care partners

护理伙伴
  • 文章类型: Journal Article
    这项研究的目的是探讨护理接受者临床因素在护理伴侣准备与护理伴侣希望在出院时痴呆症患者寻求长期护理入院之间的关系中的中介作用。
    这项研究分析了以家庭为中心的以功能为中心的护理(Fam-FFC)的数据,其中包括424名护理接受者和护理伴侣。多重调解模型通过护理接受者的临床因素(痴呆的行为和心理症状[BPSD],研究了护理伴侣准备对寻求长期护理的愿望的间接影响。合并症,谵妄严重程度,物理功能,和认知)。
    谵妄严重程度和身体功能部分介导了护理伙伴准备与护理伙伴寻求长期护理的意愿之间的关系(B=-.011;95%CI=-.019,-.003和B=-.013;95%CI=-.027,-.001,分别)。
    干预措施应加强护理伙伴的准备,并解决住院痴呆症患者的谵妄严重程度和身体功能,以防止出院时不必要的疗养院安置。
    将护理伴侣的准备和护理接受者的临床因素(谵妄严重程度和身体机能)纳入出院计划可以最大程度地减少护理伴侣寻求长期护理的愿望。
    UNASSIGNED: The purpose of this study was to explore the mediating roles of care receiver clinical factors on the relationship between care partner preparedness and care partner desire to seek long-term care admission for persons living with dementia at hospital discharge.
    UNASSIGNED: This study analyzed data from the Family centered Function-focused Care (Fam-FFC), which included 424 care receiver and care partner dyads. A multiple mediation model examined the indirect effects of care partner preparedness on the desire to seek long-term care through care receiver clinical factors (behavioral and psychological symptoms of dementia [BPSD], comorbidities, delirium severity, physical function, and cognition).
    UNASSIGNED: Delirium severity and physical function partially mediated the relationship between care partner preparedness and care partner desire to seek long-term care admission (B = -.011; 95% CI = -.019, -.003, and B = -.013; 95% CI = -.027, -.001, respectively).
    UNASSIGNED: Interventions should enhance care partner preparedness and address delirium severity and physical function in hospitalized persons with dementia to prevent unwanted nursing home placement at hospital discharge.
    UNASSIGNED: Integrating care partner preparedness and care receiver clinical factors (delirium severity and physical function) into discharge planning may minimize care partner desire to seek long-term care.
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  • 文章类型: Journal Article
    背景:痴呆症患者的护理伙伴及其护理接受者的体力活动水平较低。移动应用程序已证明在促进老年人的身体活动方面有效。这项研究的目的是探索痴呆症患者的配偶护理伴侣及其护理接受者对旨在促进体育锻炼的移动应用程序的设计和内容的看法。方法:对14名护理伙伴及其护理接受者进行了半结构化访谈。采访被逐字转录后,进行了专题分析。结果:参与者的回答中出现了四个主题,这些主题与促进体育锻炼的移动应用程序的设计和内容有关:1)锻炼偏好和习惯,2)锻炼的障碍,3)锻炼的动机,和4)移动应用偏好和支持功能。结论:研究结果为设计有效的用户友好型移动应用程序奠定了基础,以促进满足多样化需求的身体活动,preferences,以及痴呆症患者的配偶护理伙伴及其护理接受者之间的挑战。
    Background: Care partners of persons living with dementia and their care-recipient have low levels of physical activity. Mobile applications have demonstrated effectiveness in promoting physical activity among older adults. The purpose of this study was to explore the perceptions of spousal care partners of persons with dementia and their care-recipient on the design and content of a mobile application intended to promote physical activity.Methods: Semi-structured interviews were conducted with 14 care partners and their care-recipient. After the interviews were transcribed verbatim, thematic analysis was performed.Results: Four themes emerged from the participants\' responses related to the design and content of a mobile application to promote physical activity: 1) exercise preferences and habits, 2) barriers to exercise, 3) motivations for exercise, and 4) mobile application preferences and supportive features.Conclusion: Findings lay the foundation for designing an effective user-friendly mobile application to promote physical activity that caters to the diverse needs, preferences, and challenges among spousal care partners of persons with dementia and their care-recipient.
