"Presuming competence and assuming that accommodations will be the inroads to access and participation": factors facilitating inclusive research and peer mentoring as opportunities for social inclusion for people with intellectual/developmental disabilities
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People with intellectual/developmental disabilities experience exclusion from social spaces. In this dissertation, I address social inclusion in: a) research and b) peer relationships in the context of mental health services. To address inclusion in research, we conducted key informant interviews with academic researchers (n = 8) and co-researchers with intellectual disability (n = 6) who have expertise in inclusive research (study 1). Using principles of grounded theory we analyzed the data and developed a conceptual model describing the contextual factors and team-level factors that coalesce to foster and maintain inclusive research collaborations. We found that team members’ values and characteristics influence inclusive research collaborations and drive a commitment to accessibility. Additionally, perceived personal and societal benefits contribute to co-researcher involvement. Contextual factors, including funding and partnership duration, influence teams’ processes and structures. These processes and structures influence the extent to which co-researchers perceive the inclusive research team to be co-facilitated or academic-facilitated. This model describes how contextual and team-level factors and processes may be optimized to support co-researcher engagement in inclusive research. To address peer relationships in the context of mental health services, I used a stakeholder-driven approach to develop a peer mentoring intervention for young adults with intellectual/developmental disabilities and co-occurring mental health conditions (study 2). This approach included partnership with 3 young adults with intellectual/developmental disabilities and co-occurring mental health conditions and a 7 member advisory board composed of self-advocates and professionals. In addition, I conducted focus groups with mental health clinicians (n = 10), peer support specialists (n = 9), and transition specialists (n = 20) to identify the desired peer mentoring outcome and intervention components and content that may facilitate these outcomes. The focus group participants identified several relationship-driven and outcome-driven actions peer mentors may use to support outcome achievement. Stakeholders also identified five components relevant to the intervention: safety considerations, mentor matching, degree of intervention structure, mentor training and support, and collaboration with mentees’ support teams. These findings draw attention to the importance of social relationships and individualization of both mentoring and supports for mentors. Together, these two studies highlight the importance of valuing the unique strengths of people with disabilities and the need for task and environmental adaptations to foster social inclusion of people with intellectual/developmental disabilities.
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