Experiences and Challenges in the Role as Peer Support Workers in a Swedish Mental Health Context - An Interview Study

ABSTRACT

The focus on recovery within psychiatric care is increasing, where peer support may play a pivotal role. Previous research shows both mixed and promising results in terms of beneficial outcomes for patients and peer support workers (PSW). The study’s aim was to investigate PSW’ experiences of their professional role and associated relationships with healthcare staff and patients. Semi-structured in-depth interviews were conducted with 10 PSW. Data was analyzed with content analysis. Three themes were constructed; “Experience of stigma”, “Authenticity and balance in the patient relationship” and “Opportunities and setbacks in the team”. Challenges included stigmatization, loyalty conflicts, lack of a clear job description and feelings of insecurity and disinterest among other staff. However, the peer support role was perceived as deeply meaningful. The peer support role comes with challenges and opportunities for the PSW, and potentially for the patients and the surrounding work team. Further research is needed to illuminate the value of peer support for patients, PSW and healthcare staff, and potential barriers and facilitators to the integration of peer support within psychiatric care.

Supplemental data for this article is available online at https://doi.org/10.1080/01612840.2021.1978596 .

Introduction

Peer support workers (PSW) are people with their own lived experience of mental illness who have recovered and who are formally involved in providing support to other individuals with mental disabilities (Mutschler et al., 2021; Solomon, 2004), regardless of whether they share or have shared the same diagnosis or not as the patients they support. They are no longer patients when they start their work as PSW, and they adhere to the same rules and regulations regarding confidentiality and record keeping as other health professionals. To enroll as a PSW, there are no formal requirements other than having a lived experience of mental illness and being recovered. The peer support role is relatively new within health care (Firmin et al., 2019), and different models of implementing peer support have grown exponentially in recent decades, following a more person-centered and recovery-oriented care (Firmin et al., 2019; Mutschler et al., 2021). Peer support services generally include three types of activities, although they may overlap: a distinct set of activities or curriculum including education and the development of coping and problem-solving strategies, activities that are delivered as part of a team that may include non peers (for example, an assertive community treatment [ACT] team), and traditional activities such as forms of case management that are delivered in a way that is informed by a PSW personal recovery experience (Chinman et al., 2014). PSW are trained to use their personal experiences of recovery to help others by means of everything from volunteering to paid full-time employment, and the their work points to a shift toward a care model where reciprocity between caretaker and patient becomes more common, in contrast to a more traditional, paternalistic orientation (Bellamy et al., 2017). The literature describes a number of different peer services that are largely the same although the structure and organization of mental health care may differ between countries. The most frequently reported role for PSW was to share personal experiences and provide mutual aid. Other services included maintenance of community living skills and being a component in the implementation of peer-run education and advocacy programs (Chinman et al., 2014). In the field of mental health, the origin of peer support is to be found within well-established groups such as Alcoholics Anonymous (Crossley, 1999). The phenomenon of peer support has since then grown in complexity, formalization and popularity, with an increasingly clear philosophical basis (Gillard et al., 2017). The use of peers is supported by social modeling theory, which states that other people in similar circumstances might have the most influence on behavior change (Chinman et al., 2014). This survey will focus solely on PSW who are employed within psychiatric care.

The recovery paradigm has become a central focus in psychiatric health in many western countries, so too in Sweden. While a medical paradigm still dominates much of traditional mental health care, there is an increased focus on user involvement. Implementing peer support services within mental health care may contribute to radically challenging the dominant cultures in mental health settings (Rosenberg & Argentzell, 2018). The concept of ‘care’ has been fraught with negative connotations within the disability movement, and concepts of empowerment, choice and control have been developed as alternatives. The peer support movement in the mental health sector draws from this tradition (Scott & Doughty, 2012). Byrne et al. (2016) argue that the development of recovery oriented services requires a strong peer support workforce, with appropriate resourcing and support available in order to facilitate a reform of the current medical model. Empowerment is a key process in recovery and its promotion is a core element of peer support (National Association of Peer Supporters, 2020). Empowerment is however a complex concept and assumed to vary with the context, time and population at stake (Schutt & Rogers, 2009). On an individual level, psychological empowerment has been described as the process by which a person gains control over important areas of life, and has also been referred to in terms of self-efficacy (Bravo et al., 2015; Leamy et al., 2011; Zimmerman, 1995). Decreased empowerment is associated with reduced subjective quality of life in people with mental illness. As a person’s sense of empowerment increases, the personal stigma decreases and stigma can be described as the societal embodiment of dis-empowerment (Burke et al., 2019). PSW can help strengthen empowerment with the help of working relationships built on partnership and hope. A holistic, strengths-based focus can help the individuals develop their own recovery goals, and promote social integration and participation. The quality of the relationships between patients and PSW can be an empowerment promoting factor that creates hope and possibilities to participate actively in the community (Charles et al., 2020; Mutschler et al., 2021; Rosenberg & Argentzell, 2018). Stigmatization involves a process of social exclusion, devaluation and discrimination. Prejudice, ignorance, self-stigma and fear of discrimination make it more difficult for people with mental disabilities to seek help, find social connections, meet a partner or enter the labor market (Burke et al., 2019). PSWs have described stigma and discrimination so prevalent as to be considered a “normal” part of their working life. Professional isolation and attitudinal barriers from colleagues were seen to inhibit the effectiveness of the peer support role (Byrne et al., 2019). The PSW role hence encompasses challenges and opportunities. PSW has shown to be valuable for building an inner resilience to stigma and discrimination by creating hope for patients, staff and organizations (Corrigan et al., 2016).

