Abstract
Background:
Social interventions to support people with severe mental illness are important to improving the quality of life. The perspectives of users are essential in this process. This article explores users’ experiences, investments and concerns of a befriending programme.
Material:
Focus group and individual qualitative interviews with service users.
Discussion:
Overall, the experiences with the programme were positive, and the social interaction was highly valued. However, that the relationships were arranged and facilitated by mental health workers remained an unresolved concern even after several years.
Conclusion:
People with severe mental illness benefit from relationships despite the need of professional assistant.
Keywords
Introduction
Social isolation and loneliness are common to people with severe mental illness (SMI) (Müller, Nordt, Lauber, & Rössler, 2007). Moreover, ongoing relationships are often unstable (Harley, Boardman, & Craig, 2012; Thompson, Valenti, Siette, & Priebe, 2016). Much research suggests that people with SMI often find it difficult to initiate and establish new friendships (Thompson et al., 2016). Furthermore, stigma and discriminations towards people with SMI complicate the development of social relations. Research has shown that social isolation and loneliness (Cacioppo & Hawkley, 2009; Cornwell & Waite, 2009) affects the mental and somatic health of people with SMI and is associated with poor illness outcomes (Davidson, 2007; Giacco et al., 2012; Horan, Subotnik, Snyder, & Nuechterlein, 2006). People with SMI thus experience a wide range of barriers in acquiring and maintaining social relations.
Consequently, an important task for mental health services is to support people with SMI in building and sustaining social networks. Several studies have investigated how to enhance social inclusion with the aim of improving quality of life, community integration and reducing negative effects of social isolation upon mental state of health such as hospitalization and impairment of symptoms. A review of studies investigating the effectiveness of social inclusion interventions shows an increase in patients’ social network size as well as improvements in self-esteem and quality of life (Anderson, Laxhman, & Priebe, 2015). The studies included in the review cover different interventions, such as staff-supported engagement in community activities, matching of people with SMI with volunteer partners or professionally facilitated peer support, for example, talk groups. The review does not show which intervention components are particularly effective, but it suggests that effectiveness in improving social networks is possible when interventions directly targeted social isolation.
However, studies within this field have intervention outcome as the primary aim, for example, activities carried out, effect on social isolation and mental health (Muir, Fischer, Abello, & Dadich, 2010). Only a few studies concentrate on users’ and/or volunteers’ experiences and opinions of the programmes (Hallett, Klug, Lauber, & Priebe, 2012; Jensen, Lou, Aagaard, & Væggemose, in press). The few studies of users’ perspectives of volunteer befriending intervention show, in general, that the users feel they benefit substantially from participating in the programme and that the programme has helped them in handling their social isolation (Macdonald, Jackson, Hayes, Baglioni, & Madden, 1998; Mccorkle, Dunn, Wan, & Gagne, 2009; Trompenaars, Masthoff, Van Heck, De Vries, & Hodiamont, 2007). Befriending programmes where people with SMI are paired with volunteers seem to have beneficial effects. However, more substantial knowledge is needed about how these relations are established and maintained as well as longitudinal perspectives on the users’ experiences and opinions of participating in such programmes. The aim of this study was to explore users’ experiences with a befriending programme called ‘Community Families’ (CF) and how the users benefit or face challenges by participating. Thus, the study will provide essential knowledge in the further development of intervention supporting people with SMI in building and sustaining social networks.
Methods
To explore considerations, perceptions and experiences of the CF programme from the users’ perspectives, a qualitative methodological approach was chosen (Bourgeault, Dingwall, & De Vries, 2013).
Background
CF is a Danish community-based mental health programme, where individuals who have SMI are offered regular contact with selected volunteer families. The programme was introduced in one municipality in each of the five regions of Denmark. In each municipality, the programme was organized by a mental health worker (CF coordinator) who recruited and matched people with SMI (referred to as ‘participants’ in the remaining of this article) and volunteer families and facilitated an introductory meeting between the two parties. If this meeting was successful and both parties wished to continue in the CF programme, they were encouraged by the mental health worker to continue the relationship on their own. Interferences by the professionals generally only took place by request of one of the parties. Typically, the participant met with the family twice a month at the family’s residence to engage in everyday activities together.
