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Children of Parents with Cancer: A Collaborative Project Between a Child Psychiatry Clinic and an Adult Oncology Clinic Florence Schmitt, Hanna Manninen, Päivi Santalahti, Elina Savonlahti, Seppo Pyrhönen, Georg Romer and Jorma Piha Clinical Child Psychology and Psychiatry 2007; 12; 421 DOI: 10.1177/1359104507078475 The online version of this article can be found at: http://ccp.sagepub.com/cgi/content/abstract/12/3/421

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Children of Parents with Cancer: A Collaborative Project Between a Child Psychiatry Clinic and an Adult Oncology Clinic FLORENCE SCHMITT, HANNA MANNINEN, PÄIVI SANTALAHTI, ELINA SAVONLAHTI, & SEPPO PYRHÖNEN Turku University Hospital, Finland

GEORG ROMER University Hospital Hamburg-Eppendorf, Germany

JORMA PIHA University of Turku and University of Jyväskylä, Finland

A B S T R AC T This article describes the development of a collaborative relationship between a child psychiatry clinic and an adult oncology clinic within a university hospital. The interest of the child psychiatry clinic was to pay attention to children of parents with cancer, and to propose an intervention to support them. A child-centred family counselling model was designed for this purpose. The preparation, implementation, and results of this project are described. Positive results, as well as mistakes and failures are discussed, and recommendations are made regarding this kind of collaboration. K E Y WO R D S cancer, children of parents with cancer, counselling

treatment of cancer has dramatically improved the rate of survival, and as more patients survive the disease, the importance of studying the impact of cancer on the family and the mental health of family members become obvious. According to Rauch and Muriel (2004), almost 25% of cancer patients in the United States have under-age children at home, and 1 in 1000 pregnant women is diagnosed with cancer (Antonelli, Dotters, Katz, & Kuller, 1996). Unfortunately, such data for Europe have not been collected. Our knowledge about the mental health and coping systems of children of parents with cancer (Romer, Barkmann, Schulte-Markwort, Götz, & Riedesser, 2002) has grown,

PROGRESS IN THE

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CLINICAL CHILD PSYCHOLOGY AND PSYCHIATRY 12(3)

and several studies have been conducted in this area (Compas et al., 1994; Compas, Worsham, Ey, & Howell,1996; Hoke, 2001; Huizinga et al., 2005; Huizinga,Van der Graaf, Visser, Dijkstra, & Hoekstra-Weebers, 2003; Visser, Huizinga, Van der Graaf, Hoekstra, & Hoekstra-Weebers, 2004; Visser, Huizinga, Hoekstra, Van der Graaf, & HoekstraWeebers, 2006; Watson et al., 2006). Although the results of these studies are to some extent contradictory, authors agree that children are in need of support when confronted with severe parental illness. Additionally, they advocate unanimously for family-centred psychosocial support, especially when parental cancer is associated with depression in the ill or healthy parent, or with single parenthood. Altschuler and Dale (1999) explored how severely ill parents cope with being a parent and a patient at the same time. They found that parents often doubted their competence to meet their children’s needs, or were afraid that the illness would affect family discipline, and expectations of achievement in school. In their study, it was found that parents wished to hide their distress from their children and felt ashamed when they failed to do so. Some parents had fears about damaging their children, and found it difficult to balance the need to care for children and the need to be cared for as an ill patient.

AC K N OW L E D G E M E N T S :

This study is part of an international multisite research project, which was supported by a grant from the European Union in its 5th Framework Program, ‘Quality of Life’ (QLGT-2001–02378) – ‘Mental Health Prevention in a Target Group at Risk: Children of Somatically Ill Parents (COSIP)’. The project was co-ordinated by George Romer, Hamburg University.

F L O R E N C E S C H M I T T , M A is an experienced Family Therapist and a Psychoanalytic Psychotherapist for adults. She is also trained in parent–infant psychotherapy. Since 2002 she has been involved in the COSIP project as a clinician and as a researcher at the University of Turku, and the Child Psychiatric Clinic of Turku University Hospital. C O N TA C T :

Florence Schmitt, Child Psychiatry Clinic, University Hospital PL 52 FIN-20521 Turku, Finland. [E-mail: [email protected]]

H A N N A M A N N I N E N, M D

is a Child Psychiatrist and a Family Therapist at the Child Psychiatric Clinic of Turku University Hospital.

P Ä I V I S A N TA L A H T I , M D P H D

is a Child Psychiatrist and a Family Therapist who has published scientific articles on child psychiatric epidemiology, on pregnant women’s experiences, and on decision making in prenatal screening.

E L I N A S AV O N L A H T I , M D

is a Child Psychiatrist and an experienced Family Therapist. She is also a trainer in parent–infant psychotherapy. Currently she is a researcher at the University of Turku, and working in private practice.

