Pediatric palliative care (PPC) teams follow children with serious illness over time to help improve quality of life. Making difficult medical decisions is often hard for parents, and PPC teams help with decision making. Unfortunately, parents sometimes feel that their views are not heard by the healthcare team, and decision making can cause disagreements. This study will identify strategies from mediation and other conflict management processes that could be adapted for use in shared decision making. The first step in developing a new intervention is to describe what previous researchers have done in a “scoping review.” Our team will work with a professional librarian to find studies about conflict interventions in healthcare, and we will summarize what the interventions were, how they were done, and what was measured to determine their effect.
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.