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Early Intervention in Psychiatry 2014; ••: ••–••
doi:10.1111/eip.12153
Original Article Participants’ perceived benefits of family intervention following a first episode of psychosis: a qualitative study Liv Nilsen,1 Jan C. Frich,2 Svein Friis,3,4 Irene Norheim5 and Jan Ivar Røssberg1,3 Abstract Aim: To explore the perceived benefits for patients and family members of psychoeducational family intervention following a first episode of psychosis.
understanding of the fact that the patient has an illness, and recognizing the need for support; (ii) recognizing warning signs requires an understanding of early signs of deterioration in the patient; (iii) improving communication skills is linked to new understanding and better communication both within the family and in groups; (iv) Learning to plan and solve problems requires the ability to solve problems in new ways; (v) becoming more independent requires patients to take responsibility for their own life.
Centre of Competence for Early Intervention in Psychosis and 4Research and Development Mental Health, Division of Mental Health and Addiction, Oslo University Hospital, 2Institute of Health and Society and 3Institute of Clinical Research and Medicine, University of Oslo, Oslo, and 5Division of Mental Health and Addiction, Vestre Viken Hospital Thrust, Lier, Norway
Methods: A qualitative exploratory study using data from interviews with 12 patients and 14 family members who participated in a psychoeducational multi- or single-family treatment programme. Semi-structured interviews were digitally recorded and transcribed verbatim with slight modifications, after which they were analysed by systematic text condensation.
Corresponding author: Mrs Liv Nilsen, Centre of Competence for Early Intervention in Psychosis, Division of Mental Health and Addiction, Fridtjof Nansens vei 12, NO-0369 Oslo, Norway. Email: [email protected]
Results: Patients and family members reported benefits that could be classified in five categories: (i) developing insight and acceptance requires
Received 18 December 2013; accepted 25 March 2014
Key words: early intervention, family work, psychosis, qualitative research.
1
INTRODUCTION Psychosocial family interventions are well established for patients with psychosis and for their family members, and have been shown to improve communication within the family, reduce perceived family burden, enhance cooperation with the mental health system, increase medication adherence and reduce risk of relapse.1 Family interventions have also been proven to encourage employment and enhance both social and family functioning.2–4 The McFarlane Psycho Education Multi Family Group (PEMFG) treatment model provides both patients and family members with information about the illness, guidelines for managing © 2014 Wiley Publishing Asia Pty Ltd
Conclusion: The study suggests that developing insight and acceptance, learning about warning signs, improving communications skills, learning to plan and solve problems, and becoming more independent are perceived as benefits of a psychoeducational family intervention.
the illness, problem-solving skills and the opportunity to interact with other families over a 2-year period.5,6 This approach is also recommended as single-family intervention. Few quantitative studies of psychosocial family interventions in first-episode psychosis (FEP) have been carried out, and the results are contradictory.7–11 Two studies showed positive outcome of family work,7,8 two studies showed negative outcome,9,10 and one study showed no difference in outcome.11 However, in a recently published systematic review, Addington and co-workers examined evidence-based treatment components in first-episode services. They concluded that multifamily group psychoeducation was one of only five 1
Family work and psychosis treatments that met evidence level A criterion and attained the highest level of agreement among more than 100 surveyed experts.12 To our knowledge, only three qualitative studies have explored FEP treatment in health services, and family involvement was one of the many elements examined.13–15 In an ethnographic study, Larsen found that FEP patients did not find intervention useful, but thought that family members benefitted by developing a more open and supportive relationship.13 Eisenstadt et al. explored subjective factors involved in the recovery process for FEP patients, and found that in addition to medication, interpersonal relationships were important for recovery. Patients reported that they gained insight when they shared experiences in the PEMFG. Group sessions also allowed them to share their experiences, and by identifying with each other they perceived that they gained insight into new ways of managing their symptoms.14 Sin et al. explored how to develop and implement family work in early intervention services, and found that carers participating in a PEMFG gained knowledge of problem-solving and communication skills, and were able to act as facilitators for establishing new groups.15 These three aforementioned studies have investigated subjective factors in the recovery process for the whole treatment package in early intervention services and initiatives to develop services for carers in FEP. None of these studies have explicitly explored the perceived benefits of the intervention on participants. In a previous paper, we explored how patients and family members experienced participation in psychoeducational family work. We found that group leaders need to recognize levels of anxiety and psychotic symptoms among patients before and during the intervention, and to consider the different needs of patients and family members regarding the format and initiation of the group intervention.16 A better understanding of what elements patients and family members find effective might help tailor family work to better meet the needs of patients and family members. Aim of the study This study aims to explore the perceived benefits of psychoeducational family intervention on family members and patients after a first episode of psychosis. METHODS We carried out a qualitative exploratory study based on in-depth interviews conducted in a natural 2
setting. The study was carried out at Centre of Competence for Early Intervention in Psychosis (TIPS), and is part of the Thematic Research area Psychosis (TOP study) at the University of Oslo and Oslo University Hospital.
Participants Patients with FEP and their family members who participated in psychoeducational multi- or singlefamily intervention in 2010 and 2011 were eligible for inclusion. A purposeful sample, aiming at diversity of age and gender, was recruited from three hospitals in Southeastern Norway. A total of 12 patients and 14 family members (parents/foster parents) participated and provided informed consent. One patient did not want parental participation, two patients wanted both parents to participate, and one patient preferred to be interviewed along with his mother and father due to his mother’s inadequate Norwegian language skills. Demographic data, as reported by the participants, were collected at the time of the interview (Table 1).