S E P P O P Y R H Ö N E N , M D P H D is a Professor in Oncology and Radiotherapy at the University and University Hospital of Turku. GEORG ROMER, MD

is a Child Psychiatrist and a Family Therapist in the Department of Child and Adolescent Psychiatry and Psychotherapy, University Hospital HamburgEppendorf, Germany.

JORMA PIHA, MD PHD

is a Professor in Child Psychiatry at the Child Psychiatry Clinic, University and University Hospital of Turku. He is also an Associate Professor in Family Therapy at the Department of Psychology, University of Jyväskylä, Finland. 422 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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SCHMITT ET AL.: CHILDREN OF CANCER PATIENTS

Finally, the authors emphasized that severe illness may activate previous trauma in the parent, and thus overwhelm the capacity to cope at the same time with illness-related and parenting-related demands. The need for parental support when a child has cancer is well documented in a wide range of variously designed studies (Kazak et al., 1997; Sloper, 2000; Streisand, Braniecki, Tercyak, & Kazak, 2001; Van Dongen-Melman, Van Zuuren, & Verhulst, 1998; Young, Dixon-Woods, Findlay, & Heney, 2002), while the need to support the children of cancer patients has been almost understated. However, this issue has gained some relevance. A few studies have focused on supporting the children of cancer patients (Greening, 1992; Heiney & Lesesne, 1996; Lewandowski, 1996; Lewis, Casey, Brandt, Shands, & Zahlis, 2006). Lewandowski (1996) emphasized primary and secondary prevention in the primary care setting. She saw the nurse’s role as an educator, who broaches the subject of parental illness, and challenges the assumptions that children do not notice their parent’s illness. She also saw the nurse as a screener for specific stressors in families affected by parental illness. Other ways to intervene included: (a) Assisting parents in thinking through what information to give their children, and how and where to give it; (b) supporting parents’ parenting; (c) enhancing communication between family members; and (d) being a facilitator and ‘interpreter’ between the systems involved with the family (school, health care, hospital, social welfare services). She saw the paediatric nurse working in the primary care setting as being in a key position to identify and help children dealing with parental illness. The ‘Bear Essentials’ programme by Greening (1992) aimed to help families to understand how children perceive illness, separation, and loss, to discuss the concerns of family members in an emotionally supportive environment, and finally, to develop strategies to cope with emotional difficulties linked with parental illness. In this programme, children and parents met separately in concurrent monthly support groups led by a team including a social worker, nurses and a chaplain. The groups met eight times, and had a theme for each meeting, including visiting the hospital, and explaining the medical equipment by giving the children the opportunity to experiment with it on a large teddy bear, who served as the patient. The ‘Quest’ programme, by Heiney and Lesesne (1996) was designed to support children and adolescents whose parent or grandparent has cancer. After an initial parent interview, the children were allocated into age groups, and participated in one 3-hour meeting including a dinner, a lecture and a tour of the different units of the cancer clinic (radiotherapy, laboratory, pharmacy, patient room) followed by a group discussion, and an evaluation. The ‘Bear Essentials’ and ‘Quest’ programmes have been carried out in the United States with a psychoeducational perspective, but the theoretical framework remained unspecified. Moreover, in the USA Rauch and Muriel (2004) described a parent guidance programme in a general hospital to provide expert consultation for adults with cancer and their families. Two child psychiatrists and two child psychologists provide consultation on the needs of children in families in which a parent has cancer. The families can be referred by any member of the cancer treatment team, and they are seen without assigning a psychiatric diagnosis. The focus of the consultation is to support parental competency, and children may be seen in individual or family sessions. Some families need only one to three sessions, while others require weekly sessions for several months. Children with preexisting psychiatric problems or in need of more intensive treatment are referred to child psychiatry clinics. In addition, the staff are available to the parent and children surviving the loss of the other parent for some periodic consultations. Finally, in their recommendations for oncologists, Rauch and Muriel emphasized: (a) updating 423 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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the knowledge about children’s normal development; (b) supporting families to maintain children’s normal life routines, and allowing children to visit the sick parent; (c) protecting family time; and (d) enhancing communication within the family by promoting clear, appropriate and honest information. The guidelines for clinicians working with parents with cancer are comprehensive, and include recommendations about children, families, parents, social support, and communication (Rauch, Muriel, & Cassem, 2003). The Enhancing Connection Program by Lewis and colleagues has been developed in the United States to reduce cancer-related distress and morbidity in children of cancer patients. The programme includes five, 1-hour educational counselling sessions delivered at 2-week intervals by trained clinicians. This intervention was found to be helpful both for ill mothers, whose mood became less depressed and whose self-confidence to assist the child improved, and for their children, who were found to present less anxiety and behavioural problems (Lewis et al., 2006). In Europe, Altschuler and Dale (1999) recommended that professionals should pay more attention to the fact that their patients are also parents. They suggested verbal or written guidelines, and a parent’s room on adult wards, but, above all, they called upon a change in mentality; being a parent deeply affects the individual, and the role of being a parent cannot be suspended by severe illness. However, no intervention was found in Europe to address the need for support of cancer patient’s children. In 2002, an EU-funded research project, Mental Health Prevention in a Target Group at Risk: Children of Somatically Ill Parents (COSIP), was initiated in eight European cities: Athens (Greece), Basel (Switzerland), Bucharest (Romania), Hamburg (Germany), Sutton (UK), Århus (Denmark), and Turku, (Finland). Besides conducting research on this issue, the European Union requested the provision of preventive services for children of somatically ill patients. The Finnish team of the Child Psychiatry Clinic started to collaborate with the adult oncology clinic within the same University Hospital. Thus, this article describes: (a) a model of counselling for children and families of cancer patients; (b) the process of implementation of the counselling; and (c) the process of collaboration between the two clinics. The feasibility of the counselling, and the participation rate are described and discussed. Mistakes and failures are examined, and recommendations are given for further projects.

