脑卒中吞咽障碍患者照顾者需求的质性研究

目的 了解脑卒中吞咽障碍患者照顾者的需求,为构建脑卒中吞咽障碍患者照顾者培训体系、减轻照顾者负担、促进脑卒中吞咽障碍患者康复提供参考.方法 采用质性研究中的现象学研究方法,选取11名脑卒中吞咽障碍患者照顾者进行半结构式访谈,对访谈资料进行转录、编码、分析、总结和归纳.结果 脑卒中吞咽障碍患者照顾者需求可提炼为4个主题:知识缺乏、渴望社会支持、心理负担过重和延续护理服务欠缺.结论 脑卒中吞咽障碍患者照顾者存在多方面的需求,医护人员应重视照顾者的需求,给予照顾者吞咽障碍知识指导、心理社会支持及延续性护理支持,提供专业且个性化的措施满足其合理需求,以提升照顾者的照顾能力,减轻其心身负担,促进患者康复.     

居家痴呆老人亲属照顾者支持性照护需求的研究

目的 :深入了解居家痴呆老人亲属照顾者的照护需求,从而为照顾者提供有针对性的支持服务提供参考。方法 :采用目的抽样法,选取北京市20位居家痴呆老人的亲属照顾者进行一对一深入访谈,采用Colaizzi内容分析法对资料进行整理分析,归纳主题。结果 :共归纳出2个主题,分别为替代性照护需求(家政服务、喘息照护服务、机构照护服务)和专业性支持需求(专业知识与技能指导、照顾者交流平台、痴呆老人康复服务、照顾者心理支持服务)。结论 :替代性照护和专业性支持是居家痴呆老人亲属照顾者照护需求的重要方面。应针对居家痴呆老人照顾者的照护需求为其提供有针对性的支持服务,从而减轻照顾者的负担,提高痴呆老人的照护质量。     

居家痴呆患者照顾者对综合干预的意见与建议

目的:了解痴呆患者照顾者对综合干预的意见与建议,为健康教育及护理干预提供依据.方法:根据临床操作经验拟定访谈提纲和计划,对18名痴呆患者照顾者进行访谈.结果:痴呆患者照料者认为综合干预能提高积极感受,减轻照料负担,但干预方式不够便捷、健康教育方式较单一,建议向社区化、多样化发展.结论:痴呆患者照顾者对综合干预效果较满意,但认为干预方式缺乏灵活性,应拓展社区干预服务,满足患者及照料者的多方位需求.     

认知行为疗法在痴呆患者家庭照顾者中的应用进展

随着老龄化进程的发展,痴呆患病人数呈上升态势。目前,痴呆患者主要由家庭成员提供照护,照顾者需要提供长期的照料工作,由于痴呆的长期性和不可治愈性,会增加照顾者的照护负担,容易对其身心造成不利影响。认知行为疗法作为一种心理干预方法,能有效改善痴呆患者家庭照顾者的焦虑、抑郁等负性情绪,降低其照护负担,促进身心健康,在痴呆患者家庭照顾者中显示出良好的效果。现就认知行为疗法的概念、干预形式,以及认知行为疗法在痴呆患者家庭照顾者中的应用现状及效果进行综述,以期更好地为痴呆患者家庭照顾者提供心理治疗,为进一步的研究提供参考依据。     

协同护理对脑卒中患者照顾者负担影响的调查分析

目的探讨协同护理对脑卒中患者照顾者负担的影响,并分析原因。方法将脑卒中患者随机分为对照组和观察组,各50例。对照组接受常规治疗及康复指导,观察组在此基础上接受健康宣教、知识指导等多种方式的协同护理干预。运用Zarit照顾者负担量表、照顾者压力量表评定照顾者的负担影响,日常生活活动能力指数评定患者的生活质量,并对影响因素进行分析。结果干预前,两组评分比较差异无统计意义(P0.05);干预后,观察组患者及照顾者的评分优于对照组,差异有统计学意义(P0.05)。结论协同护理干预可提高脑卒中患者的生活质量,降低照顾者的压力,护理人员应了解患者及照顾者的负担水平及原因,指导患者及照顾者养成良好的康复及生活习惯,以减轻其负担,促进康复。     

护理干预对减轻社区痴呆患者照顾者负担的效果分析

目的 评价护理干预对减轻社区痴呆患者照顾者负担的效果,为痴呆患者及其照顾者的社区干预提供理论支持.方法 将53例社区痴呆患者的照顾者依照随机数字表分为干预组和对照组,干预组给予1年的以问题为中心的知识宣教、技能指导、信息和情感支持以及压力应对方式指导等护理干预,对照组处于自然状态.采用照顾者负担问卷分别于干预前和干预后...     

