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

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dc.cclicenceCC-BYen
dc.contributor.authorBavelaar, Laura
dc.contributor.authorNicula, Maria
dc.contributor.authorMorris, Sophie
dc.contributor.authorKaasalainen, Sharon
dc.contributor.authorAchterberg, Wilco
dc.contributor.authorLoučka, Martin
dc.contributor.authorVlckova, Karolina
dc.contributor.authorThompson, Genevieve
dc.contributor.authorCornally, Nicola
dc.contributor.authorHartigan, Irene
dc.contributor.authorHarding, Andrew
dc.contributor.authorPreston, Nancy
dc.contributor.authorWalshe, Catherine
dc.contributor.authorCousins, Emily
dc.contributor.authorHarrison Dening, Karen
dc.contributor.authorde Vries, Kay
dc.contributor.authorBrazil, Kevin
dc.contributor.authorvan der Steen, Jenny
dc.date.acceptance2021-07-20
dc.date.accessioned2021-09-24T08:33:34Z
dc.date.available2021-09-24T08:33:34Z
dc.date.issued2021-07-23
dc.descriptionopen access articleen
dc.description.abstractObjective: 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.en
dc.funderOther external funder (please detail below)en
dc.funder.otherAlzheimer's Societyen
dc.funder.otherThe EU Joint Programme – Neurodegenerative Disease Research (JPND)en
dc.identifier.citationBavelaar, 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,en
dc.identifier.doihttps://doi.org/10.1016/j.pec.2021.07.031
dc.identifier.urihttps://dora.dmu.ac.uk/handle/2086/21268
dc.language.isoenen
dc.peerreviewedYesen
dc.publisherElsevieren
dc.researchinstituteInstitute of Health, Health Policy and Social Careen
dc.subjectDementiaen
dc.subjectFamily caregiveren
dc.subjectPatient engagementen
dc.subjectShared decision makingen
dc.subjectEnd-of-life careen
dc.subjectNursing homeen
dc.titleDeveloping Country-specific Questions about End-of-life Care for Nursing Home Residents with Advanced Dementia using the Nominal Group Technique with Family Caregiversen
dc.typeArticleen

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