The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study
Bibliographic record
Abstract
Abstract Aims and objectives This study aimed to explore the day-to-day experiences of caregivers who are caring for children with Osteogenesis Imperfecta (OI). Background OI is a rare genetic condition known to cause bone fragility. Family caregivers, such as parents, of children with OI play an important role in helping these children live well at home. Design The design was qualitative description. Methods A qualitative descriptive study was conducted which adheres to the COREQ guidelines. Adult caregivers (n=18) of children with OI were recruited at a children’s hospital in Montréal, Canada to participate in individual interviews. The interviews were transcribed verbatim and inductively thematically analysed. Results The following caregiving themes were identified in these interviews: regular day-to-day caregiving activities, including morning routines, evening routines, and the facilitation of their child’s mobilization; periods that made the caregiving routine more challenging, such as fractures, surgeries, and pain; and the long-term strategies caregivers developed to support day-to-day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite. Conclusions The results showcase what being a caregiver for a child with OI involves on a day-to-day basis. Relevance to clinical practice The recommendations include suggestions for future clinical, policy, and research endeavours to develop better policies and interventions to support the unique needs of family caregivers of children with OI. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.
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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 | 0.002 | 0.001 |
| 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".