A comprehensive research project was carried out to investigate qualitative and quantitative effects of the programme. This article presents one of the sub-studies, focusing on experiences and perspectives among the participants.
Participant recruitment
A total of 20 participants were purposively/strategically sampled from all CF participants (43 participants) based on age, gender and time in the CF programme (see Table 1). Potential participants matching the sampling strategy were identified by the CF coordinators and sent a letter of invitation to participate in a qualitative interview regarding their experiences with the CF programme. All invited participants agreed to be interviewed and recruitment continued until data saturation was met. The majority were interviewed once; however, two participants were interviewed twice: shortly after inclusion in the CF programme and 2 years later. This was done as part of two case studies to obtain an insight into developments and changes occurring over time and the long-term experiences of participants.
Characteristics of interviewed participants.
Two interviewed participants (female) were interviewed twice.
Data collection
First, two focus group interviews were conducted. These were guided by a semi-structured interview guide with topics focusing on participants’ motivations for, expectations with and experiences of being part of the CF programme. During focus groups interviews, interviewers were careful to include the viewpoints of all participants and to encourage dialogue within the group.
In order to more intimately explore the insights gained from the focus group interviews, 13 individual interviews with participants were subsequently conducted. The individual interviews were based on a narrative approach to gain in-depth insight into the participants’ life stories (Andrews, Squire, & Tamboukou, 2013). However, the interviewer was careful to also cover the topics of motivation, expectation and experience in relation to participation in the CF programme. The two participants who were interviewed twice – together with the time span of participation in the CF programme for the other participants – added a longitudinal perspective to the material (Hermanowicz, 2013; Saldaña, 2003; Thomson & McLeod, 2015).
All individual interviews took place at a location of the participants’ choice, mostly in the participants’ home or at a community mental health facility. All interviews were audio-recorded and subsequently transcribed verbatim.
Analysis
The interviews were analysed in close collaboration with all authors using thematic analysis (Braun & Clarke, 2006). The transcribed interviews were read thoroughly, and themes were generated through discussions. The overall themes were subdivided into codes, which formed the basis for the coding carried out using the software program NVivo 9. During the coding process, the researchers continued being alert to new themes showing up in the material. Subsequently, condensation was generated, themes were reviewed and defined and relations between these were elaborated. The analytical process yielded two themes and nine subthemes (Table 2).
Themes and subthemes generated through the coding process.
Ethics
Danish legislation requires no official ethical approval for qualitative interview studies (National Committee on Health Research Ethics, 2015). However, planning and execution of the study was conducted in accordance with the ethical guidelines of the American Anthropological Association (2012). Doing research with participants with SMI requires continuous ethical considerations during the research process. For example, some of the participants called repeatedly to warrant their anonymity and guarantee that audio-recordings would subsequently be destroyed. Furthermore, as some interviews made participants recall harsh memories, we made sure that a mental health worker known to the participant was available for subsequent comfort and supervision.
Results
All participants had a long-lasting history of SMI and extensive experience as service users of the mental health system in both hospitals and the community. The livelihood of the majority was a disability pension, though a few had part-time work. None of the participants were married or had children, and all lived either alone or in shared flats or sheltered housing. One participant had felt somewhat pressured by her mental health contact person to apply for a CF, but all other participants had felt a strong motivation for applying and many clearly expressed that this was an initiative that they had eagerly waited for.
