Parents' experiences of having children with a significant developmental disability: Commentary

Abstract

QUESTION: What are experiences of parents who have children with significant developmental disability?DesignHermeneutic phenomenology.SettingPenrith, New South Wales, Australia.Participants6 parents (2 couples and 2 single mothers) of 4 children (age range 3-6 y, 3 boys and 1 girl) participated in the study. Participants were recruited from the first author's practice experience.MethodsAn initial series of individual face to face interviews with parents were conducted Parents were asked to talk about their experiences of living with a child with a developmental disability. The couples completed subsequent joint interviews. Interviews were audiotaped and transcribed. Transcripts and contextual notes were coded and then indexed against various starting categories. Patterns in the coding system allowed for reconceptualisation of data into fewer and denser categories. Relationships between the categories were developed. Themes, patterns, and relationships were reviewed with participants to check for intent and validation.Main findingsParents' experiences were interpreted as dynamic moving between jay and sorrow. Contributing to parents' sorrow were the possibility of the child dying, finding out about the child's changed potential, being treated as if there was a death in the family, being left on their own by others and the healthcare system, being vulnerable, having many fears and worries, and grief. Negativity from others contributed to parents' feelings of hopelessness, despair, helplessness, and powerlessness. Contributing to parents' joy were their children not dying, the little things their children do, new perspectives following changes in beliefs and values, and becoming stronger in the face of adversity. Their children became a source of joy and inspiration. Parents were optimistic and hopeful, and defiant of their children's imposed prognoses. They, showed an understanding of their children's impairments and possible functional outcomes. They reported they had learned to live without expectations, but could riot function without hopes and dreams. Their joys and sorrows were held in tension and mediated by feelings of confusion, doubt, and ambiguity. Parents spoke of confusing information and advice, ambiguous prognoses, and their own observations often conflicting with information they were given. The results show the paradox of the existence of joy because of the sorrow experienced.ConclusionsParents not only experienced sorrow when they have a child with a disability but also a sense of joy and gratification. Clinicians working with these families need to be cognisant of this dynamic tension and can be helpful in focusing on hope rather than pathology.