The PSW model supports recovery as it increases the patient’s hope and self-confidence about a possible change for the better (Burke et al., 2019). PSW assist people with severe mental illness in recovery-oriented interventions with the aim to live what is deemed as a meaningful life, achieve life goals, play an active role in society and decide over one’s own treatment (Corrigan et al., 2007). Health care services are moving in the direction of person-centered care, with active patient participation, self-determination and empowerment in focus.

In recent decades, peer support in the recovery process for all types of mental illness has attracted the attention of healthcare providers in multiple countries, including USA, Netherlands, Australia, New Zealand and the United Kingdom (Watson, 2019). PSW are being implemented increasingly in lower-resource settings as a cost-effective approach and as a form of ‘task-sharing’ to help support the service delivery of already strained and overwhelmed mental health systems. Overall, peer support has been identified as a central approach to recovery, and is endorsed by psychiatrists (Charles et al., 2020). The financial benefits of employing peer support workers do indeed exceed the costs, in some cases by a substantial margin (Burke et al., 2019; Solomon, 2004). The evidence for this finding is however limited in both quantity and quality, and more research is needed when it comes to cost effectiveness (Trachtenberg et al., 2013). As peer support services are becoming established, organizations such as the International Association of Peer Supporters are developing standards of practice (Chinman et al., 2014). However, in Sweden PSW have not been employed until recently. The first Swedish PSW were participants in the PEER Support project that was started in 2016 by The Swedish Partnership for Mental Health (NSPH), a network of organizations for patients, users and family carers in the mental health field. NSPH developed a national platform with guidelines and frameworks for a 5-week course in peer support. The PSW were then employed in health care or municipal social psychiatry in four of Sweden’s 21 regions. As of today, there are around 50 active PSW in Sweden. The project’s long-term goal was for PSW to become a natural part of Swedish healthcare in both outpatient and inpatient care (Nationell samverkan för psykisk hälsa, 2020). An evaluation of the project shows several positive effects. Patients had received support from PSW in a number of concrete ways: through conversations, exercise, and study circles. The PSW had helped to create structure in patients´ everyday lives, reduce self-stigma and increase self-confidence in patients. Increased and improved communication with patients was also highlighted. Non-peer workers mentioned that they had become better at taking a patient perspective, with increased knowledge and understanding of the patients. However, the planning and anchoring of PSW’ work needed to improve. In addition, the evaluation showed that the division of responsibilities between collaborating parties should be clarified (Gustavsson & Ingard, 2018; Wenzer, 2018). The findings are in line with two systemic reviews (Charles et al., 2020; Mutschler et al., 2021).

The evidence for the benefits of PSW shows mixed and contradicting results. Positive results are seen in the areas of improved quality of life, hope and empowerment, especially for patients with severe mental illness and several qualitative and observation-based studies confirm that peer support has clear benefits (Firmin et al., 2019; Repper & Carter, 2011). The formal task as PSW has been associated with improved quality of life, reduced symptoms and increased self-reported recovery in the individuals who receive support from PSW (Firmin et al., 2019). A Cochrane review showed that the results for patients supported by PSW were equivalent to those supported by other psychiatric staff. In some studies peer support has shown results, such as reduced perceived need for coercive measures and medication, that are superior to those produced by other health care professionals (Burke et al., 2019; Davidson et al., 2004; Sells et al., 2006). Overall the weight of evidence indicates positive outcomes including empowerment, hope, social relationships, self-efficacy, recovery, symptomatology and reduced readmissions to acute care (Charles et al., 2020; Mutschler et al., 2021).

On the contrary, a number of randomized controlled studies and systematic literature studies do not indicate improved results when PSW is compared with other forms of psychiatric support (Lloyd-Evans et al., 2014). However, these trials do not measure the results of people’s experiences of PSW but focus only on quantifiable results, such as the number of days in inpatient care (Gillard et al., 2017). Critical arguments against peer support emphasize that the values associated with PSW belong in the private sphere, between people who are close to each other and support each other emotionally (Mead & MacNeil, 2006). For many people, this form of private support is something very different from—perhaps even contradictory to—psychiatric care (Faulkner & Basset, 2012), implying that PSW is beneficial for those without private networks. Offering support to others has shown to help PSW in their own recovery journey (Bailie & Tickle, 2015; Burke et al., 2019).

Effective teamwork requires that all team members are familiar with each other’s roles and responsibility. Highlighting PSW as a new occupational category may help illuminate the PSW contents and promote an understanding of the experiences of PSW. Despite a growing interest in peer support in the field of mental health, there are only few studies that examine the deeper meaning of the peer supporter role (Watson, 2019). A more comprehensive understanding of the mechanisms underlying peer advocates’ unique ability to contribute to recovery is needed (Chinman et al., 2017; Lloyd-Evans et al., 2014).

Aim

The aim was to examine peer support workers’ perception of their role and associated relationships with health care professionals and patients.

Ethical considerations

The local Board of Ethics at the Department of Health Sciences at Lund University granted the study. Participants were informed, in writing and orally, about the purpose of the study, that it was voluntary to participate and that they were free to end their participation at any time. All informants signed an informed consent prior to the interview.