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  • 文章类型: Journal Article
    背景:卫生系统碎片化直接导致患有多种慢性疾病的老年人及其护理伙伴的健康和社会结果不佳。老年人通常需要初级保健的支持,多个专家,家庭护理,社区支持服务,和其他卫生保健部门,这些提供者之间的沟通是非结构化的,也不是标准化的。综合和跨专业的基于团队的护理模式是改善向有复杂需求的老年人提供卫生服务的推荐策略。在数字平台上部署的标准化评估工具被认为是综合护理的必要组成部分。这项研究的目的是制定策略来利用电子健康工具,interRAI检查自我报告,支持安大略省南部社区中老年人及其护理伙伴的综合健康和社会护理,加拿大。
    方法:组概念图,参与式混合方法,进行了。参与者包括老年人,护理伙伴,和代表来自:家庭护理,社区支持服务,专门的老年服务,初级保健,和健康信息学。在一系列虚拟会议中,参与者提出了实施内部RAI检查的想法,并对这些想法的相对重要性进行了评级。层次聚类分析用于将想法映射到类似陈述的聚类中。与会者审查了地图,以共同制定行动计划。
    结果:41名参与者贡献了十个动作区域的聚类图(例如,老年人和护理伙伴的参与,仪器的易用性,评估过程的可及性,以人为本的过程,对提供者的培训和教育,提供商协调,卫生信息集成,卫生系统决策支持和质量改进,隐私和保密)。卫生系统决策支持集群被评为相对重要性最低,健康信息集成被评为相对重要性最高。
    结论:许多人-,提供者-,在健康和社会护理提供者实施和使用电子健康工具时,需要考虑系统级因素。这些因素与将其他标准化工具整合到跨专业团队护理中高度相关,以确保在引入技术时采用富有同情心的护理方法。
    BACKGROUND: Health system fragmentation directly contributes to poor health and social outcomes for older adults with multiple chronic conditions and their care partners. Older adults often require support from primary care, multiple specialists, home care, community support services, and other health-care sectors and communication between these providers is unstructured and not standardized. Integrated and interprofessional team-based models of care are a recommended strategy to improve health service delivery to older adults with complex needs. Standardized assessment instruments deployed on digital platforms are considered a necessary component of integrated care. The aim of this study was to develop strategies to leverage an electronic wellness instrument, interRAI Check Up Self Report, to support integrated health and social care for older adults and their care partners in a community in Southern Ontario, Canada.
    METHODS: Group concept mapping, a participatory mixed-methods approach, was conducted. Participants included older adults, care partners, and representatives from: home care, community support services, specialized geriatric services, primary care, and health informatics. In a series of virtual meetings, participants generated ideas to implement the interRAI Check Up and rated the relative importance of these ideas. Hierarchical cluster analysis was used to map the ideas into clusters of similar statements. Participants reviewed the map to co-create an action plan.
    RESULTS: Forty-one participants contributed to a cluster map of ten action areas (e.g., engagement of older adults and care partners, instrument\'s ease of use, accessibility of the assessment process, person-centred process, training and education for providers, provider coordination, health information integration, health system decision support and quality improvement, and privacy and confidentiality). The health system decision support cluster was rated as the lowest relative importance and the health information integration was cluster rated as the highest relative importance.
    CONCLUSIONS: Many person-, provider-, and system-level factors need to be considered when implementing and using an electronic wellness instrument across health- and social-care providers. These factors are highly relevant to the integration of other standardized instruments into interprofessional team care to ensure a compassionate care approach as technology is introduced.
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  • 文章类型: Journal Article
    痴呆症患者(PwD)及其护理伙伴(CP)可能在情绪调节方面有困难,情绪调节的个体差异可能与PwD的神经精神症状有关。本研究探讨了PwD的情绪调节困难是否存在自我意识,以及CP的情绪调节是否与PwD的神经精神症状有关,潜在的揭示偏见或人际效应。
    我们使用了来自愿望结果障碍计划研究的数据,样本为45PwD及其配偶CP(n=90个个体)。使用多元线性回归模型来研究PwD中CP报告的神经精神症状与两个二元成员的情绪调节自我报告之间的关联。社会人口统计学和健康因素的净值。对每种神经精神亚证和情绪调节困难的每个领域进行了单独分析。
    在PwD中,神经精神症状的严重程度增加与情绪调节的困难增加相关(β=1.23,p<0.05),但不是CP在情绪调节方面的困难。当CP在PwD中报告更严重的神经精神症状时,普华永道报告说他们很难接受情绪,控制冲动,目标导向的行为,并获得情绪调节策略,但不是在情感意识和澄清中。多动症和精神病亚综合征的代理报告与PwD自我报告的情绪调节困难显着相关。
    PwD报告了痴呆早期的情绪调节困难。代理报告的神经精神症状可能反映了PwD的情绪调节能力,并且不会因CP在情绪调节方面的困难而产生偏见。
    UNASSIGNED: People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD\'s neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD\'s difficulties in emotion regulation and whether CP\'s emotion regulation relates to the PwD\'s neuropsychiatric symptoms, potentially revealing bias or interpersonal effects.
