Information provision to caregivers of children with rare dermatological disorders: an international multimethod qualitative study
Bibliographic record
Abstract
OBJECTIVE: To identify service-provided information needs among dermatological caregivers of patients living with ichthyosis. DESIGN: This is the first online international qualitative study to explore caregiver-reported service-provided information needs, using transnational focus groups (n=6), individual interviews (n=7) and in-depth emails (n=5). NVivo facilitated the coding process and Framework Analysis was applied. SETTING: Caregivers were recruited through two online ichthyosis support groups and resided across 10 countries and 5 continents (USA, Greece, Netherlands, Ireland, UK, Canada, India, Philippines, Switzerland and Australia). PARTICIPANTS: A purposive sample of 8 male and 31 female caregivers participated (mean age range 35-44 years). Participants were aged 18 years old or older and fluent in English. Participants cared for a total of 46 children (1:1 ratio for child gender and clinical classification of disease severity). Participants represented all stages along the care continuum, including neonatal intensive care unit and bereavement. RESULTS: This study advances understanding of how to optimise information-sharing across hospital, community and online settings at three points along the care continuum (screening, active caregiving and survivorship). Timely, personalised and appropriate service-provided information support was considered key in influencing the self-efficacy, coping ability and psychosocial well-being of both the caregiver and their child. The modification of information support, through feedback loops, can result in a different bidirectional psychosocial impact for the caregiver and the affected child. CONCLUSION: Our findings provide a novel insight into how existing gaps between caregiver expectations and needs, in terms of information support, can be addressed. As information support is a modifiable factor, improved healthcare education around these themes should become an urgent public health matter to inform future educational and psychosocial interventions.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".