Involving community members in designing behavioural weight management programmes: a scoping review

Background:
Involving community members when developing health programmes can improve intervention outcomes. We undertook a scoping review to describe how community members contributed to the development of Behavioural Weight Management Programmes (BWMPs). Different terms have been used to describe this process, including co-design, co-production, Community-Based Participatory Research, or Patient and Public Involvement and Engagement. Our aim was to describe: (1) at what stage(s) communities were involved (e.g. planning, delivering and/or evaluating); (2) what level of involvement they had (e.g. leading, collaborating, consulted, informed or not involved); and (3) examples of how they were involved.

Methods:
We searched MEDLINE, EMBASE and CINAHL databases from 2010 to 2023. Two authors independently screened papers and extracted information using predefined criteria. We extracted data on study characteristics, and stages, levels and methods of community involvement.

Results:
We identified 58 BWMPs reported in 91 papers. Most were conducted in the US (n = 48, 83%). Their focus included race and ethnicity (n = 43, 73%), gender (n = 17, 29%) or low-income/underserved communities. Community members initiated the development of BWMPs in 36% of programmes (n = 21). Most programmes used community involvement to adapt an existing intervention (n = 33, 57%). Community involvement was highest at the planning stage where 55% (n = 32) of studies included community members as collaborators and 9% (n = 5) had community members leading the process. At the delivery stage, nine studies (16%) were led by community members and 19 (33%) included them as collaborators. In the evaluation stage, no studies were led by community members but a quarter (n = 14, 24%) included them as collaborators. Few programmes reported either the cost (n = 3, 5%) or the duration (n = 13, 22%) of community involvement. Programme adaptations ranged from relatively easy-to-implement changes such as changing language or menus, to more substantive adaptations like format, activity and personnel.

Conclusions:
Our review identified substantial levels of community involvement (leadership or collaboration) in planning BWMPs, but less so in their delivery, and rarely in evaluation. Greater involvement of communities in evaluation would ensure programmes focus on what matters most to them. Reporting of community involvement, especially costs and time involved, should be improved to allow for shared learning.