Snakes and ladders : parenting children with a life-threatening condition : the implications for counselling

Abstract

This dissertation gives voice to parents of children suffering from a life-threatening condition. In this narrative qualitative study, semi-structured audio recorded interviews were conducted with a purposive sample of six parents. The aim of this study was to explore what it means to be a parent of a child suffering from a life-threatening condition and what challenges the journey entails from a parent’s point of view. Thematic analysis was used to analyse life stories. The study’s epistemological stance was informed by narrative inquiry and social constructionism. As the tittle metaphorically implies, their stories gave birth to six main themes and fifteen sub-themes that constitute a journey filled with ups and downs. This shocking diagnosis was followed by numerous changes in their routine, leaving parents no time to maintain a social life, afford luxuries or spend time with the children’s siblings. Parents also had to act as nurses, conditioning them to be more at hospital rather than at home. Moreover, this journey brought with it a turmoil of emotions such as fear, anxiety, guilt and shame. Parents commented on the support received from their families and other parents going through the same journey. Parents showed feelings of anger towards bureaucratic practices and the lack of services available. This dissertation offers opportunities for future research, training and practice. These include the use of support groups in the community to help parents feel supported and minimize the stigma which parents go through. Parents also voiced out the need for more financial support.