1239 ‘I never thought I’d have to stand there and make that decision.’ Journey-mapping caregivers’ decisions
Notice bibliographique
Résumé
Aim To map the decision-making journeys of caregivers of people living with dementia, as a guide towards better caregiver support. Background Family caregivers have a crucial role as substitute decision makers, tasked with honouring personal and medical wishes for persons living with dementia (PLwD). However, they can feel decisional uncertainty, unsupported, unrecognized as partners-in-care, and unaware of dementia trajectories. Methods Caregivers and community organizations in Alberta, Canada were engaged as study team partners throughout the project. A qualitative study was undertaken to map caregivers’ decision-making journeys. Semi-structured, one-to-one interviews were conducted with 25 caregivers recruited through community newsletters. We utilized graphic recording of the interviews for thematic analysis, alongside researcher line-by-line coding of verbatim transcripts, to develop a summary map of caregivers’ journeys in decision-making and decision-supports. This was then shared and refined through 3 focus groups (9 participants) and presented at a World Café with 5 caregivers and 20 healthcare providers and dementia organization stakeholders to explore implementation strategies. Results Caregivers of PLWD struggle with decisions in seven-key areas. The journey map developed from their experiences depicts these as : ‘Getting a diagnosis’, ‘Financial, legal and understanding your person’s wishes’, ‘Driving’, ‘ Day-to-day decisions’, Taking care of yourself, ‘Where to live?’ and ‘End of life Care Decisions,’ Caregivers often described themselves as being ‘lucky’ to happen upon information to help them make decisions through word-of-mouth or through their own advocating. Areas of support needed include emotional support, guidance on ethical decisions, knowing which future decisions to prepare for and finding resources. Available local resources were added to each decision map. Discussion Caregivers are struggling to make decisions for their PLwD. Our map of a caregiver’s journey in decision-making illustrates common decisions points and provides emotional, practical and informational content to support them. Unique Contribution Graphic recording is a novel, accessible method for sharing research data with patient partners and stakeholders. Iterative development of a generic journey map from participants’ varied experiences created an intuitive, low text burden resource for caregivers to use alone, together with PLwD, or other family and healthcare providers. Implications ‘Decision Roadmaps’ can provide an engaging, rapidly accessible, visual overview of the broad advance care planning decisions people may face. This dementia-specific map displays locally available resources. Stakeholder organizations have integrated the map into their services and used it to identify gaps in the times and settings when caregivers most need support.
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 | 0,003 | 0,008 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,007 | 0,004 |
| Communication savante | 0,005 | 0,004 |
| Science ouverte | 0,001 | 0,005 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,021 | 0,004 |
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 ».