Caregiving

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  • 文章类型: Journal Article
    背景:预计到2060年,美国患有ADRD的老年人数量将急剧增加。随着老年人越来越多地承担非正式的护理责任,以社区为基础的干预以维持护理人员的健康是痴呆症研究的重点。
    目的:评估RWSI在老年ADRD照顾者中的可行性。RWSI由神经内脏整合模型提供信息,其中涉及安全信号的记忆培养了安全和幸福的感觉。
    方法:与年龄较大的ADRD护理人员进行干预前/后的受试者内部设计,以评估可行性(可接受性,需求,保真度)和经验承诺(福祉)。
    结果:RWSI的可行性,以保真度实现,得到了强烈的认可,当参与者参加每个干预会议时,之后报告说经历了温暖和安全的感觉,并提供了最高的可接受性评级。参与者的叙述提供了佐证。
    结论:研究结果支持RWSI在老年ADRD护理人员中的可行性,为继续研究提供依据。
    BACKGROUND: The number of older adults in the U.S. living with ADRD is projected to increase dramatically by 2060. As older adults increasingly assume informal caregiving responsibilities, community-based intervention to sustain caregiver well-being is a dementia research priority.
    OBJECTIVE: To evaluate the feasibility of the RWSI among older ADRD caregivers. The RWSI is informed by the Neurovisceral Integration Model, in which memories that engage safety signals cultivate feelings of safety and well-being.
    METHODS: A within-subjects pre/post-intervention design with older ADRD caregivers to evaluate feasibility (acceptability, demand, fidelity) and empirical promise (well-being).
    RESULTS: The feasibility of the RWSI, implemented with fidelity, was strongly endorsed, as participants attended each intervention session, after which reported experiencing feelings of warmth and safeness, and provided the highest possible acceptability ratings. Participant narratives provided corroboration.
    CONCLUSIONS: Findings support the feasibility of the RWSI in older ADRD caregivers, providing the basis for continued research.
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  • 文章类型: Journal Article
    目标:在肯尼亚和整个非洲,痴呆症患者的数量正在上升。尽管家庭照顾者是肯尼亚痴呆症护理的主要提供者,关于为什么家庭成员照顾痴呆症患者,仍然存在很大的知识差距。这项研究探讨了肯尼亚农村地区痴呆症患者护理的驱动因素。
    方法:参与者在Makueni县招募,肯尼亚。主要数据来自焦点小组讨论(FGD)和对痴呆症患者家庭照顾者的五次个人访谈。为了补充解释,通过使用FGD与医护人员和公众的数据进行三角测量。所有录音均使用NVIVO12进行逐字转录和归纳主题分析。
    结果:使用定位理论,我们试图生成有关成为家庭照顾者的动机的信息。分析中出现了五个主题,包括:(I)自我实现,(ii)家庭义务,(三)文化和宗教信仰;(iv)互惠,(五)社会压力。这些主题描述了对痴呆症患者的护理性质,基于参与者认为的令人信服和/或激励因素。
    结论:我们的发现描述了肯尼亚痴呆症患者家庭护理者的独特动机。在护理经验中找到意义的能力可以有助于发展有效的支持系统,旨在提高肯尼亚痴呆症护理的整体质量的痴呆症护理干预措施和政策。
    OBJECTIVE: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context.
    METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12.
    RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors.
    CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    老年护理接受者有不同类型的护理网络,从仅配偶到大型混合护理网络,这增加了不同水平的福祉。将自决理论(SDT)应用于护理环境,我们认为,护理网络的构成可能会促进或阻碍健康的三个基本需求:相关性,自主权和能力。
    数据来自1992年至2022年阿姆斯特丹纵向衰老研究的十项观察结果(N=18434观察结果,来自4,837名荷兰老年人)。使用五种护理网络类型:无护理,合作伙伴,非正式,正式或私人付费护理。抑郁症状的混合-混合-多层次回归分析作为健康的衡量被应用于护理网络类型和孤独感,掌握和护理充分性作为三个基本福祉需求的指标。
    接受来自合作伙伴护理网络的护理是,与正式的护理网络相比,与抑郁症状最负面的关联,其次是非正式护理和私人付费护理。孤独感和护理充分性存在护理网络类型的差异,但不是掌握,部分解释了护理网络类型与抑郁症状之间的关联。效果之间和效果内的结果是可比的。
    使用丰富的数据集和先进的方法支持以下假设:正式护理网络由于护理不足和孤独感的增加而阻碍了健康,特别是与伴侣和非正式护理相比。掌握的作用不那么重要,可能是因为它没有衡量与护理相关的控制水平。
    UNASSIGNED: Older care recipients have different types of care networks, varying from spouse-only to large mixed care networks, that add to different levels of wellbeing. Applying Self-Determination Theory (SDT) to the care context, we argue that the care network composition may foster or hamper the three basic needs for wellbeing: relatedness, autonomy and competence.