Data collection An interview guide was developed in cooperation with patients, family members and mental health providers who were familiar with the intervention. The guide covered different elements of the intervention, and was structured in themes: the alliance period, survival skills workshop and meetings. To ensure that all parts of the intervention were covered, we developed open-ended questions for each theme, such as ‘Could you describe how you felt when you first met the group leaders?’ and ‘Was there anything in this meeting that made you feel that this intervention might be good for you?’ The first author conducted in-depth interviews for 30–90 min between August 2011 and March 2012. The interviews were digitally recorded, and transcribed by the first author. The first author is a PEMFG leader with experience conducting and supervising the intervention with patients having various chronic psychotic disorders. Participants chose the location of the interviews, usually in their home. The interviews were transcribed verbatim with slight modifications.17
Ethical aspects The study was performed in accordance with the Declaration of Helsinki and approved by the © 2014 Wiley Publishing Asia Pty Ltd
L. Nilsen et al. TABLE 1. Participant characteristics Patients (N = 12)
Age Male Race/Ethnicity White/Caucasian Asian Education (years) 10 13 >13 Diagnosis Schizophrenia Schizoaffective Psychosis NOS Housing Living alone With parents/sheltered housing/hospitalized Occupation Work School/work/social security Social security only Multi-family group Single-family group Meetings All Less than half
n
%
12 5
Family members (N = 14)
Range
Mean
n
%
19–38
26.8
41
14 6
42
9 3
75 25
12 2
7 2 3
58 16 25
2 1 11
14 7 78
10 1 1
83 8 8
7 5
58 41
1 7 4 11 1
8 58 33 91 8
14
100
13 1
92 7
8 4
66 33
14
100
Range
Mean
42–65
56.0
Note: Data as described by the participants. NOS, not otherwise specified.
Regional Committee for Medical and Health Research Ethics for the Southeast Region of Norway (2011/566). Analysis Data were analysed according to the principles of systematic text condensation (STC),18 which is a descriptive and exploratory approach to thematic analysis of qualitative data. The analysis was conducted stepwise, and steps 2 and 3 were analysed using NVivo 9 software. 1 We read through the interviews to get an overall impression of the material, and to look for themes related to the opinion of patients and family members concerning the different elements of the intervention. We approached the data with an open mind, showing sensitivity to the views and experiences of participants, and established a list of codes for each theme. 2 Meaning units are fragments of text containing information about the research question/themes. We identified pieces of text (meaning units) that © 2014 Wiley Publishing Asia Pty Ltd
represented a certain theme, marked the text with a code and connected related meaning units into code groups. 3 We condensed the meaning of the text that had been identified under each coded group. We developed an analytic text about the phenomena we studied. We synthesized the content and developed descriptions and concepts. The first and last authors read through all interviews separately several times and identified meaning units, whereas the other authors joined them to define the final categories and their contents. Codes and meaning units were discussed among the authors until consensus was obtained. RESULTS Patients and family members reported benefits that could be classified into five categories (Table 2): (i) developing insight and acceptance requires understanding of the fact that the patient has an illness, and recognizing the need for support; (ii) recognizing warning signs requires an understanding of 3
Family work and psychosis TABLE 2. Participants’ views on effective elements of a psychoeducational intervention Meaning units Developing insight and acceptance
Recognizing warning signs
Improving communication skills
Learning to plan and solve problems
Becoming more independent
Examples of quotes from patients
Examples of quotes from family members
‘The group made me see that I was an ordinary human being despite of my illness.’ ‘The group made me believe in the future.’ ‘To realise that I have an illness is motivation to continue in the group.’ ‘I know them by heart.’ ‘I am able to tell my parents when I recognise my warning signs.’ ‘My body tries to tell me when to relax and now I know how to intervene before I get a relapse.’ ‘I became able to discuss problematic issues together with my family.’
‘To appreciate friendship, family and be able to stay well is more important.’ ‘If she thinks she is having a good life I am satisfied.’ ‘I have adjusted my expectations for the future.’ ‘Those signs are more easily discussed in the group than at home.’ ‘It is a balance between knowing and acting.’ ‘Everybody ought to learn enough to discover those signs and be able to intervene immediately.’ ‘Our communication skills improved and changed the climate within the family.’ ‘We are able to talk together in a different sort of way.’ ‘Advices about how to get out of bed, when to go to sleep at night made life easier for the whole family’ ‘The problem-solving model made us able to solve our daily hazels by small interventions like sending a text message while my son was taking the train.’ ‘The problem-solving model was like a recipe.’ ‘NN matured and understood that she had to do something by herself, not only sit and wait for help.’ ‘It has been a huge progress lately and I think it has something to do with time and her being able to handle her life in a more constructive manner.’
‘My family became able to make plans, which made my life more predictable and safe.’ ‘To be able to see possibilities rather than problems.’ ‘You might call it coping strategies when you are able to ask yourself: are you 100% sure what you are thinking is true and to be able to say no.’ ‘I had to be responsible for my own life in order to recover.’ ‘I had to decide how my life was going to be.’ ‘I managed to fill my life with meaningful activities’ ‘My illness made me grew up.’
