Siblings’ experiences of having a brother or sister with an eating disorder: a qualitative exploration

Abstract

Background: Family members of people with eating disorders are often involved in caregiving. To better understand the impact on them, outcomes such as burden, distress, and less frequently quality of life (QoL) are taken into consideration. Despite advancements in the knowledge base surrounding the experiences of adult and parental caregivers of individuals with eating disorders, particularly Anorexia Nervosa, there is a scarcity of qualitative exploration from the sibling perspective, particularly that of adolescent siblings. Objectives: The systematic review aimed to identify research and synthesise findings relating to informal caregivers’ quantitative ratings of quality of life in the context of eating disorders. The primary study aimed to explore in detail the lived experience of adolescent siblings with a brother or sister with Bulimia Nervosa or Eating-Disorder-Not-Otherwise-Specified. Method: Applying a priori inclusion and exclusion criteria to papers identified from a combination of systematic searches of electronic databases and hand searches of other pertinent literature, revealed eight studies to be included for review. Within the qualitative study, eight semi-structured interviews were carried out with siblings (aged 12-19-years) who had a brother or sister with an eating disorder. An interpretative phenomenological analysis approach was utilised to analyse interview data. Results: The review highlighted low ratings for aspects of quality of life for informal caregivers of individuals with eating disorders, and some emerging comparative and subgroup differences. Three super-ordinate themes emerged from the qualitative exploration: Sibling Identity, The Vulnerable Social ‘Self’, and Intra- and Inter-Personal Coping. Discussion: Overall the findings provide particular insight into the quality life of informal caregivers and the unique experiences, feelings and various roles of adolescent siblings of people with eating disorders. Implications regarding caregiver support and the needs of siblings specifically are considered. Strengths and limitations, as well as future research possibilities are outlined for both the systematic review and empirical study.