiveren is een lange weg nodig . Bij hen moet je bij stap 0 beginne: wat wil je wat vind je leuk om te doen. Je past de vooronderzoeksfase toe en inventariseert wat de interesses van de Patient zijn, waar je ingang kan vinden bij de Patient om met hem/haar te communiceren over zijn bezigheden. Assertiviteit: Dat stimuleer je bijvoorbeeld door de Patient zelf te laten bellen en contact op te zoeken met de instanties. Ook wanneer de Patient overlast heeft met buren kan je bijvoorbeeld aangeven wat de mogelijkheden zijn en informatie aanbieden. Visie en belangstelling voor de toekomst: Door zingeving vragen. Ook kan je bijvoorbeeld waneer de Patient vragen heeft over zijn doel in het leven doorsturen naar zingeving groepen. Wat doe je nog meer, om de Patient meer oog te laten krijgen voor zijn visie en belangstelling voor de toekomst. Niet ieders doel is het zelfde iemand kan als doel hebben een nieuwe plek in een andere stad en de ander wil een nieuwe baan en de ander wil niet meer geconfronteerd worden met de hulpverlening, door te leven in een gezonde omgeving met gezonde mensen om zich heen. Het is voor iedereen heel verschillend. Ik sluit aan bij de wens van de Patient op zijn visie, zijn wens, op zijn eigen ontwikkeling en gezondheid. Kijken de hulpverleners ook verder om meer uit de Patient te halen? Dat is de bedoeling. Op het moment dat de hulpverleners niet meer nodig zijn verwijzen we ze door naar de huisartsondersteuning. Enthousiasme en spontaniteit: ik weet niet of ik dat direct stimuleer. Nja goed bijvoorbeeld een Patient die van paarden houdt. Dan biedt je de Patient paardrijlessen aan. Dus je bied ze dingen aan die ze leuk vinden. Ja de Patient nam paardrijlessen en nu maakt ze daarnaast ook nog de stallen schoon. Mondigheid: Dat vind ik moeilijk, want de ander kan goed Nederlands, maar andere hebben weer moeite met Nederlands. Ik doe er eigenlijk weinig mee. Mondigheid betreft eigen wil etc. sluit goed aan bij de vaardigheid assertiviteit. 9) Hoe draagt u bij om de vaardigheden en competenties te vergroten. Door bijvoorbeeld Patienten bezig te laten zijn met herstelgericht werken bijvoorbeeld deelnemen aan IMR trainingen en praten met lotgenoten over verschillende leefgebieden. Hiermee vergroot je de competenties. Hoe vergroot je de competenties in 1-op-1 gesprekken. In 1-op-1 gesprekken probeer je te benadrukken wat ze goed kunnen. Je ziet wat de Patient kan en vergroot dit. 10) Hoe schept u meer zelfvertrouwen bij Patienten De onzekerheid komt voort omdat ze iets heel lang niet meer hebben gedaan en dat kan ik mezelf wel goed voorstellen. Ik leg ook dan niet uit dat ze juist niet onzeker moeten zijn dat neem ik ze ook niet weg. Hoezo neemt u dat niet gelijk weg? Omdat het niet gelijk kan. Als ze meer zelfvertrouwen krijgen dan gaat de weg naar zelfregie wel makkelijker hoe vergroot je dat dan ? Ze zijn bang dat ze fouten maken. Je moet de Patienten informeren dat het niet erg is om onzeker te zijn en ze ook fouten mogen maken. 11) Kent u de dromen van de Patienten en draagt u bij het verwezenlijken van de dromen en wensen van Patienten. Sommige wel maar niet iedereen. Er zijn Patienten die wensen hebben zoals paardrijden en kunstacademie opleidingen volgen. Daarnaast zijn er ook Patienten die weinig dromen

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hebben of waarbij het niet goed is uitgevraagd. Hoe komt het dat het niet wordt uitgevraagd. Sommige zijn gehospitaliseerd, waardoor ze vlak in contact zijn en defect. De Patienten begrijpen de vraag dan moeilijk. Hoe krijg je die droom dan toch los bij die Patienten. Dat is heel moeilijk meeste [Patienten hebben wensen en wie ben ik om te zeggen wat realistisch is. De meeste Patienten hebben simpele dromen, zolas het hebben van een vrouw, huisje en kinderen nu ben ik geen matchmaker en ik kan geen vrouw of man vinden maar ik ben wel iemand die zegt,, Doe dat vind je geluk!’’ Er zijn dromen waar ik bij kan bijdragen die haalbaar zijn, maar dingen zoals trouwen kan ik niet veel in doen. Maar ik kan blijven benadrukken dat het goed is en gezond en normaal en de Patient er voor moet zijn.

Interview familie Inleiding: Dank u wel voor samenwerking met mijn bachelorproef. Dit onderzoek gaat over de zelfredzaamheid en zelfregie van Patienten met een ernstige psychiatrische aandoeningen. Patienten kunnen mee doen in de maatschappij door middel van dagbesteding en enigszins stabiel zijn. Door de bezuinigingen en een nieuw manier van denken bij professionals wilt men dat Patienten nu ook steeds meer te zeggen krijgen in de behandeling. De Patient moet zelf haar/zijn leven invullen en de middelen voor opzoeken en voor ondersteuning zijn er de hulpverleners. Dat vraagt meer samenwerking van de Patient en de sociaal netwerk. Met deze vragen wil ik inzicht krijgen over hoe zelfregie gestimuleerd wordt in het sociaal netwerk. Hoe u handelt is niet perse slecht. Ik stel vragen voor dit onderzoek om jullie te helpen, omdat er juist zoveel bezuinigd word en er veel meer wordt gevraagd naar hulp van het sociaal netwerk dan voorheen… etc. Uw namen zullen in het bachelorproef gefungeerd worden en u kunt mij aangeven of u het stuk wil lezen wanneer ik mijn bachelorproef helemaal af hebt! Dan stuur ik het via de mail! 25-3-2014 Familie G ouders van meneer G.40 jaar. Zoon verblijft in een beschermend wonen faciliteit van de centrum van dienstverlening te Rotterdam. Patient is vanaf zijn achttiende gediagnosticeerd met schizofrenie paranoïde type. 1) Is de persoon die in zorg is stabiel. Wat was u rol in zijn stabiele tijden? Vader: Hij is vrij stabiel, maar hij heeft gekke denkbeelden, zoals dat mensen via de computer hem iets vervelends willen aandoen. Daarnaast heeft hij de overtuiging dat alles wat hij op tv ziet over hem gaat. Als er een tram te laat is dan gebeurd dat omdat ‘’ze’’ hem willen pesten. Moeder: Het enigste wat onze zoon doen is uit zijn bed komen en ontbijt maken. Hij woont beschermd. Hij is pas geleden verhuist en daar hoeft hij nog geen corvee te doen. Hij woonde eerst 7 jaar in een andere begeleid wonen. Hij was er erg tevreden , maar hij was uitgekeken op de mensen. Hij woont nu 5 weken in het nieuwe BW. Ze zijn aan het kijken wat het beste voor hem is, omdat ze van de hoogte zijn van de problematiek in het vorige huis. omdat ze weten over de andere problematiek in het vorige huis. Ze kijken naar wat hij wel kan, maar daar weten we niet zoveel van. Hij houdt er ook helemaal niet van dat wij met zijn zaken bemoeien. Hij heeft daar veel moeite mee. Hij vind zelf dat hij erg autonoom is. Wij hebben ook helemaal geen zeggenschap over hem. Hij staat onder bewind dat doet een tante van hem. We hebben hem nooit geld gegeven dus hij komt niet naar ons toe om geld te vragen. Hij krijgt geen geld van ons alleen tabak en een tramabonnement. Hij komt regelmatig om die tabak te halen. De rol die wij hebben is dat wij zijn ouders zijn. We zijn een factor in zijn leven. We stoten hem niet af. We hebben 1 a 2 x per week contact. Als er geen contact is

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komt het door zijn rare gedachten. Hij heeft een triade kaart waar aangeven wordt, dat wij niet benaderd moeten worden als hij psychotisch is. In zijn psychose ben ik de veroorzaker van alle problemen. Vader: Hij hoort ook stemmen en dat zijn de stemmen van zijn moeder die hij hoort. Krijgt hij medicatie. Ja hij krijgt Haldol depot als antipsychoticum en tabletten voor zijn stemming. Moeder: Ik denk dat je hem moet drogeren dan pas gaan zijn stemmen en paranoïde gedachten weg. We worden niet betrokken bij de medicatie. Hij heeft het heel lang goed gedaan. Hij is veel slechter geworden. Hij heeft voorheen redelijk gefunctioneerd. In welke periode was dat? Vader: tussen zijn 18e en 22e jaar. Hij heeft en opleiding aan de kunstacademie gevolgd, opleiding voor onderwijs, in het volwassen onderwijs twee vakken gevolgd en een MBO opleiding, maar het lukte hem niet om deze opleidingen af te ronden. Moeder: na een week gaat het niet meer, hierdoor heeft hij geen diploma. Maar in die periode was hij zelfstandiger vanaf zijn 22e is dat geleidelijk gestagneerd. In die stabiele tijden gaven jullie hem toen ondersteuning. Vader: hij geeft wel aan wat hem dwars zit. We bieden vooral emotionele steun. 2) Hoe goed is het contact met u en de persoon in zorg Er is 1 a 2x per week contact met de Patient 3) Welke beeld heeft u van een psychiatrisch Patient? Vader:Nee we hebben geen beeld. Wat onze zoon betreft is het volkomen uitzichtloos dat hij ooit weer kan werken. Er zijn Patienten die met enige begeleiding dat wel kunnen, maar mijn zoon niet. Moeder: ik vind dat je daar geen eenzijdig antwoord op kan geven. De psychiatrische Patient is net zo divers als een normaal mens. Het is heel lang gestigmatiseerd Mijn vader die was manisch depressief. In de familie werd er nooit vervelend over gedaan. Als je er zelf relaxt over doet ,dan doen mensen dat ook eerder. Dus omdat u zelf ervaringen heb gehad met psychiatrie heeft u niet echt een stigmatiserende beeld over psychiatrische Patienten. Nee dat klopt. Vader: In mijn familie was zoiets nog nooit voorgekomen. Maar in het gezin wordt het wel aanvaard dat mijn zoon een psychiatrische Patient is. Er wordt geen stempel gedrukt. Moeder: Nee, het is hoe het is. Wij schamen er niet voor. Je moet het maar accepteren, want je kan het niet veranderen. Als we het konden veranderen zouden we alles er voor doen om het te veranderen, maar dat kan niet. 4) Kent u de dromen en wensen van de Patient Moeder: Ja ik denk het eigenlijk wel. Hij realiseert zich heel goed dat hij niks kan bereiken en dat vind hij wel erg. Vader: Hij zegt af een toe dat hij schaakles wil geven op een basisschool. Moeder: Vroeger gaf hij schaakles op een vereniging. Hij kan heel goed schaken. Zijn droom was ook het hebben van een ‘’huisje boompje beestje’’. Hij realiseert zich dat hij zeker geen kinderen moet krijgen. Soms zegt hij dat hij wel had gedacht dat hij nu vrouw en kinderen zou hebben of een groot kunstenaar zou zijn. Hij denkt in zijn gedachten dat hij veel dingen heeft gedaan en bereikt, terwijl dat niet echt zo is. Hij heeft nu geen ambities meer. Ik ben van mening dat het willen schaken een dingetje is om te zeggen. Vader: Hij wil gewoon geld verdienen en hij wil meer geld hebben. Moeder: hij heeft altijd te weinig geld, omdat hij meer wil drinken en blowen. Hij maakt zich vooral zorgen over hoe hij dat gaat betalen in de toekomst, omdat hij zich realiseert dat alles

