Same Storm, Different Boats: A Qualitative Study of the Lived Experiences And Needs Of Parent Caregivers Of Children With Cystic Fibrosis
Bibliographic record
Abstract
Background: Approximately 1,500 children in Canada are diagnosed with cystic fibrosis (CF) 1 . A childhood CF diagnosis has substantial implications for the mental health of parent caregivers (referred to as parents herein), who report elevated levels of emotional distress, stress, depression, and anxiety 2 . Tailored, psychosocial resources for this population are scarce and barriers exist to accessing community mental health services 3 . Internet-delivered programs present a promising mode of mental health resource delivery for this specialized population, but none are available in Canada. To inform the development of such a resource, the present study examined the lived experiences and information and resource needs of parents of children with CF. There were no established hypotheses due to the exploratory nature of the study. Methods: Twenty-three parents ( M age = 45.65, SD = 8.91) in Canada participated in the study. Each participant completed a consent form, demographic questionnaires, and a semi-structured interview. All interviews were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Results: Six major themes were generated: (1) challenges, (2) needs, (3) emotions and coping, (4) healthcare experiences, (5) unique parenting experiences, and (6) Internet-delivered resource considerations. Subthemes were also generated for each major theme. Conclusions: These findings highlight the unique lived experiences and needs of parents of children with CF. The results indicate that parents would value an Internet-delivered resource that provides tailored information about several topics. The information gained from this study will be utilized to develop an accessible, tailored, Internet-delivered resource for parents of children with CF.
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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 | 0.008 | 0.016 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.012 | 0.009 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.002 | 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".