Perceived benefits from peer‐support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme
Bibliographic record
Abstract
RATIONALE: Family caregivers of persons with amyotrophic lateral sclerosis and cognitive and/or behavioural impairments (PALS/CIs) experience various challenges and needs, including emotional and practical support from peers. Various forms of peer-support have shown different strengths and weaknesses; however, little is known about how family caregivers of PALS/CIs interact with and perceive virtual face-to-face peer-support. AIMS AND OBJECTIVES: The aim of this study was to understand how caregivers of PALS/CIs interact with and perceive virtual face-to-face peer-support in a palliative rehabilitation programme designed to promote targeted palliative rehabilitation initiatives for caregivers of PALS/CIs. METHOD: A qualitative design using participant observations of 17 recorded virtual group-facilitated meetings from two rounds of a 4-month intervention was performed. The Medical Research Council framework, the inductive interpretive description methodology and the theoretical framework of Sense of Coherence guided the study. Nineteen participants, divided into four groups, were included. RESULTS: Three themes emerged: 'Relating my situation to others', 'Making room for forbidden thoughts' and 'Longing for normalcy'. The themes reflected the various ways participants interacted in online group meetings and how the interactions evolved around practical, emotional and forbidden thoughts. Sharing personal and sorrowful concerns and frustrations engendered feelings of trust and a sense of belonging, which empowered the participants to address their genuine wish and longing for normalcy with all the trivialities of which ALS/CIs had robbed them. CONCLUSION: Virtual face-to-face peer-support can enable caregivers of PALS/CIs to share experiences of everyday life challenges that cannot always be shared elsewhere. Being able to relate to and learn from other's experiences alleviated feelings of loneliness, frustration, and concerns and thereby enhanced comprehensibility, manageability and meaningfulness. Online palliative rehabilitation interventions should provide an opportunity for caregivers to meet regularly in interactive group meetings. Familiarization takes time online and is necessary to improve their sense of feeling safe to share their deepest thoughts. Such group interventions, facilitated by trained healthcare professionals, offer a means to support dynamic group interactions and discussion of sensitive topics.
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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 | 0.013 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.002 |
| 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".