Family carers

家庭照顾者
  • 文章类型: Journal Article
    背景:老年人的过渡性护理对于非正式护理人员(看护者)来说可能会带来很大压力,特别是当他们不参与卫生从业人员的准备和计划时。这项研究旨在确定护理人员对名为TRANSITION工具的工具的潜在可接受性和可用性的看法,以支持老年人从医院过渡到家庭的准备和计划。
    方法:探索性定性。
    方法:半结构化访谈于2020年3月至2021年10月进行。2022年7月举行了一个焦点小组,以寻求更多信息和支持数据饱和。共有23人参加。对数据进行了主题分析。
    结果:参与者以四个主题解释了他们对该工具的看法:(1)过渡工具具有价值,但健康从业者提出的问题;(2)过渡工具将是有用的和可接受的,但不是所有的照顾者;(3)与健康从业者的互动是使用工具和沟通的障碍;和(4)承认我们作为护理团队的一部分。
    结论:虽然发现该工具具有潜在价值和实用性,只有当保健医生重视和尊重护理人员时,它才会为他们提供支持。医疗保健组织需要领导才能支持对老年人及其护理人员的真正护理,并使卫生从业人员有时间进行过渡护理沟通。
    结论:研究结果表明,TRANSITION工具可以通过提示护理人员在出院准备期间与健康从业者进行沟通,从而为他们提供重要的护理领域。
    BACKGROUND: Transitional care of older adults can be highly stressful for informal carers (carers) particularly when they are not involved in preparation and planning with health practitioners. This study aimed to ascertain carer perspectives about the potential acceptability and usability of a tool entitled the TRANSITION tool to support preparation and planning for the transition of an older adult from hospital to home.
    METHODS: Exploratory qualitative.
    METHODS: Semi-structured interviews were undertaken between March 2020 and October 2021. A focus group was conducted in July 2022 to seek additional information and support data saturation. A total of 23 participants took part. Data were thematically analysed.
    RESULTS: Participants explained their perspectives about the tool in four themes: (1) the TRANSITION tool has value, but health practitioners ask the questions; (2) the TRANSITION tool would be useful and acceptable, but not for all carers; (3) interacting with health practitioners is a barrier to using the tool and to communication; and (4) recognising us as part of the care team.
    CONCLUSIONS: While the tool was found to have potential value and utility, it would only be expected to support carers when they are valued and respected by health practitioners. Leadership is required in healthcare organisations to support genuine care for older adults and their carers, and to enable health practitioners to have time for transitional care communication.
    CONCLUSIONS: The findings from the study suggest that the TRANSITION tool could support carers by prompting them about important areas of care to include in communication with health practitioners during discharge preparation.
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  • 文章类型: Journal Article
    背景:在英国,很大一部分老年人生活在农村/偏远地区。越来越多的人死在家里,需要家人的照顾。对农村/偏远地区老年人的家庭照顾者在生命的最后一年的经历知之甚少。
    目的:探索在英国农村地区支持/帮助老年人的现任和失去亲人的家庭照顾者的经历。
    方法:使用半结构化访谈和反身主题分析方法的定性方法。
    方法:在生命的最后一年,对农村/偏远老年人的家庭照顾者进行了访谈。参与者是通过国家支持服务招募的,第三部门组织和社交媒体。
    结果:对20名家庭照顾者进行了访谈。大多数是女性(n=17),年龄52-80岁。由于本地区劳动力和技能短缺,家庭照顾者在农村/偏远地区获得保健和社会照顾方面遇到困难。更广泛的社区帮助完成了实际任务,并使护理人员感到不那么孤单。社区服务,比如日托,有助于为护理人员提供喘息的机会,并促进老年人的有意义的活动和社会包容。虽然互联网接入有问题,家庭照顾者通过社交媒体和远程医疗服务获得了远程支持。
    结论:农村/边远地区老年人最后一年的家庭照顾者重视来自更广泛社区的支持。需要进一步的工作,以了解姑息治疗和劳动力分配的公共卫生方法如何支持农村/偏远护理人员和老年人。
    BACKGROUND: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life.
    OBJECTIVE: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life.
    METHODS: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods.
    METHODS: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media.
    RESULTS: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services.
    CONCLUSIONS: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.
