Exploration of the Lived Experiences and Needs of Individuals with Adult-Diagnosed Cystic Fibrosis
Bibliographic record
Abstract
Background: Most cases of cystic fibrosis (CF) are diagnosed in infancy, however rates of adult-diagnosed CF are increasing with 5-10% of CF cases being diagnosed in adulthood [1]. Our limited understanding of this subset of the CF population is based on dated literature [2-3] and an up-to date understanding of the experiences and needs of those diagnosed in adulthood is required in order to develop age-appropriate supports to navigate the disease [4]. The purpose of present study was to examine the lived experiences and needs of those diagnosed with CF in adulthood from multiple vantage points (i.e., those with CF and CF health care providers). Methods: A qualitative research design was used. Participants (n = 16) included adults with CF (n = 8, Mage = 41.71, SD = 14.47), and interdisciplinary CF health care providers (n = 8, Mage = 46.29, SD = 7.93) recruited from CF clinics and chapters in Western Canada. Participants completed a brief demographic questionnaire and a semi-structured interview. Individual interviews ranged from 30-60 minutes in length. Interview questions included general introductory questions about informational and service needs, as well as specific questions about the benefits and drawbacks of an Internet-based resource. All interviews were audio-recorded and transcribed verbatim. Results: A thematic content analysis was completed, and five major themes were uncovered: (1) CF information needs (i.e., limited information available, limited understanding of CF); (2) challenges of having CF (i.e., diagnosis challenges, treatment challenges, social challenges); (3) emotions related to CF and coping (i.e., feeling overwhelmed, angry, worried, guilty); (4) health service needs (i.e., access, physical health, mental health); (5) online resource considerations (i.e., benefits, drawbacks, key components). Conclusions: The results highlight that those diagnosed with CF in adulthood require tailored information in crucial areas (i.e., disease knowledge, challenges, emotions, coping strategies, resources). The results also indicate that individuals with adult-diagnosed CF are in favor of information provision via an Internet-delivered resource. Information gathered from the study will be employed to inform the development of a tailored resource to address information and support needs. Acknowledgements: Supported by the Social Sciences and Humanities Research Council (SSHRC) and the SK Centre for Patient-Oriented Research (SCPOR).
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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 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.006 | 0.006 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.001 | 0.006 |
| Research integrity | 0.001 | 0.002 |
| 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".