    UNASSIGNED: We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation.
    UNASSIGNED: Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP\'s difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD\'s self-reported difficulties in emotion regulation.
    UNASSIGNED: PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD\'s emotion regulation capability and not be biased by CP\'s difficulties in emotion regulation.
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  • 文章类型: Journal Article
    美国医疗保健提供系统没有系统地参与或支持家人或朋友护理伙伴。同时,患者对个人健康信息门户的吸收和熟悉程度正在增加。技术创新,例如对门户的共享访问,使用单独的身份凭证来区分患者和护理伙伴.虽然不是众所周知的,或常用的,共享访问允许患者识别他们做了谁,不想参与他们的护理。然而,患者授予对门户的共享访问权限的过程通常是有限的或繁重的,以至于感兴趣的患者和护理伙伴通常会完全绕过该过程。因此,绝大多数护理合作伙伴诉诸于使用患者身份凭证访问门户-“自己动手”解决方案与卫生系统的法律责任相冲突,以保护患者的隐私和自主权。这种观点的个人叙述(通过许可共享)详细阐述了定量研究,并提供了患者和家庭在他们生命中关键时刻试图获得或授予共享访问权限时所面临的挑战的第一人称快照。随着数字模式增加患者在医疗保健互动中的角色,为所有利益相关者-患者-进行共享访问的重要性也是如此,临床医生,和护理伙伴。电子健康记录供应商必须认识到,患者和护理合作伙伴都是其产品的重要用户,和卫生保健组织必须承认和支持的关键贡献的护理合作伙伴不同于患者。
    The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient\'s identity credentials-a \"do-it-yourself\" solution in conflict with a health systems\' legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved-patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.
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  • 文章类型: Journal Article
    背景:患有帕金森病(PwPD)的人患有运动和非运动症状,这些症状显着影响其生活质量(QoL),和他们的护理伙伴的QoL(CP)。串联循环可减少PwPD运动症状;然而,没有研究检查其他获益或包括PwPDCP.我们进行了为期8周的社区虚拟现实(VR)串联自行车干预,以评估PwPD及其CP的可行性和有效性(即,PD二元)。我们假设二进串联循环可以改善(1)PwPD运动和非运动症状,以及(2)PD二联QoL和生理健康的维度。
    方法:招募10个PDdyads以完成8周的进行性强度,每两周一次的串联自行车运动。在测试前和测试后,PwPD使用运动障碍协会-统一帕金森病评定量表-III(MDS-UPDRS-III)进行评估,功能步态评估(FGA),和10米的步态速度测试。PDdyads还完成了情感和认知状态问卷[例如,老年抑郁量表-简表(GDS-SF)],并佩戴BodyGuard2心率(HR)监测器48小时,以评估心率变异性的替代措施。使用Studentt检验进行统计学分析,显著性设定为p≤0.05。
    结果:8个PDdyads和1个PwPD完成了干预。PwPD(90%)和CP(80%)的保留是足够的,PD二元组的依从性为91.67%至97.91%。PwPD在MDS-UPDRS-III评分方面表现出显着的临床改善(-7.38,p<0.01),FGA评分(+3.50,p<0.01),和10米步态速度时间(+0.27米/秒,p<0.01),除了自我报告的流动性显着改善(-13.61,p=0.02),疲劳(-5.99,p=0.02),和社会参与(+4.69,p<0.01)。CP抑郁症状显著降低(-0.88,p=0.02),PD二元组的连续差异均方根显着增加(RMSSD;p=0.04)。
    结论:我们的初步研究证明了社区VR串联循环作为PDdyads治疗干预的可行性和多个功效领域的进一步研究。
    BACKGROUND: Persons with Parkinson\'s disease (PwPD) suffer from motor and non-motor symptoms which significantly affect their quality of life (QoL), and the QoL of their care partners (CP). Tandem cycling reduces PwPD motor symptoms; however, no studies have examined other benefits or included PwPD CP. We conducted an 8-week community virtual reality (VR) tandem cycling intervention to assess the feasibility and efficacy for PwPD and their CP (i.e., PD dyads). We hypothesized that dyadic tandem cycling would improve (1) PwPD motor and non-motor symptoms and (2) dimensions of PD dyads\' QoL and physiologic health.
