Date of Conferral

8-27-2024

Date of Award

August 2024

Degree

Ph.D.

School

Public Health

Advisor

Jeanne Connors

Abstract

Transitioning to adulthood can be challenging for adolescents with acquired intellectual disability (caused through an accident, brain injury, neglect, or health condition) and their caregivers. The purpose of this study was to examine lived experiences of caregivers who cared for adolescents with acquired intellectual disability during their transition into adulthood. This study used the phenomenological qualitative design guided by the social support theory. Three research questions were asked: what do caregivers of an adolescent with acquired intellectual disability experience as they support the adolescent’s transition to adulthood, how do caregivers of an adolescent with acquired intellectual disability experience social support for their caregiving role in the adolescent’s transition process to adulthood, and how do caregivers of an adolescent with acquired intellectual disability experience the development and implementation of the adolescent’s transition plan. Eleven caregivers were recruited using criterion sampling from online caregiver support groups. Interviews were conducted with participants. NVivo was used to manage and analyze data. Three themes were identified: knowledge and meaning of caregiving, transition plan development and implementation experience, and social support systems. Caregivers expressed the need to receive support for their roles. They appreciated informal support from family and friends and they wanted more formal support from school and medical staff. Primarily, they desired communication throughout the transition process. This research will contribute to positive social change by highlighting what this subset of caregivers’ needs are for their support roles and development of targeted interventions based on those needs.

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