Issues in Mental Health Nursing, 35:58–68, 2014 Copyright © 2014 Informa Healthcare USA, Inc. ISSN: 0161-2840 print / 1096-4673 online DOI: 10.3109/01612840.2013.837992

Patients’ and Family Members’ Experiences of a Psychoeducational Family Intervention after a First Episode Psychosis: A Qualitative Study Liv Nilsen, MNSc, RN Oslo University Hospital, Division of Mental Health and Addiction, Oslo, Norway

Jan C. Frich, MD, PhD University of Oslo, Institute of Health and Society, Oslo, Norway

Svein Friis, MD, PhD and Jan Ivar Røssberg, MD, PhD Oslo University Hospital, Division of Mental Health and Addiction, and Institute of Clinical Medicine, University of Oslo, Oslo, Norway

cological and psychosocial interventions (NICE National Collaborating Centre for Mental Health, 2010). Family work is one of the best researched psychosocial interventions for patients with psychosis. Psychosocial family interventions have proved to decrease the frequency of relapse, reduce hospital admission, improve general social impairment, and encourage medication adherence in patients with chronic psychosis (Magliano et al., 2005; Pharoah, Mari, Rathbone, & Wong, 2010). However, psychosocial family interventions are less studied for patients with a FEP. This is of importance as FEP patients may have quite different treatment needs than patients who have had psychotic symptoms for several years. To our knowledge, only five empirical studies have examined the effect of family interventions in FEP. Two studies show that family work might be beneficial for patients with an FEP (Goldstein, Rodnick, Evans, May, & Steinberg, 1978; Zhang, Wang, Li, & Phillips, 1994), two studies show a worsened outcome for patients participating in family work interventions (Linszen et al., 1996; Rossberg et al., 2010), and one study shows no effect of the family intervention (Leavey et al., 2004). Only one study has qualitatively explored the experience of patients, families and service providers participating in a psychosocial family intervention. Larsen (2007) conducted an ethnographic study within the Danish OPUS project to explore the subjective experience of patients who participated in a psychosocial family intervention and found that several of the patients who participated did not find the family intervention useful. However, patients did describe it as useful for their family members in developing a more open and supportive relationship. There are several possible reasons for the inconclusive results of family interventions in FEP patients. First, it could be that the intervention is inadequately adjusted for patients with an FEP. FEP patients, as a group, are more heterogeneous than

The objective of this study is to explore patients’ and family members’ experiences of the different elements of a psychoeducational family intervention. A qualitative, explorative study was performed based on digitally recorded in-depth interviews with 12 patients and 14 family members. The interview data were transcribed in a slightly modified verbatim mode and analysed using systematic text condensation. Six themes that both patients and family members experienced as important in the family intervention were identified: alliance, support, anxiety and tension, knowledge and learning, time, and structure. A good relationship between the group leaders and participants was essential in preventing dropout. Meeting with other people in the same situation reduced feelings of shame and increased hope for the future. Hearing real life stories was experienced as being more important for gaining new knowledge about psychosis than lectures and workshops. However, many patients experienced anxiety and tension during the meetings. The group format could be demanding for patients immediately after a psychotic episode and for those still struggling with distressing psychotic symptoms. Group leaders need to recognise patients’ levels of anxiety before, and during, the intervention, and consider the different needs of patients and family members in regards to when the intervention starts, the group format, and the patients’ level of psychotic symptoms. The findings in the present study may help to tailor family work to better meet the needs of both patients and family members.

In order to improve prognosis and promote recovery for patients with first episode psychosis (FEP), it is important to establish comprehensive treatment programs that combine pharmaThe authors acknowledge Irene Norheim at Vestre Viken HF and Anne Fjell at Centre of Competence for Early Intervention in Psychosis for their contributions. Address correspondence to Liv Nilsen, Oslo University Hospital, Division of Mental Health and Addiction, Fridtjof Nansens Vei 12, 0369 Oslo, Norway. E-mail: [email protected]

58

PSYCHOEDUCATIONAL FAMILY INTERVENTION

patients who have been ill for several years in regard to symptom levels, social functioning, and prognosis. Second, it could be that the intervention normally focuses on coping with the negative consequences of a chronic disease instead of considering the crisis reactions an FEP onset might cause. Third, it may be that the intervention is perceived as stressful and thereby interferes with the recovery process where stress reduction is the goal. Fourth, there might be a discrepancy between the patient’s and the family members’ needs (Rossberg et al., 2010). Family interventions may be multi-family, single-family, or mixed. They also differ in duration and whether the patients participate in the intervention (Dixon, Adams, & Lucksted, 2000). Although substantively heterogeneous, the interventions usually involve education about the disease, stress reduction strategies, communication training, and problem-solving enhancement (Askey, Gamble, & Gray, 2007; Barbato & D’Avanzo, 2000; Dixon et al., 2001; Lincoln, Wilhelm, & Nestoriuc, 2007; McFarlane, Dixon, Lukens, & Lucksted, 2003; McNab & Linszen, 2009; Pitschel-Walz, Leucht, Bauml, Kissling, & Engel, 2001). The psychoeducational family intervention as described by Anderson (1986), and later by McFarlane et al. (1991), is probably the most used family intervention and consists of four stages: engagement, education, re-entry, and social/vocational rehabilitation. The intervention is used in both a single- and a Psycho-educational multi-family group (PEMFG) approach that is continued for six to nine months or two years, respectively (Dixon et al., 2010; McFarlane et al., 2003; Murray-Swank & Dixon, 2004). The goal of family intervention is to provide optimal treatment as early as possible for those experiencing FEP to promote remission and prevent relapse. The different phases in the intervention are described in Figure 1.

