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Learning From Those Who Have Lived: A Scoping Review Exploring the Involvement of Lived Experience Co‐Design in Eating Disorder Research Methodologies.

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Title: Learning From Those Who Have Lived: A Scoping Review Exploring the Involvement of Lived Experience Co‐Design in Eating Disorder Research Methodologies.
Authors: Miskovic‐Wheatley, Jane (AUTHOR), Vatter, Sabina (AUTHOR), Ong, Shu Hwa (AUTHOR), Carroll, Bronny (AUTHOR), Touyz, Stephen (AUTHOR), Griffiths, Kristi (AUTHOR), Maguire, Sarah (AUTHOR)
Source: International Journal of Eating Disorders. Oct2025, Vol. 58 Issue 10, p1833-1883. 51p.
Subjects: Research funding, Neurodiversity, LGBTQ+ people, Psychological well-being, Eating disorders, Systematic reviews, Reflexivity, Experience, MEDLINE, Medical research, Online information services, Patients' attitudes, Psychology information storage & retrieval systems, COVID-19, Psychosocial factors
Abstract: Objective: There is a growing demand in health research and policy to meaningfully involve people with lived experience in co‐creating research and treatment services, especially in eating disorders. Despite decades of research into risk, origin, onset, progression, and intervention, significant knowledge gaps remain. The aim of this review was to investigate evidence in the published literature of lived experience consideration and integration in eating disorder research methodology to date. Method: A scoping review methodology was used to review research across six databases. Lived experience was engaged in research ideation, search strategy, and analysis. Results: The search generated over 6553 articles with 76 meeting the inclusion criteria. There has been growth of lived experience research inclusion over the past 5 years, especially in the United Kingdom and Australia. There was a wide range of lived experience engagement from one‐off opportunistic engagement to full project integration and substantial variety in methodological reporting, including terminology, detail, and knowledge‐sharing to advance the field. Researcher reflexivity reporting was rare and lived experience descriptions were sometimes limited by methodology (such as anonymous surveys), compromising analysis of representativeness. Discussion: While research incorporating lived experience is increasing, meaningful engagement varies widely, detailed methodological descriptions are lacking, and guidance on practical implementation is limited. Prioritizing time, resources, and trust‐building in lived experience research and amplifying the value of seeking and reporting such efforts in grant calls and published research has the potential to address knowledge gaps and improve outcomes. [ABSTRACT FROM AUTHOR]
Copyright of International Journal of Eating Disorders is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Learning From Those Who Have Lived: A Scoping Review Exploring the Involvement of Lived Experience Co‐Design in Eating Disorder Research Methodologies.
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  Data: <searchLink fieldCode="JN" term="%22International+Journal+of+Eating+Disorders%22">International Journal of Eating Disorders</searchLink>. Oct2025, Vol. 58 Issue 10, p1833-1883. 51p.
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– Name: Abstract
  Label: Abstract
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  Data: Objective: There is a growing demand in health research and policy to meaningfully involve people with lived experience in co‐creating research and treatment services, especially in eating disorders. Despite decades of research into risk, origin, onset, progression, and intervention, significant knowledge gaps remain. The aim of this review was to investigate evidence in the published literature of lived experience consideration and integration in eating disorder research methodology to date. Method: A scoping review methodology was used to review research across six databases. Lived experience was engaged in research ideation, search strategy, and analysis. Results: The search generated over 6553 articles with 76 meeting the inclusion criteria. There has been growth of lived experience research inclusion over the past 5 years, especially in the United Kingdom and Australia. There was a wide range of lived experience engagement from one‐off opportunistic engagement to full project integration and substantial variety in methodological reporting, including terminology, detail, and knowledge‐sharing to advance the field. Researcher reflexivity reporting was rare and lived experience descriptions were sometimes limited by methodology (such as anonymous surveys), compromising analysis of representativeness. Discussion: While research incorporating lived experience is increasing, meaningful engagement varies widely, detailed methodological descriptions are lacking, and guidance on practical implementation is limited. Prioritizing time, resources, and trust‐building in lived experience research and amplifying the value of seeking and reporting such efforts in grant calls and published research has the potential to address knowledge gaps and improve outcomes. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
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  Group: Ab
  Data: <i>Copyright of International Journal of Eating Disorders is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=188492944
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        Value: 10.1002/eat.24503
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        Text: English
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      Pagination:
        PageCount: 51
        StartPage: 1833
    Subjects:
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Neurodiversity
        Type: general
      – SubjectFull: LGBTQ+ people
        Type: general
      – SubjectFull: Psychological well-being
        Type: general
      – SubjectFull: Eating disorders
        Type: general
      – SubjectFull: Systematic reviews
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      – SubjectFull: Reflexivity
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      – SubjectFull: Experience
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      – TitleFull: Learning From Those Who Have Lived: A Scoping Review Exploring the Involvement of Lived Experience Co‐Design in Eating Disorder Research Methodologies.
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              Text: Oct2025
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