Procedure and methods: Preparation phase Context, profile of both partners and preparation The COSIP project was carried out in the region of the Hospital District of South-West Finland with 450,000 inhabitants in an area of 17,187 km2, which means a density of 26.2 inhabitants/km2. The Turku University Hospital is the largest hospital in this area. In Finland, the health care system is publicly funded, and the private sector has a complementary role, being supported by the public insurance system. Economic factors are not a reason for being left without treatment for any severe disease. The Child Psychiatry Clinic at Turku University Hospital has five senior child psychiatrists, three residents, one psychologist, and 25 nurses. Four teams (including a general child psychiatry team, a neuropsychiatry team, an acute treatment team, and an infant child psychiatry team) and an inpatient ward for eight children, treat about 700 individual patients annually. Additionally, all teams carry out forensic psychiatric examinations. Occasionally, project workers are also involved in the clinical work of the clinic. The average number of outpatient visits is around 4 per patient. The other partner in the project was the oncology clinic of the same hospital. The oncology clinic staff includes 12 senior oncologists, 10 residents and 4 physicians, about 424 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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70 nurses and 25 radiotherapy technicians. At the end of 2003, the oncology clinic moved into a newly built hospital building. The department receives about 1300 new referrals annually (excluding gynaecological and haematological cases which are treated in other clinics). Psychosocial support is not routinely given, but some liaison work is carried out within the Adult Psychiatry Clinic. An important feature in the Finnish cultural context is transparency. The physicians in charge always tell the patients appropriately and respectfully about their diagnosis. If the patients wish, the spouse or/and adult children are present when the news is communicated. Important issues concerning family life are also told to the children. Usually, the patients disclose their illness to their relatives, friends and colleagues. The co-operation between the clinics (oncology and child psychiatry) was established at the beginning of 2002. The project was planned for 2 years from 1 May, 2002 to 30 April, 2004 and was approved by the Joint Ethical Commission of the University and the University Hospital of Turku. The key elements in the preparation were: (a) Reviewing the literature and specifying the counselling to be provided; (b) informing and preparing the staff of the oncology clinic on the issue of children of cancer patients; (c) elaborating a procedure for offering the counselling; and (d) elaborating the procedure for estimating the use of the service.

The model of counselling On the basis of the earlier literature, and our clinical experience as child psychiatrists and family therapists working with children and families, the Turku Model was designed to be child centred. Two theoretical moves were made: (a) a move from the individual approach to the family approach, and (b) a move from the patient perspective to the parent perspective, that is, the cancer patients were seen primarily as parents. We wanted to provide time and space for each family member individually, for them together as a couple or siblings, and for them all together as a family. We wanted to respect the needs, the rhythm and the developmental stage of the family members and, primarily, support parenthood and parenting. The main goals of the counselling model were defined as follows: 1. Establishing a strong therapeutic working alliance with all family members by expressing genuine empathy. 2. Supporting parenthood and parenting by alleviating parents’ concern about the children, and children’s worries about their parents. This was mainly achieved by providing parents, children and the whole family with space and time to elaborate on their experience with cancer: How it felt to be informed about the diagnosis, how it felt to have to deal with the ‘bad news’, how every family member was able to cope during the time of the treatment, and finally, how it was when the treatment ended. 3. Helping parents to be aware of the feelings and needs of their children by emphasizing the uniqueness of the experience of each family member, and by validating the children’s feelings and thoughts. Parents may have difficulty understanding their children’s reactions and the therapist acts as an interpreter. Validating children’s feelings and thoughts means listening to the children and the parents very intensively and respectfully, so that they are nurtured by the experience that there is nothing wrong in feeling, and expressing feelings, the way they are doing. 4. Reducing feelings of guilt and promoting hope by facilitating communication among family members. 5. Assessing the need of family members for more help in case of psychological distress (if the counselling intervention was insufficient). 425 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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6. In the case of a terminal prognosis, accompanying the family members in their process through loss and grief. Technically, the counselling model consisted of five/six different sessions including one/two family sessions, one/two couple sessions, one sibling session, and an individual session for each child. Additionally, one follow-up session was scheduled if the family wished it, or if the therapists wanted to check how the situation was developing. Families were able to choose how (with the whole family or with a couple session), and when they wanted to start. Each session took about 50–60 minutes and was conducted by two experienced family therapists, with special competences to work with children (one therapist had experience in somatic treatment of cancer patients and one was a specialist in child psychiatry). The counselling sessions took place in a cosy, friendly room, especially equipped for working with children, with a doll’s house, toys, drawing paper and pencils. However, if the cancer patient’s situation required it, the counselling sessions could take place at the parent’s bedside. Clinical supervision for the therapists was provided twice a month.

