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Understanding Parents’ Lived Experiences of Their Child’s Admission to an Acute Mental Health Care Facility

Louise Ward, PhD, MNurs, BNHon, BN; and Karleen Gwinner, PhD

ABSTRACT

Lowe, 2007; Queensland Health, 2005). Young people admitted to acute mental health care facilities for the first time may be unable to successfully articulate their specific goals and expectations or navigate a recovery process. Therefore, nurses, who are the frontline of care in the PICU and in the provision of comprehensive recovery frameworks in mental health services, are responsible for supporting and supervising patients’ parents and families.

This article reports the evaluative findings of an Early Psychosis Education Program (EPEP) designed to support parents caring for their child who was recently admitted to the psychiatric intensive care unit of an inpatient mental health care facility in Australia. The EPEP offered education on mental illness, treatment options, and medication, as well as information on the recovery model of care. The EPEP was facilitated by two RNs and was evaluated for educational effectiveness using a simple pre- and postevaluation questionnaire. The evaluation revealed two themes expressed by parents: “We didn’t see it coming,” and “Hopelessness and helplessness.” The themes highlighted the parents’ lack of mental health care knowledge prior to the EPEP, which had a significant impact on the parents’ experiences and well-being. The evaluative findings highlighted a need for a nurse-led EPEP within the community. A community EPEP has the potential to strengthen the partnership between parents, families, and mental health service providers and to help with the provision of a recovery framework of care. [Journal of Psychosocial Nursing and Mental Health Services, 52(7), 24-29.]

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arly developmental phases of mental illness can typically emerge in late adolescence and young adulthood (McGorry, 2011; Purcell et al., 2011). However, young people and their families often have limited experience with mental illness and are understandably apprehensive of the real and imagined consequences of seeking support from mental health services (Cleary, Hunt, & Walter, 2010). Failure to seek initial support and information often results in the first contact with mental health services occurring during an acutely unwell phase or a psychotic episode. This delay in seeking treatment also often results in an acute admission to a hospital and subsequent 24

treatment in a psychiatric intensive care unit (PICU). As a pathway to care, this can be extremely traumatic for young people and can result in both fragmentary communication and the exclusion of their families and carers during this acute phase (Delaney & Johnson, 2008; Hallam, 2007), thus resulting in a significant impact on the process and outcome of recovery (Brown, Calnan, Scrivener, & Szmukler, 2009; McGorry et al., 2007). RNs are in a unique position to educate, nurture, and protect a process that supports a comprehensive recovery framework, thus improving quality of life for young people experiencing mental illness and their families (Hosany, Wellman, &

DEFINITION OF RECOVERY Various literature and policy documents use the following description for recovery-oriented mental health services. This description is adopted by the current article’s authors and is presented in the context of the Early Psychosis Education Program (EPEP) evaluation. The concept of recovery involves a person developing an individual and deeply personal, satisfying, hopeful, and meaningful life, even with limitations caused by mental illness (Anthony, 1993). The process of recovery is shaped by the connectedness and participation with social networks (Glover, 2005) and in the exchange of hope, choice, empowerment (Queensland Health, 2005), independence, and interdependence (Onken, Craig, Ridgway, Ralph, & Cook, 2007). Copyright © SLACK Incorporated

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PSYCHIATRIC INTENSIVE CARE UNIT The PICU is a designated ward within an acute mental health care facility that provides routine care as part of the Australian integrated mental health system (Australasian Health Infrastructure Alliance, 2010). The PICU is a locked space containing bedrooms, seclusion rooms, a lounge, and an outdoor courtyard. Mental health RNs and the treating medical team manage the PICU. The purpose of the PICU is to provide safe and therapeutic treatment for individuals experiencing an acute phase of mental illness. The PICU provides health care to individuals 17 and older and to those who are admitted involuntarily under the Mental Health Act (Commonwealth of Australia, 2009; Happell & Koehn, 2010; Queensland Government, 2000). The culture of the PICU remains controversial, with ongoing national and international debate regarding its role in providing effective practices and approaches for

