PDF(Pubmed)
Abstract：
OBJECTIVE: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools.
METHODS: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis.
RESULTS: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The \'captured needs\' range between 8% and 66% across all the included needs assessment tools.
CONCLUSIONS: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.
METHODS: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis.
RESULTS: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The \'captured needs\' range between 8% and 66% across all the included needs assessment tools.
CONCLUSIONS: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.
摘要：
目标：护理伙伴的负担，特别是一旦痴呆症出现，是所有护理团体中最伟大的。这项荟萃审查旨在（1）关于支持神经退行性疾病患者的护理伙伴自我报告需求的综合证据；（2）根据护理伙伴和护理接受者的特征比较需求；（3）确定现有护理伙伴需求评估工具的正面有效性。
方法：我们根据人口统计学和其他特征对涉及护理伴侣需求和需求差异的主题综合的综述进行了系统综述。然后，我们通过从特定于痴呆症的现有需求评估工具中确定需求主题，并将其与主题综合得出的需求进行交叉匹配，从而进行了差距分析。
结果：根据17篇已发表的评论，确定的需求范围分为四个关键主题：(1)知识和信息，（2）物理，社会和情感支持，（3）照顾伴侣自我照顾，和(4)护理接受者的需求。根据疾病的轨迹，需求可能会有所不同，与受护理者的关系，以及护理伙伴和接受者的人口统计学特征。在所有包含的需求评估工具中，“捕获的需求”范围在8%到66%之间。
结论：目前的工具不能完全或充分地满足神经退行性疾病患者护理伙伴的自我识别需求。鉴于护理伙伴的高负担，COVID-19（SARSCoV-2）大流行进一步加剧了这种情况，需求评估工具应在整个护理轨迹中与护理伙伴自我报告的需求保持一致,以便更好地了解未满足的需求和针对性的支持性干预措施.
方法：我们根据人口统计学和其他特征对涉及护理伴侣需求和需求差异的主题综合的综述进行了系统综述。然后，我们通过从特定于痴呆症的现有需求评估工具中确定需求主题，并将其与主题综合得出的需求进行交叉匹配，从而进行了差距分析。
结果：根据17篇已发表的评论，确定的需求范围分为四个关键主题：(1)知识和信息，（2）物理，社会和情感支持，（3）照顾伴侣自我照顾，和(4)护理接受者的需求。根据疾病的轨迹，需求可能会有所不同，与受护理者的关系，以及护理伙伴和接受者的人口统计学特征。在所有包含的需求评估工具中，“捕获的需求”范围在8%到66%之间。
结论：目前的工具不能完全或充分地满足神经退行性疾病患者护理伙伴的自我识别需求。鉴于护理伙伴的高负担，COVID-19（SARSCoV-2）大流行进一步加剧了这种情况，需求评估工具应在整个护理轨迹中与护理伙伴自我报告的需求保持一致,以便更好地了解未满足的需求和针对性的支持性干预措施.
