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

Laura Bavelaar; Maria Nicula; Sophie Morris; Sharon Kaasalainen; Wilco P Achterberg; Martin Loucka; Karolina Vlckova; Genevieve Thompson; Nicola Cornally; Irene Hartigan; Andrew Harding; Nancy Preston; Catherine Walshe; Emily Cousins; Karen Harrison Dening; Kay De Vries; Kevin Brazil; Jenny T van der Steen

doi:10.1016/j.pec.2021.07.031

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

Laura Bavelaar, Maria Nicula, Sophie Morris, Sharon Kaasalainen, Wilco P Achterberg, Martin Loucka, Karolina Vlckova, Genevieve Thompson, Nicola Cornally, Irene Hartigan, Andrew Harding, Nancy Preston, Catherine Walshe, Emily Cousins, Karen Harrison Dening, Kay De Vries, Kevin Brazil, Jenny T van der Steen

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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.

Original language	English
Article number	456
Number of pages	8
Journal	Patient Education and Counseling
Volume	21
DOIs	https://doi.org/10.1016/j.pec.2021.07.031
Publication status	Published - 09 Aug 2021

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10.1016/j.pec.2021.07.031Licence: CC BY

Developing and evaluating online COVIDcentric advance care planning training and information resources for nursing staff and family members in nursing homes: the necessary discussions study protocol
© 2021 The Authors. This is an open access article published under a Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium, provided the author and source are cited.
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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 and Counseling, 21, [456]. https://doi.org/10.1016/j.pec.2021.07.031

Bavelaar, Laura ; Nicula, Maria ; Morris, Sophie ; Kaasalainen, Sharon ; Achterberg, Wilco P ; Loucka, Martin ; Vlckova, Karolina ; Thompson, Genevieve ; Cornally, Nicola ; Hartigan, Irene ; Harding, Andrew ; Preston, Nancy ; Walshe, Catherine ; Cousins, Emily ; Dening, Karen Harrison ; De Vries, Kay ; Brazil, Kevin ; van der Steen, Jenny T. / Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers. In: Patient Education and Counseling. 2021 ; Vol. 21.

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title = "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 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.",

author = "Laura Bavelaar and Maria Nicula and Sophie Morris and Sharon Kaasalainen and Achterberg, {Wilco P} and Martin Loucka and Karolina Vlckova and Genevieve Thompson and Nicola Cornally and Irene Hartigan and Andrew Harding and Nancy Preston and Catherine Walshe and Emily Cousins and Dening, {Karen Harrison} and {De Vries}, Kay and Kevin Brazil and {van der Steen}, {Jenny T}",

year = "2021",

month = aug,

day = "9",

doi = "10.1016/j.pec.2021.07.031",

language = "English",

volume = "21",

journal = "Patient education and counseling",

issn = "0738-3991",

publisher = "Elsevier Ireland Ltd",

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Bavelaar, L, Nicula, M, Morris, S, Kaasalainen, S, Achterberg, WP, Loucka, M, Vlckova, K, Thompson, G, Cornally, N, Hartigan, I, Harding, A, Preston, N, Walshe, C, Cousins, E, Dening, KH, De Vries, K, Brazil, K & van der Steen, JT 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 and Counseling, vol. 21, 456. https://doi.org/10.1016/j.pec.2021.07.031

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; Nicula, Maria; Morris, Sophie; Kaasalainen, Sharon; Achterberg, Wilco P; Loucka, Martin; Vlckova, Karolina; Thompson, Genevieve; Cornally, Nicola; Hartigan, Irene; Harding, Andrew; Preston, Nancy; Walshe, Catherine; Cousins, Emily; Dening, Karen Harrison; De Vries, Kay; Brazil, Kevin; van der Steen, Jenny T.

In: Patient Education and Counseling, Vol. 21, 456, 09.08.2021.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers

AU - Bavelaar, Laura

AU - Nicula, Maria

AU - Morris, Sophie

AU - Kaasalainen, Sharon

AU - Achterberg, Wilco P

AU - Loucka, Martin

AU - Vlckova, Karolina

AU - Thompson, Genevieve

AU - Cornally, Nicola

AU - Hartigan, Irene

AU - Harding, Andrew

AU - Preston, Nancy

AU - Walshe, Catherine

AU - Cousins, Emily

AU - Dening, Karen Harrison

AU - De Vries, Kay

AU - Brazil, Kevin

AU - van der Steen, Jenny T

PY - 2021/8/9

Y1 - 2021/8/9

N2 - 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.

AB - 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.

U2 - 10.1016/j.pec.2021.07.031

DO - 10.1016/j.pec.2021.07.031

M3 - Article

C2 - 34376304

VL - 21

JO - Patient education and counseling

JF - Patient education and counseling

SN - 0738-3991

M1 - 456

ER -

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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