early signs of deterioration in the patient; (iii) improving communication skills is linked to new understanding and better communication both within the family and in groups; (iv) learning to plan and solve problems requires the ability to solve problems in new ways; (v) becoming more independent requires patients to take responsibility for their own life. Developing insight and acceptance Both patients and family members described the process of gaining insight into their situation and the ability to accept it as being ‘hard work’ that entailed ‘a journey’ of awakening and maturing. Patients experienced that they gained insight by acquiring new knowledge about their illness throughout the intervention process. They also found support and greater hope for the future by talking to others in the group. Although some patients considered themselves to be knowledgeable about their illness, they felt they gained greater understanding of and were more willing to accept their condition during the course of the intervention. Family members learned 4
to accept that recovery could take years rather than weeks, and that knowing how to intervene could more adequately help patients. Some managed to accept the situation by viewing the illness as a natural human reaction that could benefit from standard rehabilitation as for any other medical condition. Family members understood that discussing and listening to the narratives patients told about their illness could help them recognize how hard the patients were working and adjust their expectations accordingly. Recognizing warning signs Early signs of deterioration may indicate that life is too demanding. However, warning sings vary among patients. Patients and family members reported that it was crucial to learn to recognize the specific warning signs of disease onset, as well as how to intervene. The intervention process taught patients how to recognize such signs and how to cope with them to prevent relapse. Some patients and family members posted the list of signs on the wall, whereas others learned them by heart. Patients © 2014 Wiley Publishing Asia Pty Ltd
L. Nilsen et al. reported that the group discussions made them aware of their own vulnerability and taught them how to develop an action plan. Family members also learned how to recognize warning signs and to adjust their responses and behaviour. Improving communication skills Patients reported an improved ability to discuss problems within the group and with their families. They recognized that family members developed better communication skills after meeting with others in the same situation. Nagging decreased as knowledge about how to communicate improved. They learned when to discuss problematic issues and when to refrain. The group made it possible for patients to discuss problems they were unable to discuss at home. Patients were able to reveal new issues and problems to their parents after accepting advice from the group – the same type of advice the parents would have loved to have provided. They felt the home environment became more peaceful as communication improved. Learning to plan and solve problems Advice and suggestions on how to cope with the problems of daily life emerged from the discussions. Patients reported that the problem-solving model helped them find new coping strategies, which made them feel less anxious and more relaxed. They realized that the healing process was more likely to improve when taking one step at a time. The problem-solving model was experienced as a ‘recipe’ that made life easier for the entire family. Family members learned how to solve daily minor issues through small interventions and became more solution oriented; they learned how important it was to take the time needed. They also developed new coping strategies, and learned to be more open minded and to be more considerate of their own needs. For those who found the model to be effective, the technique became automatic and was frequently used, even after intervention had ended. Becoming more independent Participants experienced that patient ability to make independent decisions improved during the intervention. Patients realized that they needed to make decisions about their own lives in order to become well. Some patients described having an inner ‘engine’ or ‘drive’. Those having this engine were better equipped to take control and make sound decisions for their healing process. Participants reported that discussions during meetings © 2014 Wiley Publishing Asia Pty Ltd
helped patients take multiple alternatives into account before making a decision, and that hope and self-confidence increased as they matured. Family members appreciated making a contribution and being acknowledged for their involvement; they felt respected for their unique understanding of their child. This understanding improved confidence among family members as they felt they had made an important contribution to the healing process. The ability of group leaders to create a safe environment within the group enabled participants to openly contribute to the discussion as they gained new knowledge. Family members also reported that the regular schedule, predictability and organized structure of the groups were effective tools that benefitted patients as they struggled towards independence.
DISCUSSION Five crucial themes emerged as important for the perceived benefits of the intervention: developing insight and acceptance, recognizing warning signs, improving communication skills, learning to plan and solve problems, and becoming more independent. Developing insight and acceptance We found that increased insight and acceptance were important elements in the healing process and essential for participation in family interventions by helping patients to take control of their own lives in a constructive manner. MacDonald et al., who investigated what happens to social relationships in early psychosis, found similar results.19 The authors pointed out that in order to gain insight, it was important to spend time with people who understood the process, and to receive support from family members and other young people who had experienced psychosis. They concluded that there was a need to provide FEP patients with psychosocial programmes to support them and help them cope with the ramifications of their psychosis. Selfappraisal is described as the ability of patients to recognize that they are able to act in a way that reinforces their healing process. In our study, patients describe this as their ability to take control of their own lives. Kurtz et al. found similar results in a study of self-efficacy and functional status in schizophrenia. They found that good insight is necessary for self-appraisal of the ability to carry out social and functional activities.20 In order to develop insight and acceptance, a combination of good 5
