"Putting your own oxygen mask on first": a qualitative study of siblings of adults with anorexia or bulimia

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. Plain English Summary Siblings in families where one sibling has an eating disorder have reported experiencing a lack of care and negative changes in family life. They felt that the illness took up a great deal of space. This qualitative study explores the experiences of siblings of adult women with anorexia or bulimia. Ten individual interviews with brothers and sisters were conducted. The participants were recruited from eating-disorder and general psychiatrics units and from user organisations for eating disorders within Norway. The age range was 20-31 years. Findings from this study suggest that the character of the illness challenged the whole family. Participants reported that they became more responsible and independent. Some became caregivers for their ill sister and downplayed their own needs to reduce their parents' burden. A majority of the siblings said that they experienced exhaustion after taking care of their sibling for a while and needed distance from their ill sister to take care of themselves. Eventually, they developed their own manageable ways of caring for their sister with the illness.