Procedure for proposing counselling From the beginning of 2002 until we started the project, information meetings, lectures and presentations of the project were systematically given to the staff of the oncology clinic, and brochures were printed. A procedure for informing the patients about the possibility of receiving counselling for their children was established. Because the project was experimental, the Ethical Committee required several conditions to be met, including asking permission from participants at various stages of the project. The counselling was offered to all successive new or relapsed cancer patients who had at least one child living with them. During their first visit to the oncology clinic, patients were asked for written permission to be contacted personally by the project family therapist, and a brochure describing the counselling was distributed. Written informed consent was required from parents and children who participated in the counselling. In addition, the sessions were briefly summarized in the hospital files of the cancer patient, and an ICD-10 diagnosis Z71.8 ‘Other specified counselling’ was used.

Methods for assessing the use of service In order to assess the use of the service, data were collected on patients: (a) Information on diagnosis, gender, age and occupation was gathered for those patients who refused to be contacted by the therapist; and (b) for those who gave contact permission, more background information (diagnosis, age and socioeconomic status of patient, family structure, gender and age of children) was gathered using a questionnaire. Additionally, data on those patients who did not want counselling were gathered during the phone interviews. Phone interviews were documented in memos. Finally, the steps of the implementation process were documented in project memos. Quantitative data on all patients (age, occupational status, family structure, children’s age and gender, diagnoses), on patients who participated in counselling, and on patients who did not participate were stored and analysed with SPSS for Windows 12.0.1. Descriptive statistics were used to describe the participants and their characteristics, the quantitative aspect of the counselling. The statistical significance of differences between variables in the groups of all patients, the group of patients who participated in counselling and the group of patients who did not participate was examined. Group background variables such as gender, diagnosis and occupation were compared using the Pearson chi-square, and age was compared using ANOVA variance analysis. 426 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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In order to explore the level of connectedness with and attitudes to the project among the staff of the oncology clinic, a one-page questionnaire was distributed (N = 148). Background information was collected about gender, age, profession, experience in profession, and experience working in the oncology clinic. The following questions and statements were posed: 1. 2. 3. 4. 5. 6.

Have you taken part in any information meeting about the project? (Yes/no); Have you been personally in touch with the project family therapist? (Yes/no); Have patients told you about counselling? (Yes/no); I have advised patients to agree to the counselling (Yes/no) ; Patients benefit from counselling (Yes/no/do not know); The children of my patients are more in my mind (More than before/the same as before/less then before/do not know); 7. If you have had any contact with the therapists how would you characterize it? To evaluate the connectedness with the project, the answers to questions 1–3 were pooled. In a similar way, the responses to statements 4–7 were combined to describe the attitude toward the project. Descriptive analysis was used to examine the variables of the questionnaire, and cross-tabulations were used to examine associations between variables.

Results: Implementation phase The implementation process Before the beginning of the project, no psychosocial support for the cancer patients, or for their children was given in the oncology clinic, and co-operation with the child psychiatry clinic was nonexistent. Numerous (17) visits were made to the oncology clinic to provide information about and prepare for the implementation of counselling. The identification of patients with children was laborious. No information on cancer patients’ families was available. The oncology clinic did not even know if their patients had children or not. To find the patients with children and reach them, the first author visited the different units (out-patient clinic, radiotherapy unit and three wards) of the oncology clinic three times a week from May 2002 to February 2003. From February 2003 until the end of the project a nurse working at the oncology clinic was employed part time to help with a systematic checking of new patients with children. During spring 2003, the oncology clinic amended the questionnaire given to each new patient starting his/her treatment. Questions concerning spouse and children were added, and through this simple procedure, the staff got a clear picture of the family situation of their patients. Three years later, when writing this report, the staff in the oncology clinic reported their satisfaction with having this information on families because the patients feel now they are given permission to speak about their families.