痴呆患者自理能力与家庭照顾者照顾负担：照顾者照顾能力的中介作用

目的探讨痴呆患者家庭照顾者的照顾能力在患者自理能力和照顾者照顾负担间的中介作用, 为降低家庭照顾者照顾负担提供参考。方法选择2020年9月至2021年1月在山东第一医科大学附属省立医院和山东省精神卫生中心招募的113名痴呆患者的家庭照顾者为研究对象, 采用Barthel评定表、家庭照顾者照顾能力量表和Zarit照顾者负担量表调查痴呆患者的自理能力、照顾者的照顾能力和照顾负担。结果痴呆患者的自理能力得分为(75.19 ± 28.56)分, 照顾者的照顾能力和照顾负担得分分别为9.00(4.00, 15.00)、(33.78 ± 16.53)分。痴呆患者的自理能力与照顾者照顾能力及照顾负担呈负相关(r=-0.424、-0.420, 均P<0.01), 痴呆患者家庭照顾者的照顾能力和照顾负担呈正相关(r=0.605, P<0.01)。痴呆患者家庭照顾者的照顾能力在患者自理能力和照顾者照顾负担间的中介效应显著, 间接效应是-0.107, 总效应是-0.187, 间接效应占总效应的57.22%。结论痴呆患者家庭照顾者的照顾能力中介了患者自理能力和照顾者照顾负担间的关系, 是改善家庭照...     

痴呆病人照顾者负担相关因素的初步分析

由于痴呆病人记忆力和生活能力下降甚至丧失 ,以及社会生活功能障碍 ,痴呆病人常依赖他人照顾[1] 。目前我国多数痴呆病人在家里接受照顾[2 ,3 ] 。而长期照顾痴呆病人 ,照顾者身心健康受到极大的影响 ,他们感到负担沉重[4,5] 。虽然我国对痴呆的研究已经开始重视 ,但有关对痴呆病人照顾者负担的影响研究却很少[6] ,为此 ,本研究旨在了解我国居家痴呆病人照顾者负担的相关因素 ,为今后采取有针对性的干预措施 ,减轻照顾者负担提供依据。1　对象与方法1.1　研究对象研究对象为临床已被诊断为痴呆的病人照顾者 ,共 36例 ,照顾者需符合以下条件…     

居家痴呆病人照顾者需求调查研究

[目的]了解我国居家痴呆病人照顾者需求状况及相关因素.[方法]对108例居家痴呆照顾者进行需求问卷调查.[结果]痴呆病人照顾者需求是多方面的,痴呆病人因素中,年龄、婚姻状况、痴呆用药与照顾者需求呈正相关;而痴呆诊断时间、痴呆症状出现时间与照顾者需求呈负相关;照顾者文化程度与之呈正相关,参与照顾人员与需求呈负相关.[结论]在对痴呆病人照顾者提供支持过程中,不仅要注意照顾者的总体需求,还要注重照顾者的个体需求差异,采取有针对性的干预措施,减轻照顾者压力.     

主动脉夹层病人术后主要照顾者照顾体验的质性研究

[目的]了解主动脉夹层术后病人主要照顾者的照顾感受,为促进照顾者身心健康,提高其生活质量提供依据。[方法]釆用描述性现象学研究方法,对符合条件的8名主动脉夹层术后病人的照顾者进行深入访谈,并对录音资料及现场记录材料进行分析。对访谈资料反复阅读、分析、反思、分类和提炼。[结果]得出4个主题:照顾者心理负担和压力过重;疾病相关知识缺乏;心力交瘁,健康状况下降;经济负担沉重。[结论]了解主动脉夹层病人术后照顾者的照顾体验,为其提供积极的心理干预、专业知识与技能的指导,可以促进病人的康复,减轻家属的照顾负担。     

