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Engaging IDD Stakeholders and Families as Partners in Research w/ Blaise Morrison, PhD, HSP-P, CRC, LPC(OH)Blue button that says "Register Now"
Date: Tuesday, February 14, 2023
Time: 12-1:30 pm ET
Format: Livestream
CE: 1 CE, read for more information on CEs
Fee:
$25, read for more information on fees and scholarships

Individuals with IDD/Special Needs, Self-Advocates, and their families can attend Focus on Family and Disability Seminars for FREE.

Description: This presentation focuses on the importance of research partnerships in IDD healthcare research. Individuals with IDD, especially those from marginalized backgrounds, are often excluded from healthcare research. These exclusion practices have significantly limited the IDD community from having a voice in healthcare research and practices. Without research partnerships, it is unlikely that healthcare practices will fully meet the needs of individuals with IDD and their families. Increasing engagement and partnership in research, on the other hand, will promote improved health outcomes, reduced health disparities, and the identification of evidence-based practices that are meaningful to individuals with IDD and their families. This presentation provides an overview of stakeholder-driven research, the importance of partnering with diverse IDD families in research, and potential practices, processes, and strategies for engaging stakeholders and families in IDD healthcare research.

Learning objectives: By end of the presentation, participants will be able to

  1. Identify and describe historical practices in IDD healthcare research, including gaps, areas of need, and lack of engagement by IDD stakeholders.
  2. List 3 strategies for developing research partnerships with families and stakeholders in the IDD community.
  3. Describe the benefits and considerations of engaging individuals with IDD and their families as partners in healthcare research.

Headshot of Blaise MorrisonTrainer: Dr. Blaise Morrison is an Assistant Professor in the Division of Clinical Rehabilitation and Mental Health Counseling in the UNC Department of Health Sciences. He is a rehabilitation psychologist and counselor with 12 years of clinical experience providing behavioral health and psychosocial interventions to families affected by disability and chronic illness (e.g., brain injury, stroke, cerebral palsy, IDD). He also serves as the Research and Evaluation Coordinator for the UNC Family Support Program, which provides support, resources, and education to families of children with special needs throughout North Carolina. Additionally, he facilitates multiple support groups for families and patients affected by brain injury and related disabilities. Morrison is the PI on a PCORI-funded project, Project BENEFIT: Building Effective Networks to Engage Families in Improving Transition, which aims to build long-lasting, sustainable partnerships with IDD stakeholders and families in BIPOC communities for the purpose of improving healthcare transition research and outcomes. Morrison’s past research experience focuses primarily on outcomes that are meaningful and important to patients and their families, including quality of life, community participation, transition, and family/caregiver well-being. He is passionate about disability advocacy, inclusion, and social/racial equity.

References:

  • Cheak-Zamora NC, Yang X, Farmer JE, & Clark M. Disparities in transition planning for youth with autism spectrum disorder. Pediatrics. 2013;131(3):447-454. doi: 10.1542/peds.2012-1572
  • Kuhlthau KA, Delahaye J, Erickson-Warfield M, Shui A, Crossman, M., & van der Weerd,E. (2016). Health care transition services for youth with autism spectrum disorders: Perspectives of caregivers. Pediatrics,137 (Supplement 2), S158–S166. doi: 10.1542/peds.2015-2851N
  • McManus MA, Pollack LR, Cooley, WC, et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131(6):1090-1097. doi: 10.1542/peds.2012- 3050
  • Steinbeck KS, Brodie L, Towns SJ. Transition in chronic illness: Who is going where? Journal of Paediatrics and Child Health. 2008;44(9):478-482.
  • Yu S, Lin S, Strickland B. Disparities in health care quality indicators among US children with special health care needs according to household language use. International Journal of MCH and AIDS. 2015;4(1): 3.
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