TY - JOUR
T1 - Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents’ Perceptions of a Heart-Healthy Lifestyle
AU - Sobierajski, Frances
AU - Storey, Kate
AU - Bird, Melissa
AU - Anthony, Samantha
AU - Pol, Sarah
AU - Pidborochynski, Tara
AU - Balmer-Minnes, Diana
AU - Tharani, Alliya Remtulla
AU - Power, Alyssa
AU - Khoury, Michael
AU - Cunningham, Chentel
AU - Jeewa, Aamir
AU - Conway, Jennifer
N1 - Funding Information:
This project was supported by the Children’s Cardiomyopathy Foundation, the Labatt Family Heart Centre, and the generous support of the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute.
Publisher Copyright:
© 2022 The Authors.
PY - 2022/4/5
Y1 - 2022/4/5
N2 - 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.
AB - 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.
KW - congenital heart disease
KW - health promotion
KW - hypertrophic cardiomyopathy
KW - pediatric cardiology
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85128245511&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85128245511&partnerID=8YFLogxK
U2 - 10.1161/JAHA.121.023572
DO - 10.1161/JAHA.121.023572
M3 - Article
C2 - 35301849
AN - SCOPUS:85128245511
SN - 2047-9980
VL - 11
JO - Journal of the American Heart Association
JF - Journal of the American Heart Association
IS - 7
M1 - e023572
ER -