2023
Improving the Bereavement Experience Among People Who Are Experiencing Homelessness in BC
Dr. Joshua Black
BC Centre for Palliative Care
Our recent research at the BC Centre for Palliative Care shows that there aren’t enough grief supports available for people experiencing homelessness after someone they care about dies. Additionally, there has been very little research conducted to understand this type of grief among people living within the context of homelessness. It is not possible to improve care for this vulnerable population if their experiences are not understood. In this research study we will interview people with lived experiences of both grief (from a death of someone they cared about) and homelessness. Our goal is to better understand their experiences and learn their perspectives on how they can be best supported moving forward. The findings of these studies will inform new policy development and service improvement efforts aiming to enhance the availability and access to quality grief supports tailored to the needs of people experiencing homelessness.
Improving support of substitute decision makers: Journey mapping decision-making needs and support tools for caregivers of people living with dementia
Seema King
University of Calgary
Problem: Family caregivers often feel unprepared to make medical decisions including end-of-life decisions for people living with dementia (PLwD). This can negatively affect their ability to make decisions. Currently, there are no supports used consistently in Canada to support caregivers making decisions for PLwD. Methods: First, we will listen to caregivers of PLwD and map their decision-making journey, and the supports they used. Next, we will match available supportive resources to their decisions to see when existing resources could be used and what decisions have no current supports. Lastly, we will brainstorm with caregivers, healthcare providers and community organizations, how to improve access to decision support tools. Impact: This study fills a knowledge gap in palliative care by identifying major substitute decision points that caregivers face. It also fills a practice gap by identifying where new or existing resources could be used by clinicians to support caregivers.
Exploring the Experiences of Spousal and Child Caregivers from Minority Groups Caring for Family Members at the End-of-Life
Dr. Wenshan Li
Ottawa Hospital Research Institute
Family caregivers support older Canadians greatly and ensure dignity in their end-of-life days. Caregivers of individuals from racial, ethno-cultural, and linguistic minority groups often experience additional challenges and are less supported. Yet, little is known about their experiences. This study will explore the experiences and challenges of caregivers of individuals at the end-of-life who belong to racial, ethno-cultural, and/or linguistic minority groups.
Our aims are:
1) Document the experiences of spousal and child caregivers of individuals at the end-of-life, exploring nuances related to their minority status
2) Understand their experiences and perceptions of palliative care support and resources
3) Explore how caregiving experiences impact caregivers who are, or will soon be, care-recipients themselves in terms of decisions about their own care.
We will interview caregivers to collect in-depth information and interpret the findings with a health equity lens.
Improving Serious Illness Conversations in Patients with Structural Vulnerabilities
Dr. Emma Schon
Providence Health Care – Palliative Care Program
Conversations between clinicians and patients about goals of care become increasingly important when patients experience serious illness. The complexity of serious illness conversations multiplies dramatically when the patient is experiencing substance use disorders, mental health issues, homelessness or other challenges related to socio-economic factors (referred to as structural vulnerabilities). Currently, little is known about the preferences of structurally vulnerable patients while engaging in serious illness conversations. This is a major practice gap and an important area of palliative care research. Through one-on-one interviews, we will hear directly from patients about their experiences having these conversations. We will identify common themes and preferences for engaging in serious illness conversations. Ultimately, we hope to develop a best practice guide for clinicians and improve health care for patients experiencing structural vulnerabilities.
2022
Palliative care Awareness and Referral patterns of Adolescents and young adults with Life Limiting illness at End of Life (PARALLEL study)
Dr. Mohamed Abdelaal
The Ottawa Hospital
Very little is known about the palliative care referral patterns of Adolescents and Young Adults (AYA) patients, and the referral practices of their medical teams in Ontario. To help address this gap in medical care, a retrospective study will be conducted to describe the referral patterns of AYA patients to palliative care, and define the factors associated with the incidence and timing of these referrals. AYA patients, aged 15-39 years old, who died as a result of any life limiting illness (malignant and non-malignant) in Ontario between 01 January 2017 and 31 December 2021 will be identified. Data about timing of palliative care referral, and characteristics of the referring service, including medical specialty, age and practice location of the referring healthcare provider, and type of palliative care service requested will be obtained. The findings of the current study will help improve the palliative care referral process of AYA patients, and will inform a qualitative study to be conducted in 2023/2024.