Motivations and expectations
As the majority of participants had very limited social networks and/or limited and/or problematic contact with family members, a main motivation for applying for a CF was to establish a safeguard against loneliness. Many participants expressed that such a relationship was hoped to provide peace of mind:
I actually don’t have a network up here, and I also wanted to have a family that I could use as my own family. Also so I had something to look forward to. (Michael)
Many participants were motivated by hopes of a relationship with an adult outside the mental health care system. Thus, a relation was envisaged to include someone to talk with about anything and everything, someone to discuss private issues and someone to have fun with. Participants reported that they hoped to enjoy a relationship without an agenda:
I look a little more on the bright side, also when you talk to them [the family] that it isn’t a professional relation. But you can have an ordinary talk about, well, why don’t you do like that or that. That you get some good advice, instead of it’s always the professionals who are saying: No, but you have to do like this and that. So it’s a different manner – yes, like a little vacation, actually. To go down there and just be yourself. (Mary)
However, the participants not only hoped for a friend but also a family. This included getting insight into ‘normal family life’, having contact with children and doing family things like going for a picnic or going shopping. Many of the participants came from what they themselves described as ‘dysfunctional families’ and had experienced many and serious betrayals and disappointments in their own families. Thus, the recurring motif was longing for a well-functioning family, nevertheless without being able to explicitly express what a well-functioning family was:
Some sense of security and social relations […] I haven’t really had any family or anything, so I’m not used to being around children. So that’s also something I’ve had to learn. I don’t have like a natural [attitude towards …] bodily contact and to hold someone tight and the like. That I have to grow accustomed to. […] Then we have a cup of coffee and spend time with the kids, perhaps we play something. And sometimes I’ve been there to eat dinner. At Christmas, […] because she’s a gardener and very good at making floral decorations, so she’s helped me with that. It gives something for my self-esteem to be able to do such things. I’ve been very happy about this. (Alma)
Finally, the participants all expressed a hope and expectation that the CF would provide a refuge or a safe haven from the mental health system, where relations with other (professional) adults often include a professional purpose. This motivation should be seen in light of the limited and fragile social network of the participants, where the majority of their activities were arranged by and within the social psychiatric health care system.
Thus, the motivations and expectations in applying for a CF were closely interlinked and predominantly positive. However, the participants also expressed concurrent feelings of concern and even anxiety. Almost all expressed some initial worries about a successful outcome and two additional major concerns. First, many participants were concerned about betrayal. That the family would let them down, end the relationship or hurt their feelings. Second, several participants were initially concerned about their own abilities and they were insecure about whether they were able to live up to the families’ expectations and to be part of ‘normal’ life. These also included practical concerns, such as using public transport, that smoking was not allowed inside, and not knowing how to handle children.
In sum, the participants’ motivations and positive expectations intermingled with concerns about success and an acknowledgement that participation in a CF required personal investments and, consequently, a risk of losing and failing.
Experiences
Despite concerns and apprehensions before entering into the CF programme the participants, in general, spoke very enthusiastically about being part of a CF and reported multiple positive experiences and lessons learned.
The most commonly referred experience gained was the comfort, happiness and sense of gratitude that this ongoing relationship outside the mental health system generated. Participants appreciated the everyday activities that they engaged in with the family:
We’ve eaten together and once she called me to tell me to arrive a little bit earlier because they would then pack a picnic. Then we drove to the beach and had cake and coffee down there. And the girls they played in the sand and one thing and another. And we’ve been at their place and had a barbeque in the garden. It’s been so nice. It really has. (Hannah)
Everyday activities such as lawn mowing, playing cards and an evening in front of the TV were experienced as positive and rewarding. Equally important to the social activities was the experience of ‘having someone in my life’. The participants all reported positive experiences of having someone who thought of them and who cared. It was felt as very important and valuable to have someone to call or someone who might call – even without a special occasion:
We also need to learn that we can just call each other and then chitchat like we did the other day. It means a lot for the rest of the day to have this little talk about all sorts of ordinary things. It’s fantastic, right. (Anna)
It was central to the participants’ experience and appreciation of the relationship that it was based outside the mental health system. As such, the CF lived up to their expectations. The participants appreciated the opportunity to do social activities and engage in relations without having illness, developmental goals and a plan of action as the focus point. They felt more relaxed in the CF and did not feel continuously observed or evaluated as was often the case within the system. Several participants mentioned that in the family they did not have to ‘perform’ and could let go of the mental health language and mindset which they had socialized in over the course of their illness and interaction with the mental health system. The CF was experienced as a time and a place where they were allowed to relax and to have a nice time and where they usually received positive input:
It’s actually wonderful that you don’t just sit talking about illness all the time. But talk about everyday life, small talk about the weather and the like. I’m actually happy that it’s not just illness, illness, illness, illness. (Adam)
Several participants also experienced some challenges, worries and negative experiences in this relationship. Many of the initial and more practical concerns of the participants, such as not being used to children and dogs, facing difficulties with public transportation or getting nervous when mingling in groups of people, were relatively quickly overcome and transformed from concerns to positive outcomes of the CF programme.
