Challenges of participatory research: reflections on a study with breast cancer self‐help groups

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Abstract
To review and discuss issues related to participatory research, as they apply within the arena of cancer control. A participatory research study with breast cancer self-help groups is referred to for description and discussion purposes. That study employed primarily individual and group interviews to assess benefits and limitations of self-help groups. Four breast cancer self-help groups in Ontario communities provided the core involvement in the participatory research project. The values and practices of mainstream academic research often conflict with those of research emphasizing participation and control of communities under study, leading to a variety of challenges for the latter approaches. Practical constraints faced by many community groups have important implications for participatory research approaches. A balance needs to be found for participatory research within cancer control – one that ensures that the core aims of participatory research are maintained, while simultaneously acknowledging the various challenges that make a fully participatory project unrealistic. Steps can be taken to achieve a workable balance.