A Multi-Modal Assessment of Support Use Among Multiple Sclerosis Family Caregivers in Canada
Notice bibliographique
Résumé
Family caregivers of individuals living with multiple sclerosis (MS) are essential to the wellbeing and independence of their care recipients. Despite the prevalence and importance of MS family caregivers, many struggle to maintain their wellbeing while also meeting demands for care. Most of the MS caregiving literature has focused on negative outcomes associated with the caregiving role; however, MS family caregivers also report benefits to caregiving that remain poorly understood. Resources are deeply implicated in salutogenic paradigms of health and could be used promote the wellbeing of caregivers through the creation of supportive environments. However, little is known about the current state of supports for MS family caregivers in Canada. Thus, this dissertation sought to establish a salutogenic paradigm for supporting MS family caregivers by identifying current caregiving resources and resource use dynamics. Included in this dissertation are three studies to achieve this goal. The first study of this dissertation examined the current landscape of caregiving resources in Canada as experience by family caregivers via an environmental scan of digital supports. This study identified mostly informational resources authored by provincial caregiving organizations. Findings highlighted a lack of diversity in the target audiences of current digital caregiving resources and a dearth of interactive and practical supports. The second study of this dissertation examined the content and feature priorities for a novel digital resource among MS family caregivers and service providers via online survey. Participants prioritized the ease of use of a future digital resource as a top priority. A wide range of content priorities were identified, with the most frequent being information on MS and its treatment. Findings emphasized the potential of a digital resource to provide a range of support to MS family caregivers and centred the importance of user testing to ensure the usability and uptake of the resource. The third study of this dissertation presented in Chapters 4 and 5, investigated current support structures and support use dynamics of MS family caregivers via online survey and semi-structured interviews. The content of support structures reported by caregivers highlighted the importance of natural support networks, including the care recipient. Levels of resilience and neuroticism were associated with the size of support structures. Through interviews, caregivers identified that cycles of resilience were mediated by supports and reported key facilitators and barriers to support use. Findings demonstrated the complex decision-making processes behind support use and highlighted the need for flexible support that can accommodate variable support needs and preferences of MS family caregivers. Collectively, the findings of this dissertation operationalize a salutogenic paradigm for supporting MS family caregivers. Key recommendations are given to create supportive environments for caregivers and optimize their wellbeing. Improvements in access to respite care and financial support, better visibility of digital resources, and bolstering natural support networks may all be valuable strategies to improving the wellbeing of MS family caregivers in Canada.
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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 | 0,000 |
| 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 | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,001 |
| Science ouverte | 0,001 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 ».