Another challenge was indeed the experience of a well-functioning family. This included participating in cosy and joyful interactions but also overhearing daily quarrels and arguments between family members. Some participants considered this difficult and uncomfortable; however, it was also mentioned as fruitful to experience how quarrels can be overcome and do not threaten the relationship or the family. For some participants, being part of family life in all of its complex dimensions resulted in flashbacks of hurtful memories of their own childhood. For example, one participant described her CF as a close-knit, nuclear family with happy children who every day came home to healthy parents. This was in strong contrast to the participant’s own childhood that had been characterized by illness, neglect and a bird as her only confidant. In the beginning of her relations with her CF, this realization evoked hurtful memories.
Despite positive experiences and experience of a good relationship with the family, several of the participants expressed a continuous concern and worry about losing the relationship. Some linked this concern to previous experiences of breach of trust and being rejected. In order not to jeopardize the relationship, some participants reported being ‘extra aware of themselves’ during visits. They were aware of (and worried about) being an inconvenience and thus chose not to reveal themselves completely. Thus, they consciously chose not to involve the family in all the details of their illness history, personal suffering and concerns as they feared it would be too much for the family. This concern was linked to the constant awareness that the CF relation was institutionally initiated and supported and thus somewhat ‘arranged’ and ‘artificial’. Several participants found this rather troubling, although they sought to ignore it. However, the interviews revealed that there was a sense that the relationship was not fully equal and that it sometimes made participants feel that they were indebted or should express gratitude towards their CF.
That the relationship was regarded as ‘artificial’ was attributable to the role of the CF coordinator, who initiated and supported the CF courses which otherwise were based in the civil society. At the same time, this involvement was deemed vital. Thus, there was concord between the participants that it was important that the mental health workers could take part in solving or mediating issues related to the CF. This was experienced as a safety net for the participants which helped them navigate the uncertainties and potential emotional risks involved in engaging in social relations outside the mental health system.
Overall, the current analysis demonstrates that for the absolute majority being part of the CF programme resulted in positive outcomes:
I have more or less felt that I didn’t have anything to live for. But, I feel that I have a little bit now. (Alfred) It has given me trust in people and respect and the like. There probably haven’t been these kinds of relations [before], where I have been used to that. (Alma)
Thus, the analysis established that for many of the participants the positive experiences did exist concurrently with concerns related to the relationship. Regarding the latter, the CF coordinator played an important role in mediating.
Discussion
This study shows that the participants have hopes and expectations related to getting friends or allies outside the mental health system: someone they can talk to, relax with and from whom they can learn about ‘normal life’. The findings show that these expectations are largely met, being part of a family, doing everyday activities and having someone to call and someone who cares was experienced as immensely rewarding. The participants thus highly value the relationship.
However, some participants continued to feel unease about the artificial nature of the relationship and had concerns about scaring off or being dismissed by the family. Thus, the findings point to the stakes and investments required by the participants. Furthermore, they suggest that people with SMI are willing to make these investments and to take a chance, even if failure and disappointment is a possibility, and that the reason for this should be found in the hopes and longings for a steady relationship outside the mental health care system.
