Helping people from culturally diverse backgrounds engage in Advance Care Planning
Currently available information and resources about Advance Care Planning (ACP) don’t adequately address the specific needs of diverse cultural, religious or language groups. To bridge this gap, we adapted and translated BCCPC’s training and toolkit for community-led Advance Care Planning information sessions to be more culturally appropriate and linguistically acceptable for people with a Chinese or South Asian background, who communicate mostly in Cantonese, Mandarin or Punjabi.
Project Plan 
- Development and testing of a culturally appropriate and linguistically acceptable community-led Advance Care Planning education model for Canadians with a Chinese or South Asian Background.
- Promoting and supporting community organizations in BC, which mainly serve Chinese and South Asian residents, to host on-going ACP public sessions.
- Training module and educational products for health-care providers to enable Advance Care Planning engagement and spread.
- Knowledge synthesis and spread.
Adaptation Process
- Assess the community’s beliefs
- Examine curriculum fit with community’s beliefs
- Adapt Advance Care Planning curriculum
- Evaluate and improve the quality of the Advance Care Planning curriculum
Project Outputs:
- Community-led public Advance Care Planning sessions toolkit, supplemental resources and curriculum updated and evaluated, and translated into Simplified Chinese, Traditional Chinese and Punjabi.
- Host 3 cohorts Advance Care Planning facilitator training. Around 70 staff and volunteers have been trained to host a public session.
- Around 28 communities using the adapted model to support people from Chinese or South Asian communities to engage in Advance Care Planning.
- Online training module for health-care provider around cultural considerations related to Advance Care Planning conversations with patients from Chinese or South Asian communities.
- Evidence of acceptability and efficacy of the culturally adapted model and the health-care provider training module.
- Recommendations for adaptation process of the model to other diverse populations.
Project Progress
Environmental Scan
To inform the project, an environmental scan was conducted. You can view it here:
- Part 1 Chinese – Literature Review
- Part 1 South Asian – Literature Review
- Part 2 – Email Survey
- Part 3 – End User Survey
- Part 4 – Key informant interviews
- Summary of findings
Toolkit Adapted and Translated
Between October 2019 and January 2020, we reviewed the Advance Care Planning sessions toolkit and curriculum, and adapted them for the Chinese and South Asian communities. This work was conducted by a working group for each community. The working groups include experts on Advance Care Planning and education, people with experience sharing Advance Care Planning information with the project’s communities, and members of public from the two communities. We also conducted 2-3 focus groups with members of the public from each community to gather a wider range of perspectives from members of the two communities.
Successful Piloting
We partnered with PICS (Progressive Intercultural Community Services) Surrey and Minoru Seniors Centre to pilot the adapted and translated toolkit in February 2020. We sincerely thank these two organisations for their participation and support in the project. A total of 7 facilitators were trained in how to facilitate the Advance Care Planning sessions, who then facilitated a session in Punjabi and a session in Mandarin for their community members. Feedback from the trained facilitators and public participants of the Advance Care Planning sessions helped us improve the adapted model.
Adaptations for the COVID-19 Pandemic – online sessions
Between April and July 2020, we adapted the Advance Care Planning sessions for delivery online, in response to COVID-19 pandemic restrictions. To do this, we consulted 147 members of the Chinese and South Asian communities, to ensure that we understand the needs of community members.
Following adaptation of the public session for online delivery, experienced facilitators piloted the holding the sessions online. Partnering with Community Engagement Advisory Network (CEAN), we first delivered a general session in English. We then conducted two sessions each for the Chinese and South Asian Communities. The Chinese sessions were conducted one in Mandarin and on in Cantonese. The South Asian sessions were conducted one in English and one in Punjabi. The feedback from these sessions demonstrated that the toolkit and curriculum amended for online delivery can be well accepted by these two communities.
Based on the public consultation and feedback from piloting, we identified a need to develop supplemental ACP education materials such as the webpages in 4 languages and a 3-resources guides explaining Representation Agreement (Section 9) in 4 languages.
Adapted Toolkit:
Conversation Starter:
Informational Handout:
Rather than a single page of information and a page of resources, the ACP information is now covered over 5 pages, with an expanded resources page and a glossary. Using a language selector present on translated pages, users can choose their preferred language from English, Simplified Chinese, Traditional Chinese and Punjabi. The content can be viewed by smartphone, tablet and PC.