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duurder wordt. Hij hoeft ook niet oud te worden zegt hij. Drinken en roken is niet goed maar dat wilt hij niet beseffen. Hij is niet dom, maar hij wil het gewoon niet horen. Hij denkt echt dat het goed is om alleen bier te drinken. Hij heeft veel irreële bedenkingen. Heeft hij ook reële bedenkingen over zijn leven? Ik denk niet dat hij denkt over waar hij in 5 jaar zal zijn. Schaakles heeft hij dat vaker benoemt? Hij schaakt gewoon heel graag en vaak. Het is absoluut niet zo dat hij gaat bedenken hoe kan ik dat aanpakken. Vader: weet je hoe hij eruit ziet. Hij heeft lang haar tot zijn rug . hij heeft een enorme buik en dik. Hij ziet er echt haveloos uit. Hij hoeft echt niet te solliciteren voor een school om schaakles te geven. Ik weet ook niet hoe hij daar tegen aan kijkt. Hij zegt ook dat mensen achter zijn rug hem Jezus noemen en over hem fluisteren. Voor een deel kan dat psychotisch zijn maar zou ook echt kunnen, omdat hij er echt zo uitziet. Moeder :Hij ziet er echt onverzorgd uit Vader: je ziet op een kilometer afstand dat hij een psychiatrisch patiënt is. Moeder: Hij heeft geen bepaalde bewegingen door medicatie dat weer niet. Hij is echt een psychiatrische patiënt. Hij denkt dat er kracht in zijn haar zit dus zijn haar mag er echt niet af. Hij kent een sociaal psychiatrische verpleegkundige(spv’er)van Bavo Europoort via het schaken. Hij zat toen der tijd in een schaakvereniging die competities hielden, en daar heeft hij de spv’r ontmoet. Ook die spv’er heeft hem echt zien afglijden. U zei net dat als hij een schaakles zou willen geven doen hij dit nooit zelf zou kunnen aanpakken . Wat zijn de redenen dat u denkt dat hij dat niet zou kunnen? Vader: wij hebben allebei in het onderwijs gewerkt en we weten dat het niet zo makkelijk is om kennis aan anderen over te dragen. Je moet niet alles tegelijk doen en je neemt dan kleine stapjes. Moeder: dat zou ik niet eens als argument gebruiken. Want vroeger zou hij het wel kunnen doen, maar hoe hij er nu uitziet, het organiseren en hoe hij zich gedraagt en zijn taalgebruik is anders dan vroeger. Hij is gewoon erg afgegleden, een afgegleden randfiguur. 5) Bent u van mening dat de patiënt vaardigheden en competenties bezit om de schaakles aan te pakken. Vader: Hij kon vroeger altijd op tijd komen. Nu kan hij dat niet meer. Moeder: Plannen en organiseren zitten nauwelijks in zijn systeem Op korte termijn kan hij wel organiseren bijvoorbeeld als zijn tabak op is, dan weet hij heel goed dat hij nieuwe tabak moet kopen en ons moet bellen. Dat is ook erg lastig om te realiseren dat hij andere dingen niet kan terwijl hij wel zijn tabak kan halen, waarom kan je die andere dingen dan niet. Dan vraag jezelf is het niet kunnen of niet willen Ik heb mezelf nu wel gerealiseerd dat het meer niet kunnen is. Hoe heeft u dat gerealiseerd? Door de familieavond snap ik rationeel dat het niet kunnen is, maar emotioneel heb ik soms nog steeds ‘’hoezo kan je dat niet’’ maar dat is ook wel het lastige van die ziekte. Als je een gesprek met hem voert kan het een normaal gesprek zijn, maar toch kom je op een moment waar het niet meer gaat. Hij neemt ook geen enkele raad aan. Hij is 40 en ik ben wel zijn moeder, maar hij vindt dat ik niks met hem te maken moet hebben. Ook al heb ik de neiging dat ik hem wil opvoeden, omdat ik zijn moeder ben. Maar dat vind hij helemaal niks. Maar als je met hem praat denk je je kan redelijk met hem praten, maar iets concreets kan hij niet. Bij hem komt het niet aan. Het komt door zijn psychiatrische ziekte, desondanks hij best slim is. Hij vind zichzelf dus wel een autonoom persoon en wilt zo min mogelijk zeggenschap van jullie? Moeder: Ja dat is hij wat hij zegt. Als je kijkt naar zijn omstandigheden is dat helemaal niet zo. Hij vind dat in een BW niemand

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iets te zeggen heeft, terwijl hij wel aan de regels moet houden. Hij kan er niet tegen dat mensen via hun machtspositie dingen op hem proberen op te leggen. Vader: ‘’De regels zijn er voor mensen en de mensen zijn er niet voor de regels. Regels zouden mensen moeten dienen, de mens moeten de regels niet dienen’’ hahaha een quote van mijn zoon! Moeder: Hij kan hele goede argumenten geven Vader: Hij wou niet meedoen met MONEY4MEDICATION , omdat hij er principieel niet mee eens was met het doel van het onderzoek. In zijn omstandigheden doet hij alsof hij autonoom is, is dat alleen op gebeid van huisvestiging of is het ook op de keuzes en beslissingen of zijn leven, is hij daar ook zo autonoom dat hij zonder jullie of ander mans zeggenschap keuzes kan maken? Moeder: Nee juist niet toch ? Vader: nee Moeder: Denkt het niet, als het puntje bij paaltje . Keuzes maken is er ook niet aan de orde hij woont in een beschermend wonen faciliteit, er is eten en drinken en tabak krijgt hij van ons. Maakt hij weinig keuzes en beslissingen? Vader: Ja, het komt weinig voor. Op welke momenten maakt hij wel keuzes? Vader: hij heeft bijvoorbeeld een cadeau gekocht voor mij en dat heeft hij zelf gekozen etc. Hij vindt zichzelf autonoom, maar omdat hij weinig keuzes maakt is hij eigenlijk dat niet? Vader/moeder: nee. Dat komt door zijn ziekte. In mijn visie probeert hij niet het beste van zijn leven te maken. Wanneer maakt hij pas echt het beste van zijn leven. Moeder: Ik heb een hekel aan verslaving. Ik vind dat verschrikkelijk terwijl dat het meest belangrijkste is in zijn leven. Vader: Ik denk dat hij nooit zal stoppen met drinken. Moeder: Want ik denk dat als hij schaakles zou willen geven, dat hij dat pas kan als hij stopt met drinken. Schaakles geven samen met zijn verslaving is niet mogelijk. Vader: hij had bij het centrum voor dienstverlening een begeleider die samen met hem doelen opstelde voor te toekomst. In dat gesprek zei hij dat hij schaakles wil geven, meer kon hij niet verzinnen voor in de toekomst. Hij heeft een keer gewerkt, dat was voor therapeutische doeleinden. Toen moest hij iets uitgraven of een pad onderhouden. Hij vond het zinloos om het te doen. Hoe voelen jullie als je ziet dat hij terreinen als verslaving, dagbesteding, corvee niet de juiste beslissingen kan maken. Moeder: Ja het is wat het is. Ik voel er niet echt iets bij. We hebben ons gewapend voor alles. Wat er ook gebeurt ik zou er niet gek zou van kijken. Hoe vindt u dat u zo denkt? Ja het is zelfbescherming. Het houdt me staande en zo kunnen we functioneren. Je moet ook gewoon verder. Het zou nog veel erger kunnen zijn. Mijn zoon is eerlijk, hij steelt niet en heeft geen schulden. Het accepteren van de situatie helpt jullie in de relatie en in de ondersteuning van de patiënt. Moeder: Ja het heeft ons nooit uit elkaar gedreven. Het staat niet tussen ons in. 6) Heeft u een bijdrage geleverd aan het vinden van een baan of dagbesteding Nee. Het zal nooit gebeuren hij wil ook niet dat wij er mee bemoeien. Als je zou zeggen je kan dit en dat doen, dan werkt dat averechts. Vader: wat ik net zei over de pad dat noemen ze vrijwilligerswerk. Dat heeft hij wel zelf gezocht. Maar hij moet het wel echt nuttig en leuk werk zijn. Dus daar heeft hij wel zelf de initiatief in genomen om vrijwilligerswerk te vinden. Vader: Ja! Moeder: Maar dat kwam ook wel uit het CVD,omdat hij er dan geld voor kreeg. Vader: toen zat hij nog niet op het CVD

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Moeder: het kwam indergeval uit de hulpverleners. Dus hij heeft het niet zelf uitgezocht, nee zeker niet. Vader: hij is wel zelf naar de vrijwilligersbureau gegaan om dat te regelen Moeder: hij is een keer geweest. Maar ik vind als je dat in statistieken zou verwerken is het weinig , want hij zou het net zo goed ook niet doen. 7) Heeft u op verzoek van de patiënt hem geholpen of nam u zelf de initiatief om te helpen en steun te bieden> welke terreinen(turflijst) Vader: Hij komt wel naar mij toe voor problemen op materieel gebied of als hij tegen ‘’dingens des levens’’ vragen aanloopt Op het gebied van zelfzorg kopen we schoenen voor hem. Familie/relaties: Moeder: We hebben wel eens familiedag en daar gaat hij bijvoorbeeld niet naar toe. Dat wil hij absoluut niet! Vader: hij vind het wel leuk als een familielid naar ons toekomt. Wij hadden gasten een dagje toen kwam hij zelfs met 5 bewoners. Was dat op eigen initiatief van hem? Vader : ja ja Moeder: Niet waar, Aad wou zijn kamer zien vandaar, maar dat zou hij nu ook niet meer doen dat was toen in het begin. Vader: Maar hij had toen wel het lef om met een hele stoet mensen naar ons toe te komen. En voor de schaakles bieden jullie daar ondersteuning in? Vader: Er is er ook geen vraag naar en als er vraag voor is dan kiest hij wel iemand anders. Moeder: Als er mensen in CVD zijn die het willen leren zal hij ze echt wel wat leren, maar daar heeft hij ons niet voor nodig. 8) Op welke manieren/momenten bied u steun en voldoet u aan de wensen en beslissingen van de patiënt (hoe vaak de netwerk wenst (turven) Moeder: Voor gezelligheid komt hij en dan krijgt hij de tabak. Vader: Daarnaast hij schaakt altijd met mij en zijn broer. Moeder: Zijn broer verleent hem veel steun. Elke week gaat hij naar zijn broer. Voor zijn gevoel is dat wel zijn gelijke. Hij ziet hem echt als steun. Bij wie zou hij sneller vragen of hulp voorleggen bij zijn broer of jullie.. Vader: We hebben het ook over de toekomst en als we er niet meer zijn. Dan wilt zijn broer graag voor hem zorgen. Dus zijn broer heeft een belangrijke rol als het gaat om het leven inrichten van u zoon: Vader en moeder; Ja ja

Interview vragen familie: Op 1 april 2014 heb ik een gesprek gehad met Tonie. Tonie is decaan op een middelbare school in Rotterdam. Ze is de moeder van een zoon die in zorg is bij Bavo Europoort. Ze heeft drie kinderen. Haar zoon is 31 jaar en gediagnosticeerd met ADHD en verslavingsproblematiek(alcohol&drugs) 1) Hoe goed is het contact met u en de persoon in zorg Goed hoor. Hij gebruikt geen medicatie. Hij heeft zelfmedicatie in de vorm van wiet. Is hij wel eens opgenomen geweest. We hebben hem 1x verplicht laten opgenomen voor de psychiatrie. 2) Kent u de dromen en wensen van u zoon? Ik ken ze wel, maar ze zijn niet reëel. Wat zijn ze dromen? Hij wil een rijke beroemde rapper worden *lacht*. Dat is zijn droom als hij daar van kon bestaan. U zegt net dat het niet reëel is? Omdat hij wel bepaalde talenten heeft. Hij is heel taalvaardig, maar hij blijft hangen in wat de

