title: 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.
authors.affiliation: Health Services Research Unit, University of Aberdeen, Fosterhill, Aberdeen, UK. vae@hsru.abdn.ac.uk
authors.forename: V
authors.initials: V
authors.lastname: Entwistle
authors.forename: J Q
authors.initials: JQ
authors.lastname: Tritter
authors.forename: M
authors.initials: M
authors.lastname: Calnan
mesh_terms: D003142:Communication; D003625:Data Collection / Q000379:methods; D032984:Ethics, Research; D006801:Humans; D009369:Neoplasms / Q000523:psychology*; D010358:Patient Participation; D011369:Professional-Patient Relations; D012107:Research Design