improving recovery from mental illness (Paterson & Duxbury, 2007). Some global initiatives have positively pursued a recovery or patient-focused framework for improved treatment outcomes in acute psychiatric units. These programs incorporate various practices, such as (a) solution-focused nursing; (b) physical health and activity programs; (c) focusing on patients’ personal goals and responsibilities (Hosany et al., 2007); (d) patient and health professional partnership (Gandi & Wai, 2010); and (e) family-inclusive engagement (Bamm & Rosenbaum, 2008). Supporting the family through inclusive and collaborative nursing practice was the motivation behind the EPEP. METHOD The EPEP was designed to provide support and education to parents of young people who were recently admitted to the PICU of an acute mental health

JOURNAL OF PSYCHOSOCIAL NURSING • VOL. 52, NO. 7, 2014

care facility and to help them with the provision of a recovery framework of care. The EPEP provided an interactive learning environment 2 hours per week, during which parents came together to learn about mental health and illness and share their personal experiences. Topics discussed included (a) mental illness and admission to the PICU (Week 1); (b) drugs and alcohol (Week 2); (c) medication (Week 3); and (d) recovery and relapse (Week 4). The EPEP was designed and delivered by two mental health RNs. The EPEP Evaluation

The EPEP was evaluated for educational effectiveness using a simple pre- and postevaluation questionnaire. The pre-evaluation questionnaire focused on the parents’ knowledge of mental health and illness prior to their sons’ or daughters’ admission to the PICU. The pre-evaluation aimed to gauge their understanding or lack of understanding of 25

mental illness, treatment options, and the recovery process. The postevaluation questionnaire was used to assess the effectiveness of the program. Following ethical approval from the local Health Service, EPEP packages containing an outline of the 4-week program, the EPEP evaluation participant information sheet, and a consent form were distributed to RNs, case managers, psychologists, treating doctors, and psychiatrists working in the acute care facility. The packages were then offered to the parents of current consumers in the PICU. The parents were informed they could choose to participate in the EPEP; to participate in the first EPEP, they were asked to contact the EPEP researchers, one of whom was the first author (L.W.). Contact details were provided on the information sheet and the consent form. The researchers were available to answer any questions. The first 10 parents to register to participate and sign the consent form were selected. It was decided that limiting the group to 10 parents would provide a more intimate space for reflective sharing and interactive educational discussion. On the first day of the program, the mental health nurses facilitating the EPEP collected the consent forms. The consent forms were then stored in the community mental health education office in a locked filing cabinet. Participants were of varying ages, ranging from 34 to 56, and all reported differing sociopolitical backgrounds. Two participants identified as indigenous Australian. There were four men and six women. The men all had current partners and had two other children in their care, collectively. The women had between one and five children in their care, respectively. Three of the women had partners. They were all parents of young people (age range = 17 to 20) recently admitted to the PICU of an inpatient mental health care facility. The EPEP ran 2 hours per week for more than 4 weeks. The program was held in a meeting room on the hospital grounds. The pre-evaluation occurred before the first 2-hour education session on Week 1, and the post-evaluation occurred after the last 2-hour education session on Week 4. The pre- and postevaluation questionnaire consisted of 26

the following five open-ended questions: ● What do you know about mental health and/or mental illness? What do you know about the medications used in mental health care and the PICU? ● What knowledge do you have about drugs, alcohol, and mental illness? ● What support do you feel you require as a family member caring for someone who is mentally unwell? ● What is your understanding of the recovery process in the PICU? ● Please describe your experience with the admission process. Because the educational material and subsequent survey questions could be considered confrontational or challenging, the two RNs administering the EPEP offered to meet individually with anyone who felt distressed or required greater support. Participants were also informed that they could access a free counseling service at any time during or following the EPEP sessions. Data Analysis

