Research Priorities of Young People Living with Chronic Conditions and their Caregivers
OUR GOAL: We aimed to identify the highest priority research questions of young people living with chronic illness and their caregivers. The rising number of children carrying chronic disease with them into adulthood presents the research community with an obligation to address their unique needs.
OUR PROCESS: We recruited 3 cohorts of participants (adolescent patients age 15-18 years, young adult patients age 19-25 years, and caregivers) from two hospitals and two community organizations. Participants attended focus groups where we utilized the Research Prioritization by Affected Communities (RPAC) method to identify unanswered questions about chronic conditions in the context of the participant’s own experiences.
WHAT WE LEARNED: The participants developed and prioritized 300 potentially researchable questions. The top ranked questions for each group are listed here:
San Francisco Adolescent Patient Questions
Oakland Adolescent Patient Questions
San Francisco Caregiver Questions
San Francisco Young Adult Patient Questions
THEMES: Although the top-ranked research topics varied by group, the following five topics were priorities across all groups:
Read our published papers
Getting to Hope: perspectives from patients and caregivers living with chronic childhood illness