A convergent parallel mixed methods study of the end-of-life care experiences of people with intellectual disability in Ireland: Lessons learned from IDS TILDA.
Bibliographic record
Abstract
Palliative care is a vital intervention to relieve the suffering of people living with, and dying from, life-limiting conditions. However, people with an intellectual disability experience inequity in their access to, and experience of, palliative care. Progress in addressing care deficits has been slowed by the fact that the evidence-base is largely limited to small scale, descriptive studies. The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) is a longitudinal study studying the circumstances of adults with an intellectual disability aged 40 years or older who are resident in Ireland. It offers opportunity to study palliative care experience in a rigorous manner. The IDS-TILDA End-of-Life Care study is a convergent parallel mixed methods study situated within IDS-TILDA whose purpose is to understand the end-of-life care experiences and service utilisation of people with an intellectual disability in Ireland from the perspective of bereaved caregivers. Data is collected using survey and interview methods. Findings demonstrate that decedents were reported by carers as experiencing need in physical, emotional, psychosocial, spiritual, communication, decision-making, continuity of care and disability-related domains. They emphasised the importance of including family, intellectual disability staff and peers within the 'unit' of palliative care provision. A conceptual model of the Intellectual Disability Palliative Care Ecosystem was developed and tested and provided comprehensive insight into factors influencing need and complexity. Strengths in palliative care provision were observed; 43.6% of the population accessed specialist palliative care, quality of care was rated highly and 50.7% died in their usual place of care. Areas of deficit warranting attention were observed; they included addressing communication, spirituality, support for peers and staff. The study provides a comprehensive understanding of the range of factors influencing whether people with an intellectual disability 'live well' with a life-limiting condition and experience a 'good death'. Future waves of IDS-TILDA offer opportunity to understand which combinations of services and support are most strongly associated with cost-effectiveness and benefit.
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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 | 0.034 | 0.033 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.003 | 0.003 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.001 |
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".