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Research Project: Preventing the Development of Childhood Obesity

Location: Children's Nutrition Research Center

Title: Filling the gap: Understanding transition needs of minority youth with CHD

item MASOOD, AYESHA - Baylor College Of Medicine
item LOVICK, DONNA - Baylor College Of Medicine
item BROUSSARD, NICOLE - Baylor College Of Medicine
item Thompson, Deborah - Debbe
item LOPEZ, KEILA - Baylor College Of Medicine

Submitted to: Meeting Abstract
Publication Type: Abstract Only
Publication Acceptance Date: 8/31/2020
Publication Date: 10/28/2020
Citation: Masood, A., Lovick, D.K., Broussard, N.S., Thompson, D.J., Lopez, K.N. 2020. Filling the gap: Understanding transition needs of minority youth with CHD [abstract]. 12th Annual Virtual Healthcare Transition Research Consortium (HCTRC) Research Symposium. October 28, 2020. Poster Presentation.

Interpretive Summary:

Technical Abstract: Young adults with congenital heart disease (CHD) often have gaps in care during the transition period between pediatric and adult care; these gaps are often pronounced in minority youth. The transition needs of minority youth with CHD are largely unknown. The goal of our study was to conduct a needs assessment of minority youth with CHD to determine barriers and preferences during the transition period. IRB approval was obtained. Demographic and CHD severity information was collected from youth with CHD who were recruited from cardiology clinics. Individual interviews were conducted surrounding feelings and deterrents during the transition process until thematic saturation was achieved. Transcription, coding, and content/thematic analysis were conducted (NVivo 12). Ten interviews were completed, with 90% of participants from minority groups (n=9; 2 non-Hispanic Black, 6 Hispanic, 1 Asian). For minorities, 40% (n=4) had severe and 50% (n=5) had moderate CHD complexity, and approximately 70% had public insurance. The top 3 transition needs identified were: (1) Lack of knowledge surrounding transition skills (78%); (2) Desire to improve CHD knowledge via teen CHD support groups (67%) and private discussions with a transition nurse (78%); (3) Gaps in knowledge surrounding reproductive health (44%) and communicating with peers about CHD (33%). Two-thirds wanted information through a mobile application or website, with capabilities to message their medical provider (100%), have a checklist to monitor their transition progress (89%) and communicate with other teens with CHD (78%). Minority youth with CHD expressed a distinct need to connect with other CHD teens both in person and via e-health, and to have private communication surrounding reproductive health and other topics with healthcare providers. E-health platforms, with various communicative features, were identified as a helpful way to improve the transition process. Further research is needed to develop programs to meet these needs.