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Understanding advance care planning within the South Asian community.
Health Expect. 2017 10; 20(5):911-919.HE

Abstract

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.

Authors+Show Affiliations

Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO), University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada. Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada. Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO), University of Calgary, Calgary, AB, Canada. Departments of Oncology, Medicine, and Community Health Sciences, University of Calgary, Calgary, AB, Canada.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

28294479

Citation

Biondo, Patricia D., et al. "Understanding Advance Care Planning Within the South Asian Community." Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, vol. 20, no. 5, 2017, pp. 911-919.
Biondo PD, Kalia R, Khan RA, et al. Understanding advance care planning within the South Asian community. Health Expect. 2017;20(5):911-919.
Biondo, P. D., Kalia, R., Khan, R. A., Asghar, N., Banerjee, C., Boulton, D., Marlett, N., Shklarov, S., & Simon, J. E. (2017). Understanding advance care planning within the South Asian community. Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, 20(5), 911-919. https://doi.org/10.1111/hex.12531
Biondo PD, et al. Understanding Advance Care Planning Within the South Asian Community. Health Expect. 2017;20(5):911-919. PubMed PMID: 28294479.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Understanding advance care planning within the South Asian community. AU - Biondo,Patricia D, AU - Kalia,Rashika, AU - Khan,Rooh-Afza, AU - Asghar,Nadia, AU - Banerjee,Cyrene, AU - Boulton,Debbie, AU - Marlett,Nancy, AU - Shklarov,Svetlana, AU - Simon,Jessica E, Y1 - 2017/03/10/ PY - 2016/11/23/accepted PY - 2017/3/16/pubmed PY - 2018/6/5/medline PY - 2017/3/16/entrez KW - advance care planning KW - minority groups KW - patient engagement KW - patient engagement research KW - qualitative research SP - 911 EP - 919 JF - Health expectations : an international journal of public participation in health care and health policy JO - Health Expect VL - 20 IS - 5 N2 - 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. SN - 1369-7625 UR - https://www.unboundmedicine.com/medline/citation/28294479/Understanding_advance_care_planning_within_the_South_Asian_community_ L2 - https://doi.org/10.1111/hex.12531 DB - PRIME DP - Unbound Medicine ER -