Family work and psychosis self-appraisal skills and the ability to share experiences seemed important for the healing process in FEP. The intervention described in this study may significantly contribute to this effort. Recognizing warning signs Relapse prevention is one of the treatment targets in this intervention. In our study, participants were encouraged to use techniques such as the ability to recognize warning signs to prevent relapse, which is in line with a recently published Cochrane review, stating that training to recognize early warning signs may help prevent or delay relapse and to cut back on hospital admissions.21 Sin et al. found that the prospect of a relapse was viewed as too overwhelming to discuss during the early stages of illness.15 Consequently, they reframed relapse prevention sessions into sessions about the recovery process, which is in line with Addington et al., who, in a handbook of psychological interventions in early psychosis, suggest that interventions for young people must be designed in such a way that young people find them attractive. They also state that an optimistic approach linked with realistic expectations improves the chance of recovery.22 In our study, both patients and family members found that preventing relapse and discussing warning signs were important, and that the intervention was experienced as inspiring optimism and promoting realistic expectations. Improving communication skills Patients and family members perceived an improvement in communication skills during the intervention, followed by a more peaceful and calm atmosphere at home. This is important, as several studies have shown how family work can have an impact on the level of expressed emotion (EE) and how this is linked to fewer relapses.1,23,24 In the EE construct, warmth is derived from expressions of positive affect by family members and includes attitudes of empathy, support, sympathy, concern and interest. Fostering positive relationships might be the single most important target of a psychoeducational family intervention.25 In our study, the peaceful and calm atmosphere at home might be linked to attitudes, support and sympathy from the family, not only to their own family member, but also to the other patients participating in the intervention. This attitude probably also improved the communication skills of participants. This important topic should be further explored through both quantitative and qualitative studies. 6
Learning to plan and solve problems Our patients expressed an understanding that they had to contribute themselves in order to become well. They described the problem-solving model as a way to learn to cope more effectively, especially for those bringing problems into the group. Family members became more confident and lowered their expectations as knowledge increased and new coping strategies and communication skills improved. Cotton et al. found that about half of the carers participating in the study used positive coping techniques such as problem solving and positive reframing. Optimistic coping, seeking connections and tension reduction were all essential factors.26 This is in line with our study where problem solving and positive reframing are part of the intervention. Discussions within the group made both patients and family members more confident and better able to handle difficult tasks after the intervention as well. Becoming more independent The patients described an inner drive as important for the course of recovery. Bandura defines this drive as self-efficacy: the confidence patients have in performing a behaviour or specific task.27 This was introduced as a crucial motivational factor for successfully carrying out social and everyday living skills. MacDonald et al. found that patients with FEP tend to become isolated, and social contacts are often limited to close family members and mental health providers.19 In our study, the patients reported improved social functioning and they were able to expand their social network. Parallel to these developments, family members felt better able to trust in the ability of the patients to make independent decisions. The intervention encourages independence, and the results show the importance of participation by both patients and family members. These findings suggest the need for psychosocial interventions that provide young people with an environment to assist them in coping with the ramifications of their illness. Limitations and strengths Our study was designed to give insight into the selfperceived benefits experienced by patients and family members through mutual participation in a psychoeducational family intervention after a first episode of psychosis. However, by adding questions about negative experiences or inadequacies, we might have been able to obtain even more useful information to improve the treatment model. The © 2014 Wiley Publishing Asia Pty Ltd
L. Nilsen et al. patients and family members who participated in the family intervention and who agreed to take part in this study were probably more motivated and capable of participating in such a program than the average patient and family. The mitigation of stigma is a key objective of the model; however, our questions did not explicitly address this matter during the interviews. Interestingly, none of the participants raised this issue. It would have been interesting to add questions relevant to this topic in the interview. Our findings may not be valid for all patients and family members after a first episode of psychosis. The authors represent different professional backgrounds, and all authors took part in the analysis of data, which we consider to be a strength. Furthermore, we interviewed both patients and family members, and were thus able to elucidate perspectives of the same phenomena for different stakeholders, while observing that patients and family members agreed on the elements of the intervention they considered beneficial (Table 2). Only one family participated in a single-family intervention. However, removing this case from the analysis had negligible impact on the main results.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
Conclusion The study suggests that developing insight and acceptance, recognizing warning signs, improving communications skills, learning to plan and solve problems, and becoming more independent are perceived as benefits of psychoeducational family intervention.
16.
17. 18.
ACKNOWLEDGEMENT The authors would like to acknowledge the patients and the family members for their contribution.
19.
20.
REFERENCES 21. 1. Pharoah F, Mari J, Rathbone J, Wong W. Family intervention for schizophrenia. Cochrane Database Syst Rev 2010; (12): CD000088. 2. Dixon LB, Dickerson F, Bellack AS et al. The 2009 schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophr Bull 2010; 36: 48–70. 3. McFarlane WR, Dixon L, Lukens E, Lucksted A. Family psychoeducation and schizophrenia: a review of the literature. J Marital Fam Ther 2003; 29: 223–45. 4. McFarlane WR, Link B, Dushay R, Marchal J, Crilly J. Psychoeducational multiple family groups: four-year relapse outcome in schizophrenia. Fam Process 1995; 34: 127–44. 5. McFarlane WR, Deakins M, Gingerich SL, Dunne E, Horen B, Newmark M. Multiple-family psycho educational group © 2014 Wiley Publishing Asia Pty Ltd
