The study includes patients with congenital heart disease (CHD), as well as their support persons and their providers, who are preparing to make the transition from pediatric to adult care for their CHD. The purpose of this study is to improve the tools available to help find doctors as patients enter adulthood. 200 people with CHD and support people will be enrolled.
Diagnosed CHD patients between the ages of 12-26 will be eligible
Able to provide assent when seen by a pediatric or adult congenital cardiologist provider.
A subset of patients will self-identify as having a disability, and or, be identified with disabilities in their medical or educational records.
Participants to provide assent/consent and complete all study activities in English or Spanish
Providers may decline participation of any patient at their clinical discretion
Parallel
Accessible Care Model Visit
Other interventionAccessible care activities will be performed by the provider following the patient participants enrollment in the study and may be observed by study staff.
Recruitment Interviews
Other interventionA subset of 3-10 patient participants (plus their health care providers) who consent to be reapproached will complete 30-60 minute recruitment interviews.
Participating Patient-Support Person Interviews
Other interventionPatients, and their support person if present, may complete a 30-60 minute structured or unstructured interviews following the education session in a standard clinical encounter. Dyadic interviews will be analyzed 5 at a time over three phases of study until saturation.
Participating Patient-Support Person Surveys
Other interventionParticipants will complete a survey led by the study team member to identify factors hypothesized to affect transition including age, ethnicity, race, education, transportation, distance from home to clinic, other children at home, plans for care in the transition from pediatric to adult care.
Participating Provider Interviews and surveys
Other interventionBefore the end of each wave, a brief (15-20 minute) unstructured interview with the healthcare team will be conducted.
Unstructured and semi-structured interviews
Other interventionSemi-structured interviewing is based on the use of an interview guide. Unstructured interviewing is used both as a form of primary data collection and to develop semi-structured interview or survey questions. It is particularly useful know about the lived experience of a participant. In this case, their experiences of transition education and of the clinical encounter.
Percentage of Uptake of Assigned Components
Assigned components include: surveys returned, clinic observations completed, and interviews completed.
Percentage of Participants who withdrawal from the study
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