59

As seen from the aforementioned review of the literature, most studies in this field have used quantitative methods, and the perspectives of those involved in the family have mostly been ignored. Moreover, the inconclusive results of the quantitative studies show that there is room for improvement. An exploration of how the patients and family members experience this intervention may help our understanding of what group leaders should be aware of when conducting a psychoeducational family intervention for patients with an FEP. Consequently, before doing another randomized controlled trial (RCT), it is important to explore how the different elements of family work are experienced by the participants and how they can be adjusted to patients with a FEP and their family members. AIMS OF THE STUDY The primary purpose of the present study is to explore patients’ and family members’ experiences of the different elements of a psychoeducational family intervention. The following questions inspired us to do this study:

1. Did patients and family members experience the different elements of the intervention differently? 2. What were participants’ experiences with the number of participants in the groups and the length of time it between the start of the intervention and the psychosis? 3. What were patients’ and family members’ views about a single-family versus a multi-family approach? 4. What were participants’ views about the length of the intervention?

Joining In

Survival Skills Workshop

Meetings

Meeting Schedule

At least three separate meetings with patient and family

Before the meeting starts and after one year. Separate workshop for patient and family members at start, together after one year

90 (45) minutes every second week. Patient and family together. 1. Getting to know each other 2. How the illness has changed our lives All remaining: Problem-solving

15 (5) minutes socializing 20 (10) minutes Go-Round 5 (5) minutes selecting a problem 45 (20) minutes solving the problem 5 (5) minutes socializing

Time 4–6 months

½ day

2 years

FIGURE 1. The Structure of the Psychoeducational Family Intervention. Note: The Survival Skills Workshop is implemented in the Joining In sessions in a single family intervention. The meeting schedule for single family family interventions is in parentheses.

60

L. NILSEN ET AL.

DESIGN AND METHODS A qualitative, explorative study was performed based on semi-structured interviews in a naturalistic setting. The study was carried out at the Centre of Competence for Early Intervention in Psychosis (TIPS), and is a part of the Thematic Research Area Psychosis (TOP study) at the University of Oslo and Oslo University hospital. Participants The participants were recruited from three hospitals of SouthEastern Norway from the cohort of patients with an FEP who had participated in a psychoeducational single-, or multi-family group treatment. Patients were interviewed within 12 months after the intervention had finished (in 2010 and 2011). A total of 12 patients and 14 family members were recruited. All patients included in the study were recognized as first episode psychosis patients. Written informed consent was obtained from all participants. The patients in the study decided which, of their family members, should be interviewed. Three patients wanted both their mother and the father to be interviewed. Only one patient who was asked to participate refused, saying that he did not want to be reminded of his psychotic episode. The multi-family intervention was conducted bi-weekly for two years and the single-family intervention bi-weekly for one year. Demographic data, as described by patients and family members, are shown in Table 1. Data Collection An interview guide was developed based on the researcher’s experiences and interviews with representatives for patients. In addition, family members and patients familiar with the intervention and mental health providers made useful suggestions for the guide’s improvement. The guide covered the different themes as described in Figure 1. In-depth qualitative interviews, approximately one hour in length, were conducted between August 2011 and March 2012. The interviews were conducted, digitally recorded, and transcribed by the first author. The transcriptions were in a slightly modified verbatim mode (Malterud, 2011), meaning that all the “yes,” “hmms,” and half sentences in the middle of another sentence were not transcribed. The participants chose where to be interviewed, which was usually in their home. Demographic data (age, gender, household, work, and education) were collected at the time of the interview. Ethical Aspects Most of the patients appreciated the opportunity to talk about their experiences of psychosis. Patients were asked if they needed a break or wanted to stop if they looked restless or tired during the interview. Some admitted being tired, but none of the participants wanted to stop the interview. The study was performed in accordance with the Declaration of Helsinki and approved by the Regional Committee for Medical and Health