22.
23. 24.
treatment manual. New York: New York State Psychiatric Institute, 1991. McFarlane WR. Multiple-family groups and psychoeducation in the treatment of schizophrenia. New Dir Ment Health Serv 1994; 62: 13–22. Goldstein MJ, Rodnick EH, Evans JR, May PR, Steinberg MR. Drug and family therapy in the aftercare of acute schizophrenics. Arch Gen Psychiatry 1978; 35: 1169–77. Zhang M, Wang M, Li J, Phillips MR. Randomised-control trial of family intervention for 78 first-episode male schizophrenic patients. An 18-month study in Suzhou, Jiangsu. Br J Psychiatry Suppl 1994; 24: 96–102. Linszen D, Dingemans P, Van der Does JW et al. Treatment, expressed emotion and relapse in recent onset schizophrenic disorders. Psychol Med 1996; 26: 333–42. Rossberg JI, Johannessen JO, Klungsoyr O et al. Are multi family groups appropriate for patients with first episode psychosis? A 5-year naturalistic follow-up study. Acta Psychiatr Scand 2010; 122: 384–94. Leavey G, Gulamhussein S, Papadopoulos C, Johnson-Sabine E, Blizard B, King M. A randomized controlled trial of a brief intervention for families of patients with a first episode of psychosis. Psychol Med 2004; 34: 423–31. Addington DE, McKenzie E, Norman R, Wang J, Bond GR. Essential evidence-based components of first-episode psychosis services. Psychiatr Serv 2013; 64: 452–7. Larsen JA. Understanding a complex intervention: personcentred ethnography in early psychosis. J Ment Health 2007; 16: 333–45. Eisenstadt P, Monteiro VB, Diniz MJ, Chaves AC. Experience of recovery from a first-episode psychosis. Early Interv Psychiatry 2012; 6: 476–80. Sin J, Moone N, Newell J. Developing services for the carers of young adults with early-onset psychosis - implementing evidence-based practice on psycho-educational family intervention. J Psychiatr Ment Health Nurs 2007; 14: 282– 90. Nilsen L, Frich JC, Friis S, Røssberg JI. Patients’ and family members experiences of a psycho educational family intervention: a qualitative study. Issues Ment Health Nurs 2014 35: 58–68. Malterud K. Kvalitative metoder i medisinsk forskning: en innføring. Oslo: Universitetsforl, 2011. Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health 2012; 40: 795– 805. MacDonald E, Sauer K, Howie L, Albiston D. What happens to social relationships in early psychosis? A phenomenological study of young people’s experiences. J Ment Health 2005; 14: 129–43. Kurtz MM, Olfson RH, Rose J. Self-efficacy and functional status in schizophrenia: relationship to insight, cognition and negative symptoms. Schizophr Res 2013; 145 (1–3): 69–74. Morriss R, Vinjamuri I, Faizal MA, Bolton CA, McCarthy JP. Training to recognise the early signs of recurrence in schizophrenia. Cochrane Database Syst Rev 2013; (2): CD005147. Addington J, Burnett P. Working with families in the early stages of psychosis. In: Gleeson J, McGorry P, eds. Psychological Interventions in Early Psychosis: A Treatment Handbook. Chichester, West Sussex, England: John Wiley and Sons, 2004; 99–116. Leff J, Vaughn C. Expressed Emotion in Families: Its Significance for Mental Illness. New York: Guilford Press, 1985. Alvarez-Jimenez M, Priede A, Hetrick SE et al. Risk factors for relapse following treatment for first episode psychosis: a systematic review and meta-analysis of longitudinal studies. Schizophr Res 2012; 139 (1–3): 116–28.
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Family work and psychosis 25. Lee G, Barrowclough C, Lobban F. Positive affect in the family environment protects against relapse in first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol Published online Oct 1. 2014; 49: 367–76. 26. Cotton SM, McCann TV, Gleeson JF, Crisp K, Murphy BP, Lubman DI. Coping strategies in carers of young people with
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a first episode of psychosis. Schizophr Res 2013; 146 (1–3): 118–24. 27. Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev 1977; 84: 191–215.
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Early Intervention in Psychiatry 2014; ••: ••–••
doi:10.1111/eip.12153
Original Article Participants’ perceived benefits of family intervention following a first episode of psychosis: a qualitative study Liv Nilsen,1 Jan C. Frich,2 Svein Friis,3,4 Irene Norheim5 and Jan Ivar Røssberg1,3 Abstract Aim: To explore the perceived benefits for patients and family members of psychoeducational family intervention following a first episode of psychosis.
understanding of the fact that the patient has an illness, and recognizing the need for support; (ii) recognizing warning signs requires an understanding of early signs of deterioration in the patient; (iii) improving communication skills is linked to new understanding and better communication both within the family and in groups; (iv) Learning to plan and solve problems requires the ability to solve problems in new ways; (v) becoming more independent requires patients to take responsibility for their own life.
Centre of Competence for Early Intervention in Psychosis and 4Research and Development Mental Health, Division of Mental Health and Addiction, Oslo University Hospital, 2Institute of Health and Society and 3Institute of Clinical Research and Medicine, University of Oslo, Oslo, and 5Division of Mental Health and Addiction, Vestre Viken Hospital Thrust, Lier, Norway
Methods: A qualitative exploratory study using data from interviews with 12 patients and 14 family members who participated in a psychoeducational multi- or single-family treatment programme. Semi-structured interviews were digitally recorded and transcribed verbatim with slight modifications, after which they were analysed by systematic text condensation.
Corresponding author: Mrs Liv Nilsen, Centre of Competence for Early Intervention in Psychosis, Division of Mental Health and Addiction, Fridtjof Nansens vei 12, NO-0369 Oslo, Norway. Email: [email protected]
Results: Patients and family members reported benefits that could be classified in five categories: (i) developing insight and acceptance requires
Received 18 December 2013; accepted 25 March 2014
Key words: early intervention, family work, psychosis, qualitative research.
1
INTRODUCTION Psychosocial family interventions are well established for patients with psychosis and for their family members, and have been shown to improve communication within the family, reduce perceived family burden, enhance cooperation with the mental health system, increase medication adherence and reduce risk of relapse.1 Family interventions have also been proven to encourage employment and enhance both social and family functioning.2–4 The McFarlane Psycho Education Multi Family Group (PEMFG) treatment model provides both patients and family members with information about the illness, guidelines for managing © 2014 Wiley Publishing Asia Pty Ltd
Conclusion: The study suggests that developing insight and acceptance, learning about warning signs, improving communications skills, learning to plan and solve problems, and becoming more independent are perceived as benefits of a psychoeducational family intervention.