Thematic analysis was used to explore the research data and reveal recurrent patterns and trends in the participants’ responses. All key responses were colorcoded and grouped. They were then compared and regrouped to identify common threads. Thematic analysis allowed key focus areas to be brought forward. The analysis revealed the subtleties and complexities of the participant experience in relation to the EPEP. As O’Leary (2004) stated, “Words can lead to themes through exploration of their repetition, or through exploration of their context and usage” (p. 196). By scrutinizing the data, interpreting meaning, and drawing back to the EPEP, the researchers informed the reflexive process of data analysis. Four academic staff members reviewed the participants’ responses to the five pre- and postevaluation questions. Discussion and debate ensued until there was agreement on the key themes identified. The findings were then discussed with the participants to ensure clarity of meaning and to confirm that the correct findings were being represented. RESULTS The EPEP pre-evaluation identified the parents’ lack of knowledge about

mental health care, mental illness, the PICU, and the recovery process. It also identified their lack of understanding about medication use and available treatment options. The 10 participants answered all questions and identified their personal experiences and provided an emotional response to their sons’ or daughters’ recent admission to the PICU. Two thirds of responses made reference to both negative and positive experiences in the mental health environment. Concerns were raised regarding the PICU being “untherapeutic” and the staff being “judgmental and unhelpful.” All 10 participants identified a lack of knowledge about medication and potential side effects. This lack of knowledge was compounded when they experienced their sons or daughters in a state of debilitating drowsiness. The participants also revealed their concerns about their children’s safety and physical health. They felt unequipped and disappointed with themselves for not knowing more about mental health care prior to their respective child becoming unwell and their child’s subsequent admission into the PICU. They reflectively wrote about what they saw as a lost opportunity to support their respective child and potentially prevent the admission. They identified feeling responsible, guilty, and angry. For many of the families, the admission of a son or daughter to a mental health facility and/or a PICU was a very disruptive event. The post-EPEP evaluation, which used the same five questions, revealed an improvement in knowledge acquisition; however, it uncovered a sense of hopelessness and helplessness regarding the future. The parents evaluated the EPEP as valuable and worthwhile, but they simultaneously reported a sense of despondence and lack of confidence to adequately support their respective child’s recovery. More than one half of the respondents considered the EPEP “too little too late.” They believed that if they had received this education earlier, they might have prevented their child from becoming unwell. In the postevaluation, parents also clearly identified a lack of support provided by staff during the admission process. These key areas of concern identified Copyright © SLACK Incorporated

from the pre- and postevaluations are grouped into the following two themes: “We didn’t see it coming,” and “Hopelessness and helplessness.” “We Didn’t See it Coming”

A major theme that emerged from the findings was that the parents “didn’t see the psychosis or illness coming.” The preevaluation data and the admission stories highlighted how the families felt responsible for not identifying the psychosis earlier or preventing the illness from developing. One participant said: My son had been out of work for 12 months. This had got him down. We knew that. He wasn’t going out and he seemed to be fighting with his friends a lot. We let him be and tried to talk to him but we had to go to work, too.

The participants evaluated the events leading up to the hospital admission with noticeable regret and made several comments about how they wished they had done something different. There was a degree of searching for when and how the psychosis had crept into their lives. They reported feeling sad and ashamed. They also reported that their lack of knowledge had left them unprepared and that following the education sessions, they were embarrassed because they could now see that the illness had been present in their lives for some time. Regarding the PICU, all 10 parents had no preexisting knowledge of the environment and no understanding of the treatments offered or the recovery process. Based on their recent experience with their children’s admission into PICUs, the parents described the PICU as “prison-like” and “confronting.” All participants also believed they were excluded from the PICU admission process, and they felt dislocated from their children on arrival at the acute mental health care facility. All 10 participants made reference to the need for greater community education opportunities for parents, so that they can be informed of the signs and symptoms of mental illness. “Hopelessness and Helplessness”

