This paper draws on contributions to and discussions at a recent MRC HSRC-sponsored workshop 'Researching users' experiences of health care: the case of cancer'. We focus on the methodological and ethical challenges that currently face researchers who use self-report methods to investigate experiences of cancer and cancer care. These challenges relate to: the theoretical and conceptual underpinnings of research; participation rates and participant profiles; data collection methods (the retrospective nature of accounts, description and measurement, and data collection as intervention); social desirability considerations; relationship considerations; the experiences of contributing to research; and the synthesis and presentation of findings. We suggest that methodological research to tackle these challenges should be integrated into substantive research projects to promote the development of a strong knowledge base about experiences of cancer and cancer care.
- research methodology
- cancer care
- patient experiences
- experiences of care provision
- user involvement
Entwistle, V., Tritter, J. Q., & Calnan, M. (2002). Researching experiences of cancer: the importance of methodology. European Journal of Cancer Care, 11(3), 232-237. https://doi.org/10.1046/j.1365-2354.2002.00344.x