Introduction

Transition age youth (TAY, ages 16-24) with serious mental illness (SMI) face exceptional challenges as they move from adolescence to adulthood, including service barriers related to transitioning from child to adult systems of care and for some, the loss of financial and social support resulting from emancipation from foster care.1,2,3,4 Approximately 75% of SMI, including schizophrenia-spectrum disorders, severe bipolar disorder, and severe major depression, manifest by age 24.5 In 2019, the prevalence of SMI in the USA was highest among young adults age 18-25 at 8.6%, compared to 6.8% for ages 25-49 and 2.9% for age 50 or older.6 Despite the early onset and higher prevalence of mental illness among TAY, only 56.4% of young adults with SMI received mental health services, compared to 65.1% among ages 25-49 and 74.3% for age 50 or older. 6 Across all adult age groups, African-Americans and Latinos with mental illness are less likely to receive mental health care than their non-Hispanic white counterparts; these patterns are especially marked among African-American and Latino TAY.7

Peer support services are delivered by individuals with lived experience of mental illness who assist others in their recovery by providing emotional support (i.e. showing care or sympathy, understanding, listening), instrumental support (i.e. assisting with tangible needs, such as material goods, money, or providing services like transportation), informational support (i.e. providing advice or specialized knowledge about a specific topic), and appraisal support (i.e. help making decisions, acting as a sounding board, providing feedback).8,9 Peer support services may improve youth engagement by offering mutuality, empathy, hope, and trust,10 and reducing social isolation, disempowerment, and frustration.10,11 Peers may also serve as role models due to their lived experienced and achievement of personal or professional goals.12,13 This relationship may enhance a client’s connection to other mental health providers. Peer providers may also help engage clients have previously been stigmatized by mental health service providers.10 Employing peers who share clients’ cultural backgrounds may also help reduce disparities in access to and engagement in mental health services by providing culturally and developmentally appropriate supports.5,11,14

The use of peer support in mental health service systems has increased worldwide since the 1990s.11,15,16 Yet, systematic reviews and meta-analyses of the use of peer support among adults reach differing conclusions due to variations in the study design, participants recruited, and outcomes assessed.17,18,19 Challenges with evaluating the effectiveness of peer support include the diverse array of roles and responsibilities adopted by peer providers, particularly in naturalistic community-based settings and lack of consensus20,21 and consistency in the operationalizations of peer roles.22,23 Notably, qualitative studies on peer support often focus on the perspective of peer providers rather than clients.16,19 Additionally, extant literature does not disaggregate the experiences of TAY clients which challenges the field to move forward in understanding the impact of peers as an intervention for TAY living with SMI.24,25

This study reports qualitative findings from a sequential mixed-methods study. Quantitative analyses based on administrative data first found that peer support was associated with increased use of outpatient mental health services and greater use of services in programs.26,27 This qualitative investigation thus sought to expand upon quantitative findings and it examines TAY client perceptions of peer providers as it relates to support provided to facilitate their recovery and well-being.

Methods

Study setting, participants, and data collection

The study was conducted among in San Diego and Los Angeles Counties; both counties provided the investigators with a list of county-funded mental health programs that serve TAY. In 2018-2019, these programs were queried to determine their use of peer providers. Purposeful sampling was used to identify the six programs in which peers provided a range of services to a diverse population of TAY.27 Programs were provided with a recruitment flyer and suggested messaging to recruit TAY clients to join focus groups. Focus groups were conducted between September and November 2019. To achieve equal representation in each county, the principal investigator conducted six client focus groups (n=3 groups in Los Angeles; average number of participants: n=5.6, n=3 groups in San Diego, average number of participants: n=2.3) with 24 participants (n=17 males, n=7 females); other demographic data were not collected. Participant recruitment was terminated due to saturation of themes (i.e. no new data were collected with additional participants)28 with the existing sample. Each focus group lasted between 25 and 60 minutes, with an average duration of 37 minutes; they were digitally recorded. Refreshments and $20 gift cards were provided to participants. Participants provided their written informed consent to join the study.

