title: Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper.
abstract: OBJECTIVE
  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.
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Sivell
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Hayley
authors.initials: H
authors.lastname: Prout
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Noreen
authors.initials: N
authors.lastname: Hopewell-Kelly
authors.affiliation: School of Healthcare Sciences, Cardiff University, Cardiff, Wales, UK.
authors.forename: Jessica
authors.initials: J
authors.lastname: Baillie
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Anthony
authors.initials: A
authors.lastname: Byrne
authors.affiliation: Centre for Innovative Ageing, College of Human and Health Sciences, Swansea University, Swansea, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Edwards
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Emily
authors.initials: E
authors.lastname: Harrop
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Simon
authors.initials: S
authors.lastname: Noble
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Sampson
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK.
authors.forename: Annmarie
authors.initials: A
authors.lastname: Nelson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D035843:Biomedical Research / Q000592:standards*; D005260:Female; D017408:Guidelines as Topic; D006699:Home Care Services / Q000706:statistics & numerical data; D017051:Hospice Care / Q000523:psychology* / Q000706:statistics & numerical data; D006801:Humans; D007407:Interviews as Topic / Q000592:standards*; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology* / Q000706:statistics & numerical data; D036301:Qualitative Research; D012108:Research Personnel / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology* / Q000706:statistics & numerical data; D019452:Terminally Ill / Q000523:psychology*
keywords: Interviewing in the home; Methodological research; Palliative care; Qualitative Research