Advance planning for healthcare and research participation: law, ethics and practice
Notice bibliographique
Résumé
This thesis focuses on advance planning for health-related matters, including medical care and participation in research. It brings interdisciplinary attention to the legal and ethical frameworks that govern how people can plan for future incapacity and investigates how the rights to plan ahead are acted upon and supported in practice. Dementia is a particular focus of this thesis as it is a leading cause of cognitive impairment among older people, and advance planning for incapacity is considered part of good dementia care. Advance care planning (ACP) can improve healthcare experiences and end-of-life outcomes, while advance research planning can help to support the appropriate inclusion of people with cognitive impairment in research studies. Papers 1–3 focus on advance planning for medical care, with attention to the under-examined role of lawyers in assisting older clients with ACP. Paper 1 provides a literature review and considers how collaboration between health and legal professionals can strengthen ACP. Paper 2 presents a framework for action to build connections between these typically “siloed” professions. Paper 3 presents findings from a survey of legal practitioners on their practices and experiences in advising clients on ACP. Lawyers perceive this activity as part of their professional role, but report gaps in their knowledge of health system policies and procedures relevant to ACP. These findings support the need for collaborative ACP strategies that involve the legal and health sectors. Papers 4–7 focus on advance research planning and the inclusion of older people with cognitive impairment in research studies. The under-representation of people with dementia in research limits the evidence base to inform advances in treatment and care for this population. The principles and processes that undergird ACP can be applied to planning for involvement in research activities during future periods of incapacity, allowing greater representation of people with dementia in research. Paper 4 examines the Australian ethical and legal context for inclusion of people with dementia in research. Papers 5–7 report on the results of surveys exploring the attitudes of older adults and researchers toward research involving people with dementia. Paper 5 reveals positive attitudes among older adults to involvement in a wide range of research activities in the event of future incapacity, and to making an advance research directive to document their preferences for future research participation. Papers 6 and 7 report on a national survey of Australian dementia researchers, revealing persistent ethical, legal and practical barriers to involving people who lack decisional capacity in research, but positive views on the benefits of advance research planning as a strategy to support inclusion. The thesis includes studies completed in Australia and Canada, two countries with ageing populations and similar health and legal systems. The work advances knowledge to inform strategies to build collaboration between the health and legal sectors, strengthen professional practices, enable older adults to act on their rights to plan for future incapacity and overcome barriers to research participation for people living with reduced decisional capacity.
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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,003 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,001 | 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 tête enseignante, 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 ».