Research Ethics for the South-East region in Norway (REK) (2011/566). Analysis Data were analysed according to the principles of systematic text condensation (STC) (Malterud, 2012). The analysis was conducted in four steps. First, we read through the interviews to get an overall impression, looking for preliminary themes related to patients’ and family members’ experience of the different elements of a psychoeducational family intervention. Second, we broke the text into manageable meaning units and marked them with a code and connected related meaning units into code groups. Third, we condensed the meaning under each coded group, and fourth, we developed an analytic text about the phenomenon we studied. (We used NVivo 9 for steps two and three.) The first and the last author read through all the interviews separately several times and identified meaning units. Codes and meaning units were discussed in the research group until consensus was achieved. RESULTS We present the findings under six main themes that emerged in the analysis: “Alliance” describes an ongoing process during the intervention where trust, openness, and confidentiality are essential; “Support” describes the ability to be involved emotionally and connect with others; “Anxiety and Tension” describes to what extent the participants felt secure or insecure during the intervention and whether they felt safe enough to disclose difficult issues from their own life; “Knowledge and Learning” describes the importance of learning through lectures, workshops, and real life stories; “Time” describes the start of, and length of, the intervention; and “Structure” describes what to expect from, and when to join, a single- or multi-family intervention. The themes highlight the experiences of patients and families and describe both differences and similarities in these experiences. Alliance Issues related to trust, openness, and confidentiality emerged when participants were asked about their experiences during the process of beginning the intervention and about changes that occurred throughout the intervention. Trust, Openness, and Confidentiality The “joining in” period was experienced as important for patients’ ability to build a good and mutual relation with the group leaders. Group leaders who were described as open-minded and honest, and who disclosed issues from their own lives and were supportive while also being able to disagree with participants, were seen as more trustworthy than those who were not described this way. All participants emphasised the importance they attached to talking to group leaders by themselves. As one family member said: “It was the first time the two of us got

61

PSYCHOEDUCATIONAL FAMILY INTERVENTION

TABLE 1 Participant Characteristics Patients (N = 12)

Age Male Race White/Caucasian Asian Education 10 years 13 years >13 years 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

M

SD

n

%

19–38

26.8

5.8

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

8

14

100

7 4 11 1

58 33 91 8

13 1

92 7

8 4

66 33

14

100

Range

M

SD

42–65

56

6.2

Note: Data as described by the participants

the chance to talk to a professional without [patient] present.” The confidentiality within the group was important, with one participant saying, “What’s being talked about in the group stays within the group.” In addition, although family members referred to the confidentiality agreement as “just a piece of paper,” they described the mutual understanding of confidentiality in allowing them to tell their story without holding things back, and indicated that this was more important to them. Support The ability to be involved emotionally and to connect with others in the same situation emerged as important in order to both support others and be supported during the intervention. Emotional Involvement and Connecting with Others To be able to share one’s inner thoughts made the relationship within the group closer. As one patient described, “We sat laughing and crying, sharing our inner thoughts, we had a

strong emotional bond.” Family members described the group leaders as dedicated to the intervention, involved in the participants’ daily life, and doing much more than expected: “They [group leaders] had a passion for the intervention.” This allowed patients to talk about their struggles in an open way, in contrast to how they did at home. However, some family members described patients as taking less part in the problem solving process and that the leaders had to strongly encourage them to talk. During problem solving, patients were able to give and take advice, gain new perspectives, and experience that several solutions were possible at the same time. Listening to other patients’ problems was sometimes experienced as emotionally difficult. However, some patients experienced increased hope concerning their own health by listening to other patients’ illness and recovery history. Family members described meeting with others as their only social outlet apart from with socialising with colleagues at work and old friends. Furthermore, they felt they heard new perspectives on the situation and experienced mutual

62

L. NILSEN ET AL.

TABLE 2 Important Elements in the Participants Experiences of a Psychoeducational Intervention Theme

Meaning Units

Alliance

Support

Anxiety and tension

Quotations from Patients’ Interviews

Quotations from Family Interviews

Trust and openness

Being able to talk about everything without my parents being there. I would call it a lack of respect if they don’t share anything from their own lives in return. . . . a one way communication.

Confidentiality

What’s being said in the group stays in the group. The importance of confidentiality, knowing who they are and what they know about me.

Emotional involvement

To be able to share our own experiences. We asked each other how things were going and you felt people cared for each other.

Connecting with others

To be able to share experiences and to get some new perspectives on my problems. I was hoping to meet someone with the same illness, to build a network. It is quite difficult listening to other patient’s problems. I think about the other patients when I am feeling lonely.

Insecure-secure

I felt secure having my parents there and knowing the leaders from before the intervention. It loosened up when we got to know each other. It was somewhat two sided, I felt both insecure and too talkative at the same time. I was anxious before the meeting and felt relieved on my way home.

It was the first time the two of us got the chance to talk to a professional without NN being there. The answers I got made me confident. We began in good spirits, but it was a rather disappointing experience. The patients were not invited into the alliance period. To be able to tell our story. The confidentiality agreement is just a piece of paper; what is more important is what you feel. The confidentiality agreement was kept to too tightly; little was told about those who dropped out. I felt I was part of the group and I think the others felt the same. The patients were a bit reserved and the group leaders had to pull the words out. It must have been a great effort to get something sensible out of a group that silent. Especially when it was not only the patients that did not contribute, but also some of the family members who hardly said a word. The group leaders did more than one could expect. They had a passion for the intervention. Sharing a common fate and a mutual comfort. It is a bit strange, but in the end we felt almost like old friends. I think it is both good and bad; on one hand it must be hurtful to listening to others struggling and on the other hand it must be relief knowing you’re not alone. I would say that one’s own success is good but others misery is, you know. . . I felt it gave hope. . . someone else being interested in the most important issues in my life. When someone opens up you understand that you yourself can do the same in this setting. I remember looking forward to the meeting bringing in themes I could not talk about with NN alone. I think she worried sometimes just about being present, and she lacked confidence when having a bad day. (Continued on next page)

