Exploring the experiences of family caregivers with low income accessing health care services for children with inborn errors of metabolism
Bibliographic record
Abstract
Inborn errors of metabolism (IEMs) have been shown to impact the wellbeing of family caregivers, with more challenges experienced by families with lower income. The main objective of this study was to gain understanding of the experiences of family caregivers with low income accessing diagnosis-related care for their children with IEMs in Manitoba. Secondary objectives included: (1) To explore the factors that facilitate or cause difficulties accessing IEM-related care, (2) To explore the perceived impact of the COVID-19 pandemic on family caregivers’ experiences of accessing IEM-related care, and (3) To compare the experiences of accessing IEM-related care for urban and rural families. This mixed methods study involved the distribution of a survey to 98 family caregivers of children with IEMs who access care in Manitoba. Additionally, we conducted eight semi-structured individual interviews with survey respondents to further explore the experiences of these family caregivers. These qualitative interviews were transcribed, coded, and analyzed to identify themes and make recommendations to improve access to care. Twenty-five surveys were returned, and descriptive statistics are presented on the experiences of these study participants. Additionally, qualitative analysis revealed that participants found caregiving was overwhelming and consuming especially throughout the first year following a positive newborn screen. Participants expressed that they were lacking psychosocial support as well as assistance with navigating financial resources. Participants also recognized many costs of care, shared experiences outlining difficulties in accessing care, and described changes in care due to the COVID-19 pandemic. This research reveals the unmet needs of family caregivers of children with IEMs in Manitoba, especially in the psychosocial and financial domains. Study findings will enable genetic counsellors to advocate for equitable access to metabolic care in Manitoba and beyond.
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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 | 0.003 | 0.008 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.008 | 0.004 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.004 |
| 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".