Valuing the voice of lived experience of eating disorders in the research process: Benefits and considerations

Musić, Selma; Elwyn, Rosiel; Fountas, Grace; Gnatt, Inge; Jenkins, Zoe; Malcolm, Amy; Miles, Stephanie; Neill, Erica; Simpson, Tamara; Yolland, Caitlin; Phillipou, Andrea

doi:10.1177/0004867421998794

Cited by 26 publications

(31 citation statements)

References 9 publications

(9 reference statements)

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“…As described previously, the aim of this process was for the lead author to ensure that the lived experience perspective was considered during the thematic analysis. Furthermore, given that the purpose of the study was focused on app-based interventions rather than describing the lived experience (which is presented in detail elsewhere [ 35 , 36 ]), an overview of the common elements across the empathy maps is provided in Multimedia Appendix 2 .…”

Section: Resultsmentioning

confidence: 99%

Informing mHealth and Web-Based Eating Disorder Interventions: Combining Lived Experience Perspectives With Design Thinking Approaches

Jarman¹,

McLean²,

Rodgers³

et al. 2022

JMIR Form Res

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Background App-based interventions designed to prevent and treat eating disorders have considerable potential to overcome known barriers to treatment seeking. Existing apps have shown efficacy in terms of symptom reduction; however, uptake and retention issues are common. To ensure that apps meet the needs and preferences of those for whom they were designed, it is critical to understand the lived experience of potential users and involve them in the process of design, development, and delivery. However, few app-based interventions are pretested on and co-designed with end users before randomized controlled trials. Objective To address the issue, this study used a highly novel design thinking approach to provide the context and a lived experience perspective of the end user, thus allowing for a deeper level of understanding. Methods In total, 7 young women (mean age 25.83, SD 5.34, range 21-33 years) who self-identified as having a history of body image issues or eating disorders were recruited. Participants were interviewed about their lived experience of body image and eating disorders and reported their needs and preferences for app-based eating disorder interventions. Traditional (thematic analysis) and novel (empathy mapping; visually depicting and empathizing with the user’s personal experience) analyses were performed, providing a lived experience perspective of eating disorders and identifying the needs and preferences of this population in relation to app-based interventions for eating disorders. Key challenges and opportunities for app-based eating disorder interventions were also identified. Results Findings highlighted the importance of understanding and identifying problematic eating disorder symptoms for the user, helpful practices for recovery that identify personal values and goals, the role of social support in facilitating hope, and aspects of usability to promote continued engagement and recovery. Conclusions Practical guidance and recommendations are described for those developing app-based eating disorder interventions. These findings have the potential to inform practices to enhance participant uptake and retention in the context of app-based interventions for this population.

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Section: Resultsmentioning

confidence: 99%

Informing mHealth and Web-Based Eating Disorder Interventions: Combining Lived Experience Perspectives With Design Thinking Approaches

Jarman¹,

McLean²,

Rodgers³

et al. 2022

JMIR Form Res

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show abstract

“…In line with this, recent calls to action have highlighted the importance of integrating lived experience perspectives as these individuals are arguably experts in the experience of EDs and recovery [ 16 , 38 ]. By discounting lived experience views, we run the risk of missing key considerations in ED recovery, assuming that one size fits all, and invalidating individuals whose experiences are not represented (typically those in already underrepresented in the ED field and marginalized groups).…”

Section: Introductionmentioning

confidence: 99%

Lived experience perspectives on a definition of eating disorder recovery in a sample of predominantly white women: a mixed method study

2022

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Background There has recently been a push for recovery-focused research in the eating disorder (ED) field, starting with a consensus definition of recovery. One definition, in particular, proposed by Bardone-Cone et al. [21] has received considerable attention given its transdiagnostic nature and validation studies. However, no studies to date have elicited lived experience views of this definition. The goal of the current study was to examine perspectives on this definition of recovery from individuals with a past or present ED and to determine whether participant agreement with the model differed based on diagnostic history or current symptom severity. Methods Sixty-two individuals (95.2% women; 91.9% White/European) participated in a 1–2 h interview aimed at capturing their perspectives on ED recovery. Transcripts were analyzed using qualitative content analysis and codebook thematic analysis to examine agreement with and thoughts on Bardone-Cone’s definition of recovery, respectively. Chi-squared tests of independence and binary logistic regression were computed to determine whether agreement with the definition differed across diagnostic history and self-reported symptoms. Results Although some participants indicated acceptance of the definition, the majority expressed concerns related to its categorical nature, proposed criteria, feasibility, language, and applications. There were no differences in acceptance based on diagnostic history or current symptom severity. Conclusion A single definition of recovery does not seem to fit individuals’ lived ED experience. Future research may benefit from distinguishing between recovery as an individually-defined phenomenon and related constructs such as remission (i.e., loss of diagnosis or absence of clinical symptoms). A more comprehensive multi-faceted, and person-centered model of recovery may have merit in clinical settings.

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“…The results of this review, suggest that further development of screening tools tailored for adolescents and adults with overweight/obesity is needed. The input of individuals with lived experience of obesity and EDs would be extremely valuable to gain insight into the constructs that may be measured as well as the sensitive administration of screening tools (Musić et al, 2022). Four studies included in this review examined such tools and provide insight into the steps required to develop these targeted screening questionnaires (Chamay‐Weber et al, 2017; De Man Lapidoth et al, 2007; Franklin et al, 2019; Wever et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

Identifying eating disorders in adolescents and adults with overweight or obesity: A systematic review of screening questionnaires

House

Lister

Seidler

et al. 2022

Intl J Eating Disorders

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Objective: This review aimed to examine the validity of self-report screening questionnaires for identifying eating disorder (ED) risk in adults and adolescents with overweight/obesity. Method: Five databases were searched from inception to September 2020 for studies assessing validation of self-report ED screening questionnaires against diagnostic interviews in adolescents and adults with overweight/obesity. The review was registered with PROSPERO (https://www.crd.york.ac.uk/PROSPERO/display_record. php?RecordID=220013).Results: Twenty-seven papers examining 15 questionnaires were included. Most studies validated questionnaires for adults (22 of 27 studies), and most questionnaires (12 of 15) screened for binge eating or binge-eating disorder (BED). The Eating Disorder Examination Questionnaire (sensitivity = .16-.88, specificity = .62-1.0) and Questionnaire on Eating and Weight Patterns (sensitivity = .07-1.0, specificity = .0-1.0) were most frequently validated (six studies each). Five studies of three questionnaires were in adolescents, with the Adolescent Binge-Eating Disorder Questionnaire having highest sensitivity (1.0) but lower specificity (.27). Questionnaires designed to screen for BED generally had higher diagnostic accuracy than those screening for EDs in general. Discussion: Questionnaires have been well validated to identify BED in adults with overweight/obesity. Validated screening tools to identify other EDs in adults and any ED in adolescents with overweight/obesity are lacking. Thus, clinical assessment should inform the identification of patients with co-morbid EDs and overweight/ obesity.

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Valuing the voice of lived experience of eating disorders in the research process: Benefits and considerations

Cited by 26 publications

References 9 publications

Informing mHealth and Web-Based Eating Disorder Interventions: Combining Lived Experience Perspectives With Design Thinking Approaches

Informing mHealth and Web-Based Eating Disorder Interventions: Combining Lived Experience Perspectives With Design Thinking Approaches

Lived experience perspectives on a definition of eating disorder recovery in a sample of predominantly white women: a mixed method study

Identifying eating disorders in adolescents and adults with overweight or obesity: A systematic review of screening questionnaires

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