Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle

BACKGROUND: Heart‐healthy lifestyles promote lifelong cardiovascular health. However, patients with hypertrophic cardiomyopathy are often advised to avoid strenuous exercise because of the risk of sudden cardiac death. Given these restrictions, this study explored youth and parent perceptions of a heart‐healthy lifestyle and the barriers and facilitators to this lifestyle. METHODS AND RESULTS: Youth and parents were purposefully recruited at 2 Canadian hospitals for this photovoice project. Participants were given cameras and took pictures of everyday heart‐healthy or heart‐unhealthy choices. Photos were discussed during one‐on‐one qualitative interviews with youth and parents separately to understand the photos’ meaning and significance. Inductive descriptive thematic analysis was employed. A total of 16 youth (median age, 14.4 years [range, 10.5–17.7 years]; 63% boys) and 16 parents (100% women) participated. A total of 15 youth were activity restricted. Data analysis revealed 7 categories organized into perceptions of healthy living (health is holistic and individualized) and factors influencing engagement in healthy living (self‐awareness, ownership and autonomy, feeling restricted and peer pressure, support from parents, and support from the cardiologist). Participants had a complex understanding of health and discussed the importance of physical, mental, and social well‐being. Youth used self‐awareness and taking responsibility as facilitators of healthy living. Healthy living was shaped by peers, parent role‐modeling, and cardiologist recommendations. CONCLUSIONS: This study depicts the realities for youth with hypertrophic cardiomyopathy and can be used to inform the development of responsive interventions. Holistic, patient‐specific interventions may be more successful, and strategies such as shared decision making may be important to promote self‐awareness and autonomy.