Developing Country-specific Questions about End-of-life Care for Nursing Home Residents with Advanced Dementia using the Nominal Group Technique with Family Caregivers

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 analysed and compared the QPLs using content analysis. Results: Four to 20 family caregivers per country were involved. QPLs ranged from 15-24 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.

Description

open access article

Keywords

Dementia, Family caregiver, Patient engagement, Shared decision making, End-of-life care, Nursing home

Citation

Bavelaar, L., Nicula, M., Morris, S., Kaasalainen, S., Achterberg, W.P., Loucka, M., Vlckova, K., Thompson, G., Cornally, N., Hartigan, I., Harding, A., Preston, N., Walshe, C., Cousins, E., Dening, K.H., De Vries, K., Brazil, K., van der Steen, J.T. (2021). 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 Counseling,

Rights

Research Institute

Institute of Health, Health Policy and Social Care