Two years of presence in the oncology clinic As a result of the family therapists’ regular and frequent visits to the oncology clinic, some physicians and nurses started to anticipate their visits to ask for advice or consultation in the case of psychologically challenging or problematic situations, even with patients who had no children or grown-up children. These patients were often in terminal care, or they were cases in which communication problems had arisen between the staff and the patient and latter’s family members. The survey among the staff in the oncology clinic showed that 109 (74%) staff members responded to the questionnaire circulated at the end of the counselling project: 427 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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8 physicians (44% of all physicians), 81 nurses (78% of all nurses), 20 auxiliary staff members (76% of all auxiliary staff members). On average, they had 16.5 years (SD = 10.6) of experience in the profession, and had been employed in the oncology clinic about 13.3 years (SD = 9.9). Forty-six (43%) staff members participated in at least one information session concerning the counselling project, and 56 (52%) had made personal contact with the family therapists working in the project. Thirty-nine (36%) respondents had referred patient(s) to counselling, and 34 (32%) said that patients had given some positive feedback about counselling. Negative feedback has not been reported. Fiftythree (49%) of the staff members were of the opinion that patients benefited from the counselling, while the other half was unable to make an evaluation. Forty-two (39%) staff members considered that they are now more aware of the children of the patients than before, while 57 (53%) answered that they thought about the children of their patients as much as before. Seven respondents could not say, and one expressed less awareness of the children of the patients than before. About 30 (28%) staff members had had no contacts with the counselling project. Most of the staff members who had no contacts or had not referred patients, were radiotherapists or they were working in the radiotherapy unit. The staff members of the clinic were slightly younger (43.4 years, SD = 10.3) than the patients in counselling. Personal contacts (informal discussion, coffee breaks) with the therapists were described as an experience of being nurtured, and were beneficial for the professional life as well as for personal life. Finally, long-term preexisting ideas in the oncology clinic about providing psychosocial support for the patients were strengthened. On the request of the oncology clinic a series of training seminars on psychosocial issues (five seminars, each lasting 4 hours) was provided by the first author for the whole oncology staff (12 physicians, 105 nurses) during Autumn 2004. During 2005, financial and staffing resources were explored in order to set up a psychosocial team on a regular basis. In 2006, these activities started. A multi-disciplinary psychosocial team, including some of the oncology clinic’s oncologists and nurses, the physiotherapist, the social worker and the chaplain, meets on a regular base once a month. The first author, from the child psychiatry clinic, has been invited to be a permanent member of this team. During these meetings, a specific question is discussed after a short presentation, and a case is considered. Presently, the first author is able to devote only 5 hours a week to clinical work, which means giving priority to patients in palliative care with small children. The aim is to expand the activities (with a full-time psychotherapist) when more resources are available. From the child psychiatry clinic perspective, the consequences were: (a) The Child Psychiatry Clinic staff participated in the same training seminars as the staff of the oncology clinic; (b) our knowledge of cancer patient, their children and families increased tremendously, and clinical consultations could be provided for colleagues in the whole country; (c) the knowledge was disseminated to professionals as well as to the public.

Participation in counselling During the 2-year project, 2063 new patients were admitted to the oncology clinic, of whom 134 (6.5%) were found to have children under 18 years. Fourteen patients (10%) did not want any information about the counselling (Table 1). This group consisted of 7 women and 7 men (mean age 45.8 years) who had 19 children between 4 and 17 years of age (mean age 12.7 years). With regard to diagnosis, gender, age and occupation, this group did not differ significantly from the patients who gave permission to be contacted by the family therapist. Altogether 120 patients gave permission to be contacted personally, of whom 83 (69%) did not want to participate in the counselling. However, 48 of them provided 428 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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Table 1. Reasons for nonparticipation in the counselling (48 patients) Reasons told in phone interview

n

%

Accumulation of at least three obstacles (travelling difficulties, distance, exhaustion, small children, economic problems) Husband or child(ren) against participation Patient too exhausted due to the treatment Family living too far away (more than 60 kms) No need for psychological support Patient already in psychiatric care Patient not willing to disclose any reason Contact not established Total

