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. Author manuscript; available in PMC: 2024 Dec 2.
Published in final edited form as: J Appl Res Intellect Disabil. 2020 Mar 2;33(5):992–1004. doi: 10.1111/jar.12721

Stakeholder-driven approach to developing a peer-mentoring intervention for young adults with intellectual/developmental disabilities and co-occurring mental health conditions

Ariel E Schwartz 1; Young Adult Mental Health/Peer Mentoring Research Team1, Jessica M Kramer 2, E Sally Rogers 3, Katherine E McDonald 4, Ellen S Cohn 1
PMCID: PMC11611146  NIHMSID: NIHMS2035896  PMID: 32119173

Abstract

Background:

Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers.

Methods:

We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes.

Results:

Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees’ support teams.

Discussion:

Findings are aligned with previous research on PM.

Keywords: developmental disability, inclusive research, intellectual disability, mental health, participatory research

1 |. INTRODUCTION

Transition age young adults with IDD and co-occurring mental health conditions (IDD-MH) report high rates of anxiety and social isolation during the transition to adulthood (ages 14–22) (Faust & Scior, 2008; King, Baldwin, Currie, & Evans, 2005; Stalker, Jahoda, Wilson, & Cairney, 2011; Young-Southward, Cooper, & Philo, 2017). These co-occurring conditions (e.g., anxiety, depression, obsessive compulsive disorder) can lead to secondary health and quality of life disparities, including difficulties at work and school and reduced community and social participation (Dekker & Koot, 2003).

Identifying appropriate mental health services and supports can be difficult for young adults, as mental health services are often designed specifically for children or older adults, rather than for this unique life stage (Kramer et al., 2019). Previous work identified that barriers to care include lack of professional training, accessible services and transportation (Kramer et al., 2019; Weise, Fisher, & Tollor, 2017; Whittle, Fisher, Reppermund, Lenrot, & Troller, 2018). These barriers to services may be one reason symptoms escalate and people of all ages with IDD-MH are disproportionately likely to be hospitalized and placed in institutional settings (Lulinski-Norris, Rizzolo, & Heller, 2012; Lunsky & Balough, 2010). Hospitalization and institutionalization interrupt the process of transition to adulthood (Lulinski-Norris et al., 2012), including opportunities for education, employment and community inclusion. Therefore, as young adults transition to community life, there is a pressing need for community-based interventions driven by the stated needs of young adults with IDD-MH.

Community-based interventions are considered “best practice” for individuals with mental health conditions (Repper & Carter, 2011; Vanderplasschen, Rapp, Pearce, Vandevelde, & Broekaert, 2013) and people with IDD (Lindsay, Hartman, & Fellin, 2016). While additional evidence is still needed to identify for whom, under what circumstances, and for what outcomes peer-mentoring interventions are most effective (Lloyd-Evans et al., 2014), this community-based intervention approach has been recognized for its effectiveness in supporting the health, quality of life and participation of individuals with mental health conditions (Davidson et al., 1999; Pfeiffer, Heisler, Piette, Rogers, & Valenstein, 2011; Repper & Carter, 2011). Based on social learning theory, peer mentoring utilizes the sharing of experiential knowledge as the mechanism that facilitates positive outcomes. It is hypothesized that learning from a peer with similar experiences (i.e. another young adult with IDD-MH) can facilitate outcomes that may not occur when young adults are only provided professional support (Balcazar, Kelly, Keys, & Balfanz-Vertiz, 2011; Davidson, Bellamy, Guy, & Miller, 2012). Peer mentoring can also facilitate social connection that may be essential for the health, quality of life and participation of otherwise socially isolated young adults with IDD-MH (Gidugu et al., 2015; Stalker et al., 2011). Evidence suggests peer supports uniquely foster social networks, normalize one’s experiences and share strategies that promoted their own recovery—all of which can promote mental health, quality of life and participation (Balogun-Mwangi, Rogers, Maru, & Magee, 2019; Foley et al., 2012; Gidugu et al., 2015; Kramer et al., 2019).

Peer mentoring has also been demonstrated as an effective and feasible approach to promote health and participation outcomes for young adults with IDD without mental health conditions (Kramer, Ryan, Moore, & Schwartz, 2018; Lindsay et al., 2016). For young adults with IDD, peer mentoring can address individualized goals and learning needs (Curtin et al., 2016; Lindsay et al., 2016; Schwartz & Kramer, 2018) and promote empowerment and self-determination by providing an opportunity for connection with positive role models (Balcazar et al., 2011; Bellamy, Schmutte, & Davidson, 2017). Although not designed for young adults with IDD-MH, these interventions have demonstrated effectiveness for goals that may be relevant to young adults with IDD-MH, such as community participation and employment (Lindsay & Munson, 2018). Thus, peer mentoring may also be an effective approach for addressing mental health for young adults with IDD-MH.

Prior to developing an intervention for young adults with IDD-MH, it is critical to understand more about this population’s unique needs (Wight, Wimbush, Jepson, & Doi, 2016). Research on peer providers1 working with individuals with mental health conditions without IDD has identified specific factors that support positive outcomes, such as relationship building, providing practical and emotional supports, and experiential learning (Gidugu et al., 2015; Solomon, 2004). While these factors may also be important for young adults with IDD-MH, they may need to be implemented differently for young adults with IDD-MH. For example, young adults with IDD-MH may have different expectations for communication within relationships or require unique approaches responsive to their cognitive support needs. Additionally, most peer support research has been conducted with adults, who may have different goals than young adults with IDD, due to the difference in life stage and experiences. To inform intervention development, we sought to learn more about the priorities and clinical support needs of young adults with IDD-MH with a wide range of cognitive and communication abilities, within the context of peer mentoring. Our objectives were to identify the prioritized outcome that a peer-mentoring intervention for young adults with IDD-MH should address and to identify the features and content considerations for an effective and feasible peer-mentoring intervention for young adults with IDD-MH.