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  • 文章类型: Journal Article
    背景:痴呆症患者及其家庭照顾者可能会受益于非药物干预措施,包括身心(MB-)实践,它可以通过诱导放松来改善身心健康。本系统审查概述了MB做法的可用性和效果。
    背景:作者在PubMed中进行了系统的搜索,Embase,Emcare,WebofScience,科克伦图书馆,PsycINFO,中国国家知识基础设施和学术搜索总理,2024年2月1日。关于痴呆症患者和/或其家庭护理人员的MB实践的研究论文,中文,日本人,德语,如果有全文,则包括法文和荷兰文。选择包含的文章,数据提取和方法学质量评估由两名研究人员进行.
    结论:在纳入的130项研究中,100(77%)是高质量的。中医(TCM)和对痴呆症患者的触摸干预,家庭照顾者的冥想分别改善了认知和神经精神症状,和心理健康。缺乏其他甲基溴做法的证据与少量研究有关,分散使用结果测量和混合结果。
    结论:MB实践显示出可喜的结果。我们建议对痴呆症患者实施和进一步研究TCM和触摸干预措施,并对家庭护理人员进行冥想。我们建议对一组的有希望的结果进行交叉研究,以在另一组中进行研究。
    BACKGROUND: People with dementia and their family carers may benefit from non-pharmacological interventions, including mind-body (MB-) practices, which can improve physical and mental health by inducing relaxation. This systematic review provides an overview of availability and effects of MB-practices.
    BACKGROUND: The authors performed a systematic search in PubMed, Embase, Emcare, Web of Science, Cochrane Library, PsycINFO, China National Knowledge Infrastructure and Academic Search Premier on February 1, 2024. Research papers on MB-practices for people with dementia and/or their family carers in English, Chinese, Japanese, German, French and Dutch were included if a full text was available. Selection of included articles, data extraction and methodological quality assessments were conducted by two researchers.
    CONCLUSIONS: Of the 130 included studies, 100 (77 %) were of high quality. Traditional Chinese Medicine (TCM) and touch interventions for people with dementia, and meditations for family carers resulted in improvements in respectively cognition and neuropsychiatric symptoms, and mental health. Lack of evidence for other MB-practices is related to small numbers of studies, fragmented use of outcome measures and mixed findings.
    CONCLUSIONS: MB-practices showed promising results. We recommend implementation and further research of TCM- and touch interventions for people with dementia as well as meditations for family carers. We suggest a cross-over of the promising results of one group to be studied in the other group.
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  • 文章类型: Journal Article
    这项系统的文献综述研究了有关在线计划对智障人士的家庭照顾者的心理健康和福祉的有效性的证据。数据库(ERIC,Medline,搜索PsycINFO和CINAHL)的干预研究,这些研究考虑了针对智障人士的家庭护理人员的在线干预措施。使用标准化数据提取工具提取数据。使用Cochrane偏倚风险工具对随机试验(RoB2)进行偏倚评估。筛选,偏见的提取和评估由研究小组的两名成员独立完成.鉴于纳入研究的数量较少,并且其中评估的结果不同,不可能进行荟萃分析;因此,数据以叙述方式呈现。两项研究符合纳入审查的标准。两项研究均采用可行性随机对照试验方法。一项研究发现父母的压力显着下降,而另一个发现心理健康显着增加。在得出坚定的结论时必须谨慎,鉴于两项研究的样本量小,保留率低。在线计划似乎为智障人士的家庭照顾者提供了潜在的好处。然而,需要进一步调查以检查这些计划,采取与家庭照顾者合作的方式。
    This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.
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  • 文章类型: Journal Article
    背景:印度的智障人士患病率很高。尽管他们的患病率较高,他们得到的支持很差。因此,本综述旨在探讨印度家庭照顾者为智障儿童提供照顾的经验.
    方法:进行了定性证据综合,搜索数据库,如MEDLINE,CINAHL,WebofScience,以及截至2023年10月的PsycInfo。灰色文献也搜索了未发表的研究,由两名审稿人评估方法学质量。11项符合条件的研究,主要是定性的设计,包括在审查中。数据综合遵循专题方法。
    结果:综合发现了代表家庭照顾者的经验和观点的五个主题。这些是“韧性和接受度”,\'父母回应\',\'护理动态\',\“准备过渡到成年\”和\“父母的倡导”。
    结论:家庭照顾者持有不同的观点,虽然几乎所有人都认为提供复杂而具有挑战性的护理,很少有积极的经验。
    BACKGROUND: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India.
