THE LIVED SELF-CARE EXPERIENCES OF PARENTS OF CHILDREN WITH SEVERE INTELLECTUAL DISABILITIES: A PHENOMENOLOGICAL STUDY

The purpose of this qualitative phenomenological study was to understand the lived self-care experiences of parents of children with severe intellectual disabilities (CWSID) who attend a special needs school accommodating children with various learning disabilities. Self-care is defined as deliberate action to control problems that lead to an improved quality of life and good health. The theory guiding this study was the transactional model of stress and coping theory. The study's central research question was, “What are the lived self-care experiences of parents of children with SID?” The qualitative phenomenological design allowed the data to be collected about the lived experiences of people in their natural settings, and a collective meaning of essence created, including the researcher’s experiences and understanding of the phenomenon. Ten parents with children with SID participated in the study. Data was collected through individual interviews using semi-structured questions, journal prompts, and artifacts. Data analysis used Moustakas’s 1994 modified Stevick-Colaizzi-Keen method of analysis. Four themes were extracted from the findings: loss and transformation of self-care, barriers that prevent self-care, benefits of practising self-care, and coping strategies in practising self-care. The results indicated that parents sacrificed their self-care, redefined and deprioritized it, as they prioritized their child's needs over their own well-being.