Mixed Methods feasibility study of group peer support interventions to engage the public in ACP
In this study, we looked at new ways to support members of the public to think and talk about what matters in relation to getting older and adjusting to changes in health.
Results will be updated on a continual basis.
About the Project
Advance Care Planning (ACP) encourages us all to be more actively involved in decision making about healthcare. Although ACP is something we can do on our own, we often require support from others. Most studies in ACP have focused on experts within the healthcare system.
We trained members of the public who volunteer at community organisations to support group ACP activity sessions. The sessions aimed to inform, promote conversation and break down barriers and stigmas around these conversations. We invited older adults and their caregivers and families to attend the sessions.
As the sessions were run by trained volunteers rather than experts, we looked at the volunteers’ experiences. We asked them how they felt running the sessions, what worked and what needed to be improved. We also studied how best to encourage older adults to come to the sessions. Lastly, we looked at whether the activities helped older adults be more involved in ACP activities and conversations. We looked at whether the sessions increased their comfort with the conversation, helped them identify what matters to them and helped them talk about it with their family and healthcare providers.
Doris Barwich, MD, CCFP — University of British Columbia
Eman Hassan, MD, MPH, PhDc — B.C. Centre for Palliative Care
Pippa Hawley, BMed, FRCPC — University of British Columbia
Arminee Kazanjian, DrSoc — University of British Columbia
Katherine Kortes-Miller, HBMT, MSW, PhD — Centre for Education and Research on Aging and Health (CERAH)
Jennifer Kryworuchko, RN, PhD, BScN, CNCC(C) — University of British Columbia
Richard Sawatzky, RN, MSc, PhD — Trinity Western University
Jessica Simon, MRCP(UK), FRCPC — University of Calgary
Shimae Soheilipour, DDS, PhD — University of British Columbia
Kelli Stajduhar, RN, PhD — University of Victoria
Knowledge Users and Partners:
Louise Hanvey, RN, BN, MHA — Advance Care Planning in Canada
Janet Zaharia — Health Services Policy Division, B.C. Ministry of Health
Project Contact: Rachel Carter — firstname.lastname@example.org
Rationale: In this study, we will look at new ways to support members of the public to think and talk about what matters in relation to getting older and adjusting to changes in health.
Hypothesis: Community based interventions facilitated by non-experts have the potential to increase Advance Care Planning (ACP) knowledge, awareness, readiness and engagement.
Objectives: This study will develop, implement and comprehensively evaluate the feasibility and acceptability of scalable, community based, peer-facilitated, group, ACP interventions for frail older adults, their caregivers and families.
Research Plan: The concurrent embedded mixed methods feasibility study will include (1) a pragmatic controlled trial and (2) a qualitative descriptive study. In phase one, we will invite volunteers with hospice training and group facilitation skills (or similar experience) to peer-facilitator training sessions. In phase two, frail older adults (>65 years with complex illness or > 80 years), and their informal caregivers and/or family member(s) will be invited to participate in three specific types of peer-facilitated, group ACP interventions that vary in level of engagement and topics addressed. Peer-facilitators and key informants will be invited to share their experience in focus groups and individual interviews.
Lay Title: Public sessions help older adults start Advance Care Planning
- Community volunteers can be trained to run advance care planning sessions for the public.
- The sessions help people start advance care planning.
- The sessions are acceptable by the public.
Why was this study was needed?
Advance care planning helps us get care that matches our wishes. Doctors don’t have enough time to educate people why advance care planning is important and how to do it. We studied if we can train volunteers to run advance care planning sessions for the public.
Suggestions on how these findings could impact frail older adults and/or their family caregivers and how this might be measured:
- Older people will find information about advance care planning in their communities
- After attending the sessions, older people will know why advance care planning is important and how to do it.
- After attending the sessions, older people will start advance care planning.
Brief comment on type of study in lay terms:
- We studied whether volunteers can run public sessions on advance care planning.
- We also studied whether the sessions can help people start advance care planning.
- We trained 57 community volunteers to run advance care planning sessions.
- We collected data from the volunteers before and after the training to see if they are ready to run the public sessions.
