"The Word is Not all Rainbows and Butterflies": Facilitating Physical Activity and Quality of Life among Children Living with Cystic Fibrosis and Congenital Heart Disease-toward a Conceptual Framework and Parent-mediated Behavioural Counselling Program
Bibliographic record
Abstract
Although medical advances have improved prognosis for children with cystic fibrosis (CF) and congenital heart disease (CHD), these youth experience poor psycho - social health. Embedded within the Medical Research Council’s framework, the purpose of this Dissertation was to a) examine how CF and CHD children experience physical activity, b) explore parents’ perceptions toward their child’s activity, c) develop a theory of physical activity in childhood chronic diseases, d) develop a physical activity counselling program for youth with CF and their parents, and e) evaluate the program impact on quality of life and physical activity. Study One explored how 14 CF youth experience physical activity. Active and inactive youth were characterized by different experiences, such as a sense of hope or despair. Given the burden of treatment and the fatal nature of the disease, youth negotiated temporal barriers to activity. Study Two explored perceptions toward activity among 29 CF and CHD parents. Parents discussed the benefits and barriers associated with physical activity for both child and self, and underscored the importance of role modeling. By adopting a Grounded Theory approach, the theoretical constructs from Study One and Two were crystallized to develop a theory of physical activity in youth with CF and CHD. This theory was used to develop “CF Chatters:” A Six Week Physical Activity Counselling Program for Youth with CF and their Parents, and the intervention employed behavioural self regulation ii skills. In Study Three, four case families in the CF clinic at the Hospital for Sick Children participated in CF Chatters. Improvements were noted in quality of life and physical activity, and participants described the program as convenient and relevant to their activity concerns. CF Chatters afforded therapeutic benefits to participants. By employing an eclectic qualitative approach, this Doctoral Program has made theoretical and practical contributions toward our understanding of how physical activity is experienced among children living with CF/CHD. The findings support the use of behavioural counselling as an effective and feasible modality for enhancing quality of life and physical activity. This Dissertation calls on clinicians to attend to the activity needs of chronically ill Canadian youth.
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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 | 0.005 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.004 | 0.007 |
| Scholarly communication | 0.004 | 0.005 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.003 | 0.001 |
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".