Method

Design

In this qualitative descriptive study (Sandelowski, 2000) a semi-structured interview guide with open questions was used to collect data and to explore the participants’ lived experiences of the peer supporter role. The transcribed interviews were analyzed using content analysis at a latent level (Lindgren et al., 2020).

Participants

Convenience sampling was applied by targeting those PSW who are currently or have been employed in outpatient or inpatient settings within general adult psychiatric or psychosis care in Sweden as they have first-hand experiences of the peer supporter role. Mental health care in Sweden is divided between the municipal-based social psychiatry and hospital-based psychiatry. Only PSW employed within the hospital-based psychiatry were included. The PSW were no longer patients themselves but had recovered from serious mental illness. No delimitations were made in terms of age, gender or number of working years.

Contact was made with PSW-coordinators in three Swedish regions. One of them provided contact information to, and informed the 12 peer supporters in the region. Out of these 12, seven PSW expressed their interest to participate via email to the authors (AW, TL). The coordinators in the other two regions contacted a total of five PSW, three of whom expressed their interest to participate in the study. Consent to contact the PSW was obtained from the relevant managers.

Ten informants participated, out of which eight were women and two men. Several of the informants had previous experience of human care work, such as teacher assistant or care assistant. They all had different experiences of severe mental illness, such as bipolarity, psychosis, emotional instability, anxiety and depression. All had been admitted to psychiatric inpatient care at some point. The age range between the youngest and the oldest informant was 35 years. All PSW were employed as peer supporters. Only one of the interviewees worked in inpatient care, but three people had done so before, including an intermediate care department. Other informants worked in outpatient care at a psychosis clinic or general psychiatric clinic. One informant was employed by the hospital but currently worked in a municipality setting. Their experience as PSW varied between 6 months and 8 years.

There is no national standard for the training of PSW in Sweden. The informants had participated in NSPH’s 5-week long training course, of which 2 weeks were self-study. The course included theory, lectures, role plays and other exercises. There is no generally established job description for PSW. The participants’ tasks varied depending on their respective work context. Supportive conversations with focus on recovery, based on their own experiences, were emphasized as the most important task. Further tasks included taking part in treatment conferences, consultation reviews and home visits, helping patients make a lifeline and compile a health plan. The PSW also led various educational or supportive groups, either on their own or together with other staff. The groups were recovery-oriented, with activities such as yoga, painting and outdoor walking. The PSW leaned on evidence-based material such as the Recovery Guide (Allaskog & Andersson, 2020) and Narrative Enhancement Cognitive Therapy (NECT) (Roe et al., 2014). Time was also spent on renewing or creating own material.

Data collection

The interviews were conducted individually by the first authors AW and TL. The first six interviews took place face-to-face. The following four interviews were conducted via the video communication platform Zoom or telephone due to the Covid-19 pandemic. A semi-structured interview guide was used with questions that tapped into the informants’ inner experience of the relation to patients and colleagues but also aimed to illustrate the outer characteristics of the day-to-day working tasks (see Supplement). The interviews were recorded and transcribed verbatim.

Analysis of data

Data was analyzed with qualitative content analysis at a latent level (Lindgren et al., 2020). Initially, the transcribed interviews were read several times to get an overview and thorough understanding of its contents. The text was then divided into meaning units that were later condensed and coded. AW and TL grouped the codes into sub themes and themes, based on similarities and differences of their contents. During later stages of the analysis process, the empirical material was interpreted at an abstract level to bring out the latent content, i.e. what could be read as an interpretation of meaning. The authors actively addressed their pre-understanding through open discussions amongst the authors throughout the process, to make sure that the informants’ own voices were heard and done justice. Quotes were used to illustrate the results and interpretation of data.

Results

The analysis resulted in three themes and nine subthemes, see Table 1.

Table 1. Themes and subthemes.

Experience of stigma	Authenticity and balance in the patient relationship	Opportunities and setbacks in the team
Being burdened by both internal and external stigma	Building relationships	Sensing appreciation
Being undervalued	Balancing closeness and distance	Experiencing obstacles
	Being loyal to patients or colleagues	Sense of meaning
	Empowering the self and others

Attachment

Interview guide

Table

What made you want to work as a PSW?

Can you describe a "normal day" at work?

How have you experienced the collaboration with nurses in the team? Positive and negative experiences?

How have you experienced the collaboration with other staff, e.g. doctor, nurse? Positive and negative experiences?

Have you experienced that your skills have been utilized in a satisfactory manner? If not, why do you think?

What feedback have you received from the patients? (the question was added after the pilot interview)

Has the boundary between the professional and the personal presented any difficulties?

Has the work as PSW helped you in your own recovery and if so, how?

Did you receive adequate training before you started the assignment? Thoughts on how the education can be designed?

Experience of stigma

Stigmatization, both internally and externally triggered, was given a prominent place in the peer supporters’ stories.

Being burdened by both internal and external stigma

Peer supporters often fought against an already low self-esteem in an atmosphere where their own role and work identity were not experienced as self-evident. Stigmatization was experienced to originate both from within the self and from the surroundings and to be constantly present. Peer supporters highlighted that concepts such as responsibility, autonomy and anti-stigma were core values in line with the peer support philosophy. They reported feelings of inferiority in relation to the other team members already from the start.