2 |. METHODS

We used a stakeholder-engaged approach to meet our objectives. Our research team included three young adults with IDD-MH and an advisory board composed of three self-advocates with IDD-MH and four professionals with expertise in mental health services to develop a peer-mentoring intervention for young adults with IDD-MH. Engagement of young adults with IDD-MH throughout the intervention development process supports the development of an accessible peer-mentoring approach, grounded in the stated needs of young adults with IDD-MH (Nicolaidis et al., 2011). We used a qualitative approach to gather additional information. We conducted focus groups with peer providers, mental health clinicians and transition specialists2 (10 focus groups, total n = 37) and two individual interviews, due to scheduling conflicts. We analysed this data using thematic analysis; the young adult mental health/peer-mentoring research team (YRT) helped lead part of this analysis. We received approval for all procedures from our university Institutional Review Board.

2.1 |. Young adult mental health/peer-mentoring Research Team (YRT)

The YRT included three young adults who were recommended by their high school staff and successfully completed a job interview. At the time, the research presented in this manuscript was conducted, the YRT included three young adults (2 male and 1 female, average age: 19.4 years); all had diagnoses of autism spectrum disorder and anxiety and/or depression.3 The YRT met for 2 hr every week (work is ongoing) and members received an hourly salary. We made meetings accessible using a range of strategies described in the literature, such as developing activities that incorporated universal design principles (e.g. use of pictures, words and activity) and reduced cognitive load (e.g. break down tasks into multiple simple steps) (Kramer & Schwartz, 2018; McDonald & Stack, 2016).

2.2 |. Advisory board

The advisory board included three young adult self-advocates with diverse intellectual/developmental disabilities and mental health conditions from across the United States with whom we had previously partnered, a parent of a young adult with IDD-MH, and researchers with expertise in this population and/or peer-delivered approaches for people with mental health conditions without IDD-MH (n = 7). We drew upon this group’s diverse perspectives and expertise related to young adults with IDD-MH and mental health services to triangulate our work with the YRT. Advisory board members met via web-conference and also completed worksheets to provide additional input and feedback on the meeting topics.

2.3 |. Participants

2.3.1 |. Focus groups

We conducted focus groups with peer providers, transition specialists, and mental health clinicians, all of whom have worked with individuals with IDD-MH. We expected these stakeholders’ clinical training and experiences would provide valuable insights about strategies that would promote successful relationship development and achievement of desired outcomes within the context of peer mentoring. To recruit stakeholders, we conducted online searches to identify organizations and individual professionals serving individuals with IDD-MH. We sent IRB-approved recruitment materials to these organizations and professionals. We screened all prospective participants for the following inclusion criteria: at least one year of experience serving in a professional role with individuals with IDD-MH; and for mental health clinicians and transition specialists, hold a professional licence.

2.4 |. Procedures

2.4.1 |. Collaboration with YRT and advisory board

The YRT and advisory board primarily provided input on identification of the prioritized outcome. To address this objective, both the advisory board and the YRT met two times to discuss four potential intervention outcomes. The academic researchers selected these four outcomes from several outcomes highlighted in a previous partnership with young adults with IDD-MH (Kramer et al., 2019) because they felt they could be feasibly addressed in a peer-mentoring context. After considering the relative importance of these four outcomes and pros and cons of addressing them using a peer-mentoring format, the advisory board and YRT agreed to further explore two of these four outcomes in focus groups with professionals: identifying leisure activities to use as coping strategies and working on community-based goals. At the conclusion of focus groups, the YRT analysed focus group data to identify the prioritized intervention outcome.

2.4.2 |. Focus groups

We used focus groups to address both objectives. The first author conducted focus groups online (with the option to call on the phone). The first author chose to not include the YRT in these focus groups, as she was concerned that participants may feel uncomfortable responding to questions related to potential challenges of young adults with IDD-MH serving as peer mentors if the YRT were present. All focus group participants completed a brief questionnaire describing their training and clinical experiences.

Focus groups lasted approximately 1.5 hr and followed a semi-structured guide, in which participants were asked about the following topics: prioritized outcomes (community-based goals vs. leisure activities to use as coping strategies), relationship development, training for peer mentors, how to support young adults with IDD-MH to work towards goals and identify and utilize coping strategies, clinical reasoning and approaches (i.e. the actions and processes that may support outcomes and rationale for these approaches) and anticipated challenges.

2.5 |. Participants

Participants (henceforth referred to as “stakeholders”) are described in Table 1 (total n = 39). Briefly, we held four focus groups with mental health clinicians and two individual interviews (interviews were held due to schedule conflicts) (total n = 10); two focus groups with peer providers (n = 9); and four focus groups with transition specialists (n = 20). Stakeholders were highly experienced. The average years of experience for mental health clinicians was 19.8 years (SD = 10.4) and 10.2 years (SD = 7.7) for transition specialists. Peer providers had an average of 6.8 years (SD = 9.3) working as a peer provider and reported a wide range of experience supporting people with IDD-MH, ranging from 5 consumers to “over 450” (in group and/or other professional settings).

TABLE 1.