Focus group interview guide

To investigate TAY clients’ perceptions of peer providers as it relates to support provided to facilitate their recovery and well-being, the interview guide elicited information about 1) the activities that TAY clients engaged in with peer providers, their relationship with their peer providers, and how their peer provider compares with clinical staff, 2) what characteristics or skills clients desired in a peer provider, 3) how interacting with a peer provider influenced their experience using mental health services, and 4) how peer providers may have influenced clients’ way of thinking about mental health and recovery. Before initiating the discussion, the facilitator first defined a peer as “someone who has lived experience with mental health challenges and assists others in their recovery”.

Data management and analysis

Focus group audio files were transcribed verbatim by study staff. Transcripts were coded and analyzed using MaxQDA 2020 software using a combined deductive and inductive approach to thematic analysis.29 A preliminary coding scheme was developed based on the interview guide; emergent codes were identified and added. The team layered intersectional codes to cross-reference segments of text representing a specific topics, qualities, or characteristics found throughout the focus group across different topics (e.g. Latino TAY-Specific”).30 The coding scheme was applied to two transcripts by four study team members (VO, SH, and two research assistants) to identify any additional emergent codes and further refine the structure of the coding scheme. Revisions to the coding scheme were based on group discussion and consensus, and it was applied to another two transcripts by SH and another coder to assess inter-rater reliability. After resolution of conflicts in how codes were applied, satisfactory inter-rater reliability was achieved (i.e. 81%), and the remaining four transcripts were coded.31,32,33

Coded text segments were collated into code reports for further analysis. Within these code reports, the analysts summarized each code across all the focus groups to identify instances of agreement and disagreement, and also categorized any variations across thematic areas to develop subthemes. Axial coding34,35 was used to categorize subcodes and themes into concepts aligning with those found in existing literature on peer and social support to reflect the roles of peer providers and the mechanisms by which peers are thought to influence the experiences of clients in mental health services. Code frequencies by participant and focus group were generated to help the authors prioritize concepts and themes. Overlapping codes (i.e. the same phrase being coded with multiple codes) were examined to facilitate the process of identifying themes and subthemes.

IRB statement

This study was approved by the Human Subjects Research Protections Program at the University of California, San Diego, Los Angeles Department of Mental Health, and San Diego County Department of Behavioral Health Services in accordance with the Privacy Rule of the Health Insurance Portability and Accountability Act of 1996. The study included a decisional capacity assessment that was completed by the facilitator before initiating the interview, and no individuals were excluded from the study per this protocol.

Results

A total of four themes were identified that embodied the role of peers as described by TAY participants, each with several subthemes, as follows: 1) building client–peer provider relationships, 2) bridging and engaging with mental health services, 3) role-modelling recovery and supporting skill acquisition to instill hope and empowerment, and 4) peer provider roles and experiences specific to young adults, gender, and racial/ethnic minority groups.

Theme 1: Building client–peer provider relationships

We identified three subthemes related to the relationships that were built between clients and peer providers including “building trust and connection,” “addressing basic needs and goals,” and “providing emotional support.” Table 1 provides illustrative participant quotes for these subthemes.

Table 1. Building Client–Peer Provider Relationships
Full size table

Building trust and connection

Clients described their interactions with peers, how they related to peer providers, how peers compare to clinical mental health staff, and what they felt were the most important qualities and characteristics of peers. Compared to clinicians, peers were perceived to be less formal and more understanding or less judgmental. Participants described communication with their peer as easy, comfortable, or “like talking to family”. The importance of relatability and understanding generated through peers’ lived experience was described consistently across all focus groups. Participants described specific ways in which peers were especially supportive or dependable: peers were described as going above and beyond to provide help in times of need. Examples provided by clients included peers’ helping clients prepare to give a speech or helping the client seek care for a physical injury.

Addressing basic needs and goals

Clients described ways in which peer providers helped them with basic needs through direct services or referrals to other services or community resources. For example, peers addressed basic needs and helped clients with grocery shopping, assisted with personal hygiene, identified housing, or provided transportation. Clients also indicated that peers offered information and linkages to other services and resources, either within the organization or in the broader community. Clients emphasized that peers had the flexibility and knowledge to address their multiple and diverse needs. One participant specifically noted that peers helped them with their immediate or “real life” goals such as getting a job—processes that were distinct from those of therapists who have a narrower focus on longer-term or mental health-specific goals.

