97 Advance Care Planning Conversations: Perspectives from Families of Children with Cerebral Palsy
Bibliographic record
Abstract
Advance Care Planning (ACP) helps parents of children with chronic health conditions understand their child’s diagnosis and prognosis and use that knowledge to anticipate and discuss future health and developmental states. Although the Canadian Paediatric Society views early discussions about ACP as the standard of care for any child with a chronic life-threatening condition, ACP has not been routinely integrated into the care of children with cerebral palsy (CP). To explore attitudes, knowledge, preferences and willingness to engage in ACP among parents/primary caregivers of individuals with CP. An online survey was developed through rigorous consultation with parent and community leaders experienced in CP. The survey was advertised with an electronic link distributed in English, via email, social media tools, and websites, to parents who were members of 3 Canadian CP-focused community organizations. Multivariable logistic regression, descriptive statistics and content analysis were used to analyze the data. Surveys were initiated by 139 respondents however 53 were excluded due to incomplete data (less than 50% of questions completed). Eighty-six respondents were included for analysis though not every parent chose to complete each question. Most respondents (67/86;78%) were mothers. The children with CP ranged in age from 1–54 years and represented all 5 Gross Motor Function Classification System (GMFCS) levels. Many respondents (57/71;80%) reported that they understood their child’s overall medical and developmental condition very well, yet fewer expressed the same level of understanding of possible future health care issues (38/71;54%) or long-term prognosis and life expectancy (33/71;46%). Most respondents stated that ACP is a relevant topic that they would like to discuss with their child’s health care provider (HCP) (44/56;79%) and indicated that most components of ACP were relevant to their child: future developmental needs (50/56:89%), participation/inclusion (50/55;91%), caregiver education/support/financial planning (41/50;82%), possible future health/medical needs (43/49;88%), and preparation in case of severe/life-threatening illness (26/44;59%). Regardless of GMFCS level many caregivers felt that preparation for severe illness was an important topic to discuss with their HCP (17/26;65%) although only a minority had had these discussions (3/25;12%). Although many parents had thought about their child’s risk of dying (29/45;64%) very few had spoken about it with their child’s HCP (9/29;31%). Parents of children with CP view ACP as relevant and important. However, few parents have had such discussion with their child’s HCP. HCPs who care for children with CP would benefit from being aware of the many aspects of ACP relevant to families.
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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 | 0.009 | 0.025 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.019 | 0.006 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.002 | 0.007 |
| Research integrity | 0.003 | 0.006 |
| Insufficient payload (model declined to judge) | 0.005 | 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".