11

23

11 4 3 2 2 7 8 48

23 8 6 4 4 15 17 100

background information and agreed to be interviewed by phone on their reasons for not wanting counselling. These 48 patients (31 mothers, 17 fathers) had 39 healthy spouses (25 husbands, 14 wives) and 74 children (34 girls, 40 boys). The main reason (11 cases, 23%) was the accumulation of at least three obstacles such as travelling difficulties, exhaustion, small children (Table 1). The resistance of the spouse or child(ren) was the reason in 11 cases. Two patients said they were not in need of psychological support and 2 patients already were in psychiatric care. Altogether 37 patients (31% of contacted patients, 32 mothers, 5 fathers) and 22 healthy spouses (17 husbands, 5 wives) and 69 children (39 girls, 30 boys) were seen in counselling. Comparing the 37 counselled families and the 48 families refusing counselling, the parents in the counselled group were significantly older (45.8 years, SD = 6.7, vs. 40.9 years, SD = 5.8, p < 0.0001), and in the counselled group there were significantly more single parents (32% vs. 2%, p < 0.0001). There were many reconstituted families (29%) among those who did not participate in counselling. There were no significant differences between the groups in gender or cancer type of the patient, socioeconomic status of the parents, or gender and age of the children (Tables 2 and 3). The oncology staff referred to counselling 5 more patients who had been their patients for a long time (2 ill fathers, 3 ill mothers with 5 spouses and 4 daughters and 3 sons). Additionally, 4 more families (3 ill fathers, 1 ill mother with 4 spouses and 4 daughters and 5 sons) heard about the project from elsewhere, and wanted counselling. These 9 families were given counselling, but were not included in this report, because they did not fill in the background questionnaire. The ill parent was going to die and the children were very small. If we include these 9 families in the group of counselled families, the total number of families is 45. During the 2 years, 239 counselling sessions were given. In addition, 21 follow-up family sessions were provided. Half of the families (two-parent and single-parent families) chose to start the counselling with a whole family session. About a third of the sessions were family sessions (n = 75) and a third were individual adult sessions for the ill parent (n = 81), while couple sessions were provided 34 times. Individual sessions for adults are explained by the rate of single parents in the counselled group. Sibling sessions accounted for 8% (n = 20), and child individual sessions 12% (n = 29). Individual sessions for children were not wanted in 6 families. About 50 different sessions were provided for the 9 families, who were not included in the report. The most usual time to start the counselling was around 3 months after the diagnosis (11 out of 37 families), while 30 families (81%) started between 1 to 7 months (range = 1–19 months) after diagnosis. Twenty-one patients out of 37 considered the timing of 429 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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Table 2. Background characteristics of cancer patients and their spouses Counselled group n = 37 ————————————— Cancer patient Healthy spouse n = 37 n = 22 —————— —————— n % n %

Noncounselled group n = 48 ————————————— Cancer patient Healthy spouse n = 48 n = 39 —————— —————— n % n % p-value

Gender Female Male

32 5

86 14

31 17

65 35

Type of cancer Breast Other

22 15

59 41

22 26

46 54

Socioeconomic status High Medium Low Data missing

6 23 7 1

16 62 19 3

6 22 16 4

13 46 33 8

Family structure Nuclear Recomposed Single

23 2 12

62 0.5 32

33 14 1

69 29 2

Mean age, years (SD)

45.2 (6.9)

0.233 5 17

23 77

14 25

36 64

8 13 14 4

21 33 36 10

0.572 4 7 10 1

18 32 45 5

< 0.0001

45.6 (6.8)

41.4 (5.7)

40.0 (6.0)

< 0.0001

Table 3. Background characteristics of children (4–17 years) of cancer patients Children seen in counselling n = 69 ——————— n %

Children not seen in counselling n = 74 ——————– n % p-value

39 30

57 43

34 40

46 54

School status Day care 14 Elementary school (children 7–13 years) 30 Secondary school (children 13–15 years) 16 College or professional school (children 16–19 years) 6 Data missing 3

20 43 23 9 4

14 33 18 8 1

19 45 24 11 1

Gender Girl Boy

0.206

Mean age, years (SD)

0.849

10.7 (3.9)

10.6 (3.8)

0.925

counselling to be right. One patient felt that the support came too late because information about counselling was given when the treatment was already over. Two patients would have liked to have had some counselling just after they were told the diagnosis. The remaining 13 patients had no preferences for the timing of the intervention. Twenty-eight patients out of 37 expressed the wish (6 in the last counselling session and 21 in the follow-up session) that at least one whole family counselling session should 430 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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be included in the treatment regime of each new cancer patient with children; the family session should be scheduled by the physician in charge of the patient. Two healthy fathers stated they felt they were wasting time and money by participating in the counselling; both of them were entrepreneurs. However, one of them asked for further sessions after his wife’s death, and altogether nine family sessions with him and his children were conducted.

Discussion This article describes the development of a collaborative relationship between a child psychiatry clinic and an adult oncology clinic within a university hospital. A childcentred family counselling for adult cancer patients and its implementation are reported.