63

PSYCHOEDUCATIONAL FAMILY INTERVENTION

TABLE 2 Important Elements in the Participants Experiences of a Psychoeducational Intervention (Continued) Theme

Meaning Units

Quotations from Patients’ Interviews

Quotations from Family Interviews

I talked a lot less than I usually do and it was difficult for the leaders to make me speak. It felt I had a stone in my stomach. I did not dare bring in themes that I really wanted to talk about.

Worrying might be healthy up to a limit. It was the only social setting I was in besides work. There was a more supportive atmosphere in the group the last six months. After a while those having a bad day managed to say something about it in the group. They managed to make the illness seem more harmless than I used to believe. I remember one participant talking about her childhood and it was almost like I was listening to my own story. The time . . . . . I had not imagined that the recovery would take that long. They were talking about five years. We knew much of it already from other courses and from reading and the Internet. If we knew what schizophrenia was, we would not put that much pressure upon NN. When the patients are talking with each other it is worth listening to, it gives me an insight quite different from what is talked about at the survival skills workshop. To appreciate the small things in life. We learned a lot as human beings and I think we grew personally. . .got some life experience. The patient must be able to concentrate, take some medication and not be too suspicious of others. When the family is ready, not having to wait for six years. From day one. It was a demanding group to participate in so having a date set for the end helped us stay throughout the intervention. It is important to have a schedule to follow. A bit special but I sort of liked it.

Knowledge and learning

Education Sharing experiences

I think my parents were struggling with feelings of guilt, but it got less painful after they got some education. It is important to know about the illness, things you don’t know make you scared. Too late, I already knew, but it was useful for my family. I can’t remember what we actually learned. I started to understand after we had some education. Many families who didn’t know anything about mental illness have certainly learned a lot. There is hardly anyone who has the imagination to understand what we are experiencing.

Time

Start of intervention

Not when too ill. I think one of the conditions should be to understand that you have an illness.

Length of intervention

Something lasting for two years from A to B, filling my every day life. It takes time to see progress both in your self and in others. It is useful having a structure in the beginning, but one might loosen up after a while Something to build up on until we got to know each other. I find it helpful to talk to other patients and their families. It might be easier to join a group with fewer persons.

Structure

Predictability

Single or multi family

The most supportive were the other families It is so personal; I wont share it with anyone.

64

L. NILSEN ET AL.

support between families and patients. It was a place where they could open up and receive great support in their daily struggle: We were struggling towards the same goals, independent of background and social status. The other family members became our greatest support.

Feelings of sadness occurred when listening to how the patients were struggling with their lives; however, the experience of being in the same situation made several feel less alone. Some referred to this as sharing a “common fate” and a “mutual comfort.” Others felt an encouragement in seeing others suffering from more severe illnesses than their own family member. As one father said: “I would say that success is good but others’ misery is, you know . . .” The meetings were described as being both hurtful and relieving. Listening to others and knowing that you no longer were alone was important. Some described the meetings as a debriefing procedure and of great importance in easing feelings of shame. Anxiety and Tension When participating in a family intervention, patients and family members are supposed to expose their feelings. This can be difficult in the beginning, and the levels of anxiety and tension are described as a journey from insecurity to security by most of the participants. Insecure-Secure Participating in the intervention was experienced as difficult. Insecurity was described by participants as feeling shy, being more a listener than a talker, and not being able to talk as much and as easily as they usually did. Anxiety before and during the meeting was, for some, translated into a feeling of relief on their way home. This insecurity lasted throughout the intervention for some participants, while it became less pronounced for others. As one patient described, “It was difficult in the beginning; it takes time to get to know each other.” The insecurity made some want to cry, some to become more talkative than usual, and some to become more silent. For some participants, their insecurity caused them to participate more actively, while for others it caused them to participate less actively. The feelings were related to sharing their struggles and knowing that the others in the group were looking and listening. The feelings seemed to fluctuate, and when participants were having a bad day the tension felt worse than when they were having a good day. However, the group leaders’ ability to ask the right questions made the situation feel more secure. Family members described the meetings as a safe place with much humour. The patients’ determination to be open made it possible to bring in themes that were difficult to talk about at home. As one mother said: “I remember looking forward to bringing in themes to talk about in the meetings, themes I could not talk about with [patient] alone.” Family members also described the patients’ insecurity. They thought that worrying could be good for the patients to a certain extent. They also experienced the environment of the