Participants

Participant demographics, % (n)
Mental health clinicians,a n = 10 Transition specialists n = 20 Peer providers, n = 9
Gender identity
 Female 90% (9) 85% (17) 78% (7)
 Male 10% (1) 15% (3) 22% (2)
 Non-binary/other gender identity 0% (0) 0% (0) 0% (0)
Racial/ethnic identity
 White 70% (7) 95% (19) 78% (7)
 African American 10% (1) 0% (0) 22% (2)
 Asian 10% (1) 0% (0)
 Other 10% (1) 5% (1)
Previous experience with peer support services b Experience with individuals with IDD prior to becoming a peer provider b
I have not heard about peer-led services 30% (3) 15% (3) A family member has an IDD 33% (3)
None of my clients have received peer support specialist services 50% (5) 55% (11) A friend has an IDD 56% (5)
I have clients without IDD who receive peer-led mental health services 20% (2) 10% (2) I used to work or volunteer with people with IDD 89% (8)
I have clients with IDD who receive peer-led mental health services 10% (1) 15% (3) No prior experience 11% (1)
I have worked directly with peer support specialist 40% (4) 10% (2)
I have helped train peer support specialists 10% (1) 5% (1)
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a

Two participants had extensive clinical and leadership experiences in providing mental health services but did not have a clinical licence.

b

Percentages do not add to 100%, as participants could select multiple options.

2.6 |. Analysis

To identify the outcome that a peer-mentoring intervention for young adults with IDD-MH should address, the YRT and academic researcher used a modified content analysis process. This process focused on identifying preferred outcomes (i.e. leisure strategies for coping or community-based goals) and the rationale for these preferences. Content analysis is a qualitative approach used to systematically classify textual data to reach an understanding of themes and patterns (Hsieh & Shannon, 2005)—in this research, the rationale for a preferred outcome.

We took several steps to enhance accessibility of the content analysis process. First, the first author identified all data corresponding to opinions about the desired outcome of peer mentoring. Then, to prepare the data for the YRT’s review, she wrote each discrete comment on an individual piece of paper. She simplified the vocabulary and text, as needed, to increase accessibility. The third author reviewed these revisions to ensure that they did not change the meaning of the comment. To analyse the data, the YRT engaged in a multistep process. First, they identified whether the comment was endorsing leisure strategies for coping, community-based goals, or both. Next, they identified the participant’s justification (i.e. “why?”). Then, they organized the data to identify common justifications (i.e. themes). To decide which outcome the peer-mentoring intervention should address, the YRT counted the number of comments within each justification category.

To identify the features and content considerations for an effective and feasible peer-mentoring intervention for young adults with IDD-MH, a team of three coders used directed content analysis (Hsieh & Shannon, 2005). The first author and trained graduate research assistants transcribed each focus group verbatim. Directed content analysis draws upon existing theory that “provide[s] predictions about the variables of interest or about relationships among variables” (Hsieh & Shannon, 2005, p. 1281). In accordance with this approach, we developed an initial codebook by drawing upon previous research describing variables relevant to peer-mentoring efficacy and feasibility; that is, intervention delivery characteristics believed to influence outcomes (DuBois, Portillo, Rhodes, Silverthorn, & Valentine, 2011; Karcher & Nakkula, 2010). To refine the initial codebook, the first author read four transcripts to become familiar with the data. Next, she applied the initial codes to the same four transcripts and then examined data within each code to identify distinct, subordinate concepts. These distinct subordinate concepts were defined as additional codes. The revised codebook was then used to code all transcripts. After coding all transcripts, the primary coder reviewed all coded data, organized by code. Within each code, she labelled the main idea of each data chunk to identify additional codes and/or refine code definitions, as needed. In consultation with the third author, the primary coder organized the codes into superordinate categories (i.e. “themes”) to describe intervention features and content stakeholders expected to be feasible and effective. To evaluate the salience of these themes, the primary coder applied codes describing each theme to the full dataset. A second coder (a trained undergraduate researcher) applied codes representing each theme to 50% of the data. Then, both coders and the third author reviewed all data coded under each theme to ensure that these themes adequately captured the previously coded subordinate categories. After this review, the coding team decided that no further coding revisions were necessary. The main findings were reviewed with the advisory board. The advisory board proposed implications for peer mentoring, based on these findings.

3 |. FINDINGS

3.1 |. Outcomes that a peer-mentoring intervention for young adults with IDD-MH should address

We initially identified four themes related to why stakeholders had preferences for specific outcomes: people need help with the desired outcomes, the outcomes promote community participation and relationships, one outcome is easier, and one outcome is more important. We identified that more comments endorsed leisure activities for coping than community-based goals. Upon further evaluation, we identified a fifth theme that led participants to more frequently endorse leisure activities for coping: stakeholders felt young adults need to acquire coping skills prior to beginning community-based goals (Table 2). As a result, the YRT decided to address leisure activities for coping (Box 1). Given stakeholders’ emphasis on community participation, we agreed that mentors should encourage exploration of community-based leisure activities that can be used to cope with mental health symptoms and challenges.

TABLE 2.

