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; and 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.
Recruitment to platform at one of the hubs
Consent and enrolment in platform
Collection of key data, minimizing participant burden for individual trials
Screening automatically for all trials taking place on the platform, maximizing options for patients and caregivers
Trials – patients and caregivers participate in trials they are eligible for
Ongoing check-ins – patients and caregivers are followed until they choose to stop participating or until patient death
Bereavement – we follow caregivers for up to three years and offer them bereavement interventions
By linking practice and research, the platform will improve care for patients and families affected by advanced cancer.
Practice
Clinicians, patients, and caregivers identify areas for improvement in care.
PCPCRC
Supports foundational research that identifies promising interventions.
Research Platform
Comprised of Phase 3 RCTs, Research Hubs, Data Strategy.
Evaluation of hub model and data strategy to optimize research.
Training and mentorship underlie and uphold all activities in the cycle.