A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home‐based palliative and end‐of‐life care to people with advanced cancer. Background. Modern hospice care has led to increases in home‐based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. Design. Systematic review. Methods. Eligible articles were identified via electronic searches of research and evidence‐based databases, hand‐searching of academic journals and searches of non‐academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non‐randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically‐focussed information, improvements in quality and increased methods of dissemination. Conclusion. Synthesis of the literature suggests that home‐based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home‐based care. Evidence suggests that nurses and other health providers may better assist home‐based carers by providing the information and skills‐training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.     

造血干细胞移植并发移植物抗宿主病患者皮肤护理的最佳证据总结

目的 检索、评价并整合国内外关于造血干细胞移植并发移植物抗宿主病患者皮肤护理的相关证据。方法 根据“6S”模型,系统检索国内外计算机决策支持系统、指南网、相关专业学会或机构网站、综合数据库,筛选与造血干细胞移植并发移植物抗宿主病患者皮肤护理相关的文献,包括指南、临床决策、证据总结、系统评价、专家共识,检索时限为建库到2022年5月。由6名研究人员对文献进行质量评价、证据提取及整合。结果 共纳入15篇文献,其中临床决策2篇、指南6篇、专家共识5篇、系统评价2篇。从多学科合作、皮肤评估、护理措施、健康教育4个方面汇总13条最佳证据。结论 该研究系统整合了造血干细胞移植并发移植物抗宿主病患者皮肤护理的相关证据,可为相关指南和临床实践规范的制订提供循证依据。在应用证据时,建议护理人员综合考虑临床实际情况及患者意愿,审慎地选择证据。     

Support interventions for caregivers of physically disabled adults: A systematic review

In developing countries family caregivers are an important community‐based resource who provide care for physically disabled adults. Substantial caregiving commitment is known to adversely affect caregiver health and thereby their capacity to provide ongoing care. This systematic review focused on support interventions for caregivers using Thailand as an example. From 1964 to 2011 international and Thai electronic databases and relevant grey literature were searched. Six English papers and 34 Thai papers published between 1990 and 2010 were found. The Critical Appraisal Skills Programme (CASP) tool was modified to appraise methodological quality. All nurse‐led interventions mainly focused on improving caregiving capacity; nearly half considered caregiver health. Only 15 interventions were community‐based. Despite variable research quality all studies showed benefits for caregivers, care recipients, and healthcare services. In developing countries without healthy caregivers physically disabled adults would not receive care. There is an urgent need for further investment in community‐based research to develop effective interventions designed to promote caregiver health and help them maintain their role.     

Exploring professional caregivers' perceptions. Balancing self-care with care for patients with Alzheimer's disease

With the are hundreds of studies about caregiver burden related to family caregivers that exist, little has been written about caregiver burden as it pertains to professional caregivers. The purpose of this study was to explore professional caregivers' perception and meaning associated with their caring for patients with Alzheimer's disease (AD). Twenty-two professional caregivers were interviewed. Content analysis was used to clarify respondents' interview data. Several themes emerged from the data related to beliefs about choosing and maintaining AD caregiving role, beliefs about self-efficacy, commitment and self-satisfaction, nature of family interaction of individuals with AD, grieving responses, and ability to maintain self-care through social support as well as solitary time. Implications include AD professional burden measurement; study related to recruitment, orientation, and staffing patterns; and effect on the quality of care provided to patients and their families.     

The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer's disease (AD) and Parkinson's disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.     

Burden, coping and needs for support of caregivers for patients with a bipolar disorder: a systematic review

This study was aimed to highlight the factors which influence experienced burden, coping and needs for support of caregivers for patients with a bipolar disorder. Research articles meeting content and methodological quality criteria from January 1995 through October 2005 were reviewed. High objective and subjective burden is experienced by these caregivers. Subjective burden is extremely influenced by illness beliefs. High burden is associated more with severity of symptoms (than diagnosis), difficulties in the relationship with patient, lack of support and stigma. Coping is influenced by appraisal and burden. Different phases in the process of caregiving require different coping mechanisms. Little research is available on effectiveness of coping mechanisms and needs for support. Suggestions are nevertheless found in the literature for professional support. Caregivers of patients with a bipolar disorder experience high burden and try to cope in different ways. Little research is available on coping styles and needs for support. However, recommendations can be made to increase support for these caregivers.     

