Examining End-of-Life Experiences of Family Caregivers for People Living with Dementia During Covid-19: An Interpretive Description Study
Notice bibliographique
Résumé
Family caregivers of people living with dementia (PLWD) are key participants in determining and carrying out end-of-life care for PLWD. In an effort to contain the spread of Covid-19, public health restrictions, such as no visitation in care settings, were enacted which had the potential to severely impede the family caregiver’s role in providing end-of-life care. This study aims to determine the experiences of family caregivers who provided end-of-life care to PLWD during Covid-19. To examine these experiences, the qualitative method of interpretive description was utilized. Family caregivers in Alberta, Canada were invited to participate in an online survey to examine their caregiving experiences during the Covid-19 pandemic, with the option of participating in a follow-up focus group. Sixteen FCGs whose family members with dementia died during the pandemic participated in the survey. A follow-up focus group (n=3) was conducted virtually to further examine how Covid-19 policies impacted their role as a caregiver for the PLWD in long-term care and affected the family caregiver’s ability to grieve. The results of the survey and virtual focus group suggest that a lack of role clarity and inadequate communication channels between the family caregivers and long-term care centers due to Covid-19 increased the strain family caregivers faced during end-of-life care. Participants also expressed frustration regarding their inability to communicate with the PLWD due to public health restrictions. Additionally, participants felt that protocols related to visitation were unclear. At the end of life, public policies, such as reduced or no visitation, led to feelings of chronic grief. Several participants also expressed appreciation for having previously completing advance care planning documentation prior to Covid-19. Family caregivers also felt that the limitation on gatherings negatively impacted their ability to grieve and organize adequate funeral services for the PLWD. Based on these results, policymakers can help ease the increased challenges faced by family caregivers during end-of-life care in future public health emergencies by involving family caregivers of PLWD in the decision-making process. The completion of advance care planning documentation can also ease the burden family caregivers may experience prior to and during end-of-life care.
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 | 0,018 | 0,029 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,003 | 0,002 |
| Études des sciences et des technologies | 0,009 | 0,009 |
| Communication savante | 0,006 | 0,005 |
| Science ouverte | 0,002 | 0,007 |
| Intégrité de la recherche | 0,002 | 0,003 |
| 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 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 ».