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beats betreft en het is vooral eenzijdig, zijn teksten zijn eenzijdig. Hij heeft autistische trekken en het gaat alleen maar om hem en dat verveeld snel. Naast taalvaardigheid heeft hij meer talenten? Nou hij kan praten als brugman. Hij zou een fantastische verkoper kunnen zijn. Hij lult iedereen plat. 3) Op welke manieren/momenten bied u steun en voldoet u aan de wensen van de patiënt (hoe vaak de netwerk wenst (turven) Ik beheer zijn financiën. Hij kan absoluut niet met geld omgaan. Ik help hem op administratief gebied. Met boodschappen, dat doen we samen. Ik geef hem ook huishoudgeld en ik breng ook wel wat proviand mee. In zijn dagbesteding wilt hij niet dat ik ermee bemoei. Hij heeft geen werk of dagbesteding, omdat zijn dag en nachtritme omgedraaid is. Hij heeft verkeerde vrienden. Heeft u zeggenschap over zijn sociale contacten? Nee ik heb daar geen invloed meer op helaas! Het zijn bajesklanten bij voorkeur ‘s nachts en er wordt drugs gebruikt, gedronken en woordenwisselingen vinden plaats. Heeft u geprobeerd om er iets van te zeggen: ja zeker dat weet hij zelf ook wel. Mijn zoon is eenzaam, hij heeft liever slecht gezelschap dan geen gezelschap. Hij kan zichzelf heel slecht vermaken. Wat een vervelende situatie zeg? Ja zeker, het is een uitzichtloze situatie. Welke opleidingen heeft hij gedaan ? Hij heeft twee en half jaar gymnasium gedaan, daarna havo 3 naar havo 4 blijven zitten toen mbo 4. Daarna heeft hij een mbo 2 facilitaire dienstverlening diploma gekregen, maar heeft hier nooit iets mee gedaan. Hij heeft verschillende banen gehad. Allemaal rare baantjes zoals in de horeca, tank station, supermarkt, bij de Roteb, bij schoonmaakbedrijven. Maar nu twee jaar geen werk. Hij heeft even een WW uitkering gehad. Heeft hij zelf initiatief getoond gezocht om dagbesteding te zoeken. Ja , dat was via de Bavo geregeld. Hij ging naar VIAkunst die schilderfaciliteiten heeft en ze hebben ook een studio daar. Zo is hij ook begonnen met rappen. Hij heeft ook wel eens een clip gemaakt. Hij had het meteen door hoe hij de beeld en geluid precies moest maken. Heeft u het idee dat hij nog meer uit de rap carrière wil halen. Hij heeft zelf een keer geïnformeerd voor een opleiding als producer via VIAKUNST. Daarna was hij ook zelf naar een opendag/voorlichting gegaan. Toen zei de school dat hij veel verder is dan de opleiding en dat vond hij zelf ook. Maar verder doet hij er niks mee. Hij kan het niet organiseren en weet ook niet hoe hij het moet organiseren. Dus hij heeft wel ideeën, maar hij weet dan niet hoe hij het moet aanpakken. Nee precies hij kan niet plannen en niet organiseren . Heeft hij u daarvoor benaderd om samen met hem dingen te organiseren of aan te pakken? Nee het is altijd andersom. De omgeving benaderd hem en geeft hem oplossingen geeft hij dan ook wat terug of doet hij iets mee met de aangeboden hulp? Nee, meestal niet omdat zijn dag en nachtritme andersom is. Dus wanneer hij bijvoorbeeld iets moet regelen, mensen moet bellen dan zijn de kantoortijden al voorbij. Het is een flinke obstakel, maar hij luistert ook slecht naar anderen. Hij doet ook zo stom. Ik zei tegen me man we hebben meer aan een welwillende mongool dan onze zoon. Ik was zaterdag bij hem en hij heeft een agenda. Die hij al een tijdje kwijt was. Ik ben dan ook de persoon die dan een agenda regelt voor hem, want zelf bedenkt hij dan niet dat een agenda handig is. Hij loopt bij de reclassering en het is wel handig om te weten wanneer hij daar naar toe moet gaan. Hij moest naar de reclassering en hij had een brief gekregen. Die brief gaat hij zelf ook niet bekijken hij zegt gelijk tegen mij: ‘’ Kijk mam hier de post’’. Toen ging hij even boodschappen doen maar ik voelde me niet prettig, want hij was ontzettend onder invloed. Dus liet ik hem zelf boodschappen doen . Mijn man had de post meegenomen. Toen had ik toch die post bekeken en het waren allemaal brieven over afspraken. Het kwartje valt dan niet bij hem, dat hij die afspraken in zijn agenda moet schrijven. Hij is niet zelfredzaam op dat gebied? Absoluut niet en toen was ik zaterdag bij

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hem en de brief was in de agenda, ik zei laat me even in je agenda kijken. In de brief staat wat je mee moet nemen. Hij zoeken naar de brief en toen zag hij een brief van 19 maart, maar hij realiseert niet dat hij zo bedonderd is om te kijken wat voor brief het is. Hoe komt het dat hij dat niet kan overzien? Hij heeft weinig ervaring met dat soort dingen, maar hij heeft ook een enorme gemakzucht. Is het alleen op administratief gebied? Op veel gebieden ook op het gebied van huishouden, het is een zwijnstal. Bied u ook steun in zijn rap carrière? Ik heb hem weleens attent gemaakt over een talentenjacht en hem opgegeven. Zulk soort dingen en meegeholpen met het zoeken van een muziek opleiding. 4) Bent u van mening dat de patiënt vaardigheden en competenties bezit om zelf keuzes en beslissingen te maken Hij is spontaan en enthousiast en hij heeft interesse voor zichzelf en voor anderen. Hij is niet assertief. Hij verdoofd alles met alcohol en drugs. Hij heeft geen lange termijndoelen. Ik vind hem niet mondig hij is een puber en niet volwassen. Daarnaast heeft hij zelfvertrouwen, maar zijn zelfvertrouwen is overdreven. Hij vind zichzelf stoer en een gangster rapper. U zei dat hij absoluut niet zelfredzaam is. Zijn er terreinen dat hij wel zelfredzaam is. Hij kan voor zijn eten zorgen en zijn eigen was doen. Bent u van mening dat de patiënt vaardigheden en competenties bezit om zelf keuzes en beslissingen te maken. Iedereen maakt hele dag keuzes. Ik vind dat hij slechte keuzes maak maarja wie ben ik. Hoe voelt u wanneer hij een verkeerde beslissing maakt? Hij is laatst veroordeeld voor winkeldiefstal. Dat is ook een beslissing, maar ik vind het niet goed want nu krijgt hij een taakstraf. Het is wel een beslissing van hem om iets te stelen. Ik voel me waardeloos het is trekken aan een dode paard. Ik ben al sinds zijn 16e aan het trekken aan een dood paard om hem op het rechte pad te houden. Hij was 22 jaar toen we hem uit huis hebben gezet, omdat hij aan de harddrugs gebruikte. Hij had een psychose door de drugs en daarom werd hij opgenomen. Toen waren we een jaar verder. Hij kon niks zelf dus mama altijd mee. Jaar verder was hij nog steeds aan de harddrugs. Op dit moment gebruikt hij nog steeds coke. Hij kent geen grenzen. Hij heeft vervelende dingen thuis gedaan. Hij heeft dingen kapot geslagen en noem maar op. De laatste keer dat hij bij ons thuis was, was hij jarig. Hij mocht een tijdje niet thuis komen, omdat hij ons had bedreigd. We gaan wel naar hem want we laten hem natuurlijk niet vallen, maar dan kunnen we tenminste gewoon weg gaan wanneer het te ver gaat met zijn gedrag. Hij heeft vaak uitbarstingen door de drugs. Hij is kwetsend verbaal en agressief. Hij is een rot mens ja. Wordt hij voor zijn gedrag behandeld? Nee, hij wil geen medicatie. Hij is zorgmijdend en heeft geen zin in therapie, omdat hij geen ziekte-inzicht heeft. Ik probeer hem soms attent te maken op zijn handicap, maar het komt er bij hem niet in. Het ligt allemaal aan andere mensen en niet aan zichzelf. U gaf aan dat hij gemakzuchtig is hoe komt het dat hij gemakzuchtig is. Misschien heb ik hem wel teveel gepamperd, want ik ben altijd heel behulpzaam naar iedereen toe. Het is mijn zwakke punt. Ik neem snel de regie over te snel misschien, zodat ik hem kan sturen. Maar zijn rap carrière dat is nog wel echt een dagbesteding, waarmee hij kan opknappen? Ja maar dat doet hij niet elke dag. Door VIAkunst is hij ook niet opgeknapt wel wat betreft dat rappen. Hij heeft rare kansarme mensen ontmoet. In de ochtend drinken ze stiekem alcohol en daar is zijn drankprobleem begonnen. Daarvoor blowde hij alleen en snoof hij coke, maar nu doet hij aan criminele dingen om aan geld te komen. En dan doet hij zielig dat hij niet op vakantie kan gaan, terwijl al zijn geld naar boetes gaan. Dus zijn mate van keuzes en beslissingen maken daar heeft hij geen inzicht in wat goed en slecht is? Nee zeker niet en het zijn elke keer boetes van drinken in het openbaar en toch doet hij het elke keer weer. Nu heeft hij ook de laatste 2x een advocaat gevraagd en daar kreeg hij ook weer een rekening

