Analysing Data With Members of a Stigmatised Community: Experiences, Reflections and Recommendations for Best Practice From the Finding the Formula Community Analysis Group

Abstract

Participatory research approaches hold potential to better understand society through valuing lived experience. Formula feeding babies is routinely stigmatised in the UK, despite inadequate support to facilitate breastfeeding. Our community science project investigated the safety of powdered infant formula preparation in the home through the completion of an at-home experiment and a research diary with closed and open questions ( n = 151). To add validity to the interpretation of open text data in research diaries, a community analysis group of five formula-feeding mothers was established. The community analysts undertook inductive thematic analysis through a series of analysis group meetings focused around data extracts, contributed to the study’s empirical outputs and this methodological output, meeting 23 times over a nine-month period. Detailed notes were taken during meetings and the methodological elements of these were thematically analysed with the community analysts to produce this article, with extracts from the academic researchers’ field notes added where relevant. The overarching themes, presenting both positive experiences and areas for improvement, focused on: (i) clarity of expectations and the impact this had on community analysts’ confidence, (ii) the stigmatising topic area and how this was managed by the facilitators, and (iii) feeling valued, in relation to honoraria, inclusion in outputs and community analysts coming to recognise their own expertise. Furthermore, the community analysts co-produced recommendations for including community analysts in future research. It provides guidance on how this can be appropriately costed for and supported by funding bodies and research teams, as well as providing guidance on recruitment and chairing meetings. We hope that this article can provide valuable input into how to involve the community more inclusively as research partners in qualitative analysis related to stigmatised topics.