Providing emotional support

The majority of clients explicitly described peers’ provision of emotional support. When asked about key qualities in a peer, clients reported that peers should be friendly, empathetic or non-judgmental, and a good listener. Clients appreciated that peers were supportive without pressuring clients to do anything they did not want to do. Clients felt that this low-pressure approach facilitated engagement with services or helped them set or achieve recovery-related goals such as going to school, working, or engaging in social activities.

Theme 2: Bridging and engaging with mental health services

Clients reported that peer providers helped them access mental health services, often by leveraging the client–peer relationship. This analysis resulted in the identification of three sub-themes for peer support for engaging with mental health services, which included “reducing barriers to mental health services,” “collaborating with mental health team,” and “building mental health literacy to navigate mental health services” (see Table 2 for illustrative quotes).

Table 2. Bridging and Engaging with Mental Health Services
Full size table

Reducing barriers to mental health services

Peer providers were perceived to change clients’ relationship to mental health services by reducing barriers to accessing services or facilitating linkages to services. Specific examples included providing information about mental health services, setting up appointments with providers, or providing transportation to services. Several clients described scenarios in which amenities or services managed by peers, such as showers or laundry, initially drew them into the mental health services program; clients were later persuaded to engage further in service use by agreeing to meet with a therapist or attend a group session. Peers in one program provided “stamps cards” for attending group sessions which clients could trade in for goods at an onsite convenience store. Clients were generally appreciative of these exchanges, and importantly, no clients expressed feeling coerced or compelled to participate.

Collaborating with mental health team

Nearly half of the clients interviewed indicated that their peer providers communicated with their mental health team of clinicians, other peers, or other program staff regarding their needs for referrals to additional services.

Building mental health literacy to navigate mental health services

Several clients described instances whereby peer providers provided specialized informational support that helped build their understanding of how to navigate mental health services. Several clients specifically reported that their peers helped them navigate shared decision making and communication of any concerns with taking medication for their mental health issues to the treatment team. In one example, a client described how a peer helped him understand that if he felt that a member of his mental health team was not a good fit for him (in this example, his psychiatrist), he could simply explain that and ask for someone else. This client also described how he and his peer would discuss how his therapy sessions went, and how she helped him cope when therapy was especially intense, comparing her to an ice-pack for an athlete after they get off the playing field.

Theme 3: Modelling recovery and supporting skill acquisition to instill hope and empowerment

Peers’ lived experienced was important to clients and increased their feeling of being understood and was a defining feature distinguishing peers from other program staff. Additionally, the third theme also included clients’ descriptions of how peers served as “recovery role models,” which gave them hope for the future, and helped with “building or practicing skills for recovery” (please refer to Table 3 for exemplary quotes).

Table 3. Modelling Recovery and Supporting Skill Acquisition to Instill Hope and Empowerment
Full size table

Recovery role models

Clients often associated the importance of peer providers’ lived experience with mental health issues to being inspired by the peers, who in turn gave them hope for the future. Peers were felt to help clients address lowered self-expectations or self-stigma and helped to bolster clients’ expectations for recovery. Several clients described ways in which peers inspired them, often through discussions about how they had learned to manage their mental health, pursued their goals and reached milestones; these discussions were substantiated by peer’s success in personal and professional domains. Clients described peers as credible guides who could keep them motivated and provide them with informational and emotional support to stay on their personal path to recovery. Specifically, clients described realizing they were not alone in their struggle due to meeting peers who had faced and overcome similar mental health challenges. Clients reported feeling more hopeful about being able to reach their personal goals, and a few indicated an interest in becoming peers themselves to help others as the peers had helped them.