    UNASSIGNED: Data are from ten observations between 1992 and 2022 of the Longitudinal Aging Study Amsterdam (N = 18,434 observations from 4,837 older Dutch adults). Five care network types are used: no care, partner, informal, formal or privately paid care. Mixed-hybrid-multilevel regression analysis of depressive symptoms as measure of wellbeing is applied on care network type and loneliness, mastery and care sufficiency as indicators of the three basic needs for wellbeing.
    UNASSIGNED: Receiving care from a partner care network is, compared to the formal care network, the most negatively associated with depressive symptoms, followed by informal care and privately paid care. Differences in care network types existed in loneliness and care sufficiency, but not in mastery, and in part explained the association between care network types and depressive symptoms. Results of between and within effects are comparable.
    UNASSIGNED: Using a rich data set and advanced methodology support the hypotheses that formal care networks hamper wellbeing due to insufficient care and increased loneliness, in particular compared to partner and informal care. The role of mastery was less important, possibly because it does not measure care related level of control.
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  • 文章类型: Journal Article
    背景:患有多种疾病的老年人可能需要不同类型的护理,并依靠非正式护理来满足其护理需求。这项研究旨在确定不同的老年人群体,根据经验确定的多发病率模式,并比较估计班级之间接受的非正式护理的特征。
    方法:数据来自2011年国家健康和老龄化趋势研究(NHATS)。包括10种慢性病,以使用潜在类别分析估计7532名个体中的多患病模式。估计了多项逻辑回归模型来检验社会人口统计学特征之间的关联,健康状况和生活方式变量,照顾接收特征和潜在的班级成员资格。
    结果:四类解决方案确定了以下多种疾病组:一些中度认知障碍的躯体疾病(30%),心脏代谢(25%),肌肉骨骼(24%),和多系统(21%)。与那些报告没有得到帮助的人相比,仅接受家庭活动帮助的护理接受者(OR=1.44,95%CI1.05-1.98),行动能力,而不是自我护理(OR=1.63,95%CI1.05-2.53),与某些躯体组相比,多系统组的可能性更大,或者自我护理而不是活动性(OR=2.07,95%CI1.29-3.31)。与某些躯体组相比,有更多的照顾者与多系统组的可能性更高(OR=1.09,95%CI1.00-1.18),而接受付费帮助者的帮助与多系统组的较低几率相关(OR=0.36,95%CI0.19~0.77).
    结论:结果强调了具有不同多发病率组合的人的不同护理需求,特别是多系统多发病率的老年人广泛的非正式需求。政策和干预措施应认识到与多发病模式相关的不同护理需求,以更好地提供以人为本的护理。
    BACKGROUND: Older adults with varying patterns of multimorbidity may require distinct types of care and rely on informal caregiving to meet their care needs. This study aims to identify groups of older adults with distinct, empirically-determined multimorbidity patterns and compare characteristics of informal care received among estimated classes.
    METHODS: Data are from the 2011 National Health and Aging Trends Study (NHATS). Ten chronic conditions were included to estimate multimorbidity patterns among 7532 individuals using latent class analysis. Multinomial logistic regression model was estimated to examine the association between sociodemographic characteristics, health status and lifestyle variables, care-receiving characteristics and latent class membership.
    RESULTS: A four-class solution identified the following multimorbidity groups: some somatic conditions with moderate cognitive impairment (30%), cardiometabolic (25%), musculoskeletal (24%), and multisystem (21%). Compared with those who reported receiving no help, care recipients who received help with household activities only (OR = 1.44, 95% CI 1.05-1.98), mobility but not self-care (OR = 1.63, 95% CI 1.05-2.53), or self-care but not mobility (OR = 2.07, 95% CI 1.29-3.31) had greater likelihood of being in the multisystem group versus the some-somatic group. Having more caregivers was associated with higher odds of being in the multisystem group compared with the some-somatic group (OR = 1.09, 95% CI 1.00-1.18), whereas receiving help from paid helpers was associated with lower odds of being in the multisystem group (OR = 0.36, 95% CI 0.19-0.77).
