“I don't know how, if, it's ever going to end”: narratives of caring for someone with an enduring eating disorder

Abstract

Background Families and carers are pivotal in supporting loved ones experiencing eating disorders. This role can bring immense distress and burden, yet the experience of caring for someone with an enduring eating disorder has had minimal research focus. Thus, the purpose of this study is to give voice to carers empowering their stories to increase awareness and understanding, which could inform support to carers and consequently people with a lived and/or living experience of eating disorders. Methods Semi-structured interviews were conducted with 9 carers supporting individuals who had been experiencing an eating disorder for 7 or more years. Data were collected and analysed using narrative inquiry approach. Results Carers’ narratives revealed feelings of guilt and personal failure; a profound sense of disillusion with current treatment approaches; and immense grief and anguish. As they negotiated a tenuous relationship with hope and the uncertainty of their loved one’s future, carers spoke to a complex myriad of feelings of acceptance, letting go, and forging on. Conclusion Carers deserve to have their voices heard where they are too often silenced. Their narratives provide an urgent call for transformation in our treatments for eating disorders and further involvement of carers within the treatment journey, and their lived experience perspectives have great potential to guide this endeavour. Level of Evidence Level V, qualitative interviews.