Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers Journal Articles uri icon

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  • OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.


  • Bavelaar, Laura
  • Nicula, Maria
  • Morris, Sophie
  • Kaasalainen, Sharon June
  • Achterberg, Wilco P
  • Loucka, Martin
  • Vlckova, Karolina
  • Thompson, Genevieve
  • Cornally, Nicola
  • Hartigan, Irene
  • Harding, Andrew
  • Preston, Nancy
  • Walshe, Catherine
  • Cousins, Emily
  • Dening, Karen Harrison
  • De Vries, Kay
  • Brazil, Kevin
  • van der Steen, Jenny T

publication date

  • April 2022