The pre- and postevaluation data highlighted a sense of “hopelessness and

helplessness” about the future and how parents doubted their ability to help with their loved ones’ recovery. All 10 participants expressed feeling “left out” of the admission process, “disconnected” from their loved ones, and “estranged” at the time of admission. They articulated a sense of “hopelessness,” as they acknowledged that they had been unable to prevent a series of unfortunate events and, therefore, felt ill-equipped to support their children’s recovery. One participant described being “dismissed” from the treatment area during the admission process because their loved one required medication. Another participant reported feeling “lectured by a nurse” about what he or she “should have or could

tentially traumatic experience that causes emotional injury to the carer as well. Eight of the 10 parents reported that the PICU was a place their loved ones were “taken to” and that they were “excluded from.” They described the PICU admission as “locking away,” “isolation,” and “removal.” The PICU was considered an unknown environment to which they were not invited. DISCUSSION The findings from the EPEP evaluations suggest a need for mental health education for parents. The findings also suggest that the parents who participated in both the EPEP and the pre- and postevaluations were markedly distressed

The participants expressed feelings of guilt and a sense of isolation from their loved ones during the admission process and therefore felt dislocated from their loved ones’ recovery.

have done” to prevent the crisis. As a result of this interaction, the participant felt inadequate as a parent. All 10 participants made comments about how they were unable to see their loved ones following their admission to the PICU. This caused feelings of “sadness” and “isolation.” The participants expressed feelings of guilt and a sense of isolation from their loved ones during the admission process and therefore felt dislocated from their loved ones’ recovery. One participant stated: My husband and I are not sure why this has happened to our son but we feel guilty about not helping him sooner.

Many participants expressed “hopelessness and helplessness,” as they could not prevent their loved ones from becoming unwell, and this sense of failure had them doubting their role of carer. One participant stated, “…it broke our hearts because we felt as if we deserted him.” This comment clearly outlines what many participants expressed regarding the “handing over” of a child to a mental health service and how this can be a po-


by their recent admission experience and were openly fearful of the recovery process. Greater research into the provision of information and emotional support for parents of young people experiencing mental illness is required. Many of the issues raised in both the EPEP and the pre- and postevaluations have been raised by national consumer and carers groups and relate to the forced administration of medication, stigmatizing effects, legal and ethical issues, and harmful physical and psychological effects on both the patient and families/ carers (Sailas & Wahlbeck, 2005). Johansson, Skärsäter, and Danielson (2007) stated that the PICU environment can be overshadowed by an atmosphere of control, not dissimilar to facilities of custodial care and environments of great risk. Other studies have summarized perceived qualities of treatment and care in the PICU as defensive and reactive (Mullen, 2009) and maintaining an overemphasis on medication and risk management (Bertram & Stickley, 2005; Bowers et al., 2008). This treatment results in reduced patient interac27

KEYPOINTS Ward, L., & Gwinner, K. (2014). “It Broke Our Hearts”: Understanding Parents’ Lived Experiences of Their Child’s Admission to an Acute Mental Health Care Facility. Journal of Psychosocial Nursing and Mental Health Services, 52(7), 24-29.

1.

Early psychosis can have a significant effect on the lives of young adults, their families, and/or their carers.

2.

Early psychosis education can help parents better understand how to support their sons or daughters who were recently admitted to an inpatient mental health care facility.

3.

Early psychosis education can provide an interactive learning environment for parents to come together to learn about mental health and illness and share their personal experiences. Do you agree with this article? Disagree? Have a comment or questions? Send an e-mail to the Journal at [email protected].

tion (Bowers et al., 2005; Hosany et al., 2007) and stipulates an observational culture in which principally nurses may supervise patients in a way similar to prison officers supervising prisoners (Mullen, 2009). The EPEP evaluation highlighted how such a custodial culture disconnects carers from the admission process and is not supportive of the recovery model. The EPEP participants reported that the early developmental phase of their sons’ or daughters’ mental health problems had been somewhat unknown to them and that the EPEP had confirmed their lack of knowledge. This realization caused feelings of inadequacy and guilt regarding their parenting, which highlighted significant issues and revealed the ineffectiveness of the available, traditional community education and family support options. Research confirmed that consumers and families who experience mental health problems and who receive inadequate health care and family support over extended periods of time can experience adverse outcomes with social connection and chronic illness, and they may also be isolated from opportunities and quality of life in the community (Hallam, 2007; Wilkinson & McAndrew, 2008). The Australian Clinical Guidelines for Early Psychosis aim to reduce disability and disturbance in life development (Royal Australian and New Zealand College of Psychiatrists Clinical Practice Guidelines Team for 28