    METHODS: Ten PD dyads were recruited to complete 8 weeks of progressive intensity, bi-weekly tandem cycling. At pre- and post-testing, PwPD were assessed using the Movement Disorder Society-Unified Parkinson\'s Disease Rating Scale-III (MDS-UPDRS-III), functional gait assessment (FGA), and 10-m gait speed test. PD dyads also completed emotional and cognitive status questionnaires [e.g., Geriatric Depression Scale-Short Form (GDS-SF)], and wore BodyGuard 2 heart rate (HR) monitors for 48 h to assess surrogate measures of heart rate variability. Statistical analyses were conducted using Student\'s t tests with significance set at p ≤ 0.05.
    RESULTS: Eight PD dyads and one PwPD completed the intervention. Retention of PwPD (90%) and CP (80%) was adequate, and PD dyad adherence ranged from 91.67 to 97.91%. PwPD demonstrated significant clinical improvements in MDS-UPDRS-III scores (- 7.38, p < 0.01), FGA scores (+ 3.50, p < 0.01), and 10-m gait speed times (+ 0.27 m/s, p < 0.01), in addition to significant self-reported improvements in mobility (- 13.61, p = 0.02), fatigue (- 5.99, p = 0.02), and social participation (+ 4.69, p < 0.01). CP depressive symptoms significantly decreased (- 0.88, p = 0.02), and PD dyads shared a significant increase in root mean square of the successive differences (RMSSD; p = 0.04).
    CONCLUSIONS: Our pilot study demonstrated feasibility and multiple areas of efficacy supporting further investigation of community VR tandem cycling as a therapeutic intervention for PD dyads.
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  • 文章类型: Journal Article
    β淀粉样蛋白PET扫描是一种微创生物标志物,可告知阿尔茨海默病(AD)的诊断。照顾者的反应和经验(CARE)研究,一个想法补充,旨在了解PET扫描接受者及其护理伙伴关于扫描动机的经验,报告和解释结果,以及结果的影响。同意加入CARE-IDEAS研究的轻度认知障碍或痴呆症患者及其护理伙伴在大约18个月后参加了基线调查和随访调查。辅以对参与者子集的深入定性访谈。接受扫描并自愿进行后续研究的患者更有可能是男性,受过更好的教育,收入高于一般人口。调查信息与医疗保险数据合并。本文整合了一些CARE-IDEAS出版物的发现,并为实践和研究提供了启示。尽管大多数参与者准确地报告了扫描结果,他们经常对预后的意义感到困惑.一些参与者报告了结果的困扰,但是测量的抑郁没有显著变化,负担,或者随着时间的推移经济压力。许多受访者希望获得有关预后和支持资源的更多信息。扫描结果与服务使用随时间的变化没有差异。研究结果表明,临床医生需要精心设计和测试的工具来讨论扫描及其结果的风险和益处。以及支持患者和护理合作伙伴后续规划的资源。扫描结果的学习提供了一个接触点,应利用该接触点来促进共享决策和以人为中心的纵向AD护理。
    Beta amyloid PET scans are a minimally invasive biomarker that may inform Alzheimer\'s disease (AD) diagnosis. The Caregiver\'s Reactions and Experience (CARE) study, an IDEAS supplement, aimed to understand experiences of PET scan recipients and their care partners regarding motivations for scans, reporting and interpreting results, and impact of results. Patients with mild cognitive impairment or dementia who agreed to join the CARE-IDEAS study and their care partners participated in a baseline survey and follow-up survey approximately 18 months later, supplemented by in-depth qualitative interviews with subsets of participants. Patients who received scans and volunteered for follow-up research were more likely to be male, better educated, and have higher income than the general population. Survey information was merged with Medicare data. This article integrates findings from several CARE-IDEAS publications and provides implications for practice and research. Although most participants accurately reported scan results, they were often confused about their meaning for prognosis. Some participants reported distress with results, but there were no significant changes in measured depression, burden, or economic strain over time. Many respondents desired more information about prognosis and supportive resources. Scan results were not differentially associated with changes in service use over time. Findings suggest a need for carefully designed and tested tools for clinicians to discuss risks and benefits of scans and their results, and resources to support patients and care partners in subsequent planning. Learning of scan results provides a point-of-contact that should be leveraged to facilitate shared decision-making and person-centered longitudinal AD care.
