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

Cribben, Hannah; Macdonald, Pamela; Treasure, Janet; Cini, Erica; Nicholls, Dasha; Batchelor, Rachel; Kan, Carol; (2021) The experiential perspectives of parents caring for a loved one with a restrictive eating disorder in the UK. BJPsych Open , 7 (6) , Article E192. 10.1192/bjo.2021.1019. Green open access

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Abstract

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.

Type: Article
Title: The experiential perspectives of parents caring for a loved one with a restrictive eating disorder in the UK
Open access status: An open access version is available from UCL Discovery
DOI: 10.1192/bjo.2021.1019
Publisher version: https://doi.org/10.1192/bjo.2021.1019
Language: English
Additional information: © The Author(s), 2021. Published by Cambridge University Press on behalf of the Royal College of Psychiatrists. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/ licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Keywords: Carers; anorexia nervosa; bulimia nervosa; eating disorders not otherwise specified; patients.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Experimental and Translational Medicine
URI: https://discovery.ucl.ac.uk/id/eprint/10175186
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