“None of It Turned Out the Way She Wanted, So It Left a Hole in Me”: Informal Caregiving at the End of Life in Contexts of Inequity
Bibliographic record
Abstract
Palliative care is undergoing shifts to identify and respond to social and structural inequities. Caregiving in a palliative context is steeped in assumptions that those who provide care are biologically or legally (biolegal) related, well‐resourced, and able to balance the many demands of work and life with caregiving. As families in the Western world change, people are increasingly looking outside their biolegal families for care. This is common among people experiencing homelessness, but little is known about how this translates at the end of life. To address this knowledge gap, we undertook an ethnographic study informed by critical perspectives, integrating social justice and health equity approaches. Over a period of 27 months, approximately 300 h of observation and 44 interviews were conducted with service providers, clients, and caregivers in three Canadian cities. We found that caregiving in contexts of inequity challenges dominant understandings of palliative caregiving. Rather than a biolegal family, people with life‐limiting conditions were found to be accessing care from a constellation of formal and informal caregivers (e.g., friends, neighbors, and spouses). For this analysis, we focus on exploring the experiences of unrelated, informal caregivers, with thematic findings illustrating three main aspects: (1) Relationships and roles in informal caregiving, (2) identifying and perceiving informal caregivers, and (3) biolegal privileging and exclusion of unrelated caregivers. For palliative care to improve the quality of life of people who face inequities and their caregivers, there is a need to better identify, engage, and support all of those who participate in care at the end of life regardless of whether they are biologically or legally related.
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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 | 0.004 | 0.006 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.025 | 0.024 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.002 | 0.004 |
| 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".