title: Understanding advance care planning within the South Asian community.
abstract: 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.
  
  
  
  To explore perspectives of South Asian community members towards ACP.
  
  
  
  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.
  
  
  
  Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada.
  
  
  
  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).
  
  
  
  Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.
authors.affiliation: Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO), University of Calgary, Calgary, AB, Canada.
authors.forename: Patricia D
authors.initials: PD
authors.lastname: Biondo
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.
authors.forename: Rashika
authors.initials: R
authors.lastname: Kalia
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.
authors.forename: Rooh-Afza
authors.initials: RA
authors.lastname: Khan
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.
authors.forename: Nadia
authors.initials: N
authors.lastname: Asghar
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.
authors.forename: Cyrene
authors.initials: C
authors.lastname: Banerjee
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.
authors.forename: Debbie
authors.initials: D
authors.lastname: Boulton
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
authors.forename: Nancy
authors.initials: N
authors.lastname: Marlett
authors.affiliation: Patient and Community Engagement Research Program (PaCER), University of Calgary, Calgary, AB, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
authors.forename: Svetlana
authors.initials: S
authors.lastname: Shklarov
authors.affiliation: 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.
authors.forename: Jessica E
authors.initials: JE
authors.lastname: Simon
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001211:Asia, Western / Q000208:ethnology; D044466:Asian People / Q000523:psychology*; D002170:Canada / Q000453:epidemiology; D003142:Communication; D003466:Cultural Characteristics; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D036301:Qualitative Research; D012067:Religion
keywords: advance care planning; minority groups; patient engagement; patient engagement research; qualitative research