Just coming into the room where there are ‘Oh yeah, sociologists, so and so many college credits, and there’s the chief physician, soon to be the head chief physician, and there’s a doctor of medical philosophy and there is this and there is that—and who am I in this?’ You know, I even pulled the chair away from the table. Everyone sat in a circle and I broke the circle. Because I thought, ‘Oh, do I even want to be a part of this?’ I was afraid: ‘There is the one who comes with the syringe, and there is the one who comes with paper…. there is the one who says that you can see from a distance that it is a schizo that is coming’—so. So it’s a stigma.

And the first thing I reacted to was that the staff toilets were locked and the patient toilets were open. And how do the patient staff do then? … Am I allowed to choose which toilet to go to? How bad should I feel to be regarded as a patient at work?

The informants described it as a painful experience when doctors could roll their eyes at a patient and in that way trivialize the patient’s opinions. It was pointed out that "language comprises attitudes", exemplified when team members disguised their voice to imitate a patient or when the staff described a person as "Woman known in psychiatry for 30 years" in the medical records. Informants emphasized the importance of not labeling people according to their diagnoses:

In our team we do not talk about “schizos” and “people with personality disorders”… When we started, we talked a lot about the language and we concluded that we call the people we meet/…/by a homogeneous name; citizens./…/If you are to seem recovery-oriented, then all meetings with the person seeking your support must be equal. They come with as much expertise as you.

Being undervalued

The participants experienced that the peer support role was lowly valued on a formal level. Many peer supporters lacked permanent employment. They had precarious forms of employment such as project employment or subsidized employment, for which they had to be coded as ‘disabled’. In addition, almost all peer supporters worked part-time, despite the fact that they requested full-time employment. The importance of having trustworthy information about the possibility of employment was also pinpointed.

… You have the lowest salary of all, you have insecure working conditions, you have no trade union, you are coded in the salary system as a craftsman or hostess […] It is so bad not to have my own work code, that I want to resign.

The peer support course was described as inflexible, substandard, and too short. It did not even include a textbook. In spite of this, the informants felt ready to work as peer supporters after the course, but requested more knowledge about their role from the employers, and a willingness to develop the peer support work together, even from a national perspective. They continued to seek information about their work on their own to enhance their competence. Furthermore, the PSW requested an internship through which they could try out the peer support role, and learn about opportunities where they could act. They also requested more training in handling potential difficulties in the patient-peer supporter relationship related to closeness and distance, and that training in evidence-based group therapy of various kinds should be provided. The only formal requirement to work as a peer supporter is having own experience of mental illness. To prevent inappropriate persons from becoming peer supporters, the peer supporters themselves recommended that peer supporters had previous experience of either social, pedagogic or health care work. The lack of a clear job description, pointed out by some of the PSW, also pointed to an undervaluation of the work. While there were those who indeed had a clear idea of what to do, others experienced that the tasks and expectations were vague and that they themselves “mostly floated around in the premises”.

Authenticity and balance in the patient relationship

Peer supporters had a unique role and opportunity to build relationships, which was illuminated in the following four sub-themes.

Building relationships

The peer supporters, describing themselves as "a fellow traveler on the road to recovery", reported that they created a personal relationship, rooted entirely in the patients’ needs. The communication with patients largely consisted of direct mirroring, and building trust through sharing feelings and experiences. The formation of relationships and trust were described as the most central building blocks.

… there is something so incredibly powerful about being able to share traumatic experiences with someone who knows how it feels. You can share experiences, you can talk to a psychologist and they can be as friendly and caring as you like, but the security and sense of belonging that arises when the person you talk to knows how it feels; it’s very special, it’s almost magical.

As peer supporters used their own experiences of mental illness, they said that they could be "totally honest" and always play with open cards, without having to act out a role in the same way as other professional staff—"doctors focus on medicine and nurses on nursing". Building relationships with patients on genuineness and authenticity was perceived to facilitate the work. An example of being honest was telling patients that the peer supporter had to report for example a suicide threat to other professionals, regardless of whether the patient wanted it or not.

Courage was considered an important personal quality for building genuine relationships. The peer supporters described it took courage to be present and harbor the patients’ narratives, and never to abdicate from standing up for the patients’ perspective. Integrity and personal maturity were emphasized as valuable qualities, as well as having self-distance and being able to joke with both patients and colleagues. Although the peer supporters experienced only positive responses, directly or indirectly, from patients, they mentioned that there might be patients who were not satisfied.

What I feel is that many people think that you are a good support, that you are easily accessible, yes.…. Sometimes when I lead certain groups I can feel in some way, anyway—it is not always said out straight but you still notice that they feel kind of comfortable and that they think it feels good with your presence. (I 5)

I have been told that it is a kind of approach they have never met in healthcare, ever. … that they have been offered many forms of support and help, but nothing has ever had the effect that this has had (crying).

The peer supporters speculated about the patients’ sense of appreciation being due to the patient not feeling judged or analyzed by them. The peer supporters appreciated the positive feedback, which could affect them deeply, but they always refused patients´ suggestions about continuing the contact privately.