the illness, problem-solving skills and the opportunity to interact with other families over a 2-year period.5,6 This approach is also recommended as single-family intervention. Few quantitative studies of psychosocial family interventions in first-episode psychosis (FEP) have been carried out, and the results are contradictory.7–11 Two studies showed positive outcome of family work,7,8 two studies showed negative outcome,9,10 and one study showed no difference in outcome.11 However, in a recently published systematic review, Addington and co-workers examined evidence-based treatment components in first-episode services. They concluded that multifamily group psychoeducation was one of only five 1
Family work and psychosis treatments that met evidence level A criterion and attained the highest level of agreement among more than 100 surveyed experts.12 To our knowledge, only three qualitative studies have explored FEP treatment in health services, and family involvement was one of the many elements examined.13–15 In an ethnographic study, Larsen found that FEP patients did not find intervention useful, but thought that family members benefitted by developing a more open and supportive relationship.13 Eisenstadt et al. explored subjective factors involved in the recovery process for FEP patients, and found that in addition to medication, interpersonal relationships were important for recovery. Patients reported that they gained insight when they shared experiences in the PEMFG. Group sessions also allowed them to share their experiences, and by identifying with each other they perceived that they gained insight into new ways of managing their symptoms.14 Sin et al. explored how to develop and implement family work in early intervention services, and found that carers participating in a PEMFG gained knowledge of problem-solving and communication skills, and were able to act as facilitators for establishing new groups.15 These three aforementioned studies have investigated subjective factors in the recovery process for the whole treatment package in early intervention services and initiatives to develop services for carers in FEP. None of these studies have explicitly explored the perceived benefits of the intervention on participants. In a previous paper, we explored how patients and family members experienced participation in psychoeducational family work. We found that group leaders need to recognize levels of anxiety and psychotic symptoms among patients before and during the intervention, and to consider the different needs of patients and family members regarding the format and initiation of the group intervention.16 A better understanding of what elements patients and family members find effective might help tailor family work to better meet the needs of patients and family members. Aim of the study This study aims to explore the perceived benefits of psychoeducational family intervention on family members and patients after a first episode of psychosis. METHODS We carried out a qualitative exploratory study based on in-depth interviews conducted in a natural 2
setting. The study was carried out at Centre of Competence for Early Intervention in Psychosis (TIPS), and is part of the Thematic Research area Psychosis (TOP study) at the University of Oslo and Oslo University Hospital.
Participants Patients with FEP and their family members who participated in psychoeducational multi- or singlefamily intervention in 2010 and 2011 were eligible for inclusion. A purposeful sample, aiming at diversity of age and gender, was recruited from three hospitals in Southeastern Norway. A total of 12 patients and 14 family members (parents/foster parents) participated and provided informed consent. One patient did not want parental participation, two patients wanted both parents to participate, and one patient preferred to be interviewed along with his mother and father due to his mother’s inadequate Norwegian language skills. Demographic data, as reported by the participants, were collected at the time of the interview (Table 1).
Data collection An interview guide was developed in cooperation with patients, family members and mental health providers who were familiar with the intervention. The guide covered different elements of the intervention, and was structured in themes: the alliance period, survival skills workshop and meetings. To ensure that all parts of the intervention were covered, we developed open-ended questions for each theme, such as ‘Could you describe how you felt when you first met the group leaders?’ and ‘Was there anything in this meeting that made you feel that this intervention might be good for you?’ The first author conducted in-depth interviews for 30–90 min between August 2011 and March 2012. The interviews were digitally recorded, and transcribed by the first author. The first author is a PEMFG leader with experience conducting and supervising the intervention with patients having various chronic psychotic disorders. Participants chose the location of the interviews, usually in their home. The interviews were transcribed verbatim with slight modifications.17
Ethical aspects The study was performed in accordance with the Declaration of Helsinki and approved by the © 2014 Wiley Publishing Asia Pty Ltd
L. Nilsen et al. TABLE 1. Participant characteristics Patients (N = 12)
Age Male Race/Ethnicity White/Caucasian Asian Education (years) 10 13 >13 Diagnosis Schizophrenia Schizoaffective Psychosis NOS Housing Living alone With parents/sheltered housing/hospitalized Occupation Work School/work/social security Social security only Multi-family group Single-family group Meetings All Less than half
n
%
12 5
Family members (N = 14)
Range
Mean
n
%
19–38
26.8
41
14 6
42
9 3
75 25
12 2
7 2 3
58 16 25
2 1 11
14 7 78
10 1 1
83 8 8
7 5
58 41
1 7 4 11 1
8 58 33 91 8
14
100
13 1
92 7
8 4
66 33
14
100
Range
Mean
42–65
56.0
Note: Data as described by the participants. NOS, not otherwise specified.
Regional Committee for Medical and Health Research Ethics for the Southeast Region of Norway (2011/566). Analysis Data were analysed according to the principles of systematic text condensation (STC),18 which is a descriptive and exploratory approach to thematic analysis of qualitative data. The analysis was conducted stepwise, and steps 2 and 3 were analysed using NVivo 9 software. 1 We read through the interviews to get an overall impression of the material, and to look for themes related to the opinion of patients and family members concerning the different elements of the intervention. We approached the data with an open mind, showing sensitivity to the views and experiences of participants, and established a list of codes for each theme. 2 Meaning units are fragments of text containing information about the research question/themes. We identified pieces of text (meaning units) that © 2014 Wiley Publishing Asia Pty Ltd
represented a certain theme, marked the text with a code and connected related meaning units into code groups. 3 We condensed the meaning of the text that had been identified under each coded group. We developed an analytic text about the phenomena we studied. We synthesized the content and developed descriptions and concepts. The first and last authors read through all interviews separately several times and identified meaning units, whereas the other authors joined them to define the final categories and their contents. Codes and meaning units were discussed among the authors until consensus was obtained. RESULTS Patients and family members reported benefits that could be classified into five categories (Table 2): (i) developing insight and acceptance requires understanding of the fact that the patient has an illness, and recognizing the need for support; (ii) recognizing warning signs requires an understanding of 3
Family work and psychosis TABLE 2. Participants’ views on effective elements of a psychoeducational intervention Meaning units Developing insight and acceptance
Recognizing warning signs
Improving communication skills
Learning to plan and solve problems
Becoming more independent
Examples of quotes from patients
Examples of quotes from family members
‘The group made me see that I was an ordinary human being despite of my illness.’ ‘The group made me believe in the future.’ ‘To realise that I have an illness is motivation to continue in the group.’ ‘I know them by heart.’ ‘I am able to tell my parents when I recognise my warning signs.’ ‘My body tries to tell me when to relax and now I know how to intervene before I get a relapse.’ ‘I became able to discuss problematic issues together with my family.’