meetings as being more secure as the intervention went along and as the patients became more talkative. The size of the group also is a matter for consideration, with participants reporting that having fewer patients in the group created less anxiety: “After a while the group was reduced to only two patients and those still participating became more talkative.” Knowledge and Learning Experiencing a psychotic illness, whether as a patient or family member, creates difficulties. All the participants appreciated learning more about the illness, which in turn helped them better cope with these difficulties. Listening to skilled, professional, health providers and sharing real life stories with each other were of crucial importance. Education Patients’ experiences of the educational element of the intervention differed in several ways. Some hardly remembered joining the survival skills workshop. Some patients were well informed about psychosis prior to the intervention. Family members experienced less pain and guilt after the education. Some found the education useful in other ways, as one patient stated, “I gained knowledge about fiction and reality and that I might have mixed them up during a psychosis.” Some patients discovered they had much knowledge and thoughts about psychosis and the healing process. Knowledge made patients less scared and more able to make plans for the future. Family members also differed in their experiences. Education was important for those who knew little or nothing about the illness; others needed some repetition of information, while others knew a lot from other lectures, literature, and the Internet. For some, knowledge about the illness made it seem more harmless than previously believed. Sharing Experiences Patients realised that sharing their own experiences with their family provided the family members with useful knowledge. As one patient described, “There is hardly anyone who has the imagination to understand how and what we are experiencing.” Listening to real life stories helped families to imagine, or in some way understand, how it really was to be psychotic. Some families realised that they had put too much pressure on their daughter or son and understood that some of their child’s symptoms were due to reduced capacity rather than laziness and stubbornness. They also managed to talk more openly about the illness, to take one step at a time, and to understand the amount of time it takes to recover. “If we knew what schizophrenia was, we would not have put so much pressure on [patient].” Listening to the patients’ stories gave a unique insight into the “world of psychosis” which was quite different from what was discussed in the survival skills workshop. Knowledge made some able to appreciate the small things in their everyday life, and to not focus on how much better they thought everything would be if their son or daughter were better.

PSYCHOEDUCATIONAL FAMILY INTERVENTION

Time Participating in a family intervention is demanding. The question of the appropriate time to be introduced to the intervention, and the length of the intervention, was experienced as important for the participants. Start of Intervention Patients participated in the intervention because of their families, or because they were involved in a good healing process. One of the patients had participated in two family intervention groups, the first just after his first psychotic experience. His family participated throughout the whole intervention, but he only attended two meetings. He wanted to get back to his normal life and not dwell on his psychosis. After his second psychotic episode he joined a second group and explained why he continued in this group: “I think you have to understand that you have an illness.” Family members experienced that they were ready to participate from day one of the illness, but they also realised that the intervention was too exhausting for the patients directly after a psychotic episode. As one family member said, “The patients must be able to concentrate, take some medication, and not be too suspicious about others.” Family members realised that patients often joined the group for the sake of their families. They also wondered how beneficial the intervention was for those struggling with severe psychotic symptoms. Length of Intervention Patients experienced that they needed the whole intervention period to see progress both in themselves and in others. The group was considered important in patients’ lives, helping them to feel occupied during the week, with one saying it was “something lasting for two years, from A to B, filling my everyday life.” Family members described the intervention as demanding. However, knowing there was an end point, and recognising the patients’ motivation, made them participate for the duration of the intervention. Participating in the group made the families feel an important part of the treatment. Structure Knowing what to do and what to expect during the intervention was seen as important. Furthermore, participants had different reasons for joining either a single- or multi-family intervention. Predictability Every meeting had a time frame and a structure to be followed. When patients were having a bad day with symptoms, this predictability was important for them and when the structure slipped it was experienced as tiring. One of the patients described how she felt when the meeting lasted ten minutes longer than expected: “It was exhausting when the meeting lasted much longer than agreed.” Some became more talkative when having

65

a bad day and felt responsible for taking up too much time. As one patient described: When having a bad day I often felt that the structure slipped. I talked too much and used up too much time, and I would have liked to be stopped. The group leaders could have summarised my talking.

All participants described the structure as important, as one father said, “I am a man who likes to know what I am supposed to do.” The families also recognized the importance of having a structure and predictability, especially when the patients were having a bad day. Single- or Multi-Family Intervention Some of the patients would have preferred a single-family intervention in order to have fewer people to whom to relate. Some felt that it was difficult to talk in a group with 10–15 people. As one patient said, “In a single-family treatment I would have managed to bring up more problematic themes.” On the other hand, some of the patients found it helpful talking to other families as these other families had been through the same struggles. Family members’ points of view were similar. Some would have preferred a single-family intervention, knowing that the patient was struggling to talk in front of a group. Others found it useful at an early stage of the illness when families were not able to talk openly with each other. For some, single-family intervention was perceived as the only choice. As one mother said, “It is so personal; I won’t share it with anyone.” Some families used family intervention activities at home between meetings, while saying that what they found most helpful was sharing experiences with other families in similar positions: “I don’t think single family treatment is something for us. [Patient] has been open-minded about his illness and we have experienced a lot being a part of a group. DISCUSSION The present study identifies six themes concerning family interventions that are important for both patients and their family members: Alliance, Support, Anxiety and Tension, Knowledge and Learning, Time, and Structure. A good relationship with the group leaders was important in preventing dropout. Meeting others in a similar situation resulted in less feelings of shame and increased hope for the future. Real life stories were more important for gaining new knowledge about psychosis than were lectures and workshops. However, many patients experienced anxiety and tension during the meetings. The group format was demanding for patients immediately after a psychotic episode and for patients still struggling with distressing psychotic symptoms. Alliance and Support The alliance and the relationship between the group leaders and participants throughout the intervention were important. Participants saw the “joining in” phase as the beginning of an

