THE LIVED EXPERIENCES OF DEVELOPMENTAL DISABILITY CAREGIVERS AND SERVICE PROVIDERS IN ONTARIO
Bibliographic record
Abstract
Providing care for children with developmental disabilities (CwDD) is complex and is a life-long journey. Caregivers (CGs) of CwDD experience higher levels of stress, declining mental and physical health, feelings of isolation, diminished financial outcomes, and an overall lower quality of life. Additionally, they often face marginalization and numerous barriers when trying to access funding and supports. This study explored the experiences of CGs of CwDD in the context of Ontario and included the perspectives of CGs and service providers (SPs) to investigate the role the government played in CGs ability to provide adequate care.\nTwenty participants were recruited through purposeful sampling, word of mouth, and social media posts. The research was guided by interpretive phenomenology and a transformative worldview. Data was collected through background questionnaires, one-on-one semi-structured interviews, field notes, and member checks. Interviews were thematically analyzed and triangulated three ways.\nTwo themes emerged which portrayed participant perspectives of the experience of caring for CwDD and the complexity of navigating how to best advocate for and support their CwDD: “Paradoxical” and “The Voice, The Choice, and The Option is Not There”. The first theme discussed the contradictory nature of caregiving with respect to time, family, and emotions. The second theme elaborated on the hardships CGs face while trying to live lives of best practice when caring for their child(ren).\nThis study contributed to previous research that discussed the barriers that CGs and CwDD face in society as well as when looking for supports. It was evident policymakers and allied professionals were putting up “red tape” when CGs were searching for supports. While CGs have come to the table to advocate and share their needs, their voices are not being heard.
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 | 0.001 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.015 | 0.006 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.001 | 0.004 |
| 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".