老年痴呆患者家庭照顾者的心理弹性及其影响因素

目的了解老年痴呆患者家庭照顾者的心理弹性水平,并分析其影响因素。方法采用方便抽样法选取2015年11月至2016年5月在武汉某三级甲等医院神经科记忆门诊就诊、神经科病房住院治疗以及在湖北省痴呆与认知障碍医学研究中心照顾者网络平台登录的180例患者及其照顾者为研究对象。采用自行设计的一般情况调查表、康纳-戴维森韧性量表、领悟社会支持量表对其进行调查。结果老年痴呆患者家庭照顾者的心理弹性总分为(24.83±7.58)分;老年痴呆患者的照顾者自觉健康状况、朋友支持、患者的病情程度、照顾者的文化程度及其他支持是老年痴呆患者家庭照顾者心理弹性的影响因素(均P0.05),共解释老年痴呆患者家庭照顾者心理弹性的44.8%。结论老年痴呆患者家庭照顾者的心理弹性水平处于中等偏低的水平,照顾者的自觉健康状况、朋友支持、患者的病情程度、照顾者的文化程度以及其他支持是影响照顾者心理弹性水平的重要因素。提示医护人员可有针对性地给予心理支持和干预,提高照顾者的心理弹性水平,改善其心理健康状况。     

“I just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study

BackgroundFamily caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers.ObjectiveThe aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs.MethodSemi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis.ResultsFive themes were identified within the data. The first theme represents caregivers’ overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers’ health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers’ unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves.ConclusionCaregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.     

Institutionalized elders with dementia: collaboration between family caregivers and nursing home staff in Taiwan

Aims and objectives. To explore the process of development of collaborative relationship between family caregivers of institutionalized elders with dementia and nursing home staff in Taiwan. Background. Evidence suggests that family members are continuously involved in the lives of loved ones and have not given up their roles as caregivers after the institutionalization of a family member. Little is known, however, about how family caregivers develop a collaborative relationship with nursing home staff, particularly in Asian countries. Design and methods. Grounded theory methodology was used. Data were collected via interviews and observations from 11 family caregivers of patients who were suffering from dementia and living in an institution for persons with dementia in northern Taiwan. Data were analysed by constant comparative analysis. Results. Findings revealed that ‘institutional social penetration’ was the process most used by family caregivers to achieve an harmonious collaborative relationship with the nursing home staff. Institutional social penetration is a dynamic process, which includes three components: self‐disclosure, evaluation of care and penetration strategies. Family caregivers, who had developed a ‘socially penetrating’ relationship with the nursing home staff, were more likely to disclose information in more breadth and depth, to receive positive care evaluations and to adopt multiple effective penetration strategies. Conclusions. Institutional social penetration between family caregivers and nursing home staff can sensitize healthcare providers to meet the family's needs during the placement of their loved one and provide a basis for developing intervention strategies. Relevance to clinical practice. Findings of this study may help healthcare providers to understand the ways in which collaborative relationships develop between the families of elders with dementia and nursing home staff. Interventions can be developed to facilitate self‐disclosure of both the family members and nursing home staff through timely feedback and familiarising family caregivers with different penetration strategies.     

Dementia patients: effective communication strategies

The importance of effective communication with dementia sufferers has grown with the increasing prevalence of this degenerative condition. Regardless of the presence of aphasia, the vocal tones and behaviors of dementia patients are meaningful, and may signal unmet needs. If caregivers ignore or fail to respond to these messages, more irritable or aggressive behaviors may result. Therefore, it is critical for caregivers to learn and apply appropriate communication strategies and skills with dementia patients. Based on a review of the literature, this paper provides guidelines for assessing dementia patients' residual communication ability and suggests strategies and skills for communicating with dementia patients. Evidence based guidelines are important for caregivers when communicating with dementia patients in order to achieve positive outcomes and high care quality.     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta‐ethnographic study

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta‐ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.     