Exploring the Facilitators to and Barriers in Providing Outpatient Palliative Care to Refugees: A Mixed Methods Case Study
Dr. Priya Gupta
Division of Palliative Care
Department of Family Medicine
McMaster University
Despite palliative care being key to the right to health, there is a significant gap in equitable access. Due to lack of or delay in obtaining provincial health coverage, Canadian refugees face significant challenges in accessing community palliative care services and therefore, are more likely to have aggressive medical interventions at the end of life. The goal of this project is to explore the challenges refugees face when trying to access palliative care in the greater Hamilton, Ontario area. This project explores these questions by interviewing healthcare professionals in the community who provide palliative care and refugee patients who have palliative care needs. We will also look at administrative data that will provide a holistic understanding of palliative care access. This project ultimately hopes to shed light on the refugee experience in palliative care and begin the process of closing the inequitable gaps that exist for refugees accessing palliative care.
Speaking Compassionately with Seriously Ill Chinese Immigrants and Their Caregivers (仁医仁语)
Dr. Zhimeng Jia
Temmy Latner Centre for Palliative Care
The limited evidence describing the quality of Chinese patients’ care during serious illness reveals significant inequities. Although healthcare disparities are evident for all racial and ethnic minorities, most efforts to understand and alleviate these disparities have focused on indigenous, Black and Hispanic communities. As a result, there remains a paucity of literature aimed at understanding and alleviating health inequities among Chinese and Asian adults with serious illness in North America. Palliative care may be uniquely positioned to address these health disparities, because it aims to provide “active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end-of-life.” While growing research points to the benefit of palliative care during serious illness, including improved quality of life, care satisfaction, and care outcomes, the role among marginalized, minoritized, and racialized communities are unknown.
The overall purpose of this research plan is to better understand the perceived role and lived experiences of palliative care among Chinese patients through a combination of recorded naturally-occurring conversations and in-depth interviews. The generated data will be used to develop a culturally-tailored communication intervention to improve seriously ill Chinese patients’ and their caregivers’ engagement and satisfaction with palliative care.
Embedded Palliative Outpatient Care for Heart disease (EPOCH): Innovative Research in Palliative and End-of-Life Care in an Ambulatory Heart Failure Population
Dr. Caroline McGuinty
University of Ottawa Heart Institute
Heart failure (HF) is a chronic, progressive and highly symptomatic disease. There are over 600,000 Canadians living with the disease and 50,000 new cases diagnosed each year. It remains the most common reason for hospital admissions in patients over 65 years of age. Palliative Care is an approach that improves the quality of life of patients with life-threatening illness and their caregivers and is well suited for patients with HF. Despite the demonstrated benefits of palliative care in cancer, there is limited evidence for palliative care in HF, and even more limited evidence on outpatient palliative care for HF.
There is a need for a model of outpatient palliative care for patients with advanced HF and their families. Our study aims to explore the care provided by a novel specialized cardiac palliative outpatient clinic and how patients and caregivers perceive care provided by that clinic. We will describe this novel outpatient program through a chart review and qualitative interviews. Our chart review will identify patient demographics, processes of care, and outcomes. Our qualitative interviews will explore patient and caregiver perspectives as to why an outpatient palliative program for patients with HF is effective, and garner suggestions regarding how this model can meet their care needs. This study will inform the ongoing design and delivery of palliative care for patients with HF and can be applied to other diseases such as advanced lung and kidney disease.
