UNC Researchers Receive $ 4.3 Million From PCORI To Study Strategies To Improve Health Outcomes For Youth With Developmental And Developmental Disabilities And Their Parents

Kathleen C Thomas, PhD, MPH of UNC Eshelman School of Pharmacy to lead a comparative research study on the effectiveness in improving health outcomes for youth with intellectual and developmental disabilities (IDD) and their parents through two interventions peer group, one led by parents and one adding training in advocacy skills.


The PCORI Addressing Health Equity Award described below was developed with funding from the UNC Eshelman School of Pharmacy and the NC TraCS $ 2K Stakeholder Voucher Award Program. The TraCS Informatics and Data Science (IDSci) program provided access to data from the Carolina Data Warehouse to support preliminary research.


Kathleen C Thomas, PhD, MPH of UNC Eshelman School of Pharmacy to lead a comparative research study on the effectiveness in improving health outcomes for youth with intellectual and developmental disabilities (IDD) and their parents through two interventions peer group, one led by parents and one adding training in advocacy skills.

Patient-Centered Outcomes Research Institute (PCORI) $ 4.3 million grant will enable researchers from UNC Chapel Hill Schools of Pharmacy and Medicine, UNC Sheps Center for Health Services Research, Olson Huff Center for Child Development at Mission Health, 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 the unmet needs of transitional youth with IDD and their parents. PCORI’s 2019 reauthorization legislation specifies DLI as a research priority.

Kathleen C Thomas, PhD, MPH, Associate Professor in the Division of Pharmaceutical Outcomes and Policy, UNC Eshelman School of Pharmacy, will lead the study Improving the Health of Parents and Their Adolescents and Transitional Age Youth with IDD which aims to increase defending the rights of parents skills for young people in transition. Parental advocacy skills are the internal states (activation, self-efficacy) and processes (identification and achievement of goals, self-management of chronic diseases, shared decision-making with providers, persistence in achieving goals) that translate into improved health outcomes for parents (reduced stress and depression) and better health outcomes for young people (social functioning, emotional health).

Parental advocacy skills can be enhanced through parent-led peer learning or through a psycho-educational advocacy skills program. Parent-led peer learning groups provide emotional and informational support. Core attributes are shared social identity, learning from the experiences of others, promoting personal growth, and the ability to support others. Psychoeducational advocacy skills interventions teach how to formulate questions for 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 the personal care and well-being of parents.

The main results of the study are parental activation, a measure of self-efficacy in managing chronic diseases at home and meeting needs in the health system; parental depression and social functioning of young people with IDD. To test the comparative effectiveness of each parenting intervention, the team will enroll 404 youth with IDD and one parent served in four practices in Chapel Hill and Asheville in the parent-led or psychoeducational group intervention. The team will link survey data from parents and youth with details of recorded visits and electronic medical records as well as interviews with caregivers to understand the mechanisms that best support parental outcomes and young people.

A stakeholder advisory committee will meet quarterly and inform all aspects of the study. The advisory committee is made up of parents of young people with IDD; young people with IDD who engage in health and community services that the study will examine; and health advocates who work to support the health, community participation and research engagement of young people with IDD and their families.

The PCORI Board of Directors approved this funding allocation pending the completion of a review of activities and programs by PCORI staff and the issuance of a formal award contract. The PCORI is an independent, not-for-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information they need to make better-informed decisions about their health care. health. The study team plans to start work in the spring of 2022.

Parental advocacy skills can be enhanced through parent-led peer learning or through a psycho-educational advocacy skills program. Parent-led peer learning groups provide emotional and informational support. Core attributes are shared social identity, learning from the experiences of others, promoting personal growth, and the ability to support others. Psychoeducation advocacy skills interventions teach how to formulate questions for information, goal setting and assessment, and provide a framework for health communications where the parent takes an active role in advocacy. decision making. They also include attention to the personal care and well-being of parents.

The main results of the study are parental activation, a measure of self-efficacy in managing chronic diseases at home and meeting needs in the health system; parental depression and social functioning of young people with IDD. To test the comparative effectiveness of each parenting intervention, the team will enroll 404 youth with IDD and one parent served in four practices in Chapel Hill and Asheville in the parent-led or psychoeducational group intervention. The team will link survey data from parents and youth with details of recorded visits and electronic medical records as well as interviews with caregivers to understand the mechanisms that best support parental outcomes and young people.

A stakeholder advisory committee will meet quarterly and inform all aspects of the study. The advisory committee is made up of parents of young people with IDD; young people with IDD who engage in health and community services that the study will examine; and health advocates who work to support the health, community participation and research engagement of young people with IDD and their families.

The PCORI Board of Directors approved this funding allocation pending the completion of a review of activities and programs by PCORI staff and the issuance of a formal award contract. The PCORI is an independent, not-for-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information they need to make better-informed decisions about their health care. health. The study team plans to start work in the spring of 2022.

Originally posted on shepscenter.unc.edu

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