Mothers' Experiences of the Care Provided to their Child with a Life-Limiting Illness
Bibliographic record
Abstract
The purpose of this study was to examine mothers' experiences of the care provided to their child with a life-limiting illness. This study explored mothers' experiences in finding, accessing, and providing care for their children and their perceptions of gaps, barriers, and strengths in care for their children. As a secondary focus, this study looked at how these mothers understand pediatric palliative care. A qualitative descriptive design was used to explore the experiences of six mothers caring for children with life-limiting illnesses in urban areas of Ontario and Quebec. Mothers shared their experiences through in-person interviews. Findings revealed that the experience of caring for a child with a life-limiting illness was overwhelming in nature for mothers in terms of finding, accessing, and providing care. Mothers expressed the overwhelming nature of the experience around three themes: (1) realizing the strengths and barriers of the health care system, (2) long-term caregiving and coping, and (3) advocacy. Experiencing the gaps and barriers and having to advocate for their own children led mothers to want to make change and give back so that other families would not have to face the same gaps and barriers as they had. Findings also revealed that mothers had diverse understandings of pediatric palliative care that had developed through their understanding of their own child's illness and lifespan; adult palliative care; professionals' communication about pediatric palliative care; and other experiences with pediatric palliative care, such as interacting with other families with a child with a life-limiting illnesses. Recommendations for change are made and areas for future research are identified.
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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 | 0.012 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.005 | 0.003 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| 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".