‘To appreciate friendship, family and be able to stay well is more important.’ ‘If she thinks she is having a good life I am satisfied.’ ‘I have adjusted my expectations for the future.’ ‘Those signs are more easily discussed in the group than at home.’ ‘It is a balance between knowing and acting.’ ‘Everybody ought to learn enough to discover those signs and be able to intervene immediately.’ ‘Our communication skills improved and changed the climate within the family.’ ‘We are able to talk together in a different sort of way.’ ‘Advices about how to get out of bed, when to go to sleep at night made life easier for the whole family’ ‘The problem-solving model made us able to solve our daily hazels by small interventions like sending a text message while my son was taking the train.’ ‘The problem-solving model was like a recipe.’ ‘NN matured and understood that she had to do something by herself, not only sit and wait for help.’ ‘It has been a huge progress lately and I think it has something to do with time and her being able to handle her life in a more constructive manner.’
‘My family became able to make plans, which made my life more predictable and safe.’ ‘To be able to see possibilities rather than problems.’ ‘You might call it coping strategies when you are able to ask yourself: are you 100% sure what you are thinking is true and to be able to say no.’ ‘I had to be responsible for my own life in order to recover.’ ‘I had to decide how my life was going to be.’ ‘I managed to fill my life with meaningful activities’ ‘My illness made me grew up.’
early signs of deterioration in the patient; (iii) improving communication skills is linked to new understanding and better communication both within the family and in groups; (iv) learning to plan and solve problems requires the ability to solve problems in new ways; (v) becoming more independent requires patients to take responsibility for their own life. Developing insight and acceptance Both patients and family members described the process of gaining insight into their situation and the ability to accept it as being ‘hard work’ that entailed ‘a journey’ of awakening and maturing. Patients experienced that they gained insight by acquiring new knowledge about their illness throughout the intervention process. They also found support and greater hope for the future by talking to others in the group. Although some patients considered themselves to be knowledgeable about their illness, they felt they gained greater understanding of and were more willing to accept their condition during the course of the intervention. Family members learned 4
to accept that recovery could take years rather than weeks, and that knowing how to intervene could more adequately help patients. Some managed to accept the situation by viewing the illness as a natural human reaction that could benefit from standard rehabilitation as for any other medical condition. Family members understood that discussing and listening to the narratives patients told about their illness could help them recognize how hard the patients were working and adjust their expectations accordingly. Recognizing warning signs Early signs of deterioration may indicate that life is too demanding. However, warning sings vary among patients. Patients and family members reported that it was crucial to learn to recognize the specific warning signs of disease onset, as well as how to intervene. The intervention process taught patients how to recognize such signs and how to cope with them to prevent relapse. Some patients and family members posted the list of signs on the wall, whereas others learned them by heart. Patients © 2014 Wiley Publishing Asia Pty Ltd
L. Nilsen et al. reported that the group discussions made them aware of their own vulnerability and taught them how to develop an action plan. Family members also learned how to recognize warning signs and to adjust their responses and behaviour. Improving communication skills Patients reported an improved ability to discuss problems within the group and with their families. They recognized that family members developed better communication skills after meeting with others in the same situation. Nagging decreased as knowledge about how to communicate improved. They learned when to discuss problematic issues and when to refrain. The group made it possible for patients to discuss problems they were unable to discuss at home. Patients were able to reveal new issues and problems to their parents after accepting advice from the group – the same type of advice the parents would have loved to have provided. They felt the home environment became more peaceful as communication improved. Learning to plan and solve problems Advice and suggestions on how to cope with the problems of daily life emerged from the discussions. Patients reported that the problem-solving model helped them find new coping strategies, which made them feel less anxious and more relaxed. They realized that the healing process was more likely to improve when taking one step at a time. The problem-solving model was experienced as a ‘recipe’ that made life easier for the entire family. Family members learned how to solve daily minor issues through small interventions and became more solution oriented; they learned how important it was to take the time needed. They also developed new coping strategies, and learned to be more open minded and to be more considerate of their own needs. For those who found the model to be effective, the technique became automatic and was frequently used, even after intervention had ended. Becoming more independent Participants experienced that patient ability to make independent decisions improved during the intervention. Patients realized that they needed to make decisions about their own lives in order to become well. Some patients described having an inner ‘engine’ or ‘drive’. Those having this engine were better equipped to take control and make sound decisions for their healing process. Participants reported that discussions during meetings © 2014 Wiley Publishing Asia Pty Ltd
helped patients take multiple alternatives into account before making a decision, and that hope and self-confidence increased as they matured. Family members appreciated making a contribution and being acknowledged for their involvement; they felt respected for their unique understanding of their child. This understanding improved confidence among family members as they felt they had made an important contribution to the healing process. The ability of group leaders to create a safe environment within the group enabled participants to openly contribute to the discussion as they gained new knowledge. Family members also reported that the regular schedule, predictability and organized structure of the groups were effective tools that benefitted patients as they struggled towards independence.
