ArticleBMJ (Clinical research ed.)2007
Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study.
Article in BMJ (Clinical research ed.), 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 1 of them a synthesis that pooled it.
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Who cites it
30 citing papers in PubMed, 1 synthesis or guideline pooled it.
- What do palliative care patients and their relatives think about research in palliative care?-a systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2010Pooled it
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- Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group study.Palliative & supportive care · 2025Article
- The mismatch in hierarchical diagnosis and treatment construction and related reasons: a qualitative analysis from ZX City, Hubei Province.Frontiers in public health · 2025Article
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- Ethnographic closeness: methodological reflections on the interplay of engagement and detachment in immersive ethnographic research.The journal of the Royal Anthropological Institute · 2023Article
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- A good death in the child with life shortening illness: A qualitative multiple-case study.Palliative medicine · 2021Article
- Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies.BMC palliative care · 2019Article
- The particularity of dignity: relational engagement in care at the end of life.Medicine, health care, and philosophy · 2018Article
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- Telemonitoring via Self-Report and Video Review in Community Palliative Care: A Case Report.Healthcare (Basel, Switzerland) · 2017Article
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- A scoping review of family experience and need during end of life care in intensive care.Nursing open · 2015Article
- Engaging patients and caregivers in patient-centered outcomes research on advanced stage lung cancer: insights from patients, caregivers, and providers.Journal of cancer education : the official journal of the American Association for Cancer Education · 2014Article
- Researchers' and clinicians' perceptions of recruiting participants to clinical research: a thematic meta-synthesis.Journal of clinical medicine research · 2014Article
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo understand key challenges in researching end of life issues and identify ways of overcoming these.
designQualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer.
participantsAn international sample of 32 researchers; seven patients with experience of cancer; and four carers in south east Scotland.
resultsResearchers highlighted the difficulty of defining the end of life, overprotective gatekeeping by ethics committees and clinical staff, the need to factor in high attrition rates associated with deterioration or death, and managing the emotions of participants and research staff. People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome.
conclusionsThe continuing taboos around death and dying act as barriers to the commissioning and conduct of end of life research. Some people facing death, however, may want to participate in research and should be allowed to do so. Ethics committees and clinical staff must balance understandable concern about non-maleficence with the right of people with advanced illness to participate in research. Despite the inherent difficulties, end of life research can be conducted with ethical and methodological rigour. Adequate psychological support must be provided for participants, researchers, and transcribers.
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