December 14, 2021
The PCORI Addressing Health Equity award described below was developed with funding from the UNC Eshelman School of Pharmacy and the North Carolina Translational and Clinical Sciences (NC TraCS) Institute $2K Stakeholder Voucher award program. The Informatics and Data Science (IDSci) Program within the NC TraCS Institute provided access to data from the Carolina Data Warehouse to support preliminary research.
Kathleen C Thomas, Ph.D., MPH of the UNC Eshelman School of Pharmacy will lead a comparative effectiveness research study to improve health outcomes for youth with intellectual and developmental disability (IDD) and their parents through two-parent peer-group interventions, one parent-directed and one adding advocacy skills training.
A $4.3 million award from the Patient-Centered Outcomes Research Institute (PCORI) will allow researchers from the UNC-Chapel Hill Schools of Pharmacy and Medicine, the UNC Sheps Center for Health Services Research, Olson Huff Center for Child Development at Mission Health, the Mountain Area Health Education Center, Oregon State University, University of Southern California, University of Texas Arlington, Ball State University, Johns Hopkins Bloomberg School of Public Health, community partners and stakeholder advocates to address unmet needs among transition-age youth with IDD and their parents. PCORI’s 2019 reauthorizing legislation specifies IDD as a research priority.
Kathleen C Thomas, Ph.D., MPH
, associate professor in the Division of Pharmaceutical Outcomes and Policy, UNC Eshelman School of Pharmacy, will lead the Improving the health of parents and their adolescent and transition-age youth with IDD study that seeks to increase parent advocacy skills for youth in transition. Parent advocacy skills are the internal states (activation, self-efficacy) and processes (identifying and working toward goals, chronic disease self-management, shared decision-making with providers, persistence working toward goals) that result in improved parent health outcomes (reduced stress and depression) and improved youth health outcomes (social functioning, emotional health).
Parent advocacy skills can be increased through parent-directed peer-learning or through a psychoeducational advocacy skills curriculum. Parent-directed peer-learning groups provide both emotional and informational support. Core attributes are shared social identity, learning from the experiences of others, fostering personal growth and the opportunity to support others. Psychoeducation advocacy skills interventions teach how to formulate questions to get information, goal setting and assessment, and provide a framework for health communications where the parent takes an active role in decision-making. They also include attention to parent self-care and well-being.
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