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

Bavelaar, Laura and Nicula, Maria and Morris, Sophie and Kaasalainen, Sharon and Achterberg, Wilco and Loucka, Martin and Vickova, Karolina and Thompson, Genevieve and Cornally, Nicola and Hartigan, Irene and Harding, Andrew and Preston, Nancy and Walshe, Catherine and Cousins, Emily and Harrison Dening, Karen and De Vries, Kay and Brazil, Kevin and van der Steen, Jenny T. (2022) Developing country specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers. Patient Education and Counseling, 105 (4). pp. 965-973. ISSN 0738-3991

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Abstract

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.