DISCUSSION Five crucial themes emerged as important for the perceived benefits of the intervention: developing insight and acceptance, recognizing warning signs, improving communication skills, learning to plan and solve problems, and becoming more independent. Developing insight and acceptance We found that increased insight and acceptance were important elements in the healing process and essential for participation in family interventions by helping patients to take control of their own lives in a constructive manner. MacDonald et al., who investigated what happens to social relationships in early psychosis, found similar results.19 The authors pointed out that in order to gain insight, it was important to spend time with people who understood the process, and to receive support from family members and other young people who had experienced psychosis. They concluded that there was a need to provide FEP patients with psychosocial programmes to support them and help them cope with the ramifications of their psychosis. Selfappraisal is described as the ability of patients to recognize that they are able to act in a way that reinforces their healing process. In our study, patients describe this as their ability to take control of their own lives. Kurtz et al. found similar results in a study of self-efficacy and functional status in schizophrenia. They found that good insight is necessary for self-appraisal of the ability to carry out social and functional activities.20 In order to develop insight and acceptance, a combination of good 5
Family work and psychosis self-appraisal skills and the ability to share experiences seemed important for the healing process in FEP. The intervention described in this study may significantly contribute to this effort. Recognizing warning signs Relapse prevention is one of the treatment targets in this intervention. In our study, participants were encouraged to use techniques such as the ability to recognize warning signs to prevent relapse, which is in line with a recently published Cochrane review, stating that training to recognize early warning signs may help prevent or delay relapse and to cut back on hospital admissions.21 Sin et al. found that the prospect of a relapse was viewed as too overwhelming to discuss during the early stages of illness.15 Consequently, they reframed relapse prevention sessions into sessions about the recovery process, which is in line with Addington et al., who, in a handbook of psychological interventions in early psychosis, suggest that interventions for young people must be designed in such a way that young people find them attractive. They also state that an optimistic approach linked with realistic expectations improves the chance of recovery.22 In our study, both patients and family members found that preventing relapse and discussing warning signs were important, and that the intervention was experienced as inspiring optimism and promoting realistic expectations. Improving communication skills Patients and family members perceived an improvement in communication skills during the intervention, followed by a more peaceful and calm atmosphere at home. This is important, as several studies have shown how family work can have an impact on the level of expressed emotion (EE) and how this is linked to fewer relapses.1,23,24 In the EE construct, warmth is derived from expressions of positive affect by family members and includes attitudes of empathy, support, sympathy, concern and interest. Fostering positive relationships might be the single most important target of a psychoeducational family intervention.25 In our study, the peaceful and calm atmosphere at home might be linked to attitudes, support and sympathy from the family, not only to their own family member, but also to the other patients participating in the intervention. This attitude probably also improved the communication skills of participants. This important topic should be further explored through both quantitative and qualitative studies. 6
Learning to plan and solve problems Our patients expressed an understanding that they had to contribute themselves in order to become well. They described the problem-solving model as a way to learn to cope more effectively, especially for those bringing problems into the group. Family members became more confident and lowered their expectations as knowledge increased and new coping strategies and communication skills improved. Cotton et al. found that about half of the carers participating in the study used positive coping techniques such as problem solving and positive reframing. Optimistic coping, seeking connections and tension reduction were all essential factors.26 This is in line with our study where problem solving and positive reframing are part of the intervention. Discussions within the group made both patients and family members more confident and better able to handle difficult tasks after the intervention as well. Becoming more independent The patients described an inner drive as important for the course of recovery. Bandura defines this drive as self-efficacy: the confidence patients have in performing a behaviour or specific task.27 This was introduced as a crucial motivational factor for successfully carrying out social and everyday living skills. MacDonald et al. found that patients with FEP tend to become isolated, and social contacts are often limited to close family members and mental health providers.19 In our study, the patients reported improved social functioning and they were able to expand their social network. Parallel to these developments, family members felt better able to trust in the ability of the patients to make independent decisions. The intervention encourages independence, and the results show the importance of participation by both patients and family members. These findings suggest the need for psychosocial interventions that provide young people with an environment to assist them in coping with the ramifications of their illness. Limitations and strengths Our study was designed to give insight into the selfperceived benefits experienced by patients and family members through mutual participation in a psychoeducational family intervention after a first episode of psychosis. However, by adding questions about negative experiences or inadequacies, we might have been able to obtain even more useful information to improve the treatment model. The © 2014 Wiley Publishing Asia Pty Ltd
L. Nilsen et al. patients and family members who participated in the family intervention and who agreed to take part in this study were probably more motivated and capable of participating in such a program than the average patient and family. The mitigation of stigma is a key objective of the model; however, our questions did not explicitly address this matter during the interviews. Interestingly, none of the participants raised this issue. It would have been interesting to add questions relevant to this topic in the interview. Our findings may not be valid for all patients and family members after a first episode of psychosis. The authors represent different professional backgrounds, and all authors took part in the analysis of data, which we consider to be a strength. Furthermore, we interviewed both patients and family members, and were thus able to elucidate perspectives of the same phenomena for different stakeholders, while observing that patients and family members agreed on the elements of the intervention they considered beneficial (Table 2). Only one family participated in a single-family intervention. However, removing this case from the analysis had negligible impact on the main results.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
Conclusion The study suggests that developing insight and acceptance, recognizing warning signs, improving communications skills, learning to plan and solve problems, and becoming more independent are perceived as benefits of psychoeducational family intervention.
16.
17. 18.
ACKNOWLEDGEMENT The authors would like to acknowledge the patients and the family members for their contribution.
19.
20.
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Family work and psychosis 25. Lee G, Barrowclough C, Lobban F. Positive affect in the family environment protects against relapse in first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol Published online Oct 1. 2014; 49: 367–76. 26. Cotton SM, McCann TV, Gleeson JF, Crisp K, Murphy BP, Lubman DI. Coping strategies in carers of young people with
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