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 he...
| Main Authors: | , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2022-04-01
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| Series: | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| Subjects: | |
| Online Access: | https://www.ahajournals.org/doi/10.1161/JAHA.121.023572 |
| _version_ | 1797849634564997120 |
|---|---|
| author | Frances Sobierajski Kate Storey Melissa Bird Samantha Anthony Sarah Pol Tara Pidborochynski Diana Balmer‐Minnes Alliya Remtulla Tharani Alyssa Power Michael Khoury Chentel Cunningham Aamir Jeewa Jennifer Conway |
| author_facet | Frances Sobierajski Kate Storey Melissa Bird Samantha Anthony Sarah Pol Tara Pidborochynski Diana Balmer‐Minnes Alliya Remtulla Tharani Alyssa Power Michael Khoury Chentel Cunningham Aamir Jeewa Jennifer Conway |
| author_sort | Frances Sobierajski |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-09T18:47:15Z |
| format | Article |
| id | doaj.art-58e4454aecc747b192760c32df305f97 |
| institution | Directory Open Access Journal |
| issn | 2047-9980 |
| language | English |
| last_indexed | 2024-04-09T18:47:15Z |
| publishDate | 2022-04-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| spelling | doaj.art-58e4454aecc747b192760c32df305f972023-04-10T11:57:33ZengWileyJournal of the American Heart Association: Cardiovascular and Cerebrovascular Disease2047-99802022-04-0111710.1161/JAHA.121.023572Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy LifestyleFrances Sobierajski0Kate Storey1Melissa Bird2Samantha Anthony3Sarah Pol4Tara Pidborochynski5Diana Balmer‐Minnes6Alliya Remtulla Tharani7Alyssa Power8Michael Khoury9Chentel Cunningham10Aamir Jeewa11Jennifer Conway12School of Public Health University of Alberta Edmonton AB CanadaSchool of Public Health University of Alberta Edmonton AB CanadaSchool of Public Health University of Alberta Edmonton AB CanadaFactor‐Inwentash Faculty of Social Work University of Toronto Toronto ON CanadaChild Health Evaluation SciencesThe Hospital for Sick Children Toronto ON CanadaDepartment of Pediatrics Division of Cardiology University of Alberta Edmonton AB CanadaDepartment of Pediatrics Division of Cardiology The Hospital for Sick Children Toronto ON CanadaDepartment of Pediatrics Division of Cardiology The Hospital for Sick Children Toronto ON CanadaDepartment of Pediatrics Division of Cardiology The Hospital for Sick Children Toronto ON CanadaDepartment of Pediatrics Division of Cardiology University of Alberta Edmonton AB CanadaDivision of Pediatric Cardiology Stollery Children’s Hospital Edmonton AB CanadaDepartment of Pediatrics Division of Cardiology The Hospital for Sick Children Toronto ON CanadaDepartment of Pediatrics Division of Cardiology University of Alberta Edmonton AB CanadaBackground 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.https://www.ahajournals.org/doi/10.1161/JAHA.121.023572congenital heart diseasehealth promotionhypertrophic cardiomyopathypediatric cardiologyqualitative research |
| spellingShingle | Frances Sobierajski Kate Storey Melissa Bird Samantha Anthony Sarah Pol Tara Pidborochynski Diana Balmer‐Minnes Alliya Remtulla Tharani Alyssa Power Michael Khoury Chentel Cunningham Aamir Jeewa Jennifer Conway Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease congenital heart disease health promotion hypertrophic cardiomyopathy pediatric cardiology qualitative research |
| title | Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle |
| title_full | Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle |
| title_fullStr | Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle |
| title_full_unstemmed | Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle |
| title_short | Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle |
| title_sort | use of photovoice to explore pediatric patients with hypertrophic cardiomyopathy and their parents perceptions of a heart healthy lifestyle |
| topic | congenital heart disease health promotion hypertrophic cardiomyopathy pediatric cardiology qualitative research |
| url | https://www.ahajournals.org/doi/10.1161/JAHA.121.023572 |
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