Table 6 Experiences of peer support (overview of themes)

What the PSW role can bring

 Wellbeing and recovery

Benefit [23, 34, 61]

PSWs [23, 34, 61]: PSWs experienced improved wellness and recovery. The role enabled them to reframe and accept their illness and kept them engaged in recovery. They also experienced increased confidence, social networks, self-esteem, self-knowledge, and personal growth, through, e.g. using their lived experience to help others, a sense of belonging, learning more about their own mental health and learning from service users.

Challenge [23, 42, 55, 60]

PSWs [23, 34]: the role could have a negative impact on PSW wellbeing and recovery, e.g. due to a heavy workload, the role could remind them of their illness and the ‘sick’ label could stay with PSWs. Service users could be a source of stress, e.g. service users who had a greater level of disturbance than the PSWs own experience.

Mixed^a [42, 55, 60]: PSW absenteeism due to illness or relapse increased caseload for non-peer staff. There is a risk that service users and PSWs could experience distress due to exposure to triggering content. There was fear that PSWs recovery process could negatively impact the support provided. (service users, PSWs, carers, non-peer staff).

 Recovery and role models

Benefit [23, 34, 39, 49, 55, 60, 61, 64]

PSWs [23, 34, 55]: PSWs felt mutual benefits from the role. The role aided PSWs personal recovery through, e.g. providing a route back into employment and social inclusion. The importance of PSWs being role models was related to embodying personal recovery so they could be ‘the evidence of recovery’.

Service users [39, 55, 61]: For service users, PSWs could be role models and give service users hope of recovery, e.g. from working with PSWs, service users experienced increased hope, motivation, better social communication skills, a sense of belonging and improved mental health symptoms. PSWs could show service users that life beyond illness is possible. Service users valued PSWs sharing their knowledge and felt empowered as they gained knowledge on mental health. Gaining knowledge motivated service users to be optimistic and independent in their recovery.

Non-peer staff [61]: From working with PSWs, non-peer staff developed increased empathy towards people in recovery and a belief in recovery.

Peer support group members [49]: Forming relationships in peer support groups was valuable for recovery, e.g. enabled re-evaluation of self and expectations [of motherhood].

Mixed^a [60, 64]: PSWs are role models, give service users hope of recovery, are valued and provide guidance and support to service users through the process of engaging with mental health services, e.g. how to navigate services. (non-peer staff, PSWs, service users, policy makers, peer programme developers, carers)

Challenge [61]

Service users [61]: Some reported that PSWs are not role models for service users. Reasons included a belief that without formal training and because of their mental health diagnosis PSWs would be ineffective helpers.

 Career, social inclusion and identity

Benefit [23, 34, 42, 61]

PSWs [23, 34, 61]: The PSW role enabled them to contribute through work, which helped maintain recovery. The role offered a route back into employment, gaining skills, financial freedom, structure and stability, improving functioning and increasing social inclusion (e.g. by interacting with non-peer staff, on an equal footing), and social networks PSWs reported increased self-acceptance as they no longer had to hide their mental health issues. The role could also be a stepping stone into further employment.

Mixed^a [42, 61]: PSW roles were rewarding and enabled service users to find a place in the community beyond ‘patient’. (Mental health organisations, PSWs, non-peer staff, service users, carers)

 Experiential knowledge, normalisation and stigma

Benefit [39, 55, 61]

Service users [39, 55]: For service users, PSW support differed from formal treatment, it normalised and de-medicalised service user experiences. This difference felt person-centred leading service users to reconnect with ‘real life’ situations, e.g. rebuilding relationships. Lack of judgement from PSWs reduced stigma around service users’ experiences of an eating disorder. The sense of a ‘shared experience’ helped service users feel they were ‘getting back to normal’. Service users valued peer support services and appreciated PSWs experiential knowledge, perceiving them to be more insightful than non-peer staff as they were viewed as role models in recovery, promoting empowerment and hope for service users. PSW services were trusted, making service users feel comfortable and accepted when attending activities.

Mental health organisations [61]: For organisations, PSW roles decreased mental health stigma and set a positive example to other sectors

Challenge [39]

Service users [39]: Some service users and members of the public found it challenging to view PSWs as mental health professionals due to concerns on their mental health history. Some service users perceived the knowledge of PSWs to be of lower value than that by healthcare professionals and should not be fully trusted.

 Isolation and validation

Benefit [49]

Peer support group members [49]: Having their experiences, e.g. that mothering in illness is difficult, validated by other mothers made life ‘less difficult’.

Challenge [49]

Peer support group members [49]: Meeting other mothers could lead to increased isolation, where their experiences were contrasting, e.g. feeling that others are happy when they are not.

