Applying Participatory Health Research Elements in Rural End-of-Life Research: Reflections on Conducting In-Depth Interviews With Participants on Sensitive Topics

  • Stephanie Thompson The FW Whittle Palliative Care Unit
  • Pauline Marsh University of Tasmania
  • Jon Mond University of Tasmania
  • Craig Brown
Keywords: rural, palliative care, participatory health research, participatory data collection, in-depth interviewing, sensitivity, vulnerable population, reflexivity


The "Living Loving Dying" research project aimed to improve end of life and bereavement care for people caring and dying in rural areas. The data were provided by people who had experienced caring for someone until his/her death, while living in an area of low population and geographical isolation. Undertaking data collection on such a sensitive topic, from people still vulnerable from the impacts of death and grief, requires the use of particularly sensitive research methods. It is also important that participants feel their voices are heard and that they are contributing to positive change for others. In view of this we positioned people to participate as community-partners and utilized a descriptive qualitative design with participatory elements in the data collection method of in-depth, semi structured interviewing. The non-hierarchical relationship between researchers and community-partners were key influences for using participatory elements in this research with a vulnerable population. In this article we reflect on the pragmatic and ethical considerations that the application of this method has for rural end-of-life research.


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Author Biographies

Stephanie Thompson, The FW Whittle Palliative Care Unit

Dr. Stephanie THOMPSON is a registered music therapist, psychotherapist, hypnotherapist, and researcher; she is employed with the Tasmanian Specialist Palliative Care Service-south. Stephanie has published in national and international peer reviewed journals on clinical supervision, mental health, oncology, palliative care and bereavement.

Pauline Marsh, University of Tasmania

Dr. Pauline MARSH is a researcher and teacher with the Centre for Rural Health. She is interested in many aspects of primary health care, but particularly in the role and capacity of informal community support and care. Pauline has established strong research relationships with several community gardens in Tasmania. She has taught into postgraduate primary health care units, as well as teaching and research experience in the humanities. Pauline has published in international journals in the areas of therapeutic space, end-of-life care, rural health, dignity of risk, dementia, primary health care, Aboriginal studies and film theory.

Jon Mond, University of Tasmania

Dr. Jon MOND is a research psychologist with a particular interest in community-based studies of health and mental health problems and in different theoretical approaches to conceptualizing these problems and reducing their adverse impact at the population level. His research addresses a broad range of health and mental health problems and spans the disciplines of psychology, sociology, medicine and public health.

Craig Brown

Dr. Craig BROWN is a general practitioner working in rural healthcare.

How to Cite
Thompson, S., Marsh, P., Mond, J., & Brown, C. (2019). Applying Participatory Health Research Elements in Rural End-of-Life Research: Reflections on Conducting In-Depth Interviews With Participants on Sensitive Topics. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 20(3).