    METHODS: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach.
    RESULTS: The synthesis found five themes representing family carers\' experiences and perspectives. These were \'resilience and acceptance\', \'parental response\', \'care dynamic\', \'preparing for transition to adulthood\' and \'parental advocacy\'.
    CONCLUSIONS: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.
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  • 文章类型: Journal Article
    家庭护理人员对于使痴呆症患者在自己的家中寿命更长至关重要。对于这些照顾者来说,与临床医生聊天-被同情地倾听并得到安慰-可以被视为不是偶然的,但对支持他们很重要。本文通过重新检查最初收集的数据来记录护理人员对危机应对团队质量的看法,从而考虑并确定了这种关系工作对家庭护理人员的重要性。这表明聊天,对于家庭照顾者来说,包括三个相关的特征:(i)家庭照顾者通过对一个人不断变化的、有时具有挑战性的需求和行为做出反应,生活在不稳定的平衡中;(ii)照顾者非常喜欢与来访的临床医生“聊天”;(iii)虽然照顾者喜欢这些聊天,他们可能会高度批评危机应对小组参与其中的制度化特征。
    Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers\' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person\'s changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate \'chatting\' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team\'s involvement with them.
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  • 文章类型: Journal Article
    背景:生活在一起的人,或者照顾某人,在获得诊断并尝试获得适当支持时,罕见形式的痴呆症可能会遇到问题。这会影响他们的健康,生活质量,社会关系和就业状况。本研究利用基于艺术的叙事方法来探索这些经历的个人经历,同时探索如何,在讲述他们的故事时,那些受罕见痴呆症影响的人可能会调用,并将他们的故事与,围绕痴呆症和疾病的更广泛的文化叙事。
    方法:通过视频会议软件与参与者进行了半结构化访谈(N=27),生活在一起,或者照顾某人,一种罕见的痴呆症.参与者使用线条图来描绘他们从最初的症状到现在的旅程,然后是提示口头叙述他们的经历。所有采访笔录和线条图都经过了叙述分析。然后对四套成绩单和图纸进行了更深入的分析。
    结果:分析揭示了护理伙伴和有诊断的人所遇到的斗争,同时导航一个并不总是了解他们需求的健康和社会护理系统。这通常会导致个人感到孤立和缺乏支持。帐户还描述了该过程带来的身份挑战。诊断的时刻也是在复杂的光线中绘制的。个人在获得理解时找到了安慰,但在认识到即将到来的挑战时感到恐惧。参与者将自己的说法与主流文化叙事相对照,围绕对认知障碍和痴呆症的良好支持,同时也展示了他们在追求正确护理方面的影响力。
    结论:使用线条画,除了叙事采访,允许参与者讲述复杂的,有时不合时宜,关于困难经历的故事,同时也在反思,并附加意义,他们。这些故事突显了医疗保健服务方面的紧迫差距,并揭示了个人为改善这些问题而采取的各种集体行动。最后,在对参与者提供服务的一些要素进行建模时,这些叙述指出了服务可能进入的未来方向。
    BACKGROUND: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness.
    METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis.
    RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care.
    CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants\' service provision which were working, the narratives pointed to future directions services might move in.
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  • 文章类型: Journal Article
    痴呆症患者及其家庭照顾者可能面临许多不同的风险;这些风险可能与,和对彼此的影响。由于痴呆症带来的能力变化,有诊断的人可能对代表他们做出的与风险有关的决定过于谨慎,这可能会对他们的健康和生活质量产生负面影响。本文旨在教育社区护士在与受痴呆症影响的家庭合作时需要注意的风险,并提出了一个风险支持框架,作为以人为中心的方式评估和管理风险的一种方式。
    People with dementia and their family carers may be subject to a number of different risks; these risks may overlap with, and impact on one another. Due to changes in capacity that come with dementia, people with the diagnosis may be overly cautious about decisions made relating to risk made on their behalf, and this may have a negative impact on their wellbeing and quality of life. This article aims to educate community nurses on the risks they need to be aware of when working with families affected by dementia, and presents a risk enablement framework as a way of assessing and managing risk in a person-centred way.