Building/practicing skills for recovery

Many clients identified how the peer providers helped them build or practice skills that supported their recovery, including everyday skills such as dealing with social anxiety in public settings, increasing their independence, and reinforcing skills such as coping skills or anger management that were initially taught in a mental health services setting (e.g. in peer-led group sessions or in one-on-one therapy with clinicians). Peers encouraged clients to remember and apply those skills when faced with setbacks or challenges (e.g. relapsing on drugs, recovering from a physical injury, or experience a period of more intense mental health symptoms). Clients indicated that this encouragement and reinforcement of skills increased their resiliency and helped them get through difficult times.

Theme 4: Peer provider roles and experiences specific to young adults, gender, and racial/ethnic minority groups

In the fourth theme identified in the analysis, clients reported benefits of their relationships with peer providers tied to “TAY-specific age and gender concordance” and “racial/ethnic or culture-specific peer provider roles”, which focused mainly on shared Latino identity. Relevant quotes for this theme are provided in Table 4.

Table 4. Peer Provider Roles & Experiences Specific to Young Adults, Gender, & Racial/Ethnic Minority Groups
Full size table

TAY-specific age and gender concordance

Several TAY clients had an opinion about whether or not peer providers should be similar in age or gender. Of these, most indicated or agreed that they would prefer that peer providers be slightly older than them and with more life experience in order to act as role models or mentors, but not substantially older as they might not relate to their experiences. Several participants also described peers assisting with tasks and skills associated with navigating the transition to adulthood, such as filling out paperwork or getting health insurance. Another client indicated it was helpful to have someone to talk to who had experienced mental illness during the same developmental period (i.e. late adolescence, early adulthood) and is now in recovery. Although most participants indicated that peers’ gender did not matter to them, one female participant reflected on how she appreciated having a female peer who could relate to specific challenges due to the intersection of mental health and female sexual and reproductive health.

Race/ethnicity or culture-specific peer provider roles

There was a diversity of opinion regarding the importance of racial and ethnic concordance between clients and peer providers. Some clients did not feel that that racial and ethnic concurrence with a peer provider was important, whereas other clients felt that racial and ethnic concordance between peers and providers was important. Specifically, several Latino clients described how they appreciated having a peer provider who spoke Spanish if they spoke Spanish; they also felt that peer providers with the same cultural background could relate specifically to culture-related struggles with family members regarding mental health. There was no explicit discussion about the experiences or preferences of African-American clients regarding peer providers.

Discussion

This paper describes TAY clients’ perspectives regarding the roles of peer providers as they engage with mental health services. Our findings highlight the importance of shared lived experience, specifically with mental health challenges, as key to building connection and trust in client–peer provider relationships. Social support, in the form of instrumental and informational support to address basic needs and immediate goals, and emotional support, including having someone to talk to or to provide friendly encouragement, also contributed to building client–peer relationships.36 Clients’ characterizations of the expansive nature of the social support offered by peer providers suggest that it is an important component in their engagement with mental health care and recovery process.

Peer providers who can be seen as recovery role models and who act examples of successful mental health recovery and can serve as mentors or educators, may be especially important for TAY. In the present study, these factors contributed to the formation of a trusting relationship and increased rapport among clients and their peer providers. Role modelling and mentorship is one of the mechanisms by which peer providers are thought to improve clients’ self-efficacy and sense of empowerment, including overcoming previous negative experiences with mental health services,37 and instilling optimism for the future.24,38 This approach is illustrated by recently developed “Just Do You” program, which seeks to increase engagement in mental health services by pairing youth with adults who are older by at least a decade and have successfully navigated their own mental health challenges.39,40,41 In addition, the Cornerstone NYC program for TAY living with SMI integrated supplemented individual services with peer-led groups with the goal of creating a supportive mentoring environment in a group-based setting. In Cornerstone NYC, the peer-led groups implemented a structured curriculum in order to build TAYs’ knowledge and skills.42 Preliminary data suggest that this mentoring strategy was both feasible and acceptable to TAY and pilot data indicate that favourable results for depression status, symptoms, recovery, and stigma were observed among a pilot sample.43 Finally, a recent review of youth peers providers by Gopalan et al. reported that youth peers engage in important group-based roles in some interventions, such as group management, educator, and culture broker, among others.44 While the research based on the effectiveness of peers in providing group services in transition age youth mental health remains unclear, it is clear that some youth prefer peer support groups and the field can benefit from further research to deepen our understanding of the ways in which they contribute to the recovery process.

