Opportunities Beyond the Cliff: Exploring the Lived Experiences of Caregivers of Children With Intellectual and Developmental Disabilities (IDD) Who Seek Business Creation as a Pathway to Meaningful Employment

Abstract

Caregivers of people with intellectual and developmental disabilities (IDD) hold a powerful influence over their children’s pursuit of meaningful employment, yet many experience a lack of support and struggle to find options that prioritize job fit, social opportunities, and independence. This void has motivated caregivers to pursue alternatives for their children, such as entrepreneurship, yet few studies have explored business creation in the context of lifelong caregiving. Using an interpretative phenomenological analysis approach, this study examined the lived experiences of caregivers who have developed business opportunities for and with their children with intellectual and developmental disabilities (IDD). The four theories that framed this study were ecological systems theory (Bronfenbrenner, 1979), broaden-and-build theory (Fredrickson, 2001), resilience theory (Windle, 2010), and self-determination theory (Ryan & Deci, 2000, 2017). The central question guiding this inquiry was: What is the experience of caregivers who seek business creation as a pathway to meaningful employment for their child with IDD? Particularly of interest was the role that support, motivation, and psychological capacity played in their experience. Through questionnaires, a focus group, and in-depth interviews with 11 caregivers conducted via Zoom, this study comprehensively captured and analyzed the multifaceted experiences involved. Data analysis produced a thematic analysis including five primary themes: complexity of disability, caregiver motivation and resilience, support system and relationships, advocacy and social responsibility, and emotional and existential experiences. Caregivers were primarily motivated by their altruistic desire to help others and to fulfill a need for meaningful employment. The growth of their children’s skills and the expansion of their businesses were considered successes. Findings suggest that the primary difficulty is in accessing, finding, and retaining support for their dual roles as caregivers and entrepreneurs. To address this challenge, recommendations include educator, employer, service provider, and caregiver training, as well as inclusive hiring and accommodation guidance and mental health support that specifically acknowledges the reality of the caregiver’s dual roles. To improve the current state of caregiver support, it’s essential to see their unique abilities and contributions in the same spirit in which they appreciate, value, and respect people with IDD.