WIP 34 - Adolescent, Parent, and Provider Perspectives on Sexual and Reproductive Health Care for Adolescents with Congenital Heart Disease

Publication Number: WIP 34.7461

Catherine Van Garsse, Children's Mercy Research Institute, Clovis, CA, United States; Romina Barral, Children's Mercy Kansas City, Kansas City, MO, United States; Geetha Haligheri, child, Kansas City, Missouri, KS, United States; Ashli Lawson, University of Missouri-Kansas City School of Medicine, Kansas City, MO, United States; Tammy Basey, Children's Mercy Hospitals and Clinics, Kansas City, MO, United States; Julia I. Holmgren, University of Missouri-Kansas City School of Medicine, Kansas City, MO, United States; Kimberly A. Randell, Children's Mercy Kansas City, Kansas City, MO, United States

Background: Although female adolescents with congenital heart disease (CHD) have been documented to have increased contraception and obstetrics risks, sexual and reproductive health (SRH) care addressing these issues is inconsistently provided. Moreover, needs and care experiences regarding other aspects of SRH care and of male adolescents with CHD, along with the perspectives of their caregivers and cardiology providers, are not well understood.

Objective: This study aims to 1) describe perspectives of adolescents with CHD, their caregivers, and cardiology providers on SRH needs and related healthcare experiences of these teens and 2) identify implementation determinants impacting SRH care for adolescents with CHD in cardiology and other clinical settings.

Design/Methods: In this qualitative study, we are purposeful sampling to recruit English-speaking adolescents with CHD aged 14-19, their caregivers, and cardiology providers (physicians and advanced practice providers). Adolescents and caregivers are enrolled during a clinic visit; providers are recruited via email. Participants complete an online demographic survey and an in-person or virtual semi-structured interview. Survey data will be summarized with descriptive statistics. We have done 40 interviews to date and are analyzing data concurrently. Interviews are transcribed verbatim and coded independently by two coders using an inductive thematic approach. The coding team meets weekly to iteratively refine the codebook and interview guide, resolve coding discrepancies, and identify the point of data saturation. After coding, we will identify overarching themes, using the Practical, Robust Implementation and Sustainability Model (PRISM) to define barriers and supports for implementing cardiology clinic interventions that link teens with CHD to comprehensive, evidence-based SRH care. Data collection and analysis will be completed by February 2025. This study was approved by our institutional IRB.