Clients identified the provision of a diverse array services and tangible resources to as a way that peers linked and engaged them with mental health services. This finding is consistent with our quantitative findings of increased service use among clients in programs where peers were engaged in diverse service roles.26,27 Clients recognized that peer providers helped them to navigate mental health services by reducing barriers to access, collaborating with other mental health team members to address client needs, and imparting specific informational support to help clients navigate mental health services. Other studies have similarly placed peers in the role of case service navigator.10,24,44 A recent review of mental health service navigation programs identified peer providers as the most frequently utilized team member for service navigation tasks.45 TAY may be especially in need of mental health service navigation as they are learning to navigate multiple systems as adults.2,46 Rooted in their lived experience, peer providers are often able to give practical and credible insights into navigating mental health systems.10,47 Exploring the ways in which peers providers are trained to engage in navigation activities is important and may help to create best practices for TAY-serving peer providers.

Spanish-speaking Latino TAY clients appreciated having a peer provider who spoke Spanish and could relate to the specific challenges associated with culturally specific family perceptions and stigma about mental health, as has been observed elsewhere.48 This finding is consistent with our previous quantitative findings showing that the availability of Latino peer providers was associated with greater engagement in outpatient mental health services among Latino TAY.27 Other recent studies have highlighted the role of cultural and family stigma as important barriers to mental health services among Latinos, the benefits of provider concordance among Latinos in terms of patient satisfaction and engagement in care, and the potential role of peer navigators to better support Latinos with SMI accessing both mental and physical health services.49,50,51

Limitations

This analysis had some limitations. Providers led participant recruitment, which may have increased the risk of bias if only “model” clients experiencing favourable interactions with the program were recruited. One focus group was impacted by non-attendance of other scheduled participants, thus resulting in an individual interview. Additional recruitment activities were not scheduled due to saturation of themes within the existing sample. Female clients’ perspectives may have been under-represented. Although the focus groups included TAY of diverse racial/ethnic backgrounds, racial/ethnic or age data were not collected, limiting the investigators from assessing variations in experiences by age or racial/ethnic minority subgroups.

Implications For Behavioural Health Interventions

These findings provide a nuanced understanding of how TAY clients relate to and benefit from peer providers’ support. Gale and colleagues recently coined the concept of “Synthetic Social Support” (SSS) in the context of a randomized clinical trial using Pregnancy Outreach Workers to increase use of prenatal care and reduce maternal depression.52 SSS was characterized as a time-limited, commissioned service that is designed to imitate the spontaneous social support provided by an individual’s close contacts; lay staff are held accountable for the relationship, while clients’ social networks are engaged in order to enhance within-network supports.52 The investigators found beneficial effects in terms of reduced rates of depression among women with two or more social risk factors. However, the intervention was constrained by its time-limited nature and lack of components designed to overcome structural inequalities that result in disparities.52

The work of peer providers, as described by TAY clients, shares many of the traits of SSS, such as commissioned social support characterized by accountability, but it may be time-limited due to programmatic constraints (e.g. age requirements). In this study, peer support as described by TAY clients was largely unstructured. Therefore, it is important to understand whether standardization of peer support services with inherent flexibility to meet clients’ emerging needs may have a greater or more consistent impact on client outcomes as compared to less structured peer support. For example, a recent observational pilot study employed a community worker to serve as a Service Navigator to support TAY probationers, many of whom had mental health challenges.53 Navigators used a structured intake to identify TAY clients’ health, social, economic, and resource supports needed, yet, navigators had flexibility to carry out their work in the office or community settings and to pivot to address emergent needs.53 Testing structured, peer support-focused interventions may shed light on effective and scalable strategies that can meet diverse TAYs’ needs. Additional work will be needed to determine in which ways such interventions may need to be tailored or adapted to the unique conditions of community settings or TAY subgroups’ needs.