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van. Hij heeft schulden bij de deurwaarder dus we kunnen niet sparen. Het is echt verschrikkelijk. Ik ben van mening dat het zijn eigen schuld is. Hij kan zijn financiën niet overzien. Een keer gingen we boodschappen doen en ik was vergeten het pasje terug te vragen. Hij heeft gelijk de rekening leeggehaald alles op. Wanneer hij problemen heeft stapt hij op eigen initiatief op u af voor hulp. ja natuurlijk en dan belt hij. Ging u hem gelijk helpen? Nee niet meer. Er was een tijd dat ik gelijk geld gaf etc. Maar dat doe ik niet meer. Hoe is dat veranderd? Door de problemen. Het is een groeiproces we hebben nu zoiets van je zoekt het maar uit. Ik kan me voorstellen dat jullie belast waren. Ja dat is zeker zo . Was er ook een goeie periode? Want wanneer zijn de problemen begonnen? Sinds de middelbare school is het steeds slechter geworden. Hoe draagt u bij aan de keuzes en beslissingen van u zoon? Nee dat laat hij niet toe. Hij houd jullie af met wat hij doet in zijn leven? Ja zeker ik probeer het wel. Dus hij pakt zelf de ruimte om beslissingen te maken. Hij woont in een ander wijk en we zijn er niet altijd bij terwijl hij eigenlijk wel gewoon iemand met een gezond verstand moet hebben. Ja misschien begeleid wonen of beschermd wonen? Het is nooit ten sprake gekomen. Ik heb het besproken met de BAVO maar daar vinden ze hem niet te slecht voor. Ja ze willen natuurlijk dat hij zelfstandig blijft wonen. Ja hij heeft nu nog zijn huisje maar hij heeft problemen gehad met de woningcorporatie. Ik vind het ook ongemakkelijk wanneer ik daar ben. Dan zegt hij dat die vrienden goede vrienden zijn, terwijl hij er niks mee kan. Die vrienden van hem blijven bij hem wonen betalen geen huur en vreten zijn koelkast leeg. Hij laat zich echt gebruiken. Welk beeld heeft u van de psychiatrisch Patient. Ik moet dan aan mijn zoon denken. Ik heb mijn zoon als voorbeeld en ik vind het uitzichtloos. Of hij zou moeten werken hij is nu bezig met werk maar als het zo door blijft gaan dan is het uitzichtloos en hopeloos. Hij is nu bezig met werk wat voor werk? Ja pas sinds gister dus kan er niet veel over zeggen. Heeft hij dat zelf gekozen en gezocht? Nee, het is via UWV werk en inkomen en de matchmaker van sociale dienst gegaan. Ook was hij met de reclassering ene een agent, omdat hij brand had gesticht bij een container. Elke keer als je denkt we zijn er dan komt er weer wat nieuws. Daarom vinden we het ook zo uitzichtloos. U hoopt met het werk dat er stabiliteit komt? Ja want dan is hij avonds moe en dat is goed voor hem, want dan moet hij avond slapen en vroeg opstaan en kan hij niet meer ’s nachts leven ,omdat hij dan een vast structuur heeft. Toen hij bij de Roteb werkte had hij beter dag en nacht ritme? Ja dat zeker hij werkte de hele dag en moest op tijd naar bed en opstaan ging ook goed. In dat opzichte kan hij het wel. Ja, hij is heel erg sterk toen hij werkte bij de Roteb was hij zo gezond en zag hij er fris uit. Ik dacht bij mezelf ik wist niet dat ik zo trots kon zijn op me zoon die bij de Roteb werkte. Voor hem was het goed om bij de Roteb te werken. Waarom was hij gestopt? Hij werd ontslagen, omdat hij ruzie had gekregen en het zijn niet de genuanceerde mensen. Krijgt de Patient waardering en plezier met en van anderen? Nee het is vervelend als hij er is. Laatst was me dochter jarig toen gingen we voor het eerst uit eten zonder hem en het was een verademing. Altijd als hij er bij was waren we gespannen, we waren nooit ontspannen . Hij zegt rare dingen tegen anderen, hij heeft geen decorum of hij maakt kwetsende opmerkingen en seksuele getinte opmerkingen bij zijn zus of beledigd haar. Het is niet leuk om met hem te zijn en zijn broer en zijn zus hebben een hekel aan hem. Denkt u dat hij ooit zelfredzaam zal zijn en zijn eigen leven op een goede manier kan inrichten om te functioneren in de maatschappij. Ik weet het niet. Heeft u daar hoop in? Hoop het wel maar ik zie het niet gebeuren. Hoe zou het wel kunnen gebeuren? Misschien als de hulpverlening meer gestructureerd contact werk, medicatie of therapie biedt. Maar hij houdt het af hè de hulpverlening? Ja dus dat is wel het lastige en misschien is het wel handig als hij een diagnose voor dat autisme krijgt, want daar hij heeft geen

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diagnose voor alleen voor die ADHD. Ik heb me dat nooit gerealiseerd pas een jaar of 6 geleden dat het dat kan zijn en ik heb me erin verdiept ik ben er van overtuigd dat hij autistisch is. Heeft u de BAVO gesproken, ze kunnen altijd de diagnose veranderen? Jawel jawel, maar dan moet hij meewerken en dat wilt hij niet. Hij beseft niet dat er iets mis met hem is. Dat maakt het ook wel treurig. Het is schrijnend. Het is in feite een bijzonder en lief persoon, liever dan mijn andere twee kinderen. Veel zachtmoediger,gevoeliger en kwetsbaar. Hij was het oogappeltje van opa en oma ,omdat hij aanhankelijker was en liever. Dus de hulpverlener moet meer gestructureerd contact geven. Maar hij moet het wel willen het moet van twee kanten komen. Ik vraag me af wanneer het punt gaat zijn dat hij het zelf gaat beseffen dat alles fout gaat en hij verandering moet maken. Ja inderdaad ik weet niet misschien wanneer hij uit huis moet en op straat komt te staan. Het ligt altijd aan anderen. Een cliënt moet zelf inzicht hebben en het moet van beide kanten komen wat zou de sociaal netwerk kunnen bijdragen. Wij kunnen alles bieden maar hij moet het willen en zich gedragen. Ik zou mijn leven geven voor die jongen. Ondersteunend en materiële rol en emotionele rol kunnen wij zijn. Als hij zegt ik wil graag afkicken ik zou gelijk een retour in Crastle Crake in Schotland kopen met allemaal goede psychiaters. Er is een reden waardoor hij drugs gebruikt. Hij is en diep ongelukkig mens. Hij gebruikt de drugs om het naar zijn zin te krijgen. Dat maakt het zo treurig . Alles valt te regelen maar hij moet het wel zelf willen. Alles moet op zijn voorwaarden vindt hij en dat belemmerd het

Interview cliëntenraad 1-04-2014 De cliëntenraad basisbestuur komt elke begin van de mand bij elkaar. Er is een coach ondersteunende persoon en meneer E is de voorzitter. Tijdens de interview waren er 5 cliënten. De cliëntenraad bezit in totaal 8 cliënten. Meneer E. is 50 jaar en heeft de diagnose depressie. Hij is net terug van een opname en heeft geen vaste woonplaats. Mevrouw M. heeft ook een depressie en heeft sinds eind 2009 ambulante behandeling. Haar behandeling zal spoedig stoppen en zal zij geen hulpverlening meer hebben. Meneer R. is 57 jaar en heeft autisme. Hij krijgt ambulante behandeling en is in zorg bij Pameijer. Meneer G is 38 jaar en heeft een depressie. 1) Weet u wat u wilt in u leven, zo ja wat wilt u bereiken ? Rudolf: Ik ben een getalenteerd trompettist, althans dat zegt men. Ik mag het niet over mezelf zeggen. Ik vind mezelf goed. Als ik iets met me trompet kan bereiken zou ik dat doen. Ik hoef niet perse rijk te worden, maar ik vind het zo leuk. Ik speel in de kerken met een organist. Hier begeleid ik de liedjes in de hervormde kerk. In het verleden heb ik voor mijn eigen gemeente gespeeld, maar daar wordt ik niet meer voor gevraagd. Dus dan heb ik zoiets van ja dan niet. Dus u speelt alleen in kerken? En ik studeer thuis, maar dat mag ik nu wel vaker gaan doen. Ik heb een winter gehad waar ik weinig heb gestudeerd. Maar ik merk dat je in de winter een heleboel dingen niet doet, die je wel zou moeten doen. Bepaalde dingen laat je liggen in de winter. En dan is het al voorjaar en dan ‘’aaah de zon schijnt ow kijk me balkon bloemen balbala!!’’. In de winter ben je mat en maf en nu gaan we leuke dingen doen. Ik ga met mijn man naar Avi Fauna. Oke mooi dankjewel voor u antwoord en u Edward Edward: Nee, momenteel even niet. Meestal na een loop van tijd versloft het naar niks. Ik zie wel wat er op mijn pad komt. Wat waren je dromen en wensen voorheen? Ik was eerst kok

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geweest toen wou ik kokspecialist worden, maar dat was niet door gegaan. Ik had een ongeluk met mijn knie. Daarna ben ik activiteitenbegeleider geweest en wou ik graag hbo doen om sociaal psychiatrische verpleegkundige of sociaal psychiatrisch hulpverlener te doen, maar dat is ook weer niet gelukt. Mijn huwelijk is op de klippen gelopen dus dat was ook niks. Heleboel tegenslagen heeft u gehad. Ja behoorlijk. En nu droom ik momenteel niks meer. Ik zie het wel. Ik heb vier een half jaar als kok vrijwillig 20 uur per week gewerkt. Door de bezuinigingen moest ik minder werken. Op een gegeven moment vond ik het ook niet leuk meer, omdat ik er niks voor kreeg en er waren ook geen uitdagingen meer. Veel dingen waren wegbezuinigd die ik nodig had in de keuken. Dus ben ik ermee gestopt. Marianne: Ik wil gezond blijven en ik wil deel uitmaken van de maatschappij. Daarnaast wil ik ook werken. Waar zou u willen werken. Het liefst in de zorg,zodat ik met mijn ervaring anderen kan helpen. Daarom ga ik een cursus volgen van Parnassia voor ervaringsdeskundigen. Edward: Er schiet iets naar binnen. Ik zou wel heel graag wiskunde en natuurkunde willen doen. Ik vind het erg interessant. Heeft u wel eens ingekeken hoe je dat zou kunnen aanpakken? Ja ik heb gekeken bij thuisstudies om die vakken te volgen 2) Hebben deze vaardigheden competenties toepassing op u? zie turflijst Rudolf: ik ben heel erg geïnteresseerd in anderen maar in mezelf ? als je naar me verleden zou kijken zou ik niet echt geïnteresseerd zijn in mezelf. En nu op dit moment? In principe ben ik een geweldig mens. Edward: Ja eigenlik wel anders zou ik geen activiteitenbegeleider worden. Ik vond het een hele leuke opleiding Assertief, dingen accepteren Rudolf: Ik ben een ‘’bitch’’ geworden. Vroeger accepteerde ik van iedereen alles. Maar ik moet zeggen tegenwoordig accepteer ik niet veel. Maar als u nu kijkt in u leven zijn er dingen waarvan u denkt ik accepteer het hoe het is of denk je dat je er nog wat beters er van kan maken? Natuurlijk kan ik er wat beters van maken. De wereld staat open en oud ben ik niet. Het hangt er vanaf hoe je er zelf tegenover staat. Ik ben nooit positief geweest in me leven, maar nu heb ik zoiets van krijg allemaal de pest maar. Anderen hoeven niet meer te zeggen ‘’Nee, dat zou je niet moeten doen’’. Vroeger luisterde ik naar alles wat men zei , dan zei men ja je moet dat doen of doe dit een keer. Nu heb ik zoiets van wat jij niet wil doen moet je zelf weten maar ik ga het wel doen. Hoe is dat veranderd? Als je maar genoeg klappen op je kop krijgt dan gaat het vanzelf. Ik ben natuurlijk een eigenwijze gozer, maar dat is erfelijk dus ja. Als iemand over mijn vriend zegt :’’Ja je kan niet met hem omgaan want hij is schizofreen’’ dan zeg ik :’’Nee Hij is aardig, hij is eerlijk.’’ Met jullie heb ik geen ene moer te maken. Hij is mijn keuze en jullie moeten wennen dat hij mijn maatje is. Maar er was wel een tijd dus waar je wel naar mensen luisterde? Ja maar dat doe je heel je leven en dan stoot je je kop. Het heeft geen nut om naar anderen te luisteren. Je hebt zelf de inzicht in hoe je het wil hebben . Als je iemand anders je hele leven je leven laat regeren, word je er ook niet vrolijk van. Dus je moet je eigen plan trekken hoe moeilijk het ook is, maar je moet het wel doen. Hoe heb je dat gedaan je eigen plan trekken. Het is heel simpel als je het met andere mensen niet eens ben, kan je twee dingen doen. Je kan die mensen te vriend houden of je zegt oké nu is het genoeg als jij je kop er niet over houd, blok ik je gewoon. Ik ontvang dan geen e-mails meer, ik blokeer de telefoon nummer etc. Ik ben daarin heel radicaal geworden. Je gaat of in me gedachte mee of je houd je kop en ik verwijder je uit me leven. Is

