Sibling experiences in families of an individual with a chronic health condition: Down syndrome and cystic fibrosis

Abstract

This document is a manuscript-based thesis, exploring the lived experiences of individuals who have a sibling with a chronic health condition, specifically Down syndrome or cystic fibrosis. The first paper focuses on the experiences of having a sibling with Down syndrome, and the second on having a sibling with cystic fibrosis. Both studies used a basic interpretive approach, and were guided by the Family Adjustment and Adaptation Response (FAAR) Model (Patterson, 1988; Patterson & Garwick, 1994) to explore the difficulties faced by these siblings and the supports and coping behaviours they employed. The data were collected through interviews and analyzed using Interpretative Phenomenological Analysis (IPA; Eatough & Smith, 2017; Smith, Flowers & Larkin, 2009). Results suggested that siblings of those with Down syndrome or cystic fibrosis generally view their experiences positively, though they related various difficulties including taking on various roles, having worries, and the need for more supports for siblings. The results of this study will aid in better understanding the sibling relationship when a brother or sister has a chronic health condition, and will inform appropriate supports for siblings and their families.