the Treatment of Schizophrenia and Related Disorders, 2005). Whenever possible, the family and significant others (i.e., carers) of those experiencing mental illness should be encouraged to be involved in the initial assessment or be given the opportunity to contribute information. The family and carers need to be considered collaborative partners and, as such, should be given information and support during the early development phases of their loved ones’ mental health issues. The contextualized experience of families and carers shared within the current article highlights the significant lost opportunity to positively influence recovery outcomes of young people admitted to the PICU by not adequately involving and supporting their families. It is also clear that there is a lack of mental health education in the community, thus leaving parents unprepared to deal with their sons’ or daughters’ illnesses and stilting the recovery process at the early stages of the disease. Gaining knowledge of the consumer, sharing responsibilities, encouraging introspection of behavior, improving communication, and realizing the family–provider partnership within the PICU would support a recovery process formed by connectedness and the exchange of hope, choice, and empowerment for young people experiencing mental illness and their families (Queensland Health, 2005; Roy, Rousseau, Fortier, & Mottard, 2009). The

PICU, as a site of early intervention, has received little attention in the burgeoning literature on early psychosis and treatment; however, it is the most common point of admission for the acutely unwell (McGorry et al., 2007; Yung et al., 2007). Nurse-led community education could bridge the gap and open channels of communication between families and carers and the PICU and the acute care environment. Clinicians involved in the assessment and case management of individuals presenting with their first episode of psychosis are encouraged to try to establish a therapeutic relationship with the patient and their family to instill hope and a realistic expectation of recovery from the outset (Glentworth, 2009). “Band-aid treatment” of the acute phase with minimal specialist aftercare misses a key opportunity for targeted preventive and recovery options. Despite the enthusiastic efforts of many clinicians around Australia, progress in service reform has plateaued, remains piecemeal, and is frustratingly slow. It seems that without firm evidence of the benefits of a culture of practice that engages a comprehensive recovery framework, the family and patient involvement within PICUs will remain characterized by feelings of hopelessness and desertion, as indicated by the participant responses in the current study and as found in other research (Wilkinson & McAndrew, 2008). LIMITATIONS One limitation of the EPEP and the EPEP pre- and postevaluations was the small number of parents who participated. In addition, the themes highlighted may not be representative of all parents who have experienced the recent admission of a son or daughter to a PICU. The evaluation would have been more robust if the parents were interviewed or if the EPEP group discussion had been audio- or videorecorded and analyzed. CONCLUSION The EPEP enabled the parents of young people who were recently admitted to the PICU to share their stories and reflect on their individual experiences in Copyright © SLACK Incorporated