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  • 文章类型: Journal Article
    背景:患有严重疾病的患者的护理伙伴在患者的治疗期间和死亡后经历重大挑战和未满足的需求。向他人学习,分享经验可能是有价值的,但是机会并不总是可用的。
    目的:本研究旨在设计和原型,促进,和基于网络的同伴支持网络,以帮助患有严重疾病的人的活跃和失去亲人的护理伙伴更好地准备应对严重疾病和丧亲期间出现的意外。
    方法:由18人组成的共同设计团队包括积极的护理伙伴和丧亲者,经历过严重疾病的人,区域卫生保健和支持伙伴,和临床医生。它由主持人和同行网络主题专家指导。我们进行了设计练习,以确定对等支持网络的功能和规范。共同设计成员独立确定网络规范的优先级,它们被纳入基于Web的网络的早期迭代中。
    结果:团队优先考虑了两个功能:(1)将护理伙伴与信息联系起来;(2)促进情感支持。设计过程生成了24个潜在的网络规范来支持这些功能。最高优先事项包括提供支持和尊重的社区;将人们与可信赖的资源联系起来;减少寻求帮助的障碍;并提供常见问题和回应。网络平台必须简单直观,为用户提供技术支持,保护会员隐私,提供公开信息和私人讨论论坛,并且易于访问。在3个月的时间内,在基于ConnectShareCare的网络中注册会员是可行的。
    结论:共同设计过程支持为农村地区严重疾病患者的护理伙伴确定同伴支持网络的关键特征,以及初始测试和使用。正在进行进一步的测试,以评估网络的长期可行性和影响。
    BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient\'s treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available.
    OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement.
    METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network.
    RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period.
    CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.
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  • 文章类型: Journal Article
    目的:描述COVID-19大流行期间癌症幸存者和护理伙伴的感知压力和社会支持,并评估音频日记评估角色相关需求和资源的可行性。
    方法:参与者(N=51;n=28名幸存者,n=23名护理伙伴)记录了三个月的音频日记,报告了压力和支持经验。使用混合方法对日记进行转录和内容分析。与压力相关的内容是感应编码的,社会支持内容按类型演绎编码(工具性,信息,情感,陪伴,评估;κ=0.75)然后感应编码。描述性统计数据总结了社会人口统计学数据,并按角色比较了编码频率。我们开发了压力和支持类别的叙述性摘要,并选择了上下文细节的报价。
    结果:与癌症相关的压力源最普遍(28.8%),其次是工作(26.8%),家庭(23.1%),社会隔离(13.4%),和财务(8.0%)。虽然不同角色之间的报告频率没有显着差异,癌症相关的应激在幸存者中更为普遍,而护理伙伴更多地提及与工作相关的应激.情感支持是最普遍的支持类型(32.1%),其次是陪伴(25.3%),评估(17.9%),仪器(16.67%),和信息支持(8%)。幸存者报告比护理伙伴更多的评估支持(χ2=6.48,df=1,P=0.011)和更多的自我护理支持,而护理伙伴表达了更多面向其他方面的担忧,并更侧重于管理责任和家庭外的互动。
    结论:大流行在生存背景下已经存在复杂且加剧的基于角色的压力源。我们的发现强调了非正式社会支持网络的重要性,特别是当获得正式服务受到限制时,并建议音频日记可以成为评估支持需求和资源的有效工具。
    结论:护士和医疗保健提供者应定制社会支持评估,以满足癌症幸存者及其护理伙伴的不同支持需求和个人资源。在限制获得护理和正式服务的情况下,这一点尤其重要。
    OBJECTIVE: To describe cancer survivors\' and care partners\' perceived stress and social support during the COVID-19 pandemic and assess the feasibility of audio diaries for assessing role-related needs and resources.
