Paediatric life-limiting conditions: Coping and adjustment in siblings

Abstract

A total of 31 siblings, aged between 5 and 16 years, of children with a life-limiting condition, participated in a longitudinal, mixed method study. Data collection included standardised psychometric measures and visual and participatory qualitative methods. Emotional functioning and perceptions of self-worth were normative on standardised measures. Qualitative data indicated distinct psychosocial strategies that appeared to underpin functioning, positioning themselves as adults within the family, adopting a role of ‘social glue’ in key relationships and thereby diminishing their own needs, and compartmentalising home and school life. Some strategies appeared adaptive in the short term but may be limiting in the longer term. The implications for professionals working to support families are discussed.