Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review
Abstract Background Caregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly signifi...
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| Format: | Article |
| Language: | English |
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BMC
2025-08-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-025-01862-8 |
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| author | Roxane Pellerin Diane Tapp Catherine Filion Sophie Castonguay-Paradis Gina Bravo Guillaume Robert |
| author_facet | Roxane Pellerin Diane Tapp Catherine Filion Sophie Castonguay-Paradis Gina Bravo Guillaume Robert |
| author_sort | Roxane Pellerin |
| collection | DOAJ |
| description | Abstract Background Caregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly significant, as caregivers can influence both the quality of life and life expectancy of those they care for. Since they make decisions based on their knowledge, skills, preferences, and values, It is essential to develop a more comprehensive understanding of theses concepts regarding palliative and end-of-life care (PEoLC). Objectives Provide an overview of the existing scientific data on caregiver’s knowledge, attitudes and representations of palliative and end-of-life care and to analyze it in order to gain a deeper comprehension of the positioning of caregivers on the subject. Methods A narrative literature review was conducted to address the research question: “What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?” Searches in PubMed, CINAHL, and PsycINFO targeted articles published between 2000 and 2023 addressing the knowledge, attitudes, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics. Results Of the 900 articles found, 25 were included in the analysis. In addition to the palliative care approach, end-of-life practices founded included advance care planning, hospital transfer, artificial nutrition and hydration, treatment withdrawal, palliative sedation, and medically assisted dying. The analysis revealed a disparity in the number of studies on various PEoLC practices, with more data available on advance care planning than other practices. Caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. While there was some consensus on representations of the palliative care approach, ambivalent attitudes and representations were observed regarding PEoLC practices. Conclusion With the evolution of palliative care services and the increasing role and responsibility of caregivers in decision-making, a deeper understanding of their knowledge, attitudes, and representations of PEoLC is essential to better identify their support and informational needs. Further research is needed to enable healthcare professionals to provide targeted support and education to caregivers as patient conditions evolve, thereby improving overall care quality. |
| format | Article |
| id | doaj-art-aff5e05b36534d7eac4602dcc7a120bc |
| institution | Kabale University |
| issn | 1472-684X |
| language | English |
| publishDate | 2025-08-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj-art-aff5e05b36534d7eac4602dcc7a120bc2025-08-24T11:57:19ZengBMCBMC Palliative Care1472-684X2025-08-0124111110.1186/s12904-025-01862-8Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature reviewRoxane Pellerin0Diane Tapp1Catherine Filion2Sophie Castonguay-Paradis3Gina Bravo4Guillaume Robert5Faculté des sciences infirmières, Université LavalFaculté des sciences infirmières, Université LavalFaculté des sciences infirmières, Université LavalFaculté des sciences infirmières, Université LavalRéseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL)Centre hospitalier universitaire (CHU) de Rennes – Unité de soins palliatifs Rue de la TauvraisAbstract Background Caregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly significant, as caregivers can influence both the quality of life and life expectancy of those they care for. Since they make decisions based on their knowledge, skills, preferences, and values, It is essential to develop a more comprehensive understanding of theses concepts regarding palliative and end-of-life care (PEoLC). Objectives Provide an overview of the existing scientific data on caregiver’s knowledge, attitudes and representations of palliative and end-of-life care and to analyze it in order to gain a deeper comprehension of the positioning of caregivers on the subject. Methods A narrative literature review was conducted to address the research question: “What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?” Searches in PubMed, CINAHL, and PsycINFO targeted articles published between 2000 and 2023 addressing the knowledge, attitudes, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics. Results Of the 900 articles found, 25 were included in the analysis. In addition to the palliative care approach, end-of-life practices founded included advance care planning, hospital transfer, artificial nutrition and hydration, treatment withdrawal, palliative sedation, and medically assisted dying. The analysis revealed a disparity in the number of studies on various PEoLC practices, with more data available on advance care planning than other practices. Caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. While there was some consensus on representations of the palliative care approach, ambivalent attitudes and representations were observed regarding PEoLC practices. Conclusion With the evolution of palliative care services and the increasing role and responsibility of caregivers in decision-making, a deeper understanding of their knowledge, attitudes, and representations of PEoLC is essential to better identify their support and informational needs. Further research is needed to enable healthcare professionals to provide targeted support and education to caregivers as patient conditions evolve, thereby improving overall care quality.https://doi.org/10.1186/s12904-025-01862-8CaregiverDementiaPalliative careEnd-of-life careKnowledgeAttitude |
| spellingShingle | Roxane Pellerin Diane Tapp Catherine Filion Sophie Castonguay-Paradis Gina Bravo Guillaume Robert Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review BMC Palliative Care Caregiver Dementia Palliative care End-of-life care Knowledge Attitude |
| title | Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review |
| title_full | Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review |
| title_fullStr | Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review |
| title_full_unstemmed | Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review |
| title_short | Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review |
| title_sort | knowledge attitudes and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end of life care a narrative literature review |
| topic | Caregiver Dementia Palliative care End-of-life care Knowledge Attitude |
| url | https://doi.org/10.1186/s12904-025-01862-8 |
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