    CONCLUSIONS: Results highlighted different care needs among persons with distinct combinations of multimorbidity, in particular the wide range of informal needs among older adults with multisystem multimorbidity. Policies and interventions should recognize the differential care needs associated with multimorbidity patterns to better provide person-centered care.
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  • 文章类型: Journal Article
    背景:研究界历来未能在痴呆症临床试验中招募不同的参与者。痴呆症护理研究的一个独特方面是研究伙伴的要求,谁可以证明护理接受者的临床和功能能力。这项研究的目的是评估种族和族裔差异以及痴呆症护理人员中各种试验考虑因素的重要性,他们决定作为研究伙伴参与临床研究。方法:我们在美国痴呆症护理人员的全国代表性调查中嵌入了一个假设的痴呆症临床试验的小插图,过度抽样非西班牙裔黑人和西班牙裔护理人员。痴呆症护理人员被问及是否愿意与他们的护理接受者一起参加试验,并在假设的参与决定中评估了九项考虑因素的重要性。在基础人口统计学模型中分析了照顾者的人口统计学特征作为试验参与的预测因子。在第二个原因中,模型照顾者的人口统计学特征和九项考虑因素的评级重要性分别被分析为预测因子;两个模型都使用调查加权逻辑回归。结果:样本由610名痴呆症护理人员组成,包括156名非西班牙裔黑人和122名西班牙裔照顾者参与者。在基本人口模型中,假设性试验参与与老年护理者年龄呈负相关(OR(比值比)=0.72,p=<0.001).在原因模型中,通过参与研究帮助他人的社会责任的等级重要性与参与显着相关(OR=1.56,p=0.049),而护理接受者出现严重副作用的可能性的重要性与参与呈负相关(OR=0.51,p=0.003).在两个模型中,非西班牙裔黑人和非西班牙裔白人护理人员之间的假设参与没有显着差异,或在西班牙裔和非西班牙裔白人照顾者之间。结论:西班牙裔和非西班牙裔黑人痴呆照顾者参与假设的痴呆临床试验的可能性并不比非西班牙裔白人痴呆照顾者低。我们的研究表明,在痴呆症临床研究中招募不同人群的失败并不是由于代表性不足群体成员的意愿降低,而是可能反映出结构性障碍和历史上被排除在试验参与之外。
    UNASSIGNED: The research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient\'s clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners.
    UNASSIGNED: We embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression.
    UNASSIGNED: The sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers.
    UNASSIGNED: Hispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation.
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  • 文章类型: Journal Article
    这项研究考察了代际家庭服务学习计划的好处,以减少居家老年人的心理困扰。对182个样本进行了多元回归分析,以检查该计划的服务年限与护理人员是否存在心理困扰之间的关系。研究结果表明,服务年限(β=-0.15,p<.05)和有孩子作为照顾者(β=-0.14,p<.05)与心理困扰的减少有关。政策和做法可以通过创新的服务学习模式支持老年保健专业人员的管道,使老年人受益,看护者,和学生。
    This study examined the benefits of an intergenerational home-based service learning program to reduce psychological distress for homebound older adults. Multivariate regression analyses were conducted with a sample of 182 to examine the association of length of service from the program and presence of caregivers with psychological distress. Findings indicated length of service (β = -0.15, p < .05) and having a child as a caregiver (β = -0.14, p < .05) were associated with a reduction in psychological distress. Policies and practice can support a pipeline of geriatric health professionals through innovative service learning models to benefit older adults, caregivers, and students.
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  • 文章类型: Journal Article
    背景:虽然文献强调了照顾家庭成员的巨大挑战,目前尚不清楚智力残疾和具有挑战性行为的家庭照顾者的需求是什么,以及对他们有什么好处。这项研究旨在研究60名父母和兄弟姐妹在管理成年家庭成员在家中生活时具有智力障碍的挑战性行为方面的经验。
    方法:将采用半结构化访谈的定性扎根理论方法。目的抽样将用于招募与智障成年人生活在一起并在香港使用一项社区服务的家庭照顾者。将接触来自中国北方的三所智力残疾人特殊学校。
    结果:本研究旨在深入了解家庭照顾者的经历,并比较他们在家庭中处理智障成年亲属的挑战性行为时所面临的不同情况。
    结论:尽管这项研究针对的是有智力障碍的成年人,研究结果将为表现出苛刻和挑战行为并与家人生活在一起的青少年和年轻人提供参考。建议可以指导制定适当的战略,以加强对家庭照顾者的服务。
    BACKGROUND: While the literature has highlighted the immense challenges in caring for family members, it is still unclear what the needs of family carers of persons with intellectual disability and challenging behaviours are and what has worked for them. This study aims to examine 60 parents\' and siblings\' experiences in managing the challenging behaviours of their adult family member with intellectual disability whilst living at home.