66

L. NILSEN ET AL.

important relationship and the foundation of the whole intervention. This is in line with research showing that the quality of the emotional and therapeutic alliance is a key factor in treatment (Barrowclough, Meier, Beardmore, & Emsley, 2010). According to Bordin (1994) the therapeutic alliance consists of three mutually dependent factors: an agreement of the therapeutic goals; what methods and techniques are used; and the emotional bond characterised by warmth, mutual thrust, and confidence. The first two factors are described as important in the “joining in” phase, which is when an agreement on goals is developed and the group leaders describe the intervention. In the present study, a lack of such preparation is described as a reason for not joining the intervention. Emotional bonds are described as the ability to express a caring attitude towards another person and to understand other people’s experiences (Bohart, Elliot, Greenberg, & Watson, 2002). In this study, an emotional bond is described as an important factor in allowing the patient to be open and honest. Family members and patients found the interpersonal relationships to be important factors in the intervention. Anxiety and Tension Patients and family members differed regarding anxiety and tension. Family members seemed to be more secure participating in the group than the patients were. The level of anxiety and tension in the group is related to the patients’ ability to talk about their struggles. This is of interest as research on the level of Expressed Emotion (EE) has shown that an environment with a low response style in critical comments, low hostility, and a lack of over-involvement are essential for the healing process, especially for long-lasting, severe mental illnesses (Brown & Rutter, 1966; Leff & Vaughn, 1985). Later research has verified this, with regard to critical comments and hostility, in FEP. The same attitudes as those found in families are found in studies concerning professional caregivers. The findings suggest that high EE is related to the patients’ level of functioning and to the amount of openness and internal attribution from the caregivers (Berry, Barrowclough, & Haddock, 2010). Openness and attribution could therefore be important factors in creating an environment for growth and development in patients experiencing FEP. Knowledge and Education Psychoeducational approaches have been developed to increase knowledge and insight in order to enable individuals to cope in a more effective way with their illness (Xia, Merinder, & Belgamwar, 2011). Even though psychoeducation is important, there are several factors to consider regarding how this knowledge is introduced to the participants. Family members seem to experience knowledge concerning psychosis as important in the early phase of the illness. This is in line with other studies, especially concerning EE, where education is more likely to

be useful when provided at an early stage of the illness (Tarrier et al., 1988). What seems to be underestimated, though, is the importance of listening to real life stories. The ability to understand how it feels to experience a psychosis and the struggle to overcome difficulties following the psychosis is reported in this study to be of crucial importance, especially for the family members. Increased knowledge about psychosis had a positive effect on the family members’ attitudes towards the patient. Knowledge about the stress-vulnerability model and its importance for preventing relapse is well-documented (Nuechterlein & Dawson, 1984; Zubin & Spring, 1977). This knowledge made both the patients and their families able to take the time needed and not rush into demanding projects beyond the threshold of the patients’ capacity. Recent literature emphasises the importance of empowerment in helping patients take charge of their own life and making decisions on their own (Grealish, Tai, Hunter, & Morrison, 2011). This is in line with the present study where the experience of being listened to and being able to talk about their experiences is viewed by patients as being positive and helpful in the healing process. The experience of empowerment increased when patients learned new coping strategies through discussions and when they felt they could make their own decisions concerning their situation. When the group was able to validate an individual patient’s struggles it was empowering and made the patient feel respected, listened to, and understood. Time Family members described the importance of beginning the family intervention early in the course of the patients’ illness. This is in contrast to the patients, who described getting back to their ordinary lives as most important. The patients’ view was that it was better not to rush into the intervention, but to begin during a more stable phase of the illness. In spite of the differences between patients and family members concerning the start of the intervention, they seem to agree on the length of the intervention. Joining an intervention lasting for one or two years made the patients feel occupied during the week. Families felt it was demanding, but an important part of the treatment. This is in line with the manual emphasising the importance of a long lasting intervention to make sure the problem-solving model is integrated. Structure The level of stress within the PEMFG treatment is meant to be low. In addition to the “joining in” phase, the structure of the family intervention is meant to help the participants feel less anxious (McFarlane et al., 1991). In this study all the participants experienced that knowing what to do and what to expect during the meetings was important. Patients need more structure, especially when they are struggling with psychotic symptoms. This is in line with previous studies concerning the treatment