Young adult mental health/peer-mentoring Research Team’s (YRT) analysis summary

Common justification (i.e. theme) Frequency of theme and selected quotes
Leisure activities for coping Community-based goals
This outcome comes first 13 1
The earl[ier] on, they learn coping skills, the better as they transition (MH13).
You’re getting employed and…it’s still going to be a stressful situation for the person because they want to do a good job. They want to own the job. They may not know the job. So they’re still going to end up having to learn some type of coping strategy (PP1).		 I think community based goals can help with coping strategies (PP12).
People need additional help with this outcome 13 15
There’s often a lot of people in their life that are helping them with community-based goals…but they don’t help her with identifying leisure activities. If it can be used as a coping strategy (PP4).
Students that are going to a post secondary education route… they’re a lot of the students that end up dropping out. And, because they don’t have the coping strategies to jump from being in a secondary setting…[to] a college setting where you’re independent on all levels (TS-unidentified).		 If we’re talking about like, a needs assessment, I feel like community based goals might be more of a need (MH6).
The schools unfortunately, have gotten to where the focus is on the graduation requirements and meeting those type of pieces…There’s such a push, though, to complete those things, that those independent living skills are falling (TS20).
This outcome is easier to address 4 4
This outcome is easier to address (cont.) I think identifying a leisure activity and coping strategies is always going to be slightly easier…you’re doing something that might seem pleasurable in the moment, that’s less anxiety provoking (MH10).
Solely based on training, I think community-based goals would be more difficult (TS-unidentified).		 I think the community based goals would probably be the easiest because there’s so many different ways that could apply (TS23).
This outcome is more important 5 5
I think [identifying and utilizing coping strategies] is the most important thing to do. Absolutely (MH9).
What’s really important is to learn the individual coping strategies, because those you can use no matter what’s going on in the environment around you. So I think the coping strategies are more important (PP10).		 I do think that community based goals are more appropriate just because they address, kind of, a greater need in my mind (TS20).
I’d go with community based goals, because most of life takes place in the community (MH8).
This outcome promotes needed community participation Both: 9
I’ve always said, treatment alone in isolation does not really help that much, you have to kind of create community, a support system, and a lot of that should be based on, rather than be based on their emotional needs, more based on their social needs. Because I think that covers a lot of bases, to be honest (MH1).
I don’t know that one entry point [outcome] is better than the other entry point [outcome]. But I know that…feeling connected and like an engaged community member with a social life that feels meaningful is like the number one need for everybody we work with (TS14).
Coping strategies, as someone mentioned, or mechanisms, to get yourself confident and prepared to go out into the community at large, and so they’re both important, but I don’t want to lose the community based goal—the community access, because that’s going to be everything (TS18).
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Note: Quotes are attributed to mental health clinicians (MHC), peer providers (PP) or transition specialists (TS). Quotes in this table represent verbatim quotes from the focus groups, rather than the modified quotes the young adult research team worked with for analysis.

Box 1. Reflection on data analysis and selection of the prioritized outcome written by the young adult mental health/peer-mentoring Research Team (YRT).

Analysing the data

The data were the things people said in the focus groups. Each piece of data was on a piece of paper. We first read the data to determine which specific pile the paper should go in. We put a sticky note on the paper to say if the data were about community-based activities, leisure activities, or both. We also put on the sticky note information about why the person chose that outcome—some reasons were, “people need help,” “more important,” “easier,” or “comes first.” Then, we made piles about the common reasons. We counted them up, and we found that we had a tie for most of the common reasons between leisure and community-based goals; however, the one that comes first is very split. There were way more “comes first” for leisure than for community-based goals.

Reasons why it is a good idea to focus on leisure activities for coping

  • I think this is a good decision because people want to do fun things, like leisure activities for coping, before important things, like community-based goals.

  • Coping strategies can help people be relaxed.

  • I think this was a good decision, because I believe that if my mentee is struggling with mental health problems, using coping strategies is the best way to deal with those issues.

3.2 |. Features and content considerations for an effective and feasible peer-mentoring intervention for young adults with IDD-MH

Several features described by stakeholders delineated the complexity of actions required of mentors in their role. We first present mentor actions and then present additional features and content suggested by stakeholders. Stakeholders felt that these actions and features would be effective, regardless of the outcome selected.

3.2.1 |. Mentor actions

Stakeholders believed mentors should use a mentee-centred approach to support mentee outcomes. This approach was characterized by the idea of “meeting [mentees] where they are at,” meaning that mentoring interactions and activities should be individualized to the mentee’s goals, interests, skills, health status, motivations, and resources. Within a mentee-centred approach, stakeholders described relationship- and outcome-driven actions.

Relationship-driven actions

Relationship-driven actions included those that support the mentor and mentee to develop trust and rapport. The three relationship-driven actions emphasized by stakeholders were as follows: sharing experiences, normalizing actions, and defining roles and boundaries. First, stakeholders described the importance of the mentor and mentee sharing experiences. Stakeholders believed that engaging in mutually enjoyable activities would facilitate the rapport and trust needed to address more personal or emotionally laden topics. For example, one transition specialist shared, “I think any opportunity to do an activity together, where you’re being active, helps actually speed up that connection process” (TS8).4 Supporting this assumption, several peer providers told stories about using shared experiences to build rapport. For example, “We were playing music, I would subtly begin to talk to them and they would begin to talk among each other. And we had the most amazing conversation…It was really a nice way to get them to trust me, for them to trust each other” (PP6).

Second, stakeholders described normalizing actions that helped the mentee feel there are “others like me.” Normalizing actions have been well documented as an important therapeutic tool used by peer providers (Gidugu et al., 2015; MacLellan, Surey, Abubakar, & Stagg, 2015). Normalizing actions include identifying how one’s experiences and emotions are within typical human experiences and emotions. Stakeholders believed these actions would foster rapport and trust, while also potentially leading to secondary outcomes, such as increased confidence and a decrease in feelings that “nobody can understand [me]” (TS14). The two primary normalizing actions participants described were validation and therapeutic self-disclosure. Validation included conveying respect for and acknowledging the veracity of another person’s experiences and/or perspective (Kielhofner & Forsyth, 2008). This can take the form of sharing an understanding of a situation: “Saying to him, ‘yeah it stinks. And this is awful. And I hate it when it happens to me too’” (TS11) or explicitly sharing a similar experience: “When they struggle…the peer mentor may have said, ‘you know, I felt that way last week. This is what it felt like to me’” (MHC13).