Balancing closeness and distance

The informants described how they balanced on a fine line between closeness and distance in their relation to patients. For most patients it was enough to know that the peer supporter had own experience of mental ill health, without asking for details. If the peer supporters were triggered on a private level by patients they sought relief from colleagues. An example was when a peer supporter had recognized everything a patient talked about and afterwards, the peer supporter wished having been more neutral and less personal in his/her communication with the patient. Another example of where the line could be drawn is illustrated below:

I can tell, for example, that when I’m in a manic state I’m very amorous and break up with my partner if I have a relationship to meet a lot of different men and so on. I can tell them that, but I do not go into detail and tell you how or what or with whom…

The importance of navigating between being in their formal role and being personal, of using one’s own experiences but avoiding talking about private matters, was emphasized. The peer supporters feared that their colleagues would doubt that they were capable of distinguishing between private and work related matters, but felt confident that they themselves would manage.

But it came naturally, because there is a mutual respect between a peer supporter and a peer since you have these common experiences.

Handing over responsibility to the patient in all conversations, not feeling sorry for the patient, and being able to balance hope and anchoring the patients in reality were also deemed important elements in the peer supporters’ relationship to patients.

Being loyal to patients or colleagues

A loyalty conflict between staff and patients was experienced, for instance when staff and patients had different opinions or wills, or when the peer supporter could identify with both parties. "It sucks being in a room, a law room, which allows coercive measures", as one of the informants said. The peer supporters found it difficult when the patient wanted to end their medication and the nurse had the ambition to stay with the prescription plan. There could then be an expectation from both staff and patients that the peer supporter would be on "their side".

Sometimes there have been some clashes: I remember, there was a patient who did not like his nurse. And then the team spoke about it, and the general opinion in the room was that you should not be able to change nurse because then everyone would want to. And then I protested! What is most important? I ended up in a situation: should I be collegial or should I be on the patient’s side?

A further example illustrates a loyalty conflict triggered by the need to wear staff clothing:

I was about to become burned out … because it took such a toll on me in my role that I would suddenly wear white clothes. It became a bigger thing than other staff understood.

The peer supporters described their initial role as rebellious since it required being able to be a part of the care system and at the same time being an outsider.

… To be able to be reasonably radical and rebellious and at the same time reasonably compliant, and to work in a team together with psychiatric professionals and at the same time constantly resist like the care narrative and instead talk about humanity or normalize what has been viewed as an illness.

In terms of documentation traditions, this loyalty conflict became apparent. The peer supporters conveyed that they nowadays recorded their conversations and observations, just like other health professionals, without interpreting or analyzing facts, but that record keeping was not part of their duties during the early years:

There were a lot of discussions in the beginning 7 years ago, whether you were loyal to your peer if you kept records. I think it’s about my safety, but also for the sake of the people that I meet and talk to, it’s about patient safety. I was involved in an incident during the first 6 months as a peer supporter, when I had a patient who announced that she would commit suicide. … I informed the staff about this. But they never documented it. And she committed suicide during the weekend. It became a "breaking point"—how important it is that our conversations are documented.

Empowering the self and others

There were peer supporters who felt that their work helped them in their own recovery process, but also those who stated that they were already fully recovered. The work was experienced as strengthening and helped maintain mental well-being. "Feeling good is a daily struggle" as one of the informants put it. Just having a job to go to had been very helpful for the peer supporters. Furthermore, it was a security to have colleagues who could notice early signs of ill health and from whom they did not have to hide their mood or inner struggles. The work had contributed to the discovery of new facets of their personality. "I began to heal myself when I opened up in a group//it helps me to talk about mental health and ill health all the time". The work was perceived to provide new perspectives and helped the peer supporters become aware of their own emotional and cognitive patterns. By becoming aware of stigma, they experienced that it was possible to free themselves from stigma.

Since the peer supporters’ expertise was based on their own experiences of recovery, they pointed out that the perspective of individual recovery should permeate their work. It was emphasized that their own experience was not enough, their knowledge also had to be communicated in such a way that the patient became empowered.

The self-experienced contributes with a resource that just does not exist anywhere else, you can not just learn it from studying. It’s an expertise. We are experts in not being experts and it takes a lot of expertise to be that!

Empowering a patient was exemplified by the peer supporter accompanying the patient to his/her doctor’s appointments or to other meetings within or outside the health care context. The peer supporters described that they themselves would have needed a peer supporter when they were ill, and that this was the reason why they applied for the job. They further described that their own experiences helped them to constantly keep the person behind the diagnosis in mind. They pointed out that to be of help to the patient in recovery, it is necessary for the peer supporter to have references associated with a functioning life without illness.

If I compare my specialist function to the others, the difference is that I am completely uninterested in curing someone. I do not try to improve other people’s behaviors, but I am interested in recognizing the person who sees herself as free from the diagnosis. And give room for joy, daring to believe that it can get better. Boost with as much power as I can. So I just have a focus on strength.

Opportunities and setbacks in the team

The peer supporters felt that teamwork often was a source of joy and opportunities, but also disappointing at times, leaving room for improvements.

Sensing appreciation

The peer supporters experienced that their specialist competence was highly appreciated, and they felt fully supported and respected by their managers and colleagues in the team, both personally and professionally. The informants perceived that peer support was a long-awaited work category. They felt included and that the staff was open-minded and valued their opinions. The importance of collegial "chit chat" in the coffee room was highlighted as it created a sense of belonging. Although personal chemistry was perceived to play a major role, peer supporters were largely positive about the collaboration with staff members and felt they could trust them. Especially the nurses were perceived to be flexible and supportive. The peer supporters expressed pride that they had contributed to deeper reflection and had been able to influence the team toward a more patient-oriented attitude.

