Researching experiences of cancer: the importance of methodology

Abstract

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.