Supporting parental caregivers of children living with life‐threatening or life‐limiting illnesses: A Delphi study
Bibliographic record
Abstract
BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. PURPOSE: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention. DESIGN AND METHODS: A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness. RESULTS: Sixty-eight experts consisting of parental caregivers of children diagnosed with life-limiting or life-threatening illnesses and those who care for them (community members, nurses, social workers, and physicians) were recruited to participate. Through three rounds of survey questions, response rates ranged from 92-97%. A consensus revealed eight major themes that support parental hope: Organize Basic Needs; Connect with Others; Prioritize Self-care; Obtain Meaningful Information; Take Things Day by Day; Advocate for Parental Participation; Manifest Positivity; and Celebrate Milestones. PRACTICE IMPLICATIONS: This study identified a wide variety of psychosocial needs for parental caregivers. Results also offered direction for a theory-based hope intervention while highlighting the need for additional research in this area. These results will provide the foundation for a booklet parents can work through in their journey of caring for a child with a life-limiting or life-threatening illness.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".