Methodological challenges in researching patients’ decisions to forgo or stop active treatment for cancer Madjar, Irena, The University of Newcastle, Australia, Kacen, Lea, Ben Gurion University of the Negev, Beer-Sheva, Australia |
The aim of this cross-cultural qualitative study is to explore how adults with cancer decide to forgo or stop active treatment, and what issues arise for them, their families, and the treatment team, as a consequence of such decisions. Individual interviews and focus groups have been used to generate narrative data for phenomenological description and cross-cultural (Australia- Israel) comparison. In this paper we reflect on the choice of research methods that could support the appropriate balance of methodological rigor, narrative richness, interpersonal sensitivity between researchers and participants, and ethical responsibility in the conduct of the study. Our experience indicates the need for • close consultation with treating physicians, nurses and other staff to identify potential participants (and to obtain narratives of their own experiences with patients); • flexibility in recruitment strategies and data collection (to accommodate participants who may perceive themselves as having limited survival time); • sensitivity in recording life stories that have a past and present but an uncertain and limited future; • sensitivity in handling different and often competing interpretations of the decision to forgo or stop treatment; • attention to research ethics, including the need to exercise fidelity in re-presenting the findings from the patients’, families’, and health professionals’ perspectives. Our paper includes a discussion of the participants’ and researchers’ reflections on the methodological aspects of the study, and concludes with recommendations for design of future studies in this field.
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