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The experiential perspectives of parents caring for a loved one with a restrictive eating disorder in the UK

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Hannah Cribben, Pamela MacDonald, Janet Treasure, Erica Cini, Dasha Nicholls, Rachel Batchelor, Carol Kan

Original languageEnglish
Article numbere192
JournalBJPsych Open
Issue number6
Published12 Nov 2021

Bibliographical note

Funding Information: This work was supported by Royal College of Psychiatrists (grant number RE16389 awarded to Dr Carol Kan). This article was made open access with the financial support of King’s College London. Funding Information: J.T. receives salary support from the National Institute for Health Research (NIHR) Mental Health Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. C.K. has previously received salary support from the Lundbeck Foundation, NIHR, the Novo Nordisk UK Research Foundation and Marie Curie Fellowship; and receives support from the Lundbeck Foundation. The views expressed are those of the authors and not those of the National Health Service, the NIHR or the Department of Health. The remaining authors declare no conflicts of interest. Publisher Copyright: Copyright © The Author(s), 2021. Published by Cambridge University Press on behalf of the Royal College of Psychiatrists.

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Background Parents 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. Aims To 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. Method A 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. Results Four 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. Conclusions 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. Findings from this project informed the design of a national web-survey on loved ones' experience of care in eating disorders.

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