When the penny drops, the teamwork can be amazing. Then you become a bit like an extended arm, at least that’s what I hope for.

Experiencing obstacles

Disinterest in the peer supporters’ competence was perceived as a hindrance for an optimal team cooperation. When their competence was not actively requested or noticed, or colleagues did not seem curious about the peer supporter’s job, they felt that peer support was not recognized as a real job. This is illustrated by the following quote from a peer supporter, whose fixed-term employment had been turned into a permanent employment:

And then this person asked me: “How great that you got a steady job! Well, are you going to start helping us now?” And then it struck me that this person has not understood that my job is to do what I do.

Contact and communication with doctors were perceived to be deficient. Peer supporters felt no curiosity from doctors about their history or their work. Sometimes, they also experienced an invisible wall between themselves and the other staff and wondered if the staff felt that peer supporters were encroaching on their territory. If the staff became silent when the peer supporter entered the room, they interpreted it as suspicion, skepticism and mistrust from their colleagues. They assumed that it was difficult to include a peer supporter in the team if staff members were stuck in old patterns, and that staff had to be open-minded, self-confident and brave to let the peer supporters in and reflect upon what value the peer supporter can add to the team. They noted that the colleagues did not always understand what the peer supporters’ role was and that they did not always dare to ask.

Sense of meaning

The peer supporters felt that their work brought a stronger sense of meaning and purpose in life by giving them the opportunity to do something good and be useful to others. “Being a non-clinical voice in a clinical setting”, and a role-model for patients made the job meaningful and created an identity the peer supporters had dreamt of.

And I believe a lot in empathy towards fellow human beings, compassionate love, it helps a lot. And that I can be a deputy of hope. If I can do it, they can!

Experiencing that they had been able to help patients ease feelings of shame was described as especially meaningful.

There are those who have said that I have changed their lives, freed them from shame and anxiety. It has really been like a life-changing experience, it really has… and there has been a lot of focus on getting rid of shame and stigma. I have heard them say often that they have more faith in their clinic because a peer support is employed.

Giving hope to patients was perceived as a mutual exchange of meaning. Reminding patients of the ongoing life outside the clinic was described as important.

You have to save people from psychiatry itself, and just like remind them of what hope is and what life is and what relationships are … and that, sure, psychiatry has it’s part to play but there is a life out there.

The peer supporters emphasized the importance of always being proactive and inspiring, partly to help patients move forward, partly to develop peer support as a new line of work. Taking a lot of initiatives to shape their working role was described as challenging, "having to get behind the wheel themselves".

Discussion

The current findings illustrate the peer supporters’ experiences of their work role and associated relations. The results are in line with Mutschler et al. (2021) review, where implementation barriers were defined as an organizational culture without a recovery focus, allied practitioners’ misconceptions about peer support, and an unclear peer role. The discussion will focus on three salient aspects, namely the peer supporters’ experiences of stigma, challenges associated with a blurred job description and loyalty conflicts, and the peer supporter role’s potential in terms of recovery and empowerment.

The shadow of outer and inner stigma was a constant in the peer supporters’ everyday life, not necessarily obvious for their colleagues. However, the peer supporter work represented valuable means to counteract stigmatization, strengthen inner resilience to stigma and discrimination by creating hope for patients, as also seen in previous research (Corrigan et al., 2016). The word "peer" reveals that the person has experienced mental illness. Although this is validating in itself, it can also be perceived as stigmatizing and become an obstacle to wanting to work as a peer supporter (Moran et al., 2013). Vandewalle et al.’s (2016) and Ehrlich et al. (2020) studies showed that peer supporters do not always feel valued as team members and further that other health care professionals may view them as additional patients to care for, resulting in peer supporters being hesitant to call in sick for fear of confirming this image. This phenomenon is partly confirmed in the current study. However, as in Otte et al. (2020b) study, the current findings also showed that peer supporters’ presence led to a lessened use of derogatory words and an increased awareness in health professionals of the effects on patients of such vocabulary. The current study hence showed that peer supporters can ignite reflection from a patient perspective among the team members, who also showed a willingness to do this according to the peer supporters’ experiences. Otte et al. (2020b) emphasizes that peer supporters can help reduce the formal distance, which can lead to more authentic relationships where patients dare to be honest about their feelings. Peer supporters can thus contribute to enhance the professionals’ knowledge about patient participation and provide a unique insight into the treatment of patients with more severe psychiatric conditions. Moreover, peer supporters can act as a bridge between patients and other team members, facilitating a mutual understanding of care related decisions and raising awareness about the use of language around patients (Otte et al., 2020b). Altogether, these may be stepping stones in addressing stigma associated with mental illness, and thus also with the peer supporter role.

