The limited evidence describing the quality of Chinese patients’ care during serious illness reveals significant inequities. 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, its role among marginalized, minoritized, and racialized communities is 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.
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.