PSYCHOEDUCATIONAL FAMILY INTERVENTION

environment for patients with psychosis where patients prefer a climate emphasising structure and predictability (Friis, 1986; Rossberg & Friis, 2003). The decision of whether to participate in a single- or a multi-family intervention differed between the informants in the present study. The benefits of participating in a multi-family intervention seemed to depend on each patient’s social skills and level of distressing psychotic symptoms. The decision of whether to join a single- or a multi-family intervention needs to be individualized during the alliance phase. This is in line with the Pyramid of Family Care model developed by Mottaghipour and Bickerton (2005). In collaboration with the families, therapists need to find the right level of intervention depending on the readiness and needs of the family (Mottaghipour & Bickerton, 2005). METHODOLOGICAL CONSIDERATIONS Findings from a qualitative study are not able to be generalized in a statistical sense for the population as a whole, but are rather descriptions and theories applicable within a specified setting (Malterud, 2001). The time between the end of the intervention and the data collection (interviews) varied between 1 and 12 months. Most of the patients were interviewed between six and eight months after the end of intervention. This time span might have influenced the patients’ and family members’ perception and experiences with the intervention. This may be due to recall bias and the possibility that patients, as time goes on, seem to remember more positive than negative experiences. The research coordinators who asked patients to participate could also have influenced the sample. They might have asked patients to participate who were more likely to say yes than no. As far as the authors know, only one patient who was asked to participate said no because he did not want to remember that part of his life. In this study, Malterud’s recommendations about reflexivity and transferability to ensure trustworthiness are used (Malterud, 2001). Reflexivity refers to the researcher background and position and the way it could affect judgments of all part of the research. The first author is a PEMFG leader with experience conducting and supervising the intervention with patients who have different diagnoses, but not in an early intervention setting as described in this study. The possibility of having preconceived notions regarding the material was thoroughly discussed within the research team. Throughout the analysis process, individual and mutual interpretations were discussed until agreement was reached. CONCLUSION Patients and their families experienced important outcomes from a family intervention after a first episode psychosis. Group leaders need to recognise the patients’ level of anxiety before and during the intervention and consider the different needs of

67

patients and family members regarding when the interventions begin, the group format, and the patients’ level of psychotic symptoms. An appraisal of the findings in the present study would help tailor family interventions to better satisfy the needs of patients and family members. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

REFERENCES Anderson, C. M. (1986). Schizophrenia and the family: A practitioner’s guide to psychoeducation and management. New York, NY: Guilford. Askey, R., Gamble, C., & Gray, R. (2007). Family work in first-onset psychosis: A literature review. Journal of Psychiatric and Mental Health Nursing, 14, 356–365. Barbato, A., & D’Avanzo, B. (2000). Family interventions in schizophrenia and related disorders: A critical review of clinical trials. Acta Psychiatrica Scandinavica, 102, 81–97. Barrowclough, C., Meier, P., Beardmore, R., & Emsley, R. (2010). Predicting therapeutic alliance in clients with psychosis and substance misuse. Journal of Nervous and Mental Disease, 198, 373–377. Berry, K., Barrowclough, C., & Haddock, G. (2011). The role of expressed emotion in relationships between psychiatric staff and people with a diagnosis of psychosis: A review of the literature. Schizophrenia Bulletin, 37(5), 958–972. Bohart, A., Elliot, R., Greenberg, L. A., & Watson, J. C. (2002). Empathy. In J. C. Nordcross, ed., Psychotherapy relationships that work: Therapist contributions and responsiveness to patients (pp. 89–108). New York, NY: Oxford University Press. Bordin, E. S. (1994). Theory and research on the therapeutic working alliance: New directions. In A. O. Horvath & L. S. Greenberg (Eds.), The working alliance: Theory, research and practice (pp. 13–37). New York, NY: John Wiley. Brown, G. W., & Rutter, M. (1966). The measurement of family activities and relationships. A methodological study. Human Relations, 19, 241–263. Dixon, L., Adams, C., & Lucksted, A. (2000). Update on family psychoeducation for schizophrenia. Schizophrenia Bulletin, 26, 5–20. Dixon, L. B., Dickerson, F., Bellack, A. S., Bennett, M., Dickinson, D., Goldberg, R. W. et al. (2010). The 2009 schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophrenia Bulletin, 36, 48–70. Dixon, L., McFarlane, W. R., Lefley, H., Lucksted, A., Cohen, M., Falloon, I. et al. (2001). Evidence-based practices for services to families of people with psychiatric disabilities. Psychiatric Services, 52, 903–910. Friis, S. (1986). Characteristics of a good ward atmosphere. Acta Psychiatrica Scandinavica, 74, 469–473. Goldstein, M. J., Rodnick, E. H., Evans, J. R., May, P. R., & Steinberg, M. R. (1978). Drug and family therapy in the aftercare of acute schizophrenics. Archives of General Psychiatry, 35, 1169–1177. Grealish, A., Tai, S., Hunter, A., & Morrison, A. P. (2011). Qualitative exploration of empowerment from the perspective of young people with psychosis. Clinical Psychology and Psychotherapy, 20, 136–148. Larsen, J. A. (2007). Understanding a complex intervention: Person-centred ethnography in early psychosis. Journal of Mental Health, 16, 333–345. Leavey, G., Gulamhussein, S., Papadopoulos, C., Johnson-Sabine, E., Blizard, B., & King, M. (2004). A randomized controlled trial of a brief intervention for families of patients with a first episode of psychosis. Psychological Medicine, 34, 423–431. Leff, J., & Vaughn, C. (1985). Expressed emotion in families: Its significance for mental illness. New York, NY: Guilford.