    METHODS: A qualitative grounded theory approach using semi-structured interviews will be adopted. Purposive sampling will be used to recruit family carers who live with adult persons with intellectual disability and use one community service in Hong Kong. Three special schools for persons with intellectual disability from northern China will be approached.
    RESULTS: This study will aim to provide an in-depth understanding of the experiences of family carers and compare the different circumstances they face when managing the challenging behaviours of their adult relatives with intellectual disability in their family home.
    CONCLUSIONS: Although this study targets adults with intellectual disability, the findings will provide a point of reference for adolescents and younger persons who exhibit demanding and challenging behaviours and live with their families. Recommendations can guide the development of appropriate strategies to strengthen services for family carers.
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  • 文章类型: Journal Article
    背景:在美国,阿尔茨海默病和阿尔茨海默病相关痴呆(AD/ADRD)患者的护理人员每年提供超过160亿小时的无偿护理.这些护理人员经历与提供护理相关的挑战相关的高水平的压力和负担。社交媒体是个人寻求各种形式支持的新兴空间。
    目的:我们旨在探索社交媒体网站Reddit上与AD/ADRD相关的主要话题。然后,我们旨在深入探讨这些主题,专门检查用户讨论的社会支持和行为症状学元素。
    方法:我们首先从2个痴呆症特定的subreddit论坛(r/Alzheimers和r/destime)的6563个帖子中生成了一个无监督主题模型。然后,我们对这些数据的随机子集进行了手动定性内容分析,以进一步探索语料库中的显著主题.
    结果:总体一致性得分最高(0.38)的主题模型包括10个主题,包括照顾者的负担,焦虑,寻求支持,和AD/ADRD行为症状学。定性分析提供了额外的上下文,其中用户为护理体验的许多方面寻求情感和信息支持,包括协助做出关键的护理相关决策。用户在Reddit上表达了具有挑战性和复杂的情绪,这可能是当面表达的禁忌。
    结论:Reddit用户寻求许多不同形式的支持,包括情感和特定的信息支持,从其他人在互联网上。用户表达了各种各样的担忧,挑战,和行为症状作为护理体验的一部分进行管理。独特的(即,匿名和温和)论坛的性质允许一个安全的空间来表达情绪,而没有记录在案的看护者的耻辱。需要额外的支持结构来帮助AD/ADRD患者的护理人员。
    BACKGROUND: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support.
    OBJECTIVE: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users.
    METHODS: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus.
    RESULTS: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person.
    CONCLUSIONS: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.
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  • 文章类型: Journal Article
    目标:关于老年人家庭照顾者健康的奖学金不断扩大。尽管现有研究表明,许多家庭照顾者会经历疼痛,这会影响他们执行护理任务的能力,并与护理接受者的未满足需求有关,关于家庭照顾者疼痛的研究范围仍然不明确。我们对老年人家庭照顾者的疼痛研究进行了范围审查,以表征现有证据并确定知识差距。
    方法:我们搜索了2012年1月至2023年7月的多个数据库,使用预定义的纳入/排除标准确定了符合条件的研究,和提取的关键数据(例如,研究设计/方法论,疼痛测量,护理人员疼痛类型,和主要发现)。
    结果:我们确定了在美国(n=19)和国际(n=27)进行的46项合格研究。研究通常集中在具有特定健康状况的老年人的护理人员上,如癌症(n=11),痴呆(n=8),或中风(n=3)。最常用的疼痛测量是关于疼痛的单项目二分问题(n=16),然后是视觉数字或视觉模拟量表(n=11)。九项研究(五项随机对照试验)报道了五项护理人员疼痛管理干预措施,包括瑜伽/锻炼计划和护理人员教育计划。
    结论:现有的关于家庭照顾者疼痛的研究提供了一个重要的基础。然而,更强大的研究设计是必要的。除了进行系统调查的机会外,我们还确定了未来研究的可能性,以支持依靠家庭照顾者来照顾越来越多的老年人。
    OBJECTIVE: Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients\' unmet needs, the scope of research on family caregivers\' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps.
    METHODS: We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings).
    RESULTS: We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single-item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs.
    CONCLUSIONS: Existing research on family caregivers\' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.
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