Understanding the Support Needs of Family Caregivers Living with Severe Developmental Disability: An Interpretive Phenomenological Analysis

TL;DR

This study explores the support needs of family caregivers of individuals with severe developmental disabilities, highlighting gaps in healthcare and societal support.

Contribution

The study identifies specific support needs and themes across the lifespan of caregivers, offering actionable recommendations for healthcare and societal systems.

Findings

Five themes emerged, including gaps in healthcare support during childhood and transition to adult services.

Family caregivers experience associative disability and stigma, impacting their well-being.

Recommendations include increasing community support and integrating individuals with disabilities into society.

Abstract

Background/Objectives: Living with a disabled family member has extensive implications for the whole family involved in their care, and there is dependency on healthcare support for maintaining quality of life. This qualitative study, conducted in Northern Ireland, investigated the support needs of different family members living with a severely impaired individual across the lifespan. A key objective was to identify support needs for intervention. Methods: In-depth semi-structured interviews were conducted to obtain data from eight mothers, fathers, sisters and brothers of a profoundly disabled child or sibling. Data was analyzed using Interpretive Phenomenological Analysis, allowing for the application of double hermeneutic in which the researchers derived meaning from the lived experiences of participants. Results: The analysis yielded five themes in total. Three themes were related to gaps in healthcare systems: Support Needs in Childhood, Support in Transition into Adult Services, and Worry for the Future; and two themes were linked with support needs: Associative Disability in Family Members; and Stigma. All family members had caregiving roles, and these had similarities and differences according to the relationship with the care-receiver. Participants recognized their families were survivors, however maintained a family tragedy rather than positive change outlook. Conclusions: Recommendations derived from the findings to alleviate the stressors of the situation for family members include increasing community support and age-related respite facilities. Additionally, improving and enhancing education of disabilities in schools, and immersing and further integrating individuals with disability into society, will alleviate the alienation, isolation and loneliness experienced by family members.