Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00216208%3A11120%2F22%3A43923573" target="_blank" >RIV/00216208:11120/22:43923573 - isvavai.cz</a>

Alternative codes found

RIV/03463583:_____/22:N0000001

Result on the web

<a href="https://doi.org/10.1186/s12904-022-00962-z" target="_blank" >https://doi.org/10.1186/s12904-022-00962-z</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1186/s12904-022-00962-z" target="_blank" >10.1186/s12904-022-00962-z</a>

Result language

angličtina

Original language name

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan

Original language description

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Czech name

—

Czech description

—

Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

—

OECD FORD branch

30227 - Geriatrics and gerontology

Project

<a href="/en/project/8F19005" target="_blank" >8F19005: Scaling up the Family Career Decision Support Intervention: A transnational effectiveness-implementation evaluation</a><br>

Continuities

N - Vyzkumna aktivita podporovana z neverejnych zdroju

Publication year

2022

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

BMC Palliative Care

ISSN

1472-684X

e-ISSN

1472-684X

Volume of the periodical

21

Issue of the periodical within the volume

1

Country of publishing house

GB - UNITED KINGDOM

Number of pages

8

Pages from-to

76

UT code for WoS article

000796522600001

EID of the result in the Scopus database

2-s2.0-85130072448