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het vaak voorgekomen dat je mensen heb verwijderd uit je leven? Ik ben er heel hard mee bezig. Er zijn er al heel wat verdwenen. Leven is zo vandaag heb je vrienden, morgen ben je ze kwijt. Je krijgt nieuwe vrienden en ouderen verwateren. Het is heel normaal. Je kan je aan oude vriendschappen vasthouden, maar deze vriendschappen kunnen je in een bepaalde situatie dwingen waar je het niet mee eens ben. Als je dat je hele leven door wilt laten gaan moet je het zelf weten. Op een gegeven moment denk je het is mijn leven ik kan er nog wat mee doen en wat jij vind interesseert me geen hol. Het gaat immers om mijn leven. Gertjan: Nja dat radicale als hem heb ik niet. Ik ben heel sociaal aangelegen. Het is sowieso moeilijk dingen te accepteren. Als voorbeeld neem ik mijn broertje. Ik heb heel vaak geprobeerd om de relatie te herstellen. Op een of andere manier lukt het niet. Hij was wel laatst bij mij thuis, maar ik kan er geen druk op zetten. Ik heb het op gegeven moment ook losgelaten. Ik heb moeite gedaan en vind het wel prima zo. Het is wel moeilijk, maar toch moet je de situatie accepteren. Als ik dat niet doe ben ik er alleen maar mee bezig, omdat je jezelf vragen gaat stellen van’’ ja waarom niet en hoe kan het nou’’. Rudolf: Je weet dus niet waarom. Gertjan: Nee, ik heb het losgelaten als ik hem zie ben ik blij, als ik hem niet zie ja dan niet ja jammer. Dat geldt voor u broertje? Is dat ook bij andere dingen? In het begin was ik er heel mee bezig ook met andere dingen. Bij me broertje was ik er teveel mee bezig en dat heb ik wel met meerdere personen. Dus dan denk ik ook hoepel maar op. Ik bekijk het zelf ik ga gewoon me eigen weg. Luistert u ook naar mensen of trekt u uw eigen plan? Ik luister op zich wel naar mensen. Ik ben altijd wel geneigd om naar mensen te luisteren, zoals bij mijn moeder. Maar mijn moeder verdedigd me altijd daar luister ik naar, want zij heeft mij grootgebracht. Die wil dan een verdedigende rol bij mijn broertje spelen. Ik spreek met hem bijvoorbeeld een dag af en dan zou hij komen met mijn moeder en zijn gezin en dan hoor ik dat hij niet meer kan. Dan denk ik hallo ik heb een afspraak met hem gemaakt en dan hoor ik van mijn moeder dat hij naar vrienden is gegaan, terwijl ik zijn broer ben. Ik heb het wel makkelijker van me af kunnen schuiven niet 100% maar het gaat wel beter. Marianne: Ik luister wel naar andermans advies, maar ik kies wel mijn eigen weg, wat goed voor mij is. Ik weet uiteindelijk zelf wat het beste voor mij is. Als mensen er niet mee eens zijn ga ik ze niet verbannen iedereen heeft recht op zijn eigen mening, maar ik weet wat goed voor mij is. Edward: uhh ik luister wel naar de mening van anderen. Niet dat ik ze altijd opvolg maar iemand anders die kan een situatie net iets anders zien, omdat hij/zij verder van de situatie afstaat. En dan ligt het aan mij wat ik er mee doe. Maar ik heb ook zoiets van dingen zijn zoals ze zijn en daar doe je niks aan. Wie zijn mensen die verder afstaan? Hulpverleners of vrienden die zeggen’’ hey je doet het wel helemaal verkeerd’’ en dan denk ik erover na en dan beslis ik of ik er mee eens ben of niet. Visie en belangstelling: Marianne: ik vind een toekomstbeeld wel belangrijk. Je moet wel een doel hebben. Gewoon accepteren hoe het leven is vind ik voor me zelf niet goed genoeg. Edward: ik kom net uit een opname dus dan zie je de toekomst niet zo helder. Ik moet eerst weer op de rails komen. Ik moet een huisje eerst vinden meubels. Dus ja daar hou ik me meer bezig. Of het nou mijn visie is? Nou het is een soort korte termijndoel want u wil eerst dat bereiken voorat u verder gaat? Het is een noodzakelijke doel, niet een doel die ik zelf heb gesteld. Het is me opgelegd. Wat vind u ervan dat het u is opgelegd? Nou ik kan wel

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gaan vloeken over mijn vrouw, maar dat schiet niets op. Ze heeft de stekker uitgetrokken en daarmee is ze weggelopen. daar ben ik wel boos en verdrietig over, maar de situatie is niet veranderd. De stekker blijft eruit. Ik zal toch opnieuw moeten beginnen. Ja wat moeilijk zeg! Ja het kan ook niet anders ik moet het maar accepteren Gertjan: ik ben met bepaalde dingen niet echt met de toekomst bezig. Sommige dingen in het leven lopen gewoon hoe ze moeten lopen. Ik probeer wel voor mezelf doelen te stellen. Naar een vakantie toe werken is wel een doel voor mij . Het werken aan doel kost voor mij veel moeite en energie. Ik heb niet echt complete doelen, lange termijndoelen. Hoe komt het dat u dat niet heeft? Ik ben natuurlijk wel bezig om beter te worden, maar ik weet niet hoelang ik daar mee bezig ben. Het leven loopt zoals het loopt. Het is niet dat ik zo me toekomst zie van dit ga ik doen zo gaat het eruit zien . Nee nee, als je dat kan dan is dat heel goed. Wordt u in de omgeving gestimuleerd om iets te bereiken? Om dingen te doen bijvoorbeeld een vakantie of een weekendje weg is al voor mij een overwinning. Toen ik werkte was het anders nu ik al heel lang niet meer werk heb ik zoiets van ik zie wel hoe het gaat. Ik ben getrouwd. Mijn vrouw is een gehandicapt ik moet voor haar zorgen en dat blijft gewoon doorgaan. Dat zie ik ook als lange termijndoel dat we gelukkig zijn met elkaar Rudolf: Die is wel aardig terug dus ik heb er wel vertrouwen in. Het was er niet omdat het twijfelachtig was. Hoe is het zeker geworden? Zekerheid heb je niet. Als je geen initiatief toont gebeurt er ook niks in je leven. Je moet achter je idee staan en je moet het ontwikkelen en je best blijven doen ongeacht wat anderen denken. Ik woonde tot me 47e thuis . Toen ik zelfstandig werd kon ik niet voor mezelf zorgen dat kwam door me autisme. Heel veel dingen kon ik niet zelf regelen. Ik probeer het wel zelf ,maar soms loop ik vast. Alle dingen die ik denkt te kunnen, doe ik. Als je het niet probeert dan weet je het ook niet. Papieren regel ik zelf en digID zaken en dan hoop ik dat het goed gaat. Als het niet lukt dan springt er iemand wel om het dood paard uit te trekken.. Wie helpt u als u tegen iets aanloopt? Pameijer die helpt mij met de papieren. Tegenwoordig lukt het wel alleen. Ik ben een chaoot. Je moet me kamer niet zien. ik verzamel heel veel dingen. Mijn man is ook verzamelaar. Nja, het loopt niet zo ver dat ik 30 duizend boeken in huis heb staan, maar je vervalt wel in oude dingen merk ik ook wel. Enthousiasme/spontaniteit: Rudolf: Ik ben heel spontaan dat noemen ze ook wel ontremdheid. Ik zeg alles wat je niet moet zeggen. Dat heb ik door mijn moeder ontdekt. Mijn moeder zei dingen die ze niet mocht zeggen en toen ging ik op internet uitzoeken en kwam ik er achter dat ik dat ook heb. Het heet ontremdheid en toen dacht ik goh zo ben ik me hele leven al hahahaa. Ik blijk ook een syndroom te hebben. Ik heb ook twee jaar lang mannelijke hormooninjecties gekregen omdat ik geen mannelijke hormonen maakte. Ik had toen al psychische problemen als kind eigenlijk al. Was je altijd al enthousiast en spontaan of is dat de laatste jaren pas gekomen? Ik ben altijd al een lachebek geweest. Ik maak de grootste lol. Ik maak grapjes die niet kunnen en niemand begrijpt ze, dus dan heb ik de grootste lol Marianne: ja meestal wel ik heb soms me mindere dagen maar dat heeft iedereen. Gertjan: Ik ben te spontaan. Soms koop ik dingen zonder na te denken en zonder de financiële gevolgen te overzien. Edward: Ik ben meer impulsief. En enthousiast ook? Nee maar dat zou wel meer mogen zijn. Ik zie ook heel gauw de schaduwkanten van iets. Dus u bent ook wel realistisch. Ja het wordt me soms verweten dat ik te rationeel ben. Als je in een psychiatrische ziekenhuis zit, kan je

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zo naar buiten en doodgereden worden en dan zeggen ze nee moet je niet denken. Maar het kan wel gebeuren. Rudolf: Het kan overal daar heb je geen ziekenhuis voor nodig Maar dat rationele beeld die je hebt ,beïnvloed je dat ook op andere gebieden? Edward: Het blijft een feit dat alles in een flits afgelopen kan zijn. Als iemand door rood rijd kan het al gebeuren. Rudolf: Als jij door rood rijd en ander door groen dan lig jij er ook onder, dat is het probleem niet ! Zo moet je niet denken. Edward: Naja, dat maak ik zelf wel uit. Maarja het is mogelijk, je weet het niet dus dan leef je meer op de dag. Gertjan: Ik ben spontaan genoeg. Ik stap zo op iemand af, is voor mij geen enkel probleem. Enthousiast ben ik ook heel erg. Ook wel impulsief. Dan ben ik zo enthousiast zo druk bezig met dingen, waardoor ik weer erg moe ben en uitgeput. Heeft u ook wel eens momenten dat u zo enthousiast ben in de dingen die u gaat ondernemen? Nee zo ben ik niet, want dan komt er een soort angst over me heen over hoe ik die dingen ga aanpakken. Mondigheid/beheersing van taal: Iedereen schudt zijn hoofd zegt ja: ja we zitten in de cliëntenraad moet wel hè Zelfvertrouwen: Marianne: Het wordt wel beter . Hoe komt het dat het beter wordt? Omdat je meer dingen gaat ondernemen. Ik vind het eng maar uiteindelijk geeft het meer zelfvertrouwen Hoe komt het dat jullie weinig zelfvertrouwen hebben? Rudolf: Ik heb altijd al weinig zelfvertrouwen Gertjan: Ik heb dat ook wel altijd gehad. Ik ben er de laatste paar jaren wel in gegroeid. Je wordt ouder en je denkt meer na over dingen. Sommige dingen denk je beter over na. Ik ben heel impulsief, maar ik heb er wel van geleerd. Heb vaak me kop gestoten en door me fouten heb ik meer geleerd. Krijgt u van de geleerde fouten meer zelfvertrouwen? Nee juist niet. Doordat je impulsief bent en je er niet bij nadenkt wordt je onzekerder van jezelf. Maar ik denk wel dat door de zelfstandige dingen die je doet je meer zelfvertrouwen krijgt. Edward: Ik ben opgegroeid in een klimaat waar niks goed was. Bij een rapportcijfer bijvoorbeeld als ik een 7 had moest het een 8 zijn en een 8 moest weer een 9 zijn. Mijn ouders zouden dan zeggen nou volgende keer een 8 en als de docent dan geen 8 geeft dan zeggen ze moet je beter je best doen. Maar daar ga ik verder niet op in. Hoe zou je meer zelfvertrouwen kunnen krijgen? Nou ja het blijft nog steeds een schaduw of een obstakel. Rudolf: Ik denk dat hij meer vertrouwen krijgt als hij een eigen plek heeft . Dat helpt veel en als hij de kans krijgt om alles zelf in te delen in het huis. Als je in mijn huis roept tweedehands dan is het ook tweedehands mja dat interesseert me niet ik kan leven. Mijn hele huishouden is tweedehands en dat interesseert me geen hol Bent u er mee eens dat als u u eigen leven inricht u meer zelfvertrouwen krijgt? Edward: Nee, ik denk dat het echt is ingesleten. Ik zal altijd wel iets vinden waardoor k mijn zelfvertrouwen ondermijnt. Als ik wat moet doen, ik vind altijd wel wat. 3) Weet u zelf wat u behoeften en eigen krachten zijn op de volgende terreinen: zie turflijst Huishouden: Rudolf: ik vind me zelf geen perfecte huisman, maar als mensen zeggen dat het bij mij netter is dan anderen dan is het denk ik wel goed. Heeft u ook de huisvesting etc. besloten? Ik

