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

卷:105

Article

Bavelaar, Laura¹  Nicula, Maria²  Morris, Sophie³  Kaasalainen, Sharon²  Achterberg, Wilco P.¹  Loucka, Martin⁴  Vlckova, Karolina⁴  Thompson, Genevieve⁵  Cornally, Nicola⁶  Hartigan, Irene⁶  Harding, Andrew⁷  Preston, Nancy⁷  Walshe, Catherine⁷  Cousins, Emily⁸  Dening, Karen Harrison^8,9  De Vries, Kay⁸  Brazil, Kevin³  van der Steen, Jenny T.^1,10 

[1] Leiden Univ, Dept Publ Hlth & Primary Care, Med Ctr, Hippocratespad 21,Postbox 9600, NL-2300 RC Leiden, Netherlands

[2] McMaster Univ, Sch Nursing, Hamilton, ON, Canada

[3] Queens Univ Belfast, Sch Nursing & Midwifery, Belfast, Antrim, North Ireland

[4] Ctr Palliat Care, Prague, Czech Republic

[5] Univ Manitoba, Coll Nursing, Winnipeg, MB, Canada

[6] Univ Coll Cork, Catherine McAuley Sch Nursing & Midwifery, Cork, Ireland

[7] Univ Lancaster, Div Hlth Res, Lancaster, England

[8] De Montfort Univ, Sch Nursing & Midwifery, Leicester, Leics, England

[9] Dementia UK, London, England

[10] Radboud Univ Nijmegen Med Ctr, Dept Primary & Community Care, Nijmegen, Netherlands

关键词: Dementia;    Family caregiver;    Patient engagement;    Shared decision making;    End-of-life care;    Nursing home;   

DOI  :  10.1016/j.pec.2021.07.031

来源: Elsevier

【 摘 要 】

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. (c) 2021 The Author(s). Published by Elsevier B.V. CC_BY_4.0

【 授权许可】

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