Meeting disability with resiliency, hope and agency: a narrative study of caregivers of children with cognitive and physical disabilities

UNCG Author/Contributor (non-UNCG co-authors, if there are any, appear on document)
Carol Ann Kirby (Creator)
The University of North Carolina at Greensboro (UNCG )
Web Site:
Leila Villaverde

Abstract: Studies of caregivers of children with disabilities have historically assumed a deficit or disease model, while at the same time relying heavily on quantitative measures of stress and maladaptive behaviors. There is a dearth of qualitative and constructivist research into caregivers who are successfully thriving while caring for children with significant physical and cognitive disabilities. The purpose of this dissertation is to use parent/caregiver narratives to provide a fuller picture of how the experience of raising a child with disabilities might in fact be positive and transformative. Eight caregivers and caregiving couples who self-identified as resilient, hopeful, and as advocates for their children are interviewed in both school and home settings, with the goal of giving medical, educational, and therapeutic professionals a fuller, more intimate picture of these lived experiences. A post-critical, ethnographic framework--putting the interviewer and interviewee in conversation with one another while preserving the textual integrity of the participants' stories--is central to the research methodology. Internal and external systems of caregiver support are examined, as well as the privileged concept of normalcy which acts to thwart full societal acceptance and inclusion. Implications for caregiver and community responses through advocacy, an ethic of care, and public policy initiatives are proffered.

Additional Information

Language: English
Date: 2013
Advocacy, Caregivers, Children, Disability, Hope, Resiliency
Parents of children with disabilities $z United States $v Case studies
Children with disabilities $x Care
Resilience (Personality trait)

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