(P084) TIMELINE MAPPING CONGENITAL HEART DISEASE: A QUALITATIVE STUDY OF PARENTAL AND CLINICAL CARE PROVIDER EXPERIENCES

Background: Families of children with CHD experience stress as they navigate learning about and managing their child’s condition. The journey from diagnosis to adulthood is challenging for parents, who juggle managing finances, travelling for care, and the emotional burden of caregiving. Parents are encouraged to introduce physical activity (PA) to their children, as it is associated with improved cardio-metabolic health and is a prognostic tool for clinicians. Clinicians must understand the challenges parents face to best support them. This study explores how those with CHD and their families are influenced by major life events and experiences with the medical system, to help elucidate under-researched areas of the patient experience, including when families might be most amenable to PA education.

METHODS AND RESULTS: This study utilizes life-course interviews and timeline mapping – a method which involves creating visual representations of key events along patient journeys. Parents/guardians of children living with CHD were recruited through patient advocacy groups and research networks. Health professionals involved in care provision for children with CHD in British Columbia (including pediatric cardiologists, nurses, exercise physiologists, social workers and echocardiography technicians) were recruited from BC Children’s Hospital (BCCH). Participants completed semi-structured interviews, either via Zoom or in person, and demographic surveys. For parent interviews, timeline maps of each patient journey were created. Interview transcripts were analysed using reflexive thematic analysis.

Twelve parents (92% mothers) of 11 children (46% female; average age 11.6±9.9yrs) who received care at BCCH, with CHD diagnoses spanning from mild to complex, were interviewed. Additionally, 11 clinicians (45% pediatric cardiologists, 45% nurses, 10% other; 55% identified as women), with an average of 20.8±10.9 years of experience, participated. Two key themes, ‘The Primary Caregiver Experience’ and ‘PA… More Than Just Fun’, were identified. Sub-themes in ‘The Primary Caregiver Experience’ explored challenges of education and communication, limitations of living away from BCCH, traumatic experiences, and the need for caregiver support. Sub-themes within ‘PA… More Than Just Fun’ covered different approaches to timing PA counseling, the power of providing role models, barriers to success, and tools for improvement.

Conclusion: This study offers insight into the complexity of caring for children with CHD, highlighting the need for changes to how and when information is communicated to parents, and the introduction of support mechanisms to help process trauma and cope with stress. The findings can inform healthcare professionals, advocacy groups, and government agencies on providing education, emotional support, resources, and PA counselling more effectively.