Aligned with literature from peer providers, stakeholders emphasized mentor self-disclosure as a potentially effective normalizing action. Self-disclosure refers to sharing one’s own identity and experiences as a person with IDD-MH (Marino, Child, & Campbell Krasinski, 2016). Stakeholders shared: “As a peer, it’s okay to be vulnerable and transparent…that’s how people can relate to you if you’re vulnerable or transparent with your lived experience” (PP1); “I think it’s very important for people to tell their stories. And how that story, you know, can help assist another person…I’ve seen that really kind of build relationships among peer mentee kind of situations” (TS11). However, stakeholders also emphasized the importance of “knowing what is appropriate disclosure” (MHC12) and differentiating “am I sharing this because it’s about me, or am I sharing because I think it’s going to benefit [the mentee]?” (MHC10).

Third, stakeholders described actions related to role definition. This includes clearly defining the mentor’s and the mentee’s roles, including boundaries for frequency and type of communication and content that could be discussed. Stakeholders varied in whether these boundaries should be set collaboratively or by the intervention. Setting clear boundaries “so that they’re both aligned with their expectations of what the relationship is,” (MHC13) can lay the foundation for the relationship, by helping “set up that understanding…and expectations for the peer relationship” (MHC12). Stakeholders discussed how defining the role of mentors and mentees was important, given the unique nature of the relationship: “You’re being a friend, but you’re also on a different level here. And so you have some responsibilities that the [mentee]…does not have” (MHC11). Several stakeholders, especially peer providers, emphasized the importance of the mentors understanding that while they may have training and specific responsibilities, it is important to support mentees’ autonomy and honour their lived experiences and expertise: “You’re equal…you’re not directing or telling them what to do…just being there-not just for support, but just to listen carefully and mainly use that as your stepping stone to guide you with what their needs are” (PP10). Having and consistently following through on clear boundaries, expectations, and a collaborative relationship, all can foster trust between mentors and mentees.

Outcome-driven actions

Stakeholders described three types of outcome-driven actions mentors could use to support outcome achievement: providing cognitive supports, direct instruction, and supporting self-awareness. First, stakeholders described cognitive supports, defined as, materials, prompts, and/or information that supports mentees’ cognitive processes (e.g. memory, attention, executive functioning, self-regulation, etc). These supports are essential for supporting generalization to everyday life, because stakeholders felt “[this] population in particular has difficulty carrying it out in the moment, because they’re experiencing emotions that kind of shut down their memory and their ability to access that information” (MHC1). Stakeholders described diverse supports, including using checklists, reminders, visual and verbal cues to help mentees use coping strategies:

I developed the checklist of something she could…when something’s bothering her, these things she could do.

(MHC1)

[We] developed a toolbox of strategies that he felt would help him to deal with his anxiety or with his anger, and the toolbox did not remain stagnant…They were written on cards…we had these different coping strategies on a ring that he wore with his badge that he had for work. And if he was having an issue, he could look at his ring.

(TS17)

Literally put sticky notes…around the house…are you deep breathing today?…Whatever the person comes up with…sometimes that can be really helpful because, it’s a reminder.

(PP4)

Direct instruction, using a range of instructional strategies, was also described as critical for promoting outcomes. Stakeholders shared the belief that “[mentees] need to have the strategies in order to use them…So the important thing is to teach it first” (MHC1). Mentors could provide direct instruction by teaching, suggesting courses of action, and creating opportunities for experiential learning/practice. One peer provider shared how experiential learning has been an effective approach with peers: “While I’m over there, I’ll go—‘okay, let’s do a five minute meditation,’ and she’ll go, ‘ok’” (PP4). Several stakeholders described how role play could be used to practice skills and/or responding to challenging situations. Another important component of direct instruction was sharing ideas for courses of action: “Saying, ‘oh, I noticed that you really like to color or draw,’ and just point out those things in case they hadn’t thought of it before” (TS19). Sharing ideas for courses of action includes breaking down goals into smaller steps: “If somebody has a job as their goal, but they’re not quite ready to go out, then we…tal[k] about the step back … What do you have to do to get a job?…See what things are available, and then build smaller goals to get there” (PP10). Herein, stakeholders believed a range of direct instructional approaches could promote mentee outcomes.

Supporting self-awareness through psychoeducation and self-monitoring were considered critical roles of mentors to support generalization and carry-over. Supporting self-awareness includes helping mentees understand their mental health condition, for example, “You teach them what are your warning signs. When you start to feel a pit in your stomach or when you start to not sleep well, there are the signs of your depression. Naming it for them, that’s huge, just having them explain it, having them understand what it is” (MHC9). Helping mentees become more aware of their mental health condition may serve as a foundation for self-management. Stakeholders also described how mentors could help mentees learn how to identify their emotions to help them initiate use of coping strategies and evaluate their efficacy:

Oftentimes it’s just getting into the habit of…what am I feeling right now, or looking at that feeling face and then rating it on a particular scale, and just getting into the habit of when I’m in this particular state of mind, at this particular rating intensity, then I’m gonna use my coping skills.