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woon in een plek war ik altijd heb gezegd daar wil ik nooit wonnen, maar nu woon ik er ! dat is heel erg geweldig mja het was of 6 maanden wachten of een met een tuin. Zolang ik daar zit, zit ik goed. Maar als ik in een ander huis kan heb ik dat liever. Dan komen er gelijk kwartels en etc. Marrianne: misschien voor de toekomst Maakt u het kenbaar die behoefte? Rudolf: Als ik een huis probeer te krijgen voor mij alleen wordt het nog kleiner dan wat ik nu heb in de huursector. Dus dat gaat niet gebeuren. Gertjan: Ik heb er geen problemen mee. Mijn vrouw is dan gehandicapt dus uh dus zij heeft wel mensen die haar verzorging doen. De huishoudelijke taken komen op mijn rug terecht enzo. Edward: Ik ben op zoek naar een plek natuurlijk. Hoe ben u opzoek? Via mijn woonpas. Hulpverleners hebben me niet aangeboden om ergens te wonen. Ik laat me ook niet zeggen waar ik ga wonen. Dat wil ik zelf uitkiezen. Momenteel woon ik bij mijn dochter. Financiën: Marianne: Financiën is altijd goed gegaan. Ik heb het goed in beheer. Rudolf: ja ging altijd goed. Alleen kwam er laatst een hoge rekening opeens van de Eneco. Weet je wat het is ik heb een hele grote verzameling dus als ik wat nodig heb verkoop ik gewoon wat en dan is het gat weer gedicht Gertjan: Ik heb nooit schulden gehad. Toen ik werkte leefde ik goed. Nu ik een tijdje een uitkering heb leer je zuinig te leven. Ik heb ook een cursus gevolgd. Omgaan met geld bij stichting mee. Hoe bent u erop gekomen? Ik was al bij stichting mee om praktische dingen te regelen. Toen zei die begeleider van kijk we hebben ook cursussen liet hij een folder zien en moest ik beslissen. Ik had geen problemen met geld maar ik dacht er wel makkelijk over. De verschil van werken en uitkering is een groot verschil qua uitgaven. Dus ik ging dat boekje bekijken en het leek me wel interessant. Stichting mee heeft het aangeboden en het is via hun gegaan. Wist u daarvoor dat er ook al zulke cursussen waren of zonder stichting Mee zou je het niet weten? Nee ik wist het niet mijn vrouw loopt al een tijdje bij stichting Mee en die wist het ook niet. Maar ze hebben veel cursussen ik had ook een cursus omgaan met agressie gedaan. Rudolf: ach kind heb jij agressie. HAHAHAHAH Gertjan: Nee maar die agressiecursus was niet echt voor mij de mensen waren echt te agressief dat ben ik zelf niet. Edward:: Nu gaat het wel beter op financieel gebied, maar dat was even minder geweest. We zijn bij de schuldsanering terecht gekomen Hoe bent u er terecht gekomen? We zijn zelf naar de schuldhulpverlening gestapt omdat we problemen hadden. Dat was ook een treurige reis, maar ik heb het wel in beheer na 5 jaar. Vaardigheden en competenties: Gertjan: Soms kunnen de vaardigheden, zoals enthousiasme en impulsiviteit goed uitpakken en soms niet. Maar daar heb ik wel door ervaringen geleerd. Vind u dat een kracht of een behoefte. Ik vind het geen kracht het is mijn eigenschap. Ik zie mijn kracht niet in initiatiefrijk zijn ik ben toch wel wat terughoudend Marianne: Ik zie me krachten wel in assertiefheid en initiatiefrijk zijn. Edward: ik ben meestal laat assertief. Je hebt eerst heel veel gezegd en dan kom ik pas tevoorschijn maar of daar me kracht in zit, het heeft me ook in de problemen gebracht.

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Je kan proberen te veranderen maar dan moet je er zo op blijven letten de hele dag Rudolf: ik ben niet meer helemaal helder het duurt te lang. Als ik nu mijn krachten niet zie dan is het hopeloos ben al wat ouder. Als ik goed kan spelen met me trompet ben ik tevreden en als ik reclame kan maken nog beter. 4) Met wie neem je als eerst contact op je behandelaar of sociaal netwerk (buren. Familie) wanneer u hulp nodig heeft Rudolf: Pameijer, maar ik probeer zoveel mogelijk dingen zelf op te lossen. Hoe lost u zelf dingen op? Duurt heel lang maar meestal via internet alles uitzoeken en als ik echt niet uitkom dan neem ik contact op met Pameijer. Edward: Voorheen me vrouw en nu de hulpverlening. Als ik het zelf op kan lossen zie ik het nog niet als een echt probleem . Gertjan: Allereerst bespreek ik het met mijn vrouw en dan neem ik contact op met de behandelaar. Marianne: Mijn partner en als we er samen niet uitkom, dan vrienden en laatste stap hulpverlening 5) Heeft u last van de beeldvorming van de omgeving over psychiatrische Patienten > op welke gebieden/terreinen in u leven Rudolf: Wat ze denken van me, het interesseert me geen hol. Ik heb me hele leven druk om gemaakt hoe anderen over mij denken. Ik heb veel problemen gehad in het verleden nu heb ik zoiets van krijg de pest maar. Klinkt niet aardig maarja ik kan beter voor mezelf opkomen. Van een ander hoef je niet afhankelijk te zijn. Dit is mijn leven jullie hebben de kwaliteit van mijn leven genoeg de nek omgedraaid. Ik ben in mijn beeld wel grappig als iemand een opmerking maakt hap ik gelijk toe. Ik heb er wel last van maar dat hoeven ze niet te weten. Marianne: Toen ik nog werkte had ik er wel echt last van. Met mijn depressie vond ik het wel lastig om uit te leggen waarom ik niet veel kan werken. Daarnaast als je ziek bent brengt het wel druk en spanning in de relatie. In de hulpverlening heb ik er nooit last van gehad. Op de zelfvertrouwen heeft het wel een knal gehad. Kon u daardoor geen dingen ondernemen want nu zegt u dat u dat wel kan? In het begin niet als je zwaar depressief ben wil je alleen in bed blijven. Door middel van medicijnen en gesprekken kom je langzaam uit de put. Gertjan: je hebt het meer over stigma toch. Ja vooral op me werk. Als je werkt dan heb je er veel mee te maken, want ik was ook depressief dus ze kunnen niet zien wat er aan de hand was. Hierdoor zeggen je collega’s : ‘’je stelt je aan, wat is er met je, ja lekker hé dat je lekker vrij bent, lekker hé halve dagen’’ zulke opmerkingen. Die mensen weten niet waar ze mee bezig zijn en dit is een heel zwaar punt. Het begrip stigma is echt een probleem. Zodra je niet volledig kan functioneren dan krijg je een stempel. Heeft het invloed op je eigen regie? Ik ben depressief geworden en ik heb een maand thuis gezeten en na een maand ben ik weer gaan integreren. Dit ging toen te snel en ben ik weer terecht gekomen in de ziektewet. Het is gewoon wat was je vraag ook al weer? Ja het belast je wel in het regie nemen. In het begin trok ik me eigen heel erg aan. Je schaamde je ervoor. Ik had geen zin meer om naar mijn werk te gaan toen ik ging integreren. Dit is echt een probleem in de maatschappij en het zal ook niet zo gauw verdwijnen. Het zou meer aandacht moeten krijgen. Edward: nou mij maak het niet zo uit wat mensen van me vinden. Het is geen verplichting om met mij om te gaan. Als het je niet bevalt dan rot je maar op. 6) Hoe voel je je wanneer je zelf een beslissing heb gemaakt of iets zelf heb geregeld. Iedereen voelt zich top

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Gertjan: het is een overwinning op jezelf op alles en op zelfregie. Rudolf : die gevoel is tijdelijk Gertjan: het is wel tijdelijk maar het is wel leuk Rudolf: ja op dat moment is het leuk en daarna is het over Ook al is het tijdelijk beïnvloed het je op zelfvertrouwen op lange termijn? Rudolf: het wordt wel beter maar ik ben ook lang in zorg. Hoe moet ik er nou op reageren? Je mag nog over nadenken Marianne: ik vind het top en als het goed uitpakt al helemaal Edward: ik ben wel blij, maar het duurt maar even. Daarna zie ik weer haken en ogen. Ik vind altijd wel iets wat niet goed is gegaan. Beïnvloed u dat ook in het zelf keuzes maken? Nee ik maak wel gewoon keuzes dat weerhoudt me niet

Appendix 4. Observation list and interviews Ohio ACT Team ACT Team OHIO Columbus Motivation : The Patient radiate energy, is optimistic and is actively seeking for solutions and takes initiative like Asks questions to the social worker, when a problem occurs the patients tries to solve it himself, Striving to achieve his or her full potential and future

Negative symptoms are noticed.

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Self-confidence: head high, eloquent , knows what he/she wants to have a pleasant and quality of life , feet on the ground, straight posture

| (Negative symptoms) The first patient really knows what he wants to do and said is serious about it.

hope, personal development, responsibility, standing up for yourself and support

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social workers delegate the task  Patients calls to the instutions/organizations

Social worker calls for the money | (calls for

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







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themselves Speaks to his social network every week and ask them for help. Search on the internet to arrange their things or find solutions Take control in the conversations by asking questions, debate and discusses, give their opinion, Initiative by searching and brings information and solutions on the table Knows their strengths and make known what their good in and what they want in life.

Attitude of social worker who promotes self-direction(welzijn nieuwe stijl) - Patient is the centre of the conversation not his/her problem by asking about opinion and wishes of client - recalls the clients strengths and uses them in the treatment by asking how they solved previous problems - search for the complaints so that the positive side can be inventoried of the Patient

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he/she trust the strength and the decision making ability of the patient supports the patient with finding their skills

GED) ||

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||( social worker asks tell 3 things about your self)

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|| ( asks the complaints to get the positive side out of it) ||

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Respectful, caring/empathic statements > not giving the patient advice at once, but ask if they want to know more, letting the client speak for himself and understanding

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pay attention to the social environment of the person.> has contact with social environment every week> uses them in treatment the professional encourages the practical and communication skills in living, working, learning and leisure

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|| ( provides information)

Interview for professionals in Cleveland In Ohio some interviews will be held at the ACT Team. My hypothesis is that the ACT teams in America are more ahead with the self-directive care because a lot of approaches and models are developed in The United States. Therefore they can help the ACT Teams in The Netherlands to encourage more self-direction among the patients with severe mental health illnesses. In the theoretical framework two self-directive care approaches, the Strengths approach and the Wellness Recovery Plan were described. These elements of the two approaches will be included in the interviews with the questions that were held in the Netherlands Introduction: The target group in this study are the patients with severe mental health illnesses, like schizophrenia, bipolar disorder etc, whom are in care for a long-term and are stable. In the ACT model you can refer this target group as the regular patients. They are stable but dependent on mental health and at the bottom of the society. The term self-direction is described as the organizing/coordinating of an individual’s life with the aim of having a satisfying good life in his own eyes. It is necessary that individuals retain the self-determination as right and their own power as ability. This allows patients to take their own strategies as activity into practice. Taking direction in your life is also the ability to determine independently how he/she wants to live, work and the social contacts he would like to have. The right of self-determination arises from the human right to create own perspectives in life. Columbus : Shaunice robbinson caseworker behavioral community health care > ACT team. A forensic team and an ACT team. The forensic team monitors the patient in the ACT team that are offenders. Caseworker sees them 3 days per week or either 1 time per week. At the location there are two psychiatrist and one psychologist. Caseworker has 16 patients, mostly are schizophrenia and offenders 1) How do u encourage the authority and control of the patients to make their own decisions? When I go see them I ask them :,, What do you want? It’s the way I start of the conversation with that question. In addition I Inform them, I may provide the clients with suggestions or material and then I ask them what do u want to do or it’s up to you. Also I inform them that

