While it is known that type 1 diabetes affects a families’ quality of life, it is unclear whether families living in rural communities experience additional challenges or limitations in the daily management of care or successfully return to their normal daily routines. A Patient-Centered Advisory Research Team (PCART) of committed stakeholders will be organized to conduct focus groups and interviews with a diverse group of stakeholders to identify the unique challenges that children with type 1 diabetes and families face living in rural communities.
After the interviews, the PCART will complete capacity training, develop future research questions, propose potential solutions, develop proposal ideas for clinical effectiveness research studies, and disseminate findings to advocacy organizations, patients, clinicians, and other interested stakeholders. The long-term goal of this project is to establish a team of stakeholders (PCART) who are prepared to engage in the development, implementation, and dissemination of patient-centered outcomes research findings. The short-term objectives of this project include: conduct and analyze findings from interviews and establish and train a PCART for engagement and participation in patient-centered outcomes research.
Through use of focus groups and virtual platforms, the stakeholder team will conduct multiple interviews to garner an in-depth understanding of the needs of families caring for children with type 1 diabetes. Additionally, exploration topics will include how stakeholders would like to participate in research and receive research findings. The PCART will participate in various trainings in patient-centered outcomes research and develop a research agenda to solve the previously identified needs.
There are three primary outcomes of this project. The first is the establishment of a PCART. The second outcome is the development of a report that identifies specific needs of families with a child with type 1 diabetes living in a rural community. The third outcome is the development of a patient-centered outcomes research agenda. Overall, the expected outcome of the project will effectively engage stakeholders in patient-centered type 1 diabetes research. The stakeholder team consists of one caregiver (patient), an employee of the JDRF, a pharmacist and nurse (clinicians), and the project lead, who is also the mother of a child diagnosed with type 1 diabetes and occupational therapist. The stakeholder team will meet a minimum of once a month to develop the interview questions, conduct interviews, and develop a final report. They will also help identify individuals interested in participating in the PCART. The PCART will consistently meet to develop a patient-centered outcomes research agenda.
Project collaborators include Creighton University, JDRF, the University of Oklahoma Health Sciences Center, and the Center for Promoting Health & Health Equality.
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