Caregiver outcomes of a dementia care program

The University of California, Los Angeles Alzheimer's and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs’ behavioral and depressive symptoms improved. In addition, at one-year, overall caregiver depression, strain, and distress related to behavioral symptoms also improved. However, not all dyads enrolled in the ADC program showed improvement in these outcomes. We conducted a mixed qualitative-quantitative study to explore why some participants did not benefit and what could be changed in this and other similar dementia management programs to increase the percentage who benefit. Semi-structured interviews (N=12) or surveys (N=41) were completed with 53 caregivers by telephone, mail and online. Seven areas for potential program improvement were identified from the first 12 interviews. These included: recommendations that did not match caregivers’ perceived care needs, barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, behavioral recommendations that the caregiver felt did not work, and poor rapport of the dementia expert with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers (85%) reported that the program was very beneficial or extremely beneficial. Respondents identified the close, longitudinal relationship and access to a dementia care expert as particularly beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program.     

老年性痴呆家庭护理者的人口学信息及身心负担调查

[目的]了解老年性痴呆家庭护理者的自然、社会人口学信息及其在实施家庭护理过程中所承担的身体、精神负担。[方法]招募已被诊断为老年性痴呆病人的家庭护理者,通过电话采访录音及现场访问的方式完成统一问卷。[结果]老年性痴呆病人的家庭护理者以已婚中年妇女为主,教育程度及收入水平均较低,其中42%的受访者认为自己健康状况水平在下降,58%曾经有过负面情感的自我体验。[结论]老年性痴呆家庭护理者本身所承受的身体、精神负担应引起足够重视,可能最终影响到对病人的护理效果。     

Determinants of the discrepancy in patient‐ and caregiver‐rated quality of life for persons with dementia

Aims. To determine factors related to the discrepancy in patient‐ and proxy‐rated quality of life for patients with dementia; whether this discrepancy is associated with characteristics of patients, caregivers or the caregiver–patient relationship; and which characteristics best predict this discrepancy. Background. To increase the reliability of quality of life measurements for persons with dementia, many researchers have incorporated proxy reports. However, their investigations have indicated that caregiver‐rated quality of life is not the same as the patient’s own rating. The factors related to this discrepancy have previously been explored, but studies rarely focussed on the quality of the caregiver–patient relationship as a determinant of the discrepancy. Design. A cross‐sectional design was used. Methods. Data were gathered from community‐based interviews with 120 dyads of patients with Alzheimer’s disease or related dementia and their caregivers in Taipei. A structured questionnaire was used to collect data, and the main variable (quality of life–Alzheimer’s disease) was rated separately by patients and caregivers. The data were analysed using intraclass correlation coefficients and multivariate regression methods. Results. The agreement between patients’ and caregivers’ quality of life–Alzheimer’s disease ratings was low. This discrepancy was significantly associated with disturbing dementia behaviour, caregivers’ perceived distress for problem behaviours, caregivers’ overall quality of life and quality of the caregiver–patient relationship. Conclusions. The observed discrepancy between caregiver‐ and patient‐rated quality of life for persons with dementia was largely predicted by the quality of the caregiver–patient relationship. Relevance to clinical practice. Medical professionals should cautiously deliberate when using caregiver‐reported quality of life to substitute for patient‐reported quality of life. When using a proxy report or a combined caregiver–patient rating, medical professionals should assess the quality of the relationship between patient and proxy.     

老年痴呆照顾者对虐待老人认知的定性研究

目的深入了解老年痴呆照顾者对虐待老人的认知,为制定有针对性的干预措施提供依据。方法采用现象学研究方法,对10名老年痴呆家庭照顾者和8名机构照顾者进行深度访谈,运用Colaizzi的关于现象学资料的7步分析法分析资料。结果老年痴呆照顾者对虐待老人的认知可归纳为以下4个主题:(1)对虐待老人的理解局限,以有意的打骂和疏于照顾为主;(2)虐待老人的原因多为孝心、责任心缺失;(3)应通过自我约束减少虐待;(4)对虐待老人的危害性认识不足,大多以可见的躯体伤害为主,对痴呆患者受虐感知不确定。结论老年痴呆照顾者能够认识到虐待老人是错误行为,但对其缺乏全面的认识。对此,应加大相关知识的宣传力度,明确"虐待老人"的定义,提高痴呆照顾者对虐待老人的认知,通过法律和社会支持,减少虐待行为的发生。