97 Advance Care Planning Conversations: Perspectives from Families of Children with Cerebral Palsy
Notice bibliographique
Résumé
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.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,009 | 0,025 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,019 | 0,006 |
| Communication savante | 0,006 | 0,005 |
| Science ouverte | 0,002 | 0,007 |
| Intégrité de la recherche | 0,003 | 0,006 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».