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.

Catherine McAuley School of Nursing and Midwifery University College Cork Cork Ireland

Center for Palliative Care Prague Czech Republic

College of Nursing University of Manitoba Manitoba Canada

Department of Public Health and Primary Care Leiden University Medical Center Leiden The Netherlands

Department of Public Health and Primary Care Leiden University Medical Center Leiden The Netherlands; Department of Primary and Community Care Radboud uNiversity Medical Center Nijmegen The Netherlands

Division of Health Research Lancaster University Lancaster UK

School of Nursing and Midwifery De Montfort University Leicester UK

School of Nursing and Midwifery De Montfort University Leicester UK; Dementia UK London UK

School of Nursing and Midwifery Queen's University Belfast Belfast Northern Ireland UK

School of Nursing McMaster University Ontario Canada

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The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries

A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study)