Patients’ perceptions of family engagement in health information practices: influences on the self-management of asthma
Bibliographic record
Abstract
Background Involving patients and family members in care is a growing area of research and practice as more family members express the desire to participate as constituents of the patient care team. In this study, we aim to understand patients’ perceptions of family participation in asthma self-management, particularly concerning health information seeking behavior.Methods Semistructured interviews with 35 patients with asthma were conducted at the Immunoallergology wards of both a central public hospital and a private hospital in Porto, Portugal. Data were collected through the McGill Illness Narrative Interview. Interviews were thematically analyzed as case-based and process tracing-oriented.Results Asthma in the family history appeared to be a major determinant of two profiles of patients with asthma: Group 1 (n = 23/35) patients with asthma who are ‘nonseekers’ of health information and for whom asthma ispart of their family histories and who easily adapt to illness in their daily lives, although they had difficulties controlling their asthma, given the disease severity; and Group 2 (n =12/35) patients with asthma who are ‘seekers’ and do not have family histories of asthma and whose experiences of illness brought limitations to their daily lives, raising questions of bafflement (Why me?) and control (What can be done?).Conclusions Asthma patients with family histories tend to be more accepting of their diagnosis but require basic information for daily management. Asthma patients without family histories tend to deny the condition and require more emotional support to cope with it. The family should be considered as integral to the processes of knowledge-sharing and decision-making, and how families experience the disease should be taken into account by health professionals when offering a treatment plan.
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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 | 0.014 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 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".