Osteogenesis imperfecta and the family: A qualitative analysis of the experiences of family and caregivers.
Bibliographic record
Abstract
INTRODUCTION: Osteogenesis imperfecta (OI) describes a group of rare, heritable bone disorders causing bone fragility, tendency to fracture with minimal trauma, and chronic pain due to abnormal collagen synthesis. Limited research exists on the psychosocial impact of OI during childhood on caregivers and families. PURPOSE: This study aimed to understand caregiver experiences, existing social support provided for families affected by OI, and the impact of OI on family life. METHOD: Thirteen caregivers of individuals with OI participated in semistructured interviews. Researchers coded, abstracted, and analyzed qualitative data to develop themes on the psychosocial impact of OI on the family unit. RESULTS: Analysis yielded four themes: (a) encountering difficult experiences during diagnosis of OI, (b) caregiver well-being and coping, (c) broad family impact, and (d) the existence and further need for social support. DISCUSSION: Findings have implications for child and caregiver well-being and health care professionals during diagnosis and emphasize the need for social support for families affected by OI. Future research should engage a more diverse (in terms of ethnoracial demographics and family structures) sample and utilize quantitative analyses to complement the present understanding of the relationship between OI and family well-being. (PsycInfo Database Record (c) 2025 APA, all rights reserved).
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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 | 0.007 | 0.013 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.008 | 0.005 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| 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".