The collaboration process The collaboration between the clinics of oncology and child psychiatry was considerate and friendly despite the earlier limited co-operation. The two clinics are located in different hospital buildings but the psychological gap to be crossed between the functional cultures in the clinics was perhaps wider. In the oncology clinic, the approach is more illness centred, focusing on fighting the cancer and defeating it, while child psychiatry is used to evaluate the symptoms and disorders in the context of development and family. The regular attendance of project family therapists in the oncology clinic seemed to be important to facilitate new working methods in clinical practice. The presence of family therapists helped the oncology staff members to take cognizance of the psychosocial problems of the family in their patients. However, the identification of patients with children was laborious and, in this regard, amending the questionnaire concerning basic information on new cancer patients was a meaningful procedure. It was a step towards family-oriented and child-centred treatment. An important mistake, due to lack of experience and time, was that we should have asked somebody from the oncology clinic to be more involved from the beginning. However, this participation was included as soon as it was possible. Results from the questionnaire given to the oncology clinic’s staff show that despite the efforts to provide information, to share experiences, and to give personal time to the staff members, only 52% had a personal contact with the therapists. The duration of the project was 2 years. During this time, a lot of changes occurred in the oncology clinic. The clinic moved into a new building and new research activities began. In addition, the continual rotations and changes among doctors and nurses created a situation in which information and keeping the project alive in the mind of the people should have been a more active part of the implementation process. Among the staff, 39% thought about the children of cancer patients more than before, and 36% referred patients to counselling, while 49% thought that counselling was helpful. This indicates that some imprint was left. However, being more aware of cancer patients’ families and children might complicate the work of doctors and nurses and be a burden to them, because, at the same time, no extra resources are made available to help them in an appropriate way.

The counselling model The cancer patients with under-age children, who were reached within the timescale of this project, represented about 10% of all treated patients in Turku University Hospital. According to Rauch and Muriel (2004), almost one-quarter of all cancer patients in the United States are estimated to have under-age children at home. Furthermore, these patients with children at home have special problems and specific needs, which should 431 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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be considered. Cancer in a parent affects the family (Edwards & Clarke, 2003; Kissane et al. 1994), child mental health (Compas et al., 1996; Helseth & Ulfsaet, 2003; Huizinga et al., 2003, 2005; Visser et al., 2004, 2006) and partner relationships (Kaye & Gracely, 1993; Kuijer, Bunk, De Jong, Ybema, & Sanderman, 2004; Northouse, Templin, Mood, & Oberst, 1998). In addition, the illness threatens the unity of the family, at least in the minds of the family members. For a comprehensive treatment plan for the cancer patient, taking quality of life into consideration, the physician in charge needs to know the family structure of the patient. According to the literature in the field of psychosocial support for cancer patients, family-oriented support is uncommon (Newell, Sanson-Fisher, & Savolainen, 2002). The Turku Model of counselling was designed to be family oriented and child centred; it aimed to be helpful for all family members, but especially for children. It was not designed to be psycho-educational like the interventions described in the Introduction, although some elements of education are perceptible, as when a child asked questions related to the location of the cancer or to the treatment. The spirit of the model was more to offer a safe space and empathic compassionate listening to families’ experiences. This form of counselling, combining family, parental couple, sibling and individual sessions, was flexible and feasible, easily adjustable to the specific needs of families. Flexibility and a respectful attitude are very important when working with cancer patients, whose treatment is demanding. According to Beardslee and McMillan (1993) a preventive intervention is meaningful for children whose parents are depressed. The literature underlines the psychological distress of the cancer patients (e.g. Ritterband & Spielberger, 2001). By proposing a family-oriented and child-centred approach to psychosocial counselling for cancer patients, the needs of each family member are validated. Additionally, Martire, Lustig, Schultz, Miller, and Helgenson (2004) showed that family interventions appear to have several benefits for the ill patients as well as for their families and that this approach is not associated with negative outcomes for either the patient or family members. However, looking at the intervention from a clinically oriented perspective is not in itself enough; the usefulness and efficiency of the intervention should be studied using an intervention study design. Owen, Klapow, Hicken, and Tucker’s (2001) review of outcomes in psycho-oncology interventions emphasized that although there is a substantial body of literature, it remains difficult to define what should be the focus of improvement. Should the focus of this kind of psychosocial intervention be the mental status or quality of life of the cancer patient, the wellbeing of the children and the prevention of mental health problems in the children, the quality of family life, the coping of the healthy spouse, or the functioning of the family?

