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

Author:

Sobierajski Frances1,Storey Kate1,Bird Melissa1,Anthony Samantha23,Pol Sarah3ORCID,Pidborochynski Tara4ORCID,Balmer‐Minnes Diana5,Tharani Alliya Remtulla5,Power Alyssa5,Khoury Michael46ORCID,Cunningham Chentel6ORCID,Jeewa Aamir57,Conway Jennifer46

Affiliation:

1. School of Public Health University of Alberta Edmonton AB Canada

2. Factor‐Inwentash Faculty of Social Work University of Toronto Toronto ON Canada

3. Child Health Evaluation SciencesThe Hospital for Sick Children Toronto ON Canada

4. Department of Pediatrics Division of Cardiology University of Alberta Edmonton AB Canada

5. Department of Pediatrics Division of Cardiology The Hospital for Sick Children Toronto ON Canada

6. Division of Pediatric Cardiology Stollery Children’s Hospital Edmonton AB Canada

7. Department of Paediatrics University of Toronto Toronto ON Canada

Abstract

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.

Publisher

Ovid Technologies (Wolters Kluwer Health)

Subject

Cardiology and Cardiovascular Medicine

Cited by 4 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

1. Perceptions of exercise behavior and well-being in anomalous aortic origin of coronary arteries;European Journal of Pediatrics;2024-08-19

2. Being Participatory Through Photo-Based Images;Being Participatory: Researching with Children and Young People;2024

3. Exercise and Sports Participation in Children with Cardiomyopathy: A Review;Current Treatment Options in Cardiovascular Medicine;2023-09-15

4. The cardiac preparticipation sports evaluation;Current Opinion in Pediatrics;2023-08-08

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