Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart‐Healthy Lifestyle
Bibliographic record
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".