Evaluating Burden of Care for Caregivers of Children with Intestinal Failure on Long-term Parenteral Nutrition
Bibliographic record
Abstract
The objective of this thesis was to evaluate burden of care for caregivers of children with intestinal failure (IF) on long-term parenteral nutrition (PN). This was completed with two comprehensive reviews of IF and caregiver burden and three projects that add knowledge to the current literature. Pediatric IF is a complicated chronic medical condition. There have been considerable advancements over the past two decades resulting in improved survival rates. The majority of care after their primary hospitalization takes place in the home setting provided by family caregivers. There are significant gaps in the understanding of the impact of this care on caregivers in order to identify opportunities for interventions and supports. The first project qualitatively described the experiences of caregivers of children with IF describing common themes identified related to caregiving being a 24/7 commitment, facing the constant risk of death, chronic illness creating difficult feelings and emotions and adapting to chronic illness as a family. Caregivers also quantified the volume of care being provided to their children within the home setting. The second project evaluated stress, anxiety, depression, and health-related quality of life (HRQoL) in caregivers of children with IF compared to caregivers of healthy children. The results demonstrated that IF caregivers had increased levels of stress, anxiety, and depression and lower HRQoL. The final project evaluated sleep in caregivers of children with IF compared to caregivers of healthy children. This study demonstrated caregivers of children with IF achieve significantly less sleep than their peers. In summary, there are multifaceted impacts of providing a significant volume of care for caregivers of children with IF. Caregivers provide a tremendous amount of care to ensure their children’s health remains optimized and highlights the need for ongoing advocacy to ensure adequate supports for respite and mental health supports are put into place.
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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 | 0.023 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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".