Informal Caregiving for People With Life-Limiting Illness: Exploring the Knowledge Gaps
Bibliographic record
Abstract
Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O’Malley’s framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.021 | 0.057 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.002 |
| Bibliometrics | 0.014 | 0.014 |
| Science and technology studies | 0.003 | 0.003 |
| Scholarly communication | 0.007 | 0.008 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.003 | 0.003 |
| 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".