(MHC6)

Once mentees are using the coping skills, mentors could support mentees to “indicate how satisfactory it was, maybe a color coding or whatever…as far as their own monitoring of it” (TS24). Stakeholders stated that self-monitoring may include the use of cognitive supports, such as visual prompts, and that self-monitoring strategies needed to be practiced with the mentor.

3.3 |. Intervention features and content

Stakeholders described five additional components they believed would support mentees to achieve outcomes: support team collaboration, mentor/mentee matching, safety considerations, mentor support, and degree of structure.

First, stakeholders emphasized the importance of mentors collaborating with their mentee’s support team, including parents, teachers, support staff, etc. This support is essential for ensuring generalization and follow-through. For young adults, the role of parents, in particular, was emphasized: “If the family isn’t on board, you get kind of lost” (MHC8); “You have to know how to join with the family, and gradually, gently shift how they see things…we absolutely have to have the family on board” (MHC3); “Their parents would have a very big voice in their life. And so that, that is a consideration” (PP4). Others described a broader support network:

And then things can fall apart because they don’t have the support and getting to their meetings or being able to meet with their peer mentor in person….More than likely, they’re not driving. So they are going to be depending on other people. So you’re going to also have to deal with those adults’ schedules as well.

(TS17)

Notably, only two stakeholders raised concerns about confidentiality/privacy, suggesting that it is taken for granted that the mentee will consent to multiple people becoming involved in the mentoring process.

Second, stakeholders had questions about how mentors and mentees would be matched. There is a wealth of research on this topic, yet a lack of consensus on best practice (for a review, see Pryce, Kelly, & Guidone, 2013). Stakeholders felt that mentors and mentees should be matched based on similar interests and experiences. For example, one transition specialist shared, “There’s some benefit in doing some interest inventories. So there’s some matching…more of an opportunity for shared enjoyment” (TS24). Another transition specialist added that matching people based on interests could help mentees “bond over that and continue to build a relationship” (TS5). Some stakeholders also noted the importance of communication style: “It goes back to like, that communication style, or just, you know, two people having the same interest doesn’t mean that they’re going to click” (TS12). Because matching can be difficult, some thought it may be helpful to have a “trial” period and/or for mentors/mentees to have an opportunity to choose each other and have an opportunity to “switch it up and try somebody else” (MHC11) if the match is not going well.

Third, stakeholders emphasized safety considerations. They acknowledged that young adults with IDD-MH may share thoughts about self-harm, suicidality, and/or harm to others. Most stakeholders felt it was essential for mentors to be prepared for how to respond if this occurred. Stakeholders shared: “What do you do when somebody’s telling you that they hurt themselves?. That’s an issue. Or if somebody is suicidal” (MHC1); “If the mentee has anything self-harming or anything concerning, that really needs to be addressed quickly” (TS6). Other safety considerations were boundaries in the relationship, to ensure emotional safety and mentor and mentee awareness of words, topics, and experiences that may trigger traumatic memories. Notably, stakeholders’ safety concerns were focused on mental health, rather than physical safety or abuse.

Fourth, stakeholders felt it was imperative that mentors feel well-supported. They thought mentors should have training about their role and how to respond to differences in opinions, challenging emotional disclosures, and discussions of self-harm. Stakeholders felt regular supervision and the ability to check in with a supervisor if uncertain was critical, especially about safety concerns. Accordingly, “knowing that they have received training and that if something comes up there is somebody else there that is able to guide them” (MHC11) was critical for them feeling comfortable referring an individual for peer mentoring. Training and tangible tools (e.g. flow charts and checklists) were other ways to support mentors. Stakeholders felt that training should address, “how to create relationships” (TS8), manage “personality conflicts and the social emotional pieces,” (TS-unidentified) in addition to identifying safety concerns (as described above).

Finally, there was a tension between the value of a structured programme and creating a relaxed environment for mentees. Several stakeholders felt that the dyad would develop stronger relationships and trust if there were no established expectations for conversation topics and activity performance. Therefore, these stakeholders felt less structure would be beneficial, especially early in the relationship. One transition specialist shared:

I love no structure…all our programs have to be scheduled and structured to the point where, we’re giving [young adults] scripts and checklists and everything is sort of rehearsed and predicted and laid out…I am a huge advocate for throwing that all out the door…I think that some [young adults] with intellectual disabilities, and even mental health—we always have to keep them busy and they always have to have structured time, so that there’s no room to kind of screw up or, or be anxious, or you know, whatever. That we predicted this and we planned this all out for you and you can’t screw up again. I go back to [being] their authentic selves.

(TS9)

Yet, others felt that young adults with IDD-MH may benefit from and feel more comfortable with structured and predictable mentoring sessions. For example, one mental health clinician shared, “I find that for this population, having something pretty structured, like CBT, and a little bit more directive—very here and now—can be helpful. That can be kind of containing…So drilling down what to expect and having those parameters ahead of time, I have found has worked well” (MHC6). Stakeholders also acknowledged that increased structure would help mentors, as they could prepare for mentoring sessions with sample scripts and/or checklists.