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2)

3) 4)

5)

they have rights and let them know I’m just here to support them and not make the decisions for them. How do u use the environment as resource for the patients to solve their problems or arrange things in life Well by making sure they have a bus pass so they can maintain the communication with the family and visit them. Also to visit the community spots and resources/ organizations. And they know what the neighborhood has to offer them? Yes because we provide our clients with a resource sheet where different resources in the community are displayed. How do u involve the family members. We involve them in the treatment plan, weekly visits and hospitalizations. Normally what I do is when I meet the client one-on-one, I ask the m if they are oke with me asking the family for any issues or concerns. I ask the family if they have any input. I also maintain contact with the family. Do u you use them for arranging things or solve problems. If my client has a recur with their family than I incorporate the family. And they are oke with me incorporating of the significant other I will definitely do that. But most of the clients don’t have any family contact or the relationships are bad. In that case if I know there is a problem I would not incorporate them with anything of the client. But if the family is involved I definitely include them in every single thing and they will let you know that they want to be included and updated are concerned. How often do u use the environment as resource for the patient to solve their problems or arrange things in life? Once or twice weeks. How do u encourage the initiative of the patients, their performance and satisfaction of life Reminding them of their progress. How far they came. How long it been when it was the last time they were last hospitalized. Remind them of their housing and their new environment. I only focus on the positives. I never go back to the client with any negatives. And if the patient isn’t initiative with fulfilling their dreams like the client joey we visited, he said he wanted to do math so do you to take the step to fulfill that dream for him? I informed him that there is a vocutational person who can help you with that. Let me know when you’re ready. My client says he is thinking about going to school. So I can go online and find information about schooling and then the next visit we can talk about it. Oke so how do u encourage him to do that himself? When he is ready. I mean that’s a part of the encouragement providing with the resources. So when I provide the resources I can review it with the client and see if he is ready for it. I can get a referral for the vocutational person or ask him: ,, would u like to go to the library to search for a school? ‘’ And I will ask him what kind of help do you need from me. It can be something small and simple like give me a pen and a piece of paper and let me write it down.’’ You got to be creative but you don’t want to be pushy. Encouragement can be in a form in just with talking about it every week or bring your laptop and show him different material in the community. A lot of times the encouragement comes from when the clients are out of their stressful environment by being at the office. And another way is saying:’’ I hear you want to be to school you are not taking your medications lately without medication you mind will not be right and you can’t focus on school. So medication is the key to go to school get to work or having friends. How often do they take the initiave to do all these things by themselves. Not that often it’s more likely that the social workers give the resources. Which situations makes it hard to delegate tasks to patients.

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Money management and budgeting. Most of our clients would like to be able manage their own money. We can give them the opportunity to do so. When they are not successful then we find them with their utilities shut off, loss of housing or with no money at all and they have no clue where the money went. Majority of the time money becomes in between our relationship. They get their checkes and then their positive symptoms kick in they think you steal their money or withhold their money. It’s a big problem I’m experiencing. So how can they get more control over their money. It happens. They can gain more control by developing money management skills. Do the professional encourage building these skills. We do weekly budgeting sheets and we go over it weekly. Or we support the client to cash their checks. We found out how they spend their money. We encourage them to have a calculator and a bill box. A half of the patients have outside payees but get checks from us weekly. They get small amounts of money every once or twice a weeks and then we go into the community with the client to help them with the money. I may say: ,, Here is 50 dollars, you say you want to buy groceries but you want to buy your girlfriend something how can u do both.’’ We do coupon cutting we do online shopping. And that’s all the things you do or the patients? How many things does the patient do their self. It’s very few that budget on their own. I have some clients that do the coupon cutting and do their own grocery maby a small 5 percent can do it. The most part they require the hands on with budgeting they really do. Even the patients we assume have higher functioning I have a client right now she manages her own money she doesn’t have a payee. She stops paying the electricity during the winter because she believes she is saving money. Is that actually budgeting? However she does it very well with money but only the time October till December she doesn’t pays. But the downside is hat the agencies only see 30 people a day and people are in line from 6 o clock in the morning and sometimes you will be turned away. So sometimes they only notice it when the utilities are already shut down. How can the 5 percent gain more self-directed and excel in life. We praise them we let them know about banking opportunities and rewards. The best encouragement is show them what they do, praise them and ask what they need from you. 6) How do u know when to leave the responsibility to the patients and when should u intervene? Oh they will tell you. When they had enough and they want to do it on their own they will let you know. I observe and see if the client is succesful on that area. Then again praise him don’t touch that in that area. I have to intervene if it’s starting to affect their mental stability or their children or jobs or education. I can’t immediately intervene I make bad decisions myself. It has to cause them so much discomfort then u can intervene. Some clients don’t want to be intervened. How do you know they are discomfort because its your opinion maybe the clients know for themselves that they are fine. I work with my clients quite some time in know their attitude, their eye contact their eating and sleeping rhythm. But I never just assume I always try to collect more data from the client. It comes from knowing the clients and know something is not going right. 7) Are the patients informed about all the options there are in the community to achieve their dreams and wishes Absolutely yes 8) How do you increase their self-confidence so the patients can have more control in their life.

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Reassuring and encourage then to follow through , giving them the opportunities to lead and making the decisions. Reminding of their right and the progress and foster the hope. Some clients don’t have any support system we are the only one for them. So if we can go there and see them that’s giving hope and encouraging that is giving the client a reason to take their meds and go to the agency to arrange things tomorrow. Telling them that they look nice. They want to hear the same thing that we want to hear from people. So what about the stigmatization of clients applying for jobs. How do you boost that self-confidence them to get the job they want or fulfill their dreams? First of all it starts with a lot of our clients don’t want to go because of their clothing so we link them up with clothing and job employment skills. We try to link them up with organizations for social skills. Is it all the things you do or do you refer them. No we do it. We can refer them to peer support center or homeless shelters. We refer clients to the YMCA so they can work out. Who pays that? We try to put in their budget or we find a organization that can fund it. How do you get the time to do all these things? Honestly I don’t know somehow we pull it off and the team members work really well together. We see our clients a lot, a 1-3 days a week. We are all aware of their goal. So in morning meetings if another professional goes to my client I tell them remind my client about the job information, remind them of their goal, encourage my client to do self-reliant things. A lot of reminding and phone calls. I would probably be calling with a lot of clients. 9) Do u know what the patients needs and dreams are to lead a pleasant life. The only way I know is if I ask. Do you ask? Yes absolutely. Do you know the dreams from all your clients in the caseload. The ones I activity see I know. I do their ISP I know their goals. I know exactly what they want to work on their hopes and dreams. I use it every day to use it to encourage them to remind them especially when they backslide. I tell them: ,, You want to get a job but you know they would probably comply you to do a drug screen’’. My approach is not to downgrade them and tell them: ,,ow you have drank today’’. My approach is:,, Hey John you told me you want to work so if we go to Mac Donalds your probably submit to a drug screen. And the patient will tell you themselves yeah I should probably not smoke. 10) How can self-directed care be more used in the ACT teams. By being more involved with the patients and have in service training. The case managers should know what is in the community to provide information to the patients where they can find the solutions or find how they can achieve their dreams and wishes. Also its important to ask open questions and motivational interview. A casemanager also has to have a lot of creativity

Interview two in Canton: Recovery center in Canton, Ohio. ACT/IDDT Team. One psychiatric nurse, the team leader, the program maker of the team are at the interview. Alongside Patrick Boyle. 1) How do u encourage the authority and control of the patients to make their own decisions Team leader: This is actually a good question for Marsha and I, because we are on the same page with promoting self-advocacy and independence. It happened that case managers want to solve everything for the patient to make the problem go away faster. Its easier for us to solve them ourselves. But it’s like raising your own kids if you keep doing that they going to

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keep coming back from the time they 20/30/40. That’s not the goal but when u get them when they are young when they first come in and you can promote the self-independence, they will progress trough the stages very well. How do u promote that? when u first start engaging with the client you just let them know and bee open about the expectations. If you don’t do that later they will come back with it and they are so used to the fact you are solving everything. Especially the older patients that have been around a long time, are so used to it So you have to break those customs. I also talk about partnership with the patients. They are in charge Telling them that I’m just along the ride. I encourage them to make decisions. Sometimes I give them two options, because If I give them more they will be overwhelmed. With two options they are more likely to make the right decisions. I always encourage them to make their own decisions. If their house is not really clean and that’s how they want it to be and they are okey with it ,I will be okay with it too. So I respect that. If you give them more control and if you let them know you will be okay with that, you will get better results. Team leader: I also think that it depends on their cognitively ability as well as where they at in the staging. You know for instance we talked to people about transportation and their independence in transportation. In the beginning when you first meet you get a first impression of their independence and we can use transportation as an example. If they can transport themselves to different places in the community we continue to let them to that. But if they aren’t able to do that and they miss their appointment we will step in and provide medication at home. So the first time a patient is in the team the case managers check if the patients are able to come by themselves? Yeah because we get a referral from the community of the hospital of family. Then they get a national assessment before we see them. So we can get a idea of how they global functioning and we get reports about what the level of need is. Program maker: Another good example about the transportation. There is an individual who’s been in the caseload for 14 years and he is always driven to appointments. Now we encourage him more to use the public transportation. But he was so used to us driving him he was resistant about the public transportation because it’s easier to get drop off. But I and Marsha encouraged him to get the bus because we supposed to be helping patients to be independent on their own level. He is able to do those appointments and he does his own money management. Also the insurance agencies provide free transportation to people so they can get to their appointments. So we encourage him to get those services because its free and its good service. We encourage them to be self-determined and independent. Also with using med inherence we promote the self-management. When patients get discharged from the hospital we give them daily medication support. After a while the insights get better and they function better we do a step down from twice a day to once a day and so further. So we have a lot of ways to promote self-advocacy. Nurse Marsha: I have a long-term client who I see every day because he is fragile with his medication. So lately he said he doesn’t want to take the medication in front of me, he wants to take it in a another time. So I bought that and a couple of days later he said he called the police because he got paranoid again. That’s why the contact is important. Some patients we have to see every day because otherwise they lose their apartment. So it’s important to assist them and talk about the partnership because what we all want is that the patient can live a so called ‘’normal life’’