Guides Explaining Representation Agreement (Section 9) – One of the legal options available in BC to appoint a substitute decision maker
To assist members of the communities to understand Representation Agreements, and feel confident in completing their own, we developed three documents, each available in English, Simplified Chinese, Traditional Chinese and Punjabi. Content of these documents was reviewed by subject matter experts for accuracy and members of the communities for usability. Final content underwent legal review.
- What you need to know about enhanced representation agreements (section 9)
English | Simplified Chinese | Traditional Chinese | Punjabi - What you need to know about being a representative in an enhanced representation agreement
English | Simplified Chinese | Traditional Chinese | Punjabi - A guided tour of the BC government’s enhanced representation agreement (section 9) form.
English | Simplified Chinese | Traditional Chinese | Punjabi
Facilitator Guide:
Program Overview, Community Partner Guide:
Presentations & Publications
Quality Forum 2021
Authors: Rachel Carter, Eman Hassan, Thomas Shajan, Jing Xu
Recording
coming soon
Presentation Slides
Click here to access the presentation slides.
Abstract:
Context: We have had great success partnering with community organizations to spread a community-led Advance Care Planning education program that trains and supports community organizations to facilitate in-person Advance Care Planning sessions for the public. Evaluation demonstrates the program is sustainable and effective in communities serving people who are predominantly Caucasian, well-educated, and English-speaking. To address the low uptake of Advance Care Planning resources in Chinese or South Asian communities, we culturally adapted and translated the program’s toolkit for people who speak Cantonese, Mandarin or Punjabi.
Intervention: Cultural and linguistic adaptation of the program’s toolkit was completed by a working group for each cultural group, using information gathered from an environmental scan, key informant interviews and focus groups. The working groups comprised members with subject-matter experience, and public partners from the communities. Toolkit components were translated, and confirmed by bilingual Working Group members. The toolkit was subsequently adapted for online delivery during the pandemic.
Measurement: The adapted toolkit was piloted and evaluated through a mixed-methods approach, collecting data from trained facilitators and public participants. The adapted sessions were well received, with public participants with a Chinese or South Asian background agreeing the sessions were appropriate for their culture (88-94%), and easy to understand in their language (71-94%). The concept was new to most public participants, but the session provided the key information they needed to begin Advance Care Planning conversations with family and friends as well as healthcare providers.
Lessons Learned: Adaptation included changes to account for health literacy and general cultural sensitivity, use of more relevant stories, culturally accepted translation of key terms, and provision of translated sample scripts. We conclude that cultural adaptation of Advance Care Planning education is feasible, and public partner participation in the process contributes greatly to the acceptability of the adapted resources.
Authors: Rachel Carter, Eman Hassan, Thomas Shajan
Poster
Abstract:
Context: Advance Care Planning aims to help people get care that’s right for them. Initiating Advance Care Planning conversations with patients allows healthcare providers to provide person-centred care. Yet, the literature indicates disparities among culturally diverse communities in rates of Advance Care Planning engagement. To address this, the BC Centre for Palliative Care developed an online learning course to help healthcare providers to demonstrate cultural competency and appropriate communication skills when conducting Advance Care Planning conversations with their culturally diverse patients, in particular patients with a Chinese or South Asian background.
Intervention: An online learning course was developed using information gathered from literature reviews, and from focus groups with members of the Chinese or South Asian communities. Three modules were developed:
- Advance Care Planning – a refresher module about Advance Care Planning.
- Culture’s impact on care – this module explains how culture can impact care and the importance of becoming aware of the related cross-cultural views and traditions. This module applies to all cultures.
- A Culturally considerate approach to Advance Care Planning – the final module provides an overview of the common as well as unique perspectives of the Chinese and South Asian cultures in relation to illness, care planning, decision-making, and dying.
While the module provides healthcare providers a foundation of cultural competencies to build on, it emphasizes that each patient is unique and should not be stereotyped.
Measurement: The developed course will be evaluated through a survey with healthcare providers following course completion, and online platform analytics. Data will be available to present in early 2021.
Lessons Learned: Culture influences care planning and decision making, especially in our ever-expanding diverse country. Cross-cultural considerations in Advance Care Planning conversations initiated by clinicians can help their culturally diverse patients to get care aligned with their values, beliefs and wishes.
For further information
For any further information about this project, please contact Rachel Carter.
This initiative has been made possible thanks to funding from Health Canada.
The views expressed herein do not necessarily represent the views of Health Canada.
