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Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper
  1. Stephanie Sivell1,
  2. Hayley Prout1,
  3. Noreen Hopewell-Kelly1,
  4. Jessica Baillie2,
  5. Anthony Byrne1,
  6. Michelle Edwards3,
  7. Emily Harrop1,
  8. Simon Noble1,
  9. Catherine Sampson1 and
  10. Annmarie Nelson1
  1. 1 Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK
  2. 2 School of Healthcare Sciences, Cardiff University, Cardiff, Wales, UK
  3. 3 Centre for Innovative Ageing, College of Human and Health Sciences, Swansea University, Swansea, UK
  1. Correspondence to Dr Annmarie Nelson, Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS, UK; NelsonA9{at}cf.ac.uk

Abstract

Objectives To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.

Methods Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.

Results The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.

Conclusions The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

  • Methodological research
  • Qualitative Research
  • Interviewing in the home
  • Palliative care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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