Abstract
BackgroundParents of a loved one with an eating disorder report high levels of unmet needs. Research is needed to understand whether clinical guidance designed to improve the experience of parents has been effective.AimsTo establish parents’ experiential perspectives of eating disorder care in the UK, compared with guidance published by Beat, a UK eating disorders charity, and Academy for Eating Disorders, the leading international eating disorders professional association.MethodA total of six focus groups (one online and five face-to-face) were held throughout the UK. A total of 32 parents attended. All participants were parents of a loved one with a diagnosis of anorexia nervosa or atypical anorexia nervosa (mean age 22 years; mean duration of illness 4.4 years). Focus groups were transcribed, and the text was analysed with an inductive approach, to identify emerging themes.ResultsFour key themes were identified: (a) impact of eating disorder on one's life, (b) current service provisions, (c) navigating the transition process and (d) suggestions for improvement.ConclusionsCurrent experiences of parents in the UK do not align with the guidelines published by Beat and Academy of Eating Disorders. Parents identified a number of changes that healthcare providers could make, including improved information and support for parents, enhanced training of professionals, consistent care across all UK service providers, policy changes and greater involvement of families in their loved one's care. Findings from this project informed the design of a national web-survey on loved ones’ experience of care in eating disorders.
Highlights
Parents of a loved one with an eating disorder report high levels of unmet needs
Current experiences of parents in the UK do not align with the guidelines published by Beat and Academy of Eating Disorders
Parents identified a number of changes that healthcare providers could make, including improved information and support for parents, enhanced training of professionals, consistent care across all UK service providers, policy changes and greater involvement of families in their loved one’s care
Summary
A total of six focus groups (one online and five face-to-face) were held throughout the UK. All participants were parents of a loved one with a diagnosis of anorexia nervosa or atypical anorexia nervosa (mean age 22 years; mean duration of illness 4.4 years). Parents were excluded if their loved one had not received eating disorder treatment in the UK within the past 10 years. Each caring for one child with an eating disorder, attended the focus groups. The ages of the parents’ loved one with an eating disorder ranged from 13 to 45 years, with a mean of 22.00 years (s.d. 7.33); ten (33.3%) were aged
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