Experiences of Family Caregivers of Children with Intellectual Disabilities Living in Low-Socioeconomic Communities

Abstract

Qualitative studies exploring caregiver experiences of children with intellectual disability are limited and even more limited in the context of low socioeconomic settings. This qualitative descriptive study was done to explore the experiences of family caregivers of children with intellectual disability, living in low socioeconomic communities. The McCubbin and McCubbin (1993) Resiliency Model of Family Stress, Adjustment, and Adaptation was used as the theoretical framework for the study. Semi-structured questions for the interview-guide were derived from this framework. Fifteen participants were interviewed from a large metropolitan area.

Results: The caregiver ages ranged between 30 and 57 years. Caregivers interviewed were primarily married women (93%) and most of the care recipients (93%) had primary diagnosis of Autism Spectrum Disorder with intellectual disability. Three major themes were generated from the data: (1) Working for children to be self-sufficient and independent for the future, (2) Affecting socialization due to lack of time and to avoid issues and judgments from others, and (3) Needing to receive a stronger support system, both formal and informal.

Recommendation: There is limited qualitative research on family caregivers of children with an intellectual disability living in low socioeconomic communities. More studies are needed in this population living in urban and rural communities, to provide new insight on this topic. Most of the participants in this study were mothers therefore, more qualitative studies are needed to explore the experiences of fathers of children with intellectual disability.

Conclusion: The findings of this study revealed the process of caring for children with intellectual disability and varying challenges encountered by caregivers in this population. In the process of caring for the child with intellectual disability, caregivers brought to light the fears they faced and the efforts they were making to secure a safe future for the child.