Date of Award

2021

Document Type

Dissertation

Copyright Status for Dissertations

All Rights Reserved

Degree Name

Doctor of Philosophy (Ph.D.) Nursing

Department

Nursing

Abstract

Purpose The purpose of this study was to explore the experiences and/or challenges of parents or guardians of school-aged children who have intellectual and/or developmental disabilities (IDD) and are living in Jamaica. Background Raising a child with IDD can be overwhelming for parents and families, as it may drain them financially, emotionally, psychologically, and socially. Due to the relative poverty and scarcity of adequate resources in Jamaica, the burden of caring for a child with special needs may be challenging. Attitudes toward persons with disabilities are negative in Jamaica. Although several laws are designed to protect children with disabilities, there are still legal exclusions negatively impacting children and adults with developmental disabilities. Culture influences how parents raise their children and how they may be affected by raising a child with IDD. Method A qualitative method of grounded theory to uncover an in-depth analysis of caregiver challenges of parents with children who have IDD.A diverse purposive sample was obtained of 21 parents and guardians raising school-aged children with IDD. Children in the study ranged from 3 to 18 years old. The interviews were recorded, transcribed, and analyzed into concepts and constructs to develop a grounded theory. Results Lack of support and services was identified as the basic social problem and the core concept as the challenges they face. The lack of support and services was a sense of disappointment for parents and guardians, without which they felt no hope or normalcy for their children. They found a lack of health care professional support, empathy, and understanding. Five supportive theoretical constructs surround the core concept of the challenges they face: Burden, It’s Challenging, Emotional and Mental Well-Being, Professional Awareness, and Social Stigma. Conclusion Despite differences, there were shared elements in their experiences and challenges. Children with a disability bring multiple challenges to parents such as additional financial burdens, dealing with the child’s problematic behavior, social stigma, and societal issues.

Related Pillar(s)

Study

Included in

Nursing Commons

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