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Understanding advance care planning within the South Asian community

Bibliographic Data

ID19508335
AuthorsPatricia Biondo (0000-0002-8088-5755, University of Calgary), Patricia D Biondo (Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO) University of Calgary Calgary AB Canada), Rashika Kalia (Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Rooh‐Afza Khan (Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Nadia Asghar (0000-0002-0302-3991, Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Cyrene Banerjee (Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Debbie Boulton (Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Nancy Marlett (0000-0001-6417-1894, Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Svetlana Shklarov (Patient and Community Engagement Research Program (PaCER) University of Calgary Calgary AB Canada), Jessica Simon (0000-0002-5966-2063, University of Calgary, corresponding author), Jessica E Simon (Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO) University of Calgary Calgary AB Canada)
Year2017
Volume20
Issue5
Pages911-919
Publication date2017-10-01
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.12531
PMID28294479
OpenAlexW2593284111
LanguageEN
Citations received5
References cited25

BACKGROUND: Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. OBJECTIVE: To explore perspectives of South Asian community members towards ACP. DESIGN: Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. SETTING AND PARTICIPANTS: Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada. RESULTS: The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). CONCLUSIONS: Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP

Advance care planning · Community engagement · Donation · Ethnic group · Fatalism · Focus group · Immigration · Medical education · Palliative care · Political science · Public relations · Sociology · Family and Patient Care in Intensive Care Units · Grief, Bereavement, and Mental Health · Medicine · Nursing · Palliative Care and End-of-Life Issues · Psychology

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Citations per year0.71
Citation span2019 - 2025 (7)
Highly citedNo

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