According to Corrigan et al. (2016) peer supporters have the potential of creating hope, not only for patients, but even for healthcare professionals and organizations. However, flexibility in the job description is also necessary for a swift adaptation to local conditions (Shepardson et al., 2019). The peer supporters in the current study experienced their job description and work role as blurred, potentially making it more difficult to assert themselves among colleagues and for the colleagues to clearly grasp the peer supporters’ position and tasks in the team. The absence of a clear job description and a proper education were both related to feelings of stigmatization in the peer supporters. Uncertainty about the team’s expectations on them and about how to use their knowledge and life history can lead to an unwillingness to shoulder the peer supporter role (Chinman et al., 2017; Moran et al., 2013; Scott & Doughty, 2012). Peer supporters can experience this as lack of support with regards to making use of their own unique history, which in turn risks eroding the value of their work (Chinman et al., 2017; Gillard et al., 2015). Despite the fact that peer support has increased in psychiatric care during the last years (Burke et al., 2019), the peer supporters in the current study described a state of ignorance and lack of interest surrounding peer support and its distinct function in the team. This may represent a risk in terms of further developments of the peer supporter role and of not taking advantage of the peer supporters’ unique competence, due to poorly functioning teams (Vandewalle et al., 2016). The feelings of emulation and suspicion that the peer supporters perceived from the other health care staff corroborate previous studies (Otte et al., 2020a). Otte et al. (2020a) argue that the peer support work ought to have a differentiated position in relation to other health care professions around the patient, confirming the current study’s findings in terms of clarifying the peer supporter role, both for the peer supporters’ and the team members’ sake.

Having a standardized peer support education can further help formalize the peer supporter role, but at the same time it is contradictory to educate oneself “in being authentic” (Scott et al., 2011). The apprehension that authenticity would decrease with more thorough training was however not seen in the current study. This speaks for a development of the peer supporter training, including a standardized introduction aimed at the professionals that peer supporters collaborate with. Shepardson et al. (2019) emphasized the need for access to in-service-training, work development, and clinical supervision, both during startup phases and long term. The current study’s results point toward insufficient training and mentorship/supervision, which corresponds to Vandewalle et al.’s study (2016), where also limited career opportunities and lacking logistical support were mentioned as hinders to embracing the peer supporter role. Many of the peer supporters in the current study had precarious working conditions with part-time employment and wage subsidy employment, potentially reinforcing stigmatization and a negative view of the peer support role and work. They expressed their dissatisfaction with not having a specific entry in the coding system at the Employment service, where they instead were classified as “craftsmen”, “assistants” or “hostesses”—assignments that were not relevant for their work. This is a clear example of how organizational factors can lead to difficulties in implementing peer support in psychiatric care, as Otte et al. (2020a) point out.

Conflicts of loyalty were experienced on several levels, related to the care context’s demands and associated relationships. Examples include the need to wear hospital workwear, comply with documentation requirements, or to act as the patient’s advocate in front of other professionals. Previous studies have shown difficulties for peer supporters to pass on confidential information from patients to other team members, since they did not want to jeopardize the trust built up between them and the patients (Otte et al., 2020a; Scott & Doughty, 2012). This can lead to conflicts between the peer supporters’ relationship building with the patient and the clinical need for record keeping that is to be shared with the working group (Scott & Doughty, 2012). It can be difficult to balance the “in-between’’ role, for example when medication is discussed and both patients and staff expect the peer supporter to be “on their side”. This corroborates previous studies that show an ambiguity about roles and confusion about demarcation between patients and peer support (Vandewalle et al., 2016). The peer supporters in the study by Otte et al. (2020a) tended to choose the patient’s side in such situations as they considered this their main task, a notion that is consistent with the current findings. The loyalty conflict between health professionals and patients might put a strain on the relationship and there is a risk that peer supporters are drawn into a workplace culture characterized by an "us and them" polarization in relation to patients (Alberta & Ploski, 2014). The peer supporters then risk losing their unique role, which can reinforce the feeling of loyalty conflict. During their education, peer supporters are trained in telling about their path to recovery as a way of offering recovery-focused care. Nonetheless, Scott et al. (2011) believes that this interferes with the relationship-building process because it is taken for granted that the peer supporter’s pre-understanding of mental health is consistent with the patient’s own lived experience. Teachers in the peer support training also noted that the students began to adopt a professionalized, more distancing language (Scott et al., 2011). Reciprocal, interpersonal relationships are important for good collaboration between the patient and their caregivers (Jones et al., 2016; Moreira de Freitas et al., 2018). Nonetheless, the peer supporter’s work title and status can create unbalanced power relationships in the peer-to-peer relations (Gillard & Holley, 2014). Gillard et al. (2015) has highlighted how a trusting relationship between peer supporters and patients enables positive role models and active commitment. A peer supporter can share his or her own experiences of emotional stress and can contribute to a personal narrative being reformulated from a limited "patient identity" to a more positive understanding of the self (Corrigan et al., 2016). This process is the opposite of shame and secrecy, which contribute to the internalization of public stigma (Corrigan et al., 2013).

