Experiences of eating disorder services for people caring for a loved one with an eating disorder in the UK: national survey

Background Research suggests that those caring for a loved one with an eating disorder in the UK report unmet needs and highlight areas for improvement. More research is needed to understand these experiences on a wider, national scale.Aims To disseminate a national survey for adults who had experience caring for a loved one with an eating disorder in the UK, informed by the findings of a smaller scale, qualitative study with parents, siblings and partners in the UK.Method A cross-sectional web-based survey was disseminated to adults who had experience caring for a loved one with an eating disorder in the UK.Results A total of 360 participants completed the survey. Participants described experiences of care received in both children and young people's, and adult services. Those receiving care from children and young people's services generally reported more timely care, greater involvement in care and more confidence managing their loved one's symptoms post-discharge. In both settings, participants identified a number of areas for improvement, including more timely access to care, improved transition processes and discharge planning, and increased involvement in their loved one's care.Conclusions This survey captures the experiences of individuals caring for a loved one with an eating disorder in the UK. There are identified discrepancies between experiences of care in children and young people services compared with adult services. Clinical implications and recommendations for improvement are discussed, including improved transition and discharge processes, increased involvement of and/or support for carers themselves, and more timely access to support services for the unwell individual.