68

L. NILSEN ET AL.

Lincoln, T. M., Wilhelm, K., & Nestoriuc, Y. (2007). Effectiveness of psychoeducation for relapse, symptoms, knowledge, adherence and functioning in psychotic disorders: A meta-analysis. Schizophrenia Research, 96, 232–245. Linszen, D., Dingemans, P., Van der Does, J. W., Nugter, A., Scholte, P., Lenior, R. et al. (1996). Treatment, expressed emotion and relapse in recent onset schizophrenic disorders. Psychological Medicine, 26, 333–342. Magliano, L., Fiorillo, A., Fadden, G., Gair, F., Economou, M., Kallert, T. et al. (2005). Effectiveness of a psychoeducational intervention for families of patients with schizophrenia: Preliminary results of a study funded by the European Commission. World Psychiatry, 4, 45–49. Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. Lancet, 358, 483–488. Malterud, K. (2011). Kvalitative metoder i medisinsk forskning: en innføring. (vol. 3, utg.) Oslo, Norway: Universitetsforl. Malterud, K. (2012). Systematic text condensation: A strategy for qualitative analysis. Scandinavian Journal of Public Health, 40, 795–805. McFarlane, W. R., Deakins, M., Gingerich, S. L., Dunne, E., Horen, B., & Newmark, M. (1991). Multiple-family psycho educational group treatment manual. New York, NY: New York State Psychiatric Institute. McFarlane, W. R., Dixon, L., Lukens, E., & Lucksted, A. (2003). Family psychoeducation and schizophrenia: A review of the literature. Journal of Marital and Family Therapy, 29, 223–245. McNab, C., & Linszen, D. (2009). Family interventions in early psychosis. In H. J. Jackson & P. D. McGorry (Eds.), The recognition and management of early psychosis. A preventive approach (2nd ed., pp. 305–329). Cambridge, UK: Cambridge University Press. Mottaghipour, Y., & Bickerton, A. (2005). The pyramid of family care: A framework for family involvement with adult mental health services. Advances in Mental Health, 4, 210–217. Murray-Swank, A. B., & Dixon, L. (2004). Family psychoeducation as an evidence-based practice. CNS Spectrums, 9, 905–912.

NICE National Collaborating Centre for Mental Health. (2010). Schizophrenia: Core interventions in the treatment and management of schizophrenia in adults in primary and secondary care. (updated ed., vol. 82). London, UK: The British Psychological Society and The Royal College of Psychiatrists. Nuechterlein, K. H., & Dawson, M. E. (1984). A heuristic vulnerability/stress model of schizophrenic episodes. Schizophrenia Bulletin, 10, 300– 312. Pharoah, F., Mari, J., Rathbone, J., & Wong, W. (2010). Family intervention for schizophrenia. Cochrane Database of Systematic Reviews, 12, CD000088. Pitschel-Walz, G., Leucht, S., Bauml, J., Kissling, W., & Engel, R. R. (2001). The effect of family interventions on relapse and rehospitalization in schizophrenia—a meta-analysis. Schizophrenia Bulletin, 27, 73–92. Rossberg, J. I., & Friis, S. (2003). A suggested revision of the Ward Atmosphere Scale. Acta Psychiatrica Scandinavica, 108, 374–380. Rossberg, J. I., Johannessen, J. O., Klungsoyr, O., Opjordsmoen, S., Evensen, J., Fjell, A. et al. (2010). Are multi family groups appropriate for patients with first episode psychosis? A 5-year naturalistic follow-up study. Acta Psychiatrica Scandinavica, 122, 384–394. Tarrier, N., Barrowclough, C., Vaughn, C., Bamrah, J. S., Porceddu, K., Watts, S. et al. (1988). The community management of schizophrenia. A controlled trial of a behavioural intervention with families to reduce relapse. British Journal of Psychiatry, 153, 532–542. Xia, J., Merinder, L. B., & Belgamwar, M. R. (2011). Psychoeducation for schizophrenia. Cochrane Database of Systematic Reviews, CD002831. Zhang, M., Wang, M., Li, J., & Phillips, M. R. (1994). Randomised-control trial of family intervention for 78 first-episode male schizophrenic patients. An 18month study in Suzhou, Jiangsu. British Journal of Psychiatry Supplement, 96–102. Zubin, J., & Spring, B. (1977). Vulnerability—a new view of schizophrenia. Journal of Abnormal Psychology, 86, 103–126.

Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.

Patients' and family members' experiences of a psychoeducational family intervention after a first episode psychosis: a qualitative study.

The objective of this study is to explore patients' and family members' experiences of the different elements of a psychoeducational family interventi...
176KB Sizes 0 Downloads 0 Views