- We asked 217 people who attended the sessions about their experience, and 4-6 weeks later we asked them if they have started advance care planning.
- We interviewed community organizations about their experiences.
Lay Title: Community-delivered education sessions improve public engagement in Advance Care Planning
- Community volunteers and organizations can be trained and equipped with resources to deliver advance care planning sessions for the public.
- Community-delivered sessions are effective at increasing public awareness, knowledge, readiness and engagement in relation to advance care planning.
- Community-delivered advance care planning sessions are acceptable to the public.
Why was this study needed?
Advance care planning helps people get care that aligns with their wishes and values; however, levels of public awareness and engagement are low in BC. Reported barriers to advance care planning education by experts within the health system include limited time and competing priorities. We investigated the feasibility and effectiveness of training community volunteers and organizations to deliver advance care planning education sessions for the public.
Suggestions on how administrators or policy maker could use the findings:
- A one-day online and in person training curriculum is enough to equip community volunteers with the required knowledge, skills and confidence to become facilitators for advance care planning sessions.
- Community organizations will need minimal start-up costs ($2500 – $3000) and access to the implementation toolkit to establish an ongoing advance care planning education program for the public.
- Community-delivered advance care planning sessions improve partnerships between community organizations and health care and senior service providers.
Brief comment on type of study in lay terms:
- Our study hypothesized that community-delivered education sessions have the potential to increase public awareness, knowledge and engagement in relation to advance care planning.
- We partnered with two community organizations to develop the public education model which includes: a training curriculum and a start-up toolkit.
- We used questionnaires, focus groups and interviews to collect data from the trained volunteers, public participants who attended the sessions and the host community organizations.
- We collected data before and after the training from 57 volunteers to measure changes in levels of ACP knowledge, skills and confidence.
- We collected data before and after the sessions from 217 public participants to measure changes in levels of knowledge and readiness to engage in ACP and conducted follow up interviews 4-6 weeks later to measure engagement in ACP activities.
- We interviewed 8 community organizations from across BC about their experiences with hosting advance care planning sessions for the public.
Lay Title: Changing the way we provide care within a palliative approach
- Residents and families felt that the Illness Trajectory Pamphlets encouraged them to think about personal values and goals of care and increased their comfort talking about EOL
- The palliative performance scale was interdisciplinary communication useful in triggering family care conferences and goals of care discussions
- Staff identified several benefits of the SPA-LTC program including the program being beneficial in improving interdisciplinary communication
Why was this study needed?
As the population ages, there are an increasing number of residents living in long-term care homes that require a palliative approach to care. However, long-term care homes are ill-prepared for the deaths of their residents and require access to strategies that allow them to identify residents approaching end-of-life and provide them with appropriate care. This study aimed to develop a palliative care program to improve the integration and delivery of a palliative approach to care for residents living in long-term care homes and their families.
Brief overview of the methodology:
The main goal of this study was to adapt, implement and evaluate a palliative care program, called Strengthening a Palliative Approach in Long Term Care. A mixed methods multiple case study design and participatory action research approach was used. The study population included English-speaking residents living in long-term care homes and their families. The palliative care program involved the development of an interprofessional palliative care team, family care conferences used to discuss end-of-life care, implementing the use of the palliative performance scale, and the distribution of pamphlets describing varying chronic illnesses to educate residents and families. Other areas of interest included family satisfaction with care, staff knowledge, facility readiness in palliative care, number of hospital admissions and deaths during the last year of life.
Potential impact of findings on clinical practice/patient care and how this impact might be measured:
- Findings from this study have the potential to improve quality of life of older adults living and dying in long term care.
- They will help provide better support to families and provide information on how to improve the delivery of palliative care in long term care homes globally.
Remaining knowledge/research gaps:
- All residents included in the study were cognitively able and thus future work should focus on supporting staff and families in providing comfort to residents with dementia
- Develop strategies to engage frail elderly in advance care planning discussions early in their illness trajectory.
CFN Webinar (September 12, 2018): Mixed Methods feasibility study of group peer support interventions to engage the public in ACP