The experience of siblings of adolescents with eating disorders

Purpose: To qualitatively and quantitatively explore the experience and QOL of siblings of AEDs. To date, there is little research on the quality of life (QOL) and the effect an eating disorder (ED) has on the siblings of adolescents with an eating disorder (AEDs).

Methods: Siblings were recruited between January 2008 and April 2008. Inclusion criteria included siblings aged 10-18 years old and living with a sibling with an ED. Exclusion criteria included having an ED, or major psychiatric disorder, or a communication problem that interfered with their participation. Siblings completed a general assessment questionnaire, the Pediatric Quality of Life inventory 4.0 Generic Core Scales and Eating Attitudes Test-26 (EAT-26). Focus group interviews were conducted until saturation was achieved and thematic analysis was employed.

Results: Twenty siblings (14 females) of 17 AEDs (15 females) participated. All but one sibling scored within the normal range for the Eating Attitudes Test-26. Key themes identified included a desire to understand the ED, acute awareness of ED behaviors and thoughts, challenges in understanding noneating-related obsessive behaviors, increase in family conflict and arguments, compassion and concern for the AED, feelings of loss and sacrifice, overwhelming sense of responsibility for the AED, and a sense of pervasiveness of the ED in all aspects of their lives. The siblings' accounts of these themes were noted to be fraught with contradictions. Eighty percent reported that their QOL was negatively affected by the onset of their siblings' ED.

Conclusion: Clinical attention and further research into the experience of siblings of adolescents with ED is needed.