a safe and supportive environment. In addition, the EPEP offered the parents education and guidance. The EPEP pre- and postevaluations reported that families of young people experiencing admission to the PICU require greater support. Attention to how RNs working in the PICU develop and nurture family–provider partnerships at the point of admission is also critical. Mental health service delivery must gain a greater understanding of the lived experiences of families of young people experiencing admission to the PICU to better inform their admission practices, their communication styles, and their ability to provide holistic care within a recovery framework. REFERENCES Anthony, W.A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16(4), 11-23. doi:10.1037/h0095655 Australasian Health Infrastructure Alliance. (2010). Australasian health facility guidelines: Part B - Health facility briefing and planning. Sydney, Australia: Author. Retrieved from http://www.healthfacilityguidelines.com.au/ AusHFG_Documents/Guidelines/[B-0137]%20 Mental%20Health%20Intensive%20Care%20 Unit.pdf Bamm, E.L., & Rosenbaum, P. (2008). Familycentered theory: Origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89, 1618-1624. doi:10.1016/j. apmr.2007.12.034 Bertram, G., & Stickley, T. (2005). Mental health nurses, promoters of inclusion or perpetuators of exclusion? Journal of Psychiatric and Mental Health Nursing, 12, 387-395. Bowers, L., Jeffery, D., Bilgin, H., Jarrett, M., Simpson, A., & Jones, J. (2008). Psychiatric intensive care units: A literature review. International Journal of Social Psychiatry, 54, 56-68. Bowers, L., Simpson, A., Alexander, J., Hackney, D., Nijman, H., Grange, A., & Warren, J. (2005). The nature and purpose of acute psychiatric wards: The Tompkins acute ward study. Journal of Mental Health, 14, 625-635. doi:10.1080/09638230500389105 Brown, P., Calnan, M., Scrivener, A., & Szmukler, G. (2009). Trust in mental health services: A neglected concept. Journal of Mental Health, 18, 449-458. Cleary, M., Hunt, G.E., & Walter, G. (2010). Seclusion and its context in acute inpatient psychiatric care. Journal of Medical Ethics, 36, 459-462. doi:10.1136/jme.2010.035402 Commonwealth of Australia. (2009). Fourth national mental health plan: An agenda for collaborative government action in mental health 2009–2014.

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question of validity. Nursing Ethics, 14, 535-545. Purcell, R., Goldstone, S., Moran, J., Albiston, D., Edwards, J., Pennell, K., & McGorry, P. (2011). Toward a twenty-first century approach to youth mental health care—Some Australian initiatives. International Journal of Mental Health, 40, 72-87. Queensland Government. (2000). Mental Health Act 2000. Retrieved from https://apps.legislation.qld. gov.au/Search/isysquery/77e1e8dc-d839-43d5aa68-6672a992528e/2/doc/MentalHealthA00. pdf#xml=https://www.legislation.qld.gov.au/ Search/isysquery/77e1e8dc-d839-43d5-aa686672a992528e/2/hilite Queensland Health. (2005). Sharing responsibility for recovery: Creating and sustaining recovery oriented systems of care for mental health. Brisbane, Australia: Queensland Government. Retrieved from http://www.health.qld.gov.au/mentalhealth/ docs/Recovery_Paper_2005.pdf Roy, L., Rousseau, J., Fortier, P., & Mottard, J.-P. (2009). Perception of community functioning in young adults with recent-onset psychosis: Implications for practice. British Journal of Occupational Therapy, 72, 424-433. Royal Australian and New Zealand College of Psychiatrists Clinical Practice Guidelines Team for the Treatment of Schizophrenia and Related Disorders. (2005). Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of schizophrenia and related disorders. Australian and New Zealand Journal of Psychiatry, 39, 1-30. Sailas, E., & Wahlbeck, K. (2005). Restraint and seclusion in psychiatric inpatient wards. Current Opinion in Psychiatry, 18, 555-559. Wilkinson, C., & McAndrew, S. (2008). ‘I’m not an outsider, I’m his mother!’ A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings. International Journal of Mental Health Nursing, 17, 392-401. doi:10.1111/ j.1447-0349.2008.00574.x Yung, A.R., Killackey, E., Hetrick, S.E., Parker, A.G., Schultze-Lutter, F., Klosterkoetter, J.,…Mcgorry, P.D. (2007). The prevention of schizophrenia. International Review of Psychiatry, 19, 633-646. Dr. Ward is Senior Lecturer in Mental Health Nursing, School of Nursing & Midwifery, La Trobe University, Melbourne, Victoria; and Dr. Gwinner is Senior Research Assistant, Children and Youth Research Centre, Queensland University of Technology, Queensland, Australia. The authors have disclosed no potential conflicts of interest, financial or otherwise. Address correspondence to Louise Ward, PhD, MNurs, BNHon, BN, Senior Lecturer in Mental Health Nursing, School of Nursing & Midwifery, La Trobe University, George Singer Building, Melbourne, Victoria 3086, Australia; e-mail: [email protected]. Received: September 16, 2013 Accepted: January 30, 2014 Posted: March 31, 2014 doi:10.3928/02793695-20140324-02

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