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Program maker: this is very important as well. We have 115 clients and we analyze in what stage they are and which motivational strategy the professionals should use and then we write down who goes to the client. We also looking at who is at risk for hospitalization. We go over this every day because we don’t want to miss it. With so many patients it’s easy to miss them. And also every Thursday we sit with all the nurses and talk about the psychiatric status of the patients and changes of medication. 2) How do u use the environment as resource for the patients to solve their problems or arrange things in life? Nurse: Well in our community its improved but one of the most difficult thing here is proper housing. So the most important thing for case managers is establishing the recur of the community and finding resources. In that way when there is a problem you get assistance. For example there was an fire in an apartment and the red cross won’t provide them housing. So I called a group owner: ,, I need some help can you assist me for these patients’’. Another thing what’s important is to inform the patient what is available in the community when they start in the team. Because some of the patients don’t have a clue what the community has to offer them. I think our team we are specialized in is making patients aware of resources. We have a good service for food here I think the best in the states. And what about the families of patients how do you include them in arranging things for patients? Uhh as appropriate if the clients want that half the times some of the family has given up or there is a lot of chaos in the relationship. We try to find who the friends are of the patient or if there is /any support because that’s valuable. We also use the family to get reports of the patients when they are not doing well and they keep an eye on them when they are not using their medication. But that’s how you use the family to control the medication and the safety, but how do you use the family or environment so the patients can achieve their goal, go to school etc? Team leader: Family is really important we have a lot of patients that are intelligent and college educated. It’s interesting because when we step down on the intensity of the treatment. We do a referral form and in that form we mention what kind of support the patient has. So it’s clear which people are around him. Uhuh and one client is going to college right now and his family members helps him maintain his independence. At the moment they keep an eye on their symptoms. They keep in contact with us while watching him take the bus etc and take care of the basic needs. Nurse: And a lot of time when we go into the community we meet with the families and we discuss the role of each person in where they have to assist in etc. How often do you do that? Ongoing phases as needed. We have one individually the mother is the guardian and she participates a lot and I give her credit for being there. It is really outstanding when they have this support. We really try keep that going but sometimes it’s difficult because the family is too intrusive which results in the patient not recovering. Team leader: So then we need to step in because they are placing barriers in the recovery and enabling them and making them more dependent. Its quit common so we do a lot of family education to solve that. We do a lot of promotion for foundation as well for the patients. What is foundation? Foundation is an organization in down town Canton. It’s consumer based. They have a lot of groups there, like double diagnose groups, women empowerment, men empowerment groups etc. Some of our clients utilize it, because it helps them realizing that there are more people that have mental problems. We have a client who

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has a training at wormline that’s a version of a mental health hotline. So they can socialize with other people. There are classes they play cards or can even participate in a WRAP training. Nurse: Something else about the environment. Canton is a small community and everybody knows each other or helps each other. An example an individual was at the bank on a winter day. So he asked the lady at the bank if she can call the recovery center for him so he can get a ride. So the bank employee called us. Another individual works at the restaurant down town for cigarettes. There are a number of clients that have jobs downtown. Who finds these activities is it the client or the professional? Team leader: it’s the client. They go to the places and ask if they can work there or help them. Our clients are really social and they have been here for a while so they know where to go and who to ask. 3) How do u encourage the initiative of the patients, their performance and satisfaction of life Nurse Marsha: every time I see the client I ask them what can make your life better. Sometimes I have one individual for example, I really want to know what she enjoys to do because she is isolated. It took some time but eventually I figured out she likes having coffee. So you have to know the person and learn to trust them. So this woman was satisfied with just getting some coffee. Do you do more interventions so that patients can be excelled more in life instead of just drinking coffee? Yes definitely the next step would be finding out what more she enjoys. I know she is really found of art. Team leader: We have to figure out what’s important for the clients. There is one individual he is extremely ill and has a high drug and alcohol abuse, but he is also intelligent and wants to show people that and get the connection with people. So for him its having that connection and have contacts with other people so he can have validation from these people. But after he gets that he will stop and listen. So the most important is figuring out what they want so just sit and listen and not approach them with any intention but listen to what the clients has to say and want. Nurse Marsha: Also we have to respect what the individual satisfaction of life is. There is one guy he is in his mid twenties. I would like more for him but he is happy with his current situation. His place is not how he want it to be but he finds comfort with how is place is. He is not in danger but he likes to be by himself, walks and being on the computer. He is quite paranoid and he lost his trust in me because I had to come and check his apartment. The police thought he was making bombs and I had to do searches. I learned that I shouldn’t have done that. I learn over the years that you have to adapt on their choice of living their life. Everybody in his family wants him to conform to their reality not the clients reality, while the client is just doing fine now. How do you improve the skills and competencies to achieve goals on their own? Team leader: I have a perfect example that’s going on now in our hunter house(a supporting house system).The skills of the inhabitants are lacking but with help of the professionals they learned how to clean their houses. How do u improve competencies like being initiative or assertive, competencies they need to be more self-directed? Team leader: If you think about the symptoms like disorganized thoughts when they aren’t able to focus. For a lot of time the symptoms improve so their skills improve as well, they are correlated. But sometimes the cognitively ability has a lot to do with how they were born or because of what they did younger. You should figure out what they are still capable to do. There is one individual he did huffing(Drugs) so he damaged his brain so he will never

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improve some skills. Most of our clients can improve but some are so severe that they need support housing. Nurse: You always try to let them be the best they can be today. Some patients surprise me. One patient made it in a community, had a house with a roommate for about a year and a half. Unfortunately the case managers weren’t on top of him and he became paranoid and stopped taking his medication, so we had to change the environment. But we talked with him about working on his skills again and his independence and we going to try it. What’s impossible today can be possible tomorrow. Program maker: There is a service that helps people to ride the bus on their own. It’s important as case manager to go with the patient the first time. In that way they can trust it and feel comfortable. So that’s why it’s so important to know what kind of resources there are in the community so patients can be more independent. 4) Which situations makes it hard to delegate tasks to patients. Program maker: With the staff they have to assess how independent they are, what kind of assistant the patients need, what kind of approach should we teach or coach or do we need to take more control. It depends on which client you have. So before you do something for the patient you always asses what they are capable of? Nurse: absolutely uhm always foster independence in the recovery and a lot of times the clients can go with you to places and support them. What about tasks like calling to organizations and services how often does clients do that on their own? Team leader: It does happen sometimes with some services you can be on hold for 25 min before they answer the phone. So navigating in those kind of phone calls are often difficult for patients. It’s difficult to promote that kind of independence because its quicker and easier just to do it for the patient. I always tell the patient: ,,we will not do it for you but we will do it with you and we are beside when you do it’’. So when they have a difficult time we can coach them with doing the phone calls or I put the phone on speaker so they can listen how I talk to these kind of services. A lot of patients have a lot of shame and guilt. So it is necessary to let them know its normal but it’s also okay to remove the shame and guilt. We are all on equal level but my experiences are different than theirs and I believe that in my heart. Program maker: this is also important. This is the stage wise-intervention. This is what I try to foster in the team. You have to figure out what stage the patients are in the treatment and that will help you to determine which intervention are needed and what kind of approach you will utilize. If they are in pre-engagement phase you shouldn’t use strategies that are used later on in the treatment. So that’s important to figure out where they at in treatment. 5) How do u know when to leave the responsibility to the patients and when should u intervene? Team leader: Ongoing assessments on their needs and functions. Some days they are capable of managing more, other days they have environmental stresses or struggle with their symptoms or use a lot of alcohol and drugs so we step in a little bit more. Nurse: You have to determine what’s important some things you have to let go of it. How do you let go? Nurse: I have a client she doesn’t do any groceries and has no food. She is making bad choices on that. But one thing about it she loves to eat so her mother does the groceries for her. So sometimes is hard to let them fall we want to protect them. But we have to do it in

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order to let the patients experience the natural consequences. I’m pretty big on that everybody should be responsible for their own choices there is no free pass because you have a mental disability. So is there a specific way to let patients go and make their own choices? Team leader: it has to be clinical driven. It’s sort of subjective but there has to be a clinical reason you really have to think about it and you have to think if it benefits the client situation and life. Nurse: A lot of patients are used to professionals that do things for them. Especially the older long-term patients. Patients were institutionalized and are now back in the community. So a lot of things have changed for this patient and yeah It’s a hard nut to crack. How do you do that? I don’t have a sense of entitlement and I hear it a lot of time I’m huge on independence. If you want to be normal you have to act as normal person so you have to really educate them. Professor Boyle: I hear the word entitlement a lot I think it has a lot to do with comfort because people get comfort to certain environmental forces . When that changes it’s uncomfortable and we get agitated. So it’s a matter of how to help them so they can be see the importance of taking care of themselves and help people see the benefits of taking care of themselves Program maker: I think it has a lot to do with the team too. You need a passionate team in order to help people be more independent. They also need to have the philosophy of promoting self-direction. Because of the trainings that are provided we understand why it’s important to encourage self-direction. Professor: it’s a lot more interesting and challenging to help people help themselves. Team leader: There is a light of the tunnel for them. Program maker: You can always give them a basket full of fish or learn them fishing Nurses: What kind of changes make things better. It can be something simple like I want to have my hair done. You take small steps. Team leader: You can have the same conversation with the same client in 15 years before it finally gets to the patient in order to change. 5) How do you increase their self-confidence to have more control in their life. Nurse: It means working on the little things to achieve bigger things. Teaching, coaching, modeling for these patients. 6) Do u know what the patients needs and dreams are to lead a pleasant life. Program maker: Even in the diagnostic assessment there is a section what do you want to accomplish after all the treatment what is your desire outcome. One individual said I want to go to school so you ask them in the beginning what they want to change. Sometimes they are not on that level yet. But while you are working with them in the treatment you can still ask them. Nurse: all the time you ask what is the goal for this week and it can change everybody should have a goal. The important thing is asking. How do you have the time to achieve the goal or dreams/wishes step by step Nurse: So when a patient says I want to be an astronaut what you have to do is think and talk to the individual and ask: ,,What kind of things do you need to arrange in other to achieve that wish’’. In addition narrow the wishes so you can work to the basic needs to start to achieve that goal than to the next goal.

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Program maker: and asses if the goal is realistic for them. Nurse: It is realistic right now because its realistic for them. So you follow that wish it may be something else tomorrow. Professor Boyle: The astronaut question is an interesting one. We often forget to ask what’s important about that goal. One individual experienced that It was important to be around smart people. From in front of the tv smoking cigarettes to being with people with phd people and that transformed him. So it wasn’t unrealistic. He is not an astronaut but he is working at NASA cleaning tubes. Same thing happened to a guy. He wanted to be an attorney but didn’t had his GED, so we got him a job at an attorney office. So all of a sudden he got access to money people, education. He was around different kind of people. We presume he wants to go to Mars or something. But we don’t know before we ask what’s the importance of the goal. Team leader: You need to make baby steps. They don’t know what their option are and they are scared as well. There is a lot of barriers about employment because of benefits. So there are more opportunities for them to work and not lose at much because that was a huge barrier. Times has changed. Nurse: Every case is different and we should try for our patients and need to think what would I want for my family. Some people I know from early 80’s so I want to have them to have the best they can have. 7) How can self-directed care be more used in the ACT teams? The professional should use the clinicians development assessment, where they can reflect on their own approaches towards patients.

Patients interview in the car. His name is Steve and he is around 40-50 years old. He is a Caucasian man and Paula the case manager picked him up from the Payee center and brought him to the recovery center. 1) Do you know what you want to achieve in life, so yes what do u want to achieve. I want a wife and children, have a house . That’s what I really want in life. That’s a nice idea!! How are u going to fulfill this? I am not sure yet I guess I have to stop drinking and using drugs and alcohol. How are u gonna stop drinking? I am attending groups and I don’t really use drug anymore and the drinking is not really that bad. 2) Do you have a job or day activity that you have chosen and are contented with? Yes I do a lot of things. I work at a lot of stores here on the street. I know the people so sometimes I work at the grocery store or I help in the barbershop. I just walk in and ask. And some days I go to the payee center and get some food and money. 3) How often do you call to institutions to arrange things? I don’t really need to ask the institutions. My money is at the payee center and if I need something Paula will call for me 4) With whom do you First take contact with when you need help, your social worker or social network. I have paula my casemanager. And in your social network? What is social network? Family do you call family for help? I don’t really talk to my family. Didn’t seen my brothers in years. They don’t live near Canton

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5) . Do you think that you get enough support, acknowledgement and respect for your wishes/dreams/choices of the professionals and social network . Yes I get a lot of support of my casemanager. She helps and supports me a lot. Every time I have a problem I call Paula. 6) Are you burdened because of the imagining from the environment concerning patients with severe mental health disorders? Yes absolutely. 7) How do you feel when u made your own decision or arranged something yourself. I don’t really make a lot of decisions

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