In line with the few other studies that have investigated the effects of social inclusion interventions from the users’ perspective (Macdonald et al., 1998; Mccorkle et al., 2009; Trompenaars et al., 2007), this analysis suggests that the participants recognize the CF programme as supportive in building and sustaining social networks. A quantitative sub-study of the present research project showed that there was an overall tendency for the users of the CF programme to reduce psychiatric hospital admission compared to a control group (Villemoes, Aagaard, Væggemose, & Søgaard, n.d.). This result supports other studies, which show similar positive outcomes (Anderson et al., 2015; Cacioppo & Hawkley, 2009; Cornwell & Waite, 2009; Giacco et al., 2012).
In addition to the potential drawbacks suggested in the study by Mccorkle et al. (2009), this study provides further knowledge about the drawbacks as a condition inherent in the programme. The drawbacks are mainly related to the interventions from the mental health system, that the CF coordinator is facilitating the initial state, the matching process and mediating/supporting if deemed needed by one of the parties in the programme. This discloses an interesting ambivalence. The ‘ambivalent drawback’ provides valuable information to practice that the service receivers accept and recognize the necessity of the mental health system assisting them to let go off the system. Furthermore, as a relationship outside the mental health system, outside mental health plans and agendas, is highly valued so is the existence of the ‘safety net’ provided by the CF coordinator.
The developments and changes of the personal challenges were disclosed by the longitudinal perspective. Thus, while some of the challenges, typically of a more practical nature, were relatively quick to overcome, for challenges and worries which had a personal character this was seen to a lesser extent. A recurring and sustained matter was the anxiety of losing the relationship. However, and predominantly, the longitudinal perspective verified that the CF programme entailed many positive experiences and was highly valued.
While the positive output of a programme aiming at social inclusion is recognized in several papers, the drawbacks and challenges as experienced by the users are scanty in the literature (Mccorkle et al., 2009). Thus, by combining the users’ perspective with a longitudinal perspective, this study adds new knowledge to the existing literature on mental health social inclusion programmes. This study suggests that a long-term perspective demands continuing investments from the users to participate in a befriending intervention like the CF. However, knowing that difficulties in establishing social relations are a characteristic of people with SMI, it is a rewarding knowledge that, even if the conditions for engaging remain specific, a fruitful relationship can flourish and sustain across time.
Bringing this study into a wider perspective, other studies suggest that people who do volunteer work within the mental health services are motivated by the opportunity to do good and to have a valuable relationship with a vulnerable human being (Jensen et al., in press; Thompson et al., 2016). Our findings demonstrate that this motivation can be fulfilled in a befriending set-up. However, whether the rewarding experiences acquired through this programme is having an effect on people with SMI’s ability to manage social relations and social life, in general, is a matter that calls for further research.
In sum, this study suggests that people with SMI can benefit from relationships despite the fact that the conditions for engaging the relationship remain specific. It moreover establishes that knowledge about the thoughts and feelings of people with SMI, when considering participation in a programme such as CF, is essential for understanding the barriers in implementing programmes levelled at social inclusion. Thus, this article provides insights that are important in the planning and designing of psychiatric projects involving civil society.
Limitations
To enlighten the research question of the study, the applied methods are deemed appropriate. The people interviewed were, to a predominant degree, representative of the entire group of CF participants. The methods and the data produced through focus group interviews and individual qualitative in-depth interviews, including a longitudinal perspective, provided a solid ground for the investigation from the users’ perspective. Thus, our results add to and support the limited amount of research in this area. However, more qualitative in-depth interviews which have a longitudinal perspective would have provided a deeper insight and added to the solidity of the data material.
Footnotes
Acknowledgements
We are deeply grateful to all the participants, whom all shared very personal, and sometimes, difficult issues during the, often, hour-long interviews. We also wish to thank the Community Families (CF) coordinators for arranging the contact with the participants and the collaboration of the mental health workers who ensured that the participants had a visit the day after the interviews.
Conflict of interest
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This research project was supported by the following foundations: TrygFonden (j.no. 7251-06), The Health Insurance Foundation (j.no. 2006D610), The Danish Ministry of Social Affairs and Integration (j.no. 87132-0374) and SIND (the Danish Association for Mental Health).