 Rapport and empathy with service users

Benefit [39, 61]

Service users [39, 61]: Service users built rapport easier with PSW than non-peer staff due to PSWs having less professional distance and being ‘street smart’. Service users felt that PSWs were more approachable and caring than non-peer staff, enabling them to open up and share concerns. Service users perceived greater empathy from PSWs, especially regarding adverse effects from medications.

 Bridge

Benefit [64]

Mixed^a [64]: PSWs function as a bridge between service users and non-peer staff and within the organisation, by building trust-based pathways, supporting the service user across the fragmented care system. (non-peer staff, PSWs, service users, policy makers, peer programme developers)

 Pioneer and expectations

Challenge [64]

Mixed^a [64]: PSWs were pioneers which led to expectations and pressure, i.e. no room for failure which would reduce future PSW opportunities. (non-peer staff, PSWs, service users, policy makers, peer programme developers)

 Complementary role, expertise and becoming part of the team

Benefit [64]

Mixed^a [64]: Non-peer staff recognised the valuable contribution of PSWs and PSWs fit with various perspectives, becoming a team member. E.g. they provided psychosocial support, were sources of experiences, fresh insights, and information, and had time to do tasks that others may not, e.g. time to just talk to patients. Collaborating with PSWs could improve recovery-oriented care. PSWs may acquire different knowledge about service users than non-peer staff, e.g. about drug abuse. (non-peer staff, PSWs, service users, policy makers, peer programme developers)

Challenge [64]

Mixed^a [64]: PSWs may lack a broader perspective on mental health beyond their own experience. (non-peer staff, PSWs, service users, policy makers, peer programme developers)

Confusion over the PSW role

 Role ambiguity

Benefit [64]

Mixed^a [64]: When PSWs were introduced, their role was ambiguous. This was positive as it gave flexibility to define the role (non-peer staff, PSWs, service users, policy makers, peer programme developers)

Challenge [32, 38, 42, 43, 53, 54]

PSWs [23, 34]: A lack of clarity about the PSW job description meant that PSWs felt confused in their role which affected their confidence, perception of competence, with ramifications for their recovery and uncertainty in their responsibilities to service users. A lack of clarity also led PSWs to feel the role was tokenistic, and to feel uncertain about where to seek support.

Service users [39, 55]: Some service users perceived a lack of clarity on the PSWs' roles: PSWs were viewed as informal staff who were replaceable, leading to negative perceptions of the PSW services. Some service users perceived peer support to be tokenistic, which led to the content of the PSW intervention ‘feeling irrelevant’.

Mixed^a [42, 63, 64]: PSWs found their role ambiguous making them anxious to demonstrate their value. PSWs felt they received insufficient training and were expected to develop the role over time, this hampered service delivery, creating the perception that PSWs were tokenistic. Non-peer staff were unsure of the PSW role, leading to a lack of support from non-peer staff. (PSW, non-peer staff, service users, carers, policy makers, peer programme developers).

 Disclosure of peer status

Challenge [34, 39, 63, 64]

PSWs [34, 39]: PSWs differed in how comfortable they felt in disclosing their recovery story. For some PSWs sharing their story was connected to their personal recovery. Some PSWs expressed fears of being socially excluded and labelled as ‘mentally ill’ thus would avoid sharing their experiences because they believed service users would not trust them or value their knowledge. PSWs also expressed concern about getting jobs outside of mental health due to their peer worker identity.

Mixed^a [63, 64]: There was confusion over when/with whom to disclose lived experience. For example, disclosure was important to educate team on alternative views but may require discretion within professional relationships. But ‘professionalism’ may not challenge existing boundaries which could change culture. Some PSWs felt vulnerable and were reluctant to disclose but disclosure could build trust with service users and enabled PSWs to be recovery role models. (PSW, service users, policy makers, peer programme developers, non-peer staff, mental health organisations).

 Boundaries

Challenge [23, 60, 61, 63]

PSWs [23, 61]: the transition from service user to PSW and knowing where to draw the line between friend and service provider, was challenging. Working as a PSW in substance abuse could lead to disconnection from their own recovery communities due to ethical concerns when sharing in support groups, putting the PSWs recovery at risk.

Mixed^a [60, 63]: whether PSWs should relate to service users as friends (seen as unprofessional) or service users. Some PSWs would not share service user information with agency staff due to concern about violating friendship. (Service users, PSWs, carers, non-peer staff)

 Role conflict and professionalization

Challenge [34, 61, 63, 64]

PSWs [34]: for PSWs dual identity as a service user and service provider could be a source of stress and impact on relationships and boundaries. For example, PSWs could more closely connect with service users with similar difficulties to their own but this could have an emotional impact and could be triggering for PSWs leading to a recurrence of their own mental health issues. PSWs found the dual identity particularly difficult where PSWs were working in a team that previously cared for them.

