Abstract
BACKGROUND: In families where one of the siblings has an eating disorder (ED), research indicates that the siblings without eating disorders (EDs) experience insufficient care and negative changes in family life. The illness then takes up a great deal of space within the family. Support from the siblings without EDs is considered to be important for the recovery of the sibling with ED. A key issue is how to involve siblings without EDs in treatment and establish what kind of support they themselves need. A majority of the research on EDs and family has focused on children and adolescents with EDs. The aim of this study is to expand knowledge about the experiences and coping strategies of sisters and brothers of adult women with anorexia nervosa or bulimia nervosa. METHODS: This qualitative study used a constructivist grounded theory approach. Individual semi-structured interviews were conducted with 10 sisters and brothers (aged 20-31 years). They were recruited from eating disorders and general psychiatrics units and from user organisations for patients with eating disorders within Norway. An iterative process of data collection, coding and analysis was employed in order to generate a theory about these participants' experiences and strategies. RESULTS: The core category is "put your own oxygen mask on first". It indicates that the siblings realize that they need to take care of themselves first, in order to be able to stay involved with their sister with the ED. The three subcategories; "taking a new role", "distancing" and "adapted care" describe how the siblings handle their situation as the relatives of adult sisters with an ED. The siblings without ED became more responsible and independent and assumed a caregiving role. They downplayed their own needs to reduce their parents' burden. This new role became difficult to fulfil and the siblings experienced that over time they needed more distance. Eventually, they developed a more manageable way of caring for their sister. CONCLUSIONS: The findings suggest that the ED challenged the boundaries within the family. The siblings without ED assumed a caregiver role, gradually leading to exhaustion and the need to distance from the sister with the ED, to take care of themselves.