What are the lived experiences of caregivers to adults with intellectual and developmental disabilities

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December 2023
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Abstract

The purpose of this qualitative phenomenology design was to describe the experiences of caregivers to adults with I/DD in the State of Texas. The theory guiding this study was the social constructivism framework which focused on how language and culture frame how individuals communicate, experience, and understand reality. In this study, the social constructivism framework assisted in understanding the challenges, and coping strategies employed by caregivers as they navigate the demands of caregiving. This study was guided by one research question: What are the lived experiences of caregivers of adults with I/DD that contribute to their perceived quality of life? An individual, semi-structured interview was completed with each of the four participants. The participants were asked three general questions: (a) What have you experienced in providing care to an adult with I/DD; (b) What are the highlights of your experience; and (c) What would you change. Through the narratives and experiences of the participants, several themes emerged such as familial bonds, challenges, coping mechanisms, and the need for support. The theme of family bonds underscores the connections that fuel caregiving journeys, while the challenges and coping strategies unveil the resilience of caregivers in navigating multifaceted responsibilities. The study's implications provide evidence for policy changes and societal shifts that can empower caregivers, enhance their support systems, and amplify the quality of life for both caregivers and those they care for.

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Lived Experiences of Caregivers to Adults with Intellectual and Developmental Disabilities
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