The participation in counselling During the preparation phase of the project, it was expected that a large proportion of parents would want counselling, as was also expected by our collaborators in the oncology clinic. In fact, this was not the case. In the group of 120 cancer patients with children at home, 37 (30%) participated in the counselling, while most of the patients refused it. However, the phone interviews showed that one real obstacle to participation in counselling was the long distance. To illustrate this point, the catchment area of Turku University Hospital is more than half the area of the whole of Belgium. In a large country the services should be available closer to the domicile of the patients. The counselling was offered by the child psychiatry clinic, and perhaps the patients did not correctly understand the information, mixing the counselling with psychiatric treatment, or perhaps we did not give the information in the right way. Prejudices towards psychiatry, and the fears of possible stigmatization (illustrated in Table 1) make 432 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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it difficult to be perceived as support providers, and this may explain the poor participation in counselling. This situation supports the establishment of a psychosocial team within the oncology clinic, and the integration of child psychiatry as a discipline focusing on children’s mental health in the oncology clinic team. Furthermore, some families might legitimately baulk at what they see as an unwanted intrusion into their efforts to cope with a difficult situation, although others welcomed the counselling as a response to their needs. Ostroff, Ross, Steinglass, Ronis-Tobin, and Singh (2004) reported that despite their extensive recruitment efforts to address anticipated barriers to nonparticipation in a multiple family group intervention, only 15 of the 80 (19%) eligible families agreed to participate in their study. Studies should focus on clarifying the subgroups of patients who need psychological support. Furthermore, the timing of offering services should coincide with the time of seeking for help, and proposed help should meet the need of the help seekers. The proportion of single parents among cancer patients (15%) was the same as among Finnish families in 2003 (13%; Statistics Finland, 2004). However, single parents were very significantly overrepresented in the group of counselled families (32%) compared to families who refused the counselling (2%). One-third of the counselling sessions were adult individual sessions, and this is explained by the fact that for a single parent, a ‘couple session’ was in fact an individual session. Single parenthood is a risk both for the parent, who is often the mother, and for the children (Ringbäck, Haglund, & Rosen, 2000; Ringbäck, Hernj, Haglund, & Rosen, 2003). It might be that awareness of their own vulnerability caused the single mothers to seek counselling. In addition, women in the age group of our sample are overrepresented: This phenomenon is in line with the epidemiologic reality. Among males of age group 20–64 years, 4027 had cancer in 2002, which represents 33% of all male cancer patients in the 0–85 age bracket (N = 12,114). In the same age group 5246 females had cancer, which is 43% of all women diagnosed with cancer (N = 12,016). The incidence of breast cancer in this age group is 44, 5% (Finnish Cancer Registry, 2002–2003). In addition, 9 more families were seen in counselling but not included in the report because background data were not available. These 9 patients were in terminal care and going to die, or their children were less than 4 years old. At this point we made two mistakes: First, we were not well enough prepared for the fact that seeking counselling often occurred in the midst of an overwhelming situation for families, and, second, cancer patients might have very small children. These were also clinically challenging situations. The patients and family members who participated in the counselling were extremely positive, and they suggested that at least one family session should be included in the routine of every cancer patient seen in the oncology clinic. The families seen in counselling found it important to get psychological support in the cancer clinic itself. One should also remember that children should be informed in an age-appropriate way of their parents’ illnesses and their treatments (Kroll, Barnes, Jones, & Stein, 1998). Moreover, children need the help and support provided by parents or other adults to cope with the illness information. The authors agree with some caution to the suggestion of the cancer families seen in counselling that at least one family session should belong to the protocol of cancer treatment. This procedure could have several benefits. First, patients and family members in need of psychiatric consultation and/or social support could be easily identified. Söllner et al. (2001) showed how difficult it is for the oncologist to identify patient distress and need for psychosocial counselling. They argue that there is a need for screening instruments and for training oncologists in the detection of patients in need of psychosocial support. Given, Given, and Kozachik (2001) advocated a periodic 433 Downloaded from http://ccp.sagepub.com by Diana Elfida on November 30, 2007 © 2007 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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assessment of family members in order to identify specific sources of distress. In addition, they suggested assessment of the quality of family relationship and communication patterns as criteria for referrals of patients if warranted. However, an experienced and well trained psychotherapist can screen signs of psychic distress in adults as well as in children and, thus help them to get more useful help from mental health professionals. Second, the routine family counselling session lowers the threshold for asking for further help by providing a good experience of being understood. Finally, standard practice protects from fears of stigmatization, and as Trief and Schiller (2001) reported, ‘they chose to see all patients, rather than only those at risk, because it is hard to define “at risk” patients’ (p. 340). Those observations are also in line with Caplan’s (1970) recommendations and Worby, Altrocchi, Veach, and Crosby’s (1991) experiences with heart attack victims and their families. However, disadvantages should also be considered. Families are in special need of support, but also of protection from intrusive practices.

Conclusion In conclusion, we suggest some recommendations, when promoting this kind of collaboration. First, at the starting point more time and more knowledge about the target group should be available, and members of both partners in the collaboration should be involved. However, in our case, the oncology clinic’s members had no idea of the number of patients with children and of their age and they were very interested in learning more about this specific issue. Additionally, on a national and international level recording the number of children exposed to parental cancer is highly relevant since the prevalence of cancer is rising. Second, as child psychiatrists and psychotherapists, we have clear ideas about what counselling is, and how it works, and how it differs from psychotherapy or from psychiatric treatment, but for ordinary users and collaborators, these concepts might be quite confusing. More clarification should be provided for collaborators and users who are not familiar with our work, in order to give the right information. Finally, flexibility, respectfulness, nonintrusiveness, and availability cannot be emphasized enough. Additionally, psychotherapists working in a medical setting should be familiar with the hospital work, and should not be afraid of bodily issues; psychotherapy is often carried out at the ill patient’s bedside.

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