Learning From Those Who Have Lived: A Scoping Review Exploring the Involvement of Lived Experience Co-Design in...

Area of Science:

• Eating disorder research
• Patient and public involvement
• Health services research

Background:

• Growing demand for involving people with lived experience in health research and policy, particularly in eating disorders.
• Despite extensive research, significant knowledge gaps persist in understanding eating disorder risk, origin, onset, progression, and intervention.
• Need for evidence on how lived experience is considered and integrated into eating disorder research methodologies.

Purpose of the Study:

• To investigate the evidence of lived experience consideration and integration in eating disorder research methodology.
• To identify trends and variations in the inclusion of lived experience in published eating disorder research.
• To assess the quality and detail of methodological reporting regarding lived experience engagement.

Main Methods:

• A scoping review methodology was employed to systematically search and synthesize relevant literature.
• Research was conducted across six major academic databases.
• Lived experience input was integrated into research ideation, search strategy development, and data analysis.

Main Results:

• Over 6553 articles were initially identified, with 76 meeting the inclusion criteria for the review.
• A notable increase in the inclusion of lived experience in research has been observed in the past five years, with concentrations in the United Kingdom and Australia.
• Engagement methods ranged from opportunistic to full integration, with considerable variation in methodological reporting, terminology, and knowledge sharing. Researcher reflexivity and representativeness of lived experience descriptions were often limited.

Conclusions:

• While research incorporating lived experience is increasing, the meaningfulness and depth of engagement vary significantly.
• Detailed methodological descriptions and practical implementation guidance for involving lived experience in eating disorder research are currently lacking.
• Prioritizing resources, time, and trust-building, alongside amplifying the value of reporting lived experience efforts, is crucial for addressing knowledge gaps and enhancing patient outcomes.