4 |. DISCUSSION

This study describes a stakeholder-driven approach to developing a peer-mentoring intervention for young adults with IDD-MH. As part of the intervention development process, we collaborated with the YRT and advisory board and conducted focus groups to identify the outcome, features, and content for an effective and feasible peer-mentoring intervention for this population. Findings from this study suggest that stakeholders believe peer mentoring for young adults with IDD-MH share many similarities with that of peer support for other populations. Research on peer providers’ roles and activities has identified several key areas of support that were evidence in this study: social, emotional, and practical (e.g. “informational,” “tangible”) supports (Gidugu et al., 2015; Milton et al., 2017). Aligned with the literature on peer support in mental health, stakeholders in this study emphasized the potential efficacy of normalizing actions (e.g. disclosure, validation) to help individuals feel they are not alone (Gidugu et al., 2015). Thus, the peer-mentoring relationship itself may be an important mechanism of change for reducing social isolation (Miyamoto & Sono, 2012). The similarity in anticipated features and content suggests the potential for peer-mentoring interventions for young adults with IDD-MH to draw upon existing models from the peer support literature from other populations (e.g. Kohut et al., 2016; Cook et al., 2011). These models will likely need to be adapted to meet the cognitive support needs of young adults with IDD-MH. This may involve the inclusion of additional and/or different cognitive supports (e.g. visual cues, checklists) and modification of concepts (e.g. coping strategies, self-monitoring, mental health symptoms) to ensure they are accessible to young adults with IDD-MH (Kramer et al., 2018). Here, we discuss the importance of two essential components of peer-delivered interventions: experiential learning and therapeutic use of self.

Experiential learning is a hallmark of peer support services (SAMHSA-HRSA, 2015) that focus group stakeholders suggested would promote outcomes for young adults with IDD-MH. Stakeholders described the importance of mentors and mentees actively engaging in activities together for two purposes: learning skills and strengthening the mentoring relationship. Experiential learning is an effective learning strategy for young adults with IDD and supports generalization (King, Baldwin, Currie, & Evans, 2006). One reason this instructional approach is effective is because real life learning experiences reduce the need for abstract and future-oriented thinking and enable identification of challenges that may be unanticipated by a didactic curriculum. In addition, experiential learning is more conducive to individualized approaches based on the needs and goals of young adults and can provide opportunities to experience “real life” success, thereby increasing self-efficacy (Bandura, 1982). During the experiential learning process, mentors can provide emotional and practical support to promote motivation and success, in addition to supporting mentee reflection to facilitate generalization to other contexts (Kolb & Kolb, 2009). Finally, research supports stakeholders’ expectation that engaging in shared activities may promote connection (Rossetti, 2011).

Stakeholders in this study highlighted the importance of relationship-driven actions, which together may be described as “therapeutic use of self.” Therapeutic use of self refers to, “the therapist’s conscious efforts to optimize the therapeutic relationship” and is a “conscious and purposeful process that reflects the understanding of the client and planned strategies of interaction” (Taylor, Lee, & Kielhofner, 2011, p. 6). Therapeutic use of self can include using empathy, humour, validation, and the provider’s own personality and experiences to enhance the therapeutic alliance and promote clients’ feelings of acceptance (Arnd-Caddigan & Pozzuto, 2008; Reupert, 2007). The association between effective “therapeutic use of self” and treatment outcomes has been reported in the peer provider literature and many other clinical fields, ranging from social work to occupational therapy (Dewane, 2006; Leach, 2005; Palmadottir, 2003). A recent qualitative metasynthesis describing the experiences of peer support workers in diverse health fields identified that actions related to, “therapeutic use of self by the [peer provider are] the core component of their effectiveness” (MacLellan et al., 2015, p. 2).

Effective therapeutic use of self requires social–emotional and communication skills and the ability to adapt to different types of people (Arnd-Caddigan & Pozzuto, 2008). Mentors and mentees with IDD-MH may have individualized ways in which they communicate, interpret, and respond to emotions. However, given that communication is at the centre of therapeutic use of self, for young adults with IDD-MH, it may be possible that it is more important to match mentors and mentees based on preferences for communication and interpersonal interaction style. For example, individuals with autism spectrum disorder often find that it is easier to connect with other people with autism, because the autistic community may implicitly share its own social norms and communication styles (Bagatell, 2010). Other mentor/mentee dyads could be assigned based on the mentor’s comfort with and ability to adapt to the mentee’s communication style (e.g. use of single word responses, augmentative communication devices, etc.). This approach to matching is in contrast to research that has primarily described demographic (e.g. gender and race) and interest-based approaches to matching (DuBois et al., 2011; Pryce et al., 2013).

One way in which therapeutic use of self may be unique in peer-mediated interventions compared to traditional clinical practice is the centrality of self-disclosure. While self-disclosure may be considered inappropriate in many therapeutic relationships, for peer providers, the inclusion of these actions is considered an essential tool related to therapeutic relationships (MacLellan et al., 2015; Marino et al., 2016; Miyamoto & Sono, 2012; SAMHSA-HRSA, 2015). However, for self-disclosure to have these therapeutic effects, mentors must be able to describe their experiences and diagnoses using a positive approach (Marino et al., 2016). This may only be possible if individuals have a positive sense of identity as a person with IDD-MH (Gill, 1997). Therefore, it is essential to support peer mentors to cultivate a positive sense of self, in relation to, rather than in spite of their disabilities and mental health challenges. This is no easy task, given the significant stigma associated with disability and mental health challenges. The disability rights movement, self-advocacy movement, and the mental health recovery movement offer many resources and approaches to instilling a sense of positive identity and even pride. Furthermore, service systems can create a welcoming and affirming environment for mentors, so the implicit messages articulated by the agency are empowering and celebratory.

4.1 |. Implications

We conducted this study for the purpose of intervention development. Our findings clarified several components of the intervention. First, because stakeholders felt that coping strategies were a pre-requisite for working towards community-based goals, we decided that the intervention will address identification and utilization of leisure activities that can be used as coping strategies. Although many solitary leisure activities may be effective coping strategies, given stakeholders’ emphasis on community participation, and the documented social isolation of young adults with IDD-MH (Stalker et al., 2011), mentors will encourage mentees to explore at least one community-based leisure activity.