Mixed^a [61, 63, 64]: The transition from patient to staff is challenging. For example, non-peer staff may be concerned about the PSW becoming unwell, especially if they were previously a patient at the facility, making PSWs feel that they’re being treated like patients. PSWs can be ‘unwilling’ to give up their consumer perspective to adopt ‘professional beliefs and roles’, e.g. training was questioned as leading to professionalisation and interference with the advantage of being a PSW. (PSW, service users, policy makers, peer programme developers, non-peer staff, mental health organisations).

Organisational challenges and impact

 Lack of support and training

Challenge [23, 34, 60, 64]

PSWs [23, 34]: PSWs experienced a lack of support and training, potentially related to unclear job descriptions. PSWs struggled to develop the skills for their roles, including to work with service users with more complex needs than their own experiences. PSWs reported their supervision felt superficial, and problems in their relationship with their supervisors, e.g. due to PSWs not feeling that they had enough autonomy.

Mixed^a [23, 60, 64]: It was felt that lived experience wasn’t solely sufficient to work in interprofessional teams. Some PSWs were positive about certification, others felt that certification could conflict with the grassroots, user-led ethos. Supervision and support were often not offered to PSWs. Risks might arise due to PSWs lack of training and support. Organisations needed to train PSWs and non-peer staff about the value of peer support and develop/implement guidelines. (PSW, non-peer staff, service users, carers, policy makers, peer programme developers).

 The value of the PSW role and low pay

Challenge [23, 34, 61, 63, 64]

PSWs [23, 34, 61]: The value of the PSW role was linked to low pay. There were concerns about low pay, few hours and working overtime without compensation. Low pay contributed to role dissatisfaction with PSWs viewing themselves as ‘cheap labour’. However, some PSWs felt that they were well compensated.

Mixed^a [63, 64]: PSWs received low pay. This was difficult as they wanted jobs that freed them from disability income. Low pay contributed to role dissatisfaction and suggested the job was new, not valued or unclear. PSWs felt pay correlated with legitimacy and tokenism. Reasons for low pay were hourly pay, PSW not requiring certification, stigma from non-peer staff about 'the capacity for people with mental health conditions to work'. (non-peer staff, PSWs, service users, policy makers, peer programme developers)

 Workload

Challenge [64]

Mixed^a [64]: PSW workload could be overwhelming. This could jeopardise other staff relationships, also under pressure from their own workload. Being given so many varying tasks (e.g. household tasks, meetings) the role could lose its distinctiveness. This was added to by a lack of understanding of the PSW role. (non-peer staff, PSWs, service users, policy makers, peer programme developers)

 Colleagues and stigma

Challenge [23, 34, 39, 46, 61, 64]

PSWs [23, 34, 61]: Although PSWs reported feeling accepted in their teams, some PSWs could experience negative and rejecting non-peer staff attitudes, e.g. treated as a patient, rather than a colleague, talking inappropriately or joking about people with mental health issues, PSWs not invited to social events. PSWs felt excluded, experienced tokenism and stigma, this could lead to isolation and self-stigma.

Non-peer staff [61]: There was fear that ‘cheap labour’ provided by PSWs might lead to less non-peer staff positions.

Mixed^a [39, 46, 64]: PSW roles could be a threat to other professionals’ roles, e.g. nurses suspicious they may be replaced. Non-peer staff were uneasy about working with people they had previously treated or PSWs seeing medical records, e.g. of other PSWs.

Concerns from healthcare professionals and policymakers over effectiveness and safety of peer support led to a lack of support and hostility from non-peer staff. Hence PSWs were accorded less respect and fewer responsibilities, with doubts consequently cast over their credibility.

PSWs felt uncomfortable talking about their role due to stigma, they challenged stigma by taking on more responsibility. Hierarchies in teams undermined PSWs feeling equal in meetings, they needed to find their voice to challenge clinically dominant ways of thinking. (PSW, service users, policy makers, peer programme developers, non-peer staff, mental health organisations, unspecified (in one study)).

 Challenges for healthcare staff/organisations

Challenge [42, 61]

Mixed^a [42, 61]: Non-peer staff felt there were expectations to support, train and supervise PSWs, increasing their workload. Some staff found it challenging to have different ‘providers’ [PSWs] in the team. Confidentiality, disclosure and increased sick time of PSWs compared to non-peer workers were issues for organisations. (Service users, PSWs, carers, non-peer staff, mental health organisations).

 Treatment models

Challenge [23]

PSWs [23]: PSWs are part of the newer recovery model and had trouble integrating into the traditional treatment model, e.g. where doctors held majority of power and decision making for service users but spent the least time with service users. PSWs were expected to contest the traditional treatment model in support of a recovery focus (e.g. by their presence or in some cases by being openly challenging), this led to friction. If organisations are not prepared for PSWs the role doesn’t provide stable employment.

Other

 Offering treatment choice

[60]

Mixed^a [60]: Service users should have opportunities to choose among PSWs as service providers. (service users, PSWs, carers, non-peer staff).