An equal distribution of power between peer supporters and patients, a sense of reciprocity between the parties, and a holistic understanding of mental illness which confirms the personal experiences’ validity have been highlighted as essential characteristics of the patient-peer supporter relationship (O’Hagan et al., 2009).The current study shows that peer supporters believe that the relation to patients is valuable not only for patients, but also for the peer supporters’ own continued recovery. It thus corroborates previous research (Burke et al., 2019; Otte et al., 2020b; Shepardson et al., 2019) that shows multiple positive benefits for both patients and health care staff when including peer supporters in psychiatric care. As Happell et al. (2015) show, encounters with people with lived experience of significant mental health challenges can contribute to nursing students’ education about mental health and the authors argue that this might be desirable if policy aspirations for recovery-focused mental health services are to be achieved. It provides an opportunity to dispel misconceptions and fear regarding people diagnosed with a mental illness, better equipping students to address mental health needs in healthcare settings. Although nothing can be said about the patients’ experiences in the current study, the peer supporters’ narratives indicate that they may represent a valuable resource for patients within the psychiatric health care context. Peer supporters have their focus on making psychiatric care more person-centered and recovery-oriented (Firmin et al., 2019), which is increasingly in focus in psychiatric care and care research (Roberts & Wolfson, 2004; Rosenberg & Argentzell, 2018; Slade et al., 2012). The current study’s peer supporters used both a guide produced by experiencers of mental illness in collaboration with family, professionals and researchers (Allaskog & Andersson, 2020) and NECT, an education addressing self stigma (Roe et al., 2014) in their work with patients, but they also developed their own material. As seen in the current study, the peer supporters’ own experiences have the potential of giving the patients’ subjective recovery an increased weight within psychiatric care contexts. Based on the recovery-oriented approach, peer support as recognized work role is well on its way to establishing itself in Swedish psychiatric care, but challenges still remain, such as the need for deepened training, education for the team members and a clarification of the division of responsibilities between the various parties (Gustavsson & Ingard, 2018). Cleary et al. (2011) highlight that peer support-run organizations might produce greater impacts than is the case for peer supporters working within mainstream mental health organizations, with more accentuated peer support ‘leadership’. Aspects of the mental health system itself and the education of professional employees need further scrutiny, given some staff resistance and a range of negative attitudes (Cleary et al., 2011). Several countries report the same implementation barriers, which points to a gap between policy and practice. Unsupported workers can become ‘isolated, lose confidence and feel challenged by the complex web of knowledge, politics and stigma’ (Bennetts, 2009, p. 37), which contradicts the peer support philosophy. According to O’Hagan (2010), peer support leadership is required at all levels of the health system: the individual, within autonomous agencies, as well as mainstream health and social services, and in society at large. O’Hagan (2010) further states that this shift goes to the heart of psychiatric epistemology and shows the necessity for mental health professionals to take up expert adviser roles, rather than being experts about others’ well being per se. Such political and practical changes devolve on real resource and power sharing with peer supporters, where personal empowerment and equality are viewed as central values (O’Hagan, 2010).

Strengths and limitations

Although limited, the current sample generated rich interviews. Due to restrictions related to the Covid-19 pandemic, four interviews were conducted via Zoom and telephone, limiting the interviewers’ access to verbal nuances and non-verbal communication. Nonetheless, consensus in the analysis process strengthens the study’s credibility (Noble & Smith, 2015). Only PSW in hospital-based psychiatry were included with the motivation to gather a homogenous group of participants. The limited sample size and narrow context limit the findings’ transferability.

Conclusion

The current study contributes with a deepened understanding of meaning, opportunities and challenges encountered by PSW in hospital-based psychiatric care. The PSW report experiences facilitating empowerment, a sense of meaningfulness and of being valued in their role as peer supporters, which goes in line with the ideas of recovery and empowerment embraced by the peer support model (Charles et al., 2020; Corrigan et al., 2007; Mutschler et al., 2021). However, the peer supporter role is also associated with difficulties, such as lack of clarity and support pertaining to the PSW role, in all parties concerned, which in turn may affect its attractiveness and reverberations, experiences of stigmatization, and challenges in balancing relationships to patients and health care staff. These factors may, separately and co-jointly, represent valuable potential with the peer supporter role but also hinders in embracing this role and in implementing the model with the mental health care system. The findings showed that it is important to develop a common job description in order to strengthen the peer supporter status, reduce perceived stigma and facilitate cooperation with other professional categories. Furthermore, additional support in the form of education and supervision for PSW and introductory information on the peer support model for health care staff and decision-makers may help smooth the path for peer supporters in mental health care. Implementing peer support in traditional psychiatry has not been without difficulties and the present study may be of benefit to those organizations that plan to implement peer support in their future activities. Offers of permanent employment and full-time employment could contribute to strengthening the peer supporter role and further reduce the stigma that PSW experience. Adaptation work takes time and the establishment of a new work category is inevitably met with resistance, especially since the introduction of peer support represents an ongoing paradigm shift in psychiatric nursing. In recent decades psychiatric nursing has moved away from a vertical, paternalistic system to a more horizontal, person-centered system based on shared decision-making (Socialstyrelsen, 2012).

More research is needed on how to successfully implement peer support in a variety of psychiatric healthcare contexts if proven successful. To enrich our understanding of peer supporters’ experiences of their work role and associated interactions in diverse professional settings further qualitative and quantitative research is motivated to explore the perspectives of larger samples of peer supporters from a variety of psychiatric settings such as e.g. municipality care, forensic psychiatry and addiction care. Research should also include patients, health professionals and policy makers to deepen our understanding of the benefits and hinders associated with the peer support model and its implementation within the mental health care system, including cost-effectiveness studies. As also suggested by Chinman et al. (2014), studies with methodologically strong methods, focus on outcomes of care, fidelity to peer support models and theoretical mechanisms at work are also needed to expand on our knowledge of the peer support model and role.

Author contributions

AW and TL collected and analyzed data, supervised by SS, with input from KL. All authors took part in writing and finalizing the script, and everyone has approved the final version.

Disclosure of interest

The authors report no conflict of interest.

Funding

None

Funding

The author(s) reported there is no funding associated with the work featured in this article.