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  • 文章类型: Journal Article
    本文提供并概述了可能为痴呆症患者及其家庭护理人员提供的社区支持服务。作者介绍了痴呆症,包括诊断对痴呆症患者和更广泛的家庭的影响。使用案例研究方法,作者描述了可用的支持,涵盖卫生和社会护理以及第三部门组织。他们讨论了这种支持如何使痴呆症患者及其照顾者保持健康并应对痴呆症的影响。这篇文章将引起社区护士的兴趣,以及更广泛的健康和社会护理专业人员,他们可能会在社区环境中遇到受痴呆症影响的家庭。对可用的支持以及如何获得支持有很好的了解,将使社区护士能够利用提供给他们的健康促进机会,当他们在日常实践中与受痴呆症影响的家庭接触时。
    This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.
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  • 文章类型: Journal Article
    背景:围绕痴呆症患者的永久住宿护理安置的决定可能会带来压力和痛苦;但是,在安置前提供有针对性的信息和支持可能有助于护理人员更好地应对。本混合方法研究旨在检验其可行性,可接受性,以及提供量身定制的潜在好处,个人咨询计划(住宅护理过渡模块),通过视频会议交付,在向永久住宿护理过渡期间,向患有痴呆症的亲戚的澳大利亚家庭照顾者。
    方法:共有18名家庭照顾者被随机分配接受咨询干预(在12周内进行了6次治疗)或入住电话。由训练有素的过渡顾问提供。两组都收到了有关住宿护理的帮助单,应对安置,管理感情。护理人员完成了关于压力的在线调查,内疚,内疚焦虑,抑郁症,悲伤,并支持基线和基线后四个月的护理。看护人员亦获邀参加半结构化离职面谈,在完成后续调查后进行。与招聘有关的过程数据,保留,干预剂量和分娩通过日志收集。使用描述性统计和重复测量ANOVA分析定量数据。定性数据,关于可行性,可接受性,以及该计划的感知好处,使用医学研究理事会开发的“框架”方法进行分析,以告知复杂干预措施的过程评估。
    结果:定性研究结果表明,参与者认为在过渡期内实施咨询计划是可行和可接受的。通过视频会议交付被认为是方便和可接受的,技术问题很少。过渡顾问的技能和知识被认为是重要的影响机制。虽然没有统计学意义,在减少护理人员的压力和负罪感以及改善对护理的支持方面,确定了有希望的定量结果。
    结论:在向住院护理过渡期间,通过视频会议向痴呆症患者的家庭照顾者提供量身定制的咨询计划是可行且可接受的。该计划有可能改善对家庭照顾者的过渡支持。
    背景:本研究在澳大利亚新西兰临床试验注册中心ACTRN12621001462875注册。
    BACKGROUND: Decisions surrounding the permanent residential care placement of people living with dementia can be stressful and distressing; however, providing access to targeted information and support prior to placement may help carers better cope. This mixed methods study aimed to test the feasibility, acceptability, and potential benefits of providing a tailored, individual counselling program (the Residential Care Transition Module), delivered via videoconferencing, to Australian family carers of a relative with dementia during the transition to permanent residential care.
    METHODS: A total of 18 family carers were randomly allocated to receive either the counselling intervention (six sessions delivered over 12 weeks) or a check-in call, delivered by a trained Transition Counsellor. Both groups received help-sheets about residential care, coping with placement, and managing feelings. Carers completed online surveys about stress, guilt, anxiety, depression, grief, and support for caring at baseline and four months post-baseline. Carers were also invited to participate in semi-structured exit interviews, conducted after follow-up surveys were completed. Process data relating to recruitment, retention, intervention dose and delivery were collected via logs. Quantitative data were analysed using descriptive statistics and repeated measures ANOVA. Qualitative data, relating to feasibility, acceptability, and perceived benefits of the program, were analysed using the \'framework\' approach developed by the Medical Research Council to inform the process evaluation of complex interventions.
    RESULTS: Qualitative findings indicated that delivery of the counselling program during the transition period was deemed by participants to be feasible and acceptable. Delivery via videoconferencing was deemed convenient and acceptable, with few technical issues. The skills and knowledge of the Transition Counsellor were perceived to be important mechanisms of impact. Though not statistically significant, promising quantitative findings were identified in terms of reduced carer stress and guilt and improved support for caring.
    CONCLUSIONS: Delivery of a tailored counselling program via videoconferencing to family carers of people living with dementia during the transition to residential care was feasible and acceptable. The program has the potential to improve transitional support to family carers.
    BACKGROUND: This study was registered in the Australian New Zealand Clinical Trials Registry: ACTRN12621001462875.
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