Stakeholders highlighted the importance of mentor training and support. This is aligned with previous research, suggesting that young adults with IDD can deliver a standardized peer-mentoring intervention with diverse supports. However, as reported, the level of supports needed may limit feasibility of this approach in service settings with limited resources (Kramer et al., 2018). As highlighted by the stakeholders, we will make sure that mentors have appropriate training and supports to be responsive to safety concerns.

Our design highlights the benefits of designing new mental health programming in partnership with young adults with IDD-MH. The YRT’s input ensured that the peer-mentoring intervention is addressing an outcome valued by young adults with IDD-MH. Additionally, as our work continues, the YRT’s involvement will ensure that the activities, content, and delivery characteristics (e.g. format, etc) are accessible and engaging for young adults. Finally, the involvement of the YRT supported individual team members to develop skills relevant not only to mentoring, but also their daily lives. One member of the YRT shared: “I greatly enjoy doing research at [university], because I know that many of the skills I learn by doing this research can be applied to how I can assist other young adults with disabilities and mental health conditions.”

4.2 |. Limitations and future research

There are some limitations to this study. First, because there are no existing peer-mentoring interventions for young adults with IDD-MH, the stakeholders who participated in focus groups did not have firsthand experience with this approach. Rather, they had similar, or related experiences. While this was a sample of very experienced professionals, their suggestions, experiences, and perspectives were based on a different clinical context (e.g. school, clinic, mentoring by a non-peer), potentially limiting transferability to mentoring delivered by a peer in the community. A related limitation is that we had difficulty recruiting peer providers, who are the stake-holder group with experiences most similar to the target context (peer mentoring). Our inclusion criteria required that peer providers have experience supporting at least one consumer with IDD-MH. Because peer provider services are primarily accessed through mental health service agencies, it is possible that many people with IDD never access these services, due to the siloing of developmental disability and mental health department services (Whittle et al., 2018; Whittle, Fisher, Reppermund, & Trollor, 2019). The input of young adults and caregivers may have also enhanced this study. Despite these limitations, an important strength of this study is its use of a stakeholder-engaged approach. Throughout, the input of the YRT and advisory board guided the research and analysis process; their agreement with the perspectives of focus group participants helped assure us of the potential social validity of the peer-mentoring approach.

Given the inconclusive research on mentor matching across all mentoring settings, research exploring match strength and efficacy for young adults with IDD-MH would help advance the field. This study also highlighted the importance of therapeutic use of self. Research exploring how to teach this complex skill to people with IDD may help promote peer mentoring. Prior to this research though, it is necessary to learn more about the types of interactions that may be most effective with diverse young adults, especially those who have different preferences for interpersonal interactions (e.g. customs for physical contact, personal disclosure, use of literal vs. abstract language to convey emotions) and/or come from diverse cultural backgrounds. Much attention is given to how to effectively end therapeutic relationships (i.e. “termination”; e.g. Delgado & Strawn, 2012). As part of further investigation into therapeutic use of self, it is important to learn about young adults’ preferences concluding the mentoring relationship.

5 |. CONCLUSION

We used a stakeholder-driven approach to inform development of a peer-mentoring intervention for young adults with IDD-MH. Stakeholders demonstrated a preference for an intervention that supports young adults to identify and utilize community-based activities as coping strategies. Stakeholders emphasized the importance of a mentee-centred approach that could be operationalized by specific relationship-driven and outcome-driven actions. They also discussed the importance of safety considerations, mentor matching, and collaboration with mentees’ support teams. Stakeholders varied in their opinions about the optimal degree of structure the intervention should include. These findings aligned with previous research on peer providers supporting people with mental health conditions without IDD. Based on these findings, we propose that peer mentors with IDD-MH should receive training in facilitating experiential learning and therapeutic use of self. Instruction in these approaches may benefit from a strength-based and disability-positive approach. Lessons learned from this research will be implemented in feasibility testing of the intervention.

ACKNOWLEDGMENTS

The Mental Health/Peer Mentoring Team includes Jesse Corey, Timur Gizatullin, and Emma. This work was funded by the Deborah Munroe Noonan Memorial Research Fund (PI: Schwartz) and the American Academy for Cerebral Palsy and Developmental Medicine (PI: Schwartz). The authors thank the research assistants on this project: Brice Hounshel, Tara Loeper, Melanie Miller-Himmel. The findings of this manuscript were previously presented at the Occupational Therapy Research Summit (Charleston, SC, June 2019).

Funding information

Deborah Munroe Noonan Memorial Research Fund; American Academy for Cerebral Palsy and Developmental Medicine

Footnotes

CONFLICT OF INTEREST

The authors report no conflicts of interest.

1

  A peer provider is someone “who uses his or her lived experience of recovery from mental illness and/or addiction, plus skills learned in formal training, to deliver services in behavioral health settings to promote mind-body recovery and resiliency” (SAMHSA-HRSA, n.d.).

2

  Transition specialists are secondary school-based professionals who work specifically on preparing students to transition out of secondary school. In this study, transition specialists included educators, rehabilitation counsellors, occupational therapists, and social workers.

3

  As the study has progressed, we have employed two additional YRT members: 2 female, both with different developmental disabilities (spina bifida and a genetic syndrome).

4

  Quotes are attributed to stakeholders by stakeholder group and ID number: TS: transition specialist; PP: peer provider; MHC: mental health clinician.

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