    METHODS: Participants (N = 51; n = 28 survivors, n = 23 care partners) recorded three monthly audio diaries reporting stress and support experiences. Diaries were transcribed and content-analyzed using a hybrid approach. Stress-related content was inductively coded, and social support content was deductively coded by type (instrumental, information, emotional, companionship, appraisal; κ = 0.75) then inductively coded. Descriptive statistics summarized sociodemographic data and compared coding frequencies by role. We developed narrative summaries of stress and support categories and selected quotes for contextual detail.
    RESULTS: Cancer-related stressors were most prevalent (28.8%), followed by work (26.8%), family (23.1%), social isolation (13.4%), and finances (8.0%). While no significant difference in reporting frequency was observed between roles, cancer-related stress was more prevalent for survivors while work-related stress was mentioned more by care partners. Emotional support was the most prevalent support type (32.1%), followed by companionship (25.3%), appraisal (17.9%), instrumental (16.67%), and informational support (8%). Survivors reported more appraisal support than care partners (χ2 = 6.48, df = 1, P = .011) and more support for self-care, while care partners expressed more other-oriented concerns and focused more on managing responsibilities and interactions outside the household.
    CONCLUSIONS: The pandemic complicated and intensified role-based stressors already present in the survivorship context. Our findings highlight the importance of informal social support networks, particularly when access to formal services is limited, and suggest that audio diaries can be an effective tool for assessing support needs and resources.
    CONCLUSIONS: Nurses and healthcare providers should tailor social support assessments to address the distinct support needs and individual resources of cancer survivors and their care partners. This is especially critical in contexts that limit access to care and formal services.
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  • 文章类型: Journal Article
    目标:使用远程学习模式使护理人员参与主动学习环境的心理教育干预已证明在提高护理掌握方面具有益处。然而,这些项目中很少有专门用于培养黑人护理人员的掌握能力。
    方法:进行了多方法方法评估,包括事后调查和深入访谈。这个心理教育课程解决了照顾一个患有痴呆症的人作为美国黑人的文化现实。从事与医疗保健导航相关的在线异步教育的护理人员,家庭生活管理,和自我照顾。主要(护理掌握)和次要结果(焦虑,抑郁症,感知压力,负担,在基线和课程后(10周)评估感知的管理行为和心理症状的能力)。
    结果:来自美国各地的32名黑人护理人员在规定的时间内完成了课程。配对样本t检验分析显示,护理人员负担和角色压力显着降低。护理者从基线到完成的掌握情况增加了0.45点,效果大小为0.26(Cohen'sd)。二十九名护理人员参加了选修课程后面试,和主题分析导致了5个总体主题的构建:文化定制课程的舒适性;课程平台的经验;课程资源的效用;时间作为障碍和促进者;家庭和社区参与。
    结论:试点研究结果表明,需要继续为痴呆症护理人员创建和接收有关文化定制心理教育计划的反馈。接下来的步骤包括应用结果以促进CWB的下一次迭代的成功。
    Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers.
    A multimethod approach was carried out to assess Caregiving While Black (CWB), including pre-post surveys and in-depth interviews. This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American. Caregivers engaged in online asynchronous education related to healthcare navigation, home life management, and self-care. Primary (caregiving mastery) and secondary outcomes (anxiety, depression, perceived stress, burden, perceived ability to manage behavioral and psychological symptoms) were assessed at baseline and post-course (10 weeks).
    Thirty-two Black caregivers from across the United States completed the course within the allotted time frame. Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion increased by 0.45 points with an effect size of 0.26 (Cohen\'s d). Twenty-nine caregivers participated in an optional post-course interview, and thematic analysis led to the construction of 5 overarching themes: Comfortability with a Culturally Tailored Course; Experiences Navigating the Course Platform; Utility of Course Resources; Time as a Barrier and Facilitator; Familial and Community Engagement.
    Pilot findings convey a need to continue creating and receiving feedback on culturally tailored psychoeducation programs for dementia caregivers. The next steps include applying results to fuel the success of the next iteration of CWB.
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