精神分裂症患者照顾者感受的质性研究

目的 了解精神分裂症患者照顾者在看护期间内心深处的感受.方法 采用质性描述中的深度访谈法,收集15名照顾者的访谈资料,并用现象学分析法进行分析.结果 采用类属分析法升华出照顾者看护体验的6个的主题概念：心理负担过重;经济负担过重;缺乏看护经验;以患者为中心的无自主权;康复知识缺乏;照顾经历中获得积极愉快的心理感受.结论 护士应深入了照顾者内心深处的感受,给予他们家庭护理的专业指导,提高家庭护理质量,促进患者全面康复更快回归社会.     

Is There a Role for Palliative Services and Supportive Care in Managing Advanced Penile Cancer?

ObjectivesWe aim to review the benefits of palliative care, describe why a palliative approach to care is needed for patients with advanced penile squamous cell carcinoma and propose ways in which oncology nurses can improve access to and provision of palliative care.Data SourcesA review of the literature was performed and identified a range of randomized trials and systematic reviews regarding the benefits of palliative care in this patient group. Cohort studies of patients with penile cancer were used to describe the psychosocial and physical disease burden of penile cancer.ConclusionThroughout each phase of penile cancer and its treatment, oncology nurses can engage in care that goes beyond cancer-directed treatments to address the whole person, thereby improving quality of life by delivering person-centered palliative care in line with individual needs.Implications for Nursing PracticeOncology nurses are in key positions to explore many concerns that patients with penile cancer have for themselves or their caregivers. Through speaking directly with patients and caregivers, oncology nurses can uncover sources of distress, assess for unmet needs, and advocate for improved primary palliative care or early referral to specialty palliative care teams.     

无肝素连续性肾脏替代治疗体外循环凝血预防及管理的最佳证据总结

目的 总结无肝素连续性肾脏替代治疗（continuous renal replacement therapy, CRRT）体外循环凝血预防及管理的最佳证据,为临床护理工作提供参考。方法 根据循证护理的方法确定问题,检索澳大利亚JBI循证卫生保健中心、国际指南协作网等指南网站,中国知网、PubMed等中英文数据库以及国际肾脏病学会和中华医学会肾脏病学分会等专业领域学术网站中关于CRRT体外循环的相关证据,包括临床实践指南、临床决策、专家共识、最佳临床实践、证据汇总及系统评价。通过文献质量评价,对符合质量标准的文献进行证据提取及整合。结果 共纳入10篇文献,包括临床指南1篇、专家共识2篇、证据综合1篇和系统评价6篇,最后从风险评估、血管通路、耗材选择、抗凝方式、参数设置、过程监测6个方面形成了30条最佳证据。结论 临床上行无肝素CRRT时,可结合具体的临床情境,参考最佳证据,降低体外循环凝血的发生,为患者提供专业的护理。     

Dutch Physiotherapy Guidelines for Low Back Pain

Many guidelines for the management of low back pain in primary care have been published during recent years, but guidelines for physiotherapy do not yet exist. Therefore, physiotherapy guidelines have been developed, reflecting the consequences of the current state of knowledge of effective and appropriate physiotherapy for low back pain. They aim to improve the efficiency and effectiveness of physiotherapeutic care for patients with low back pain.The guidelines were constructed on the basis of the phases of the physiotherapy process, using the Dutch method of developing physiotherapy guidelines. Scientific evidence of systematic reviews was used as the basis for the recommendations. A computerised literature search of Medline, Cinahl, the Cochrane Database of Systematic Reviews and the Database of the Dutch National Institute of Allied Health Professions was conducted to identify relevant systematic reviews. If no evidence was available, consensus between experts was obtained.The guidelines were pilot tested among one hundred physiotherapists and reviewed by an external multi-disciplinary panel.The guidelines recommend that the diagnostic process should focus on disability and participation problems resulting from back pain. The treatment should consist of an active approach, in which the patients learn to take control over their back pain. For patients with a normal course, where activities and participation gradually increase, reassurance, adequate information and advice to stay active are the most important recommendations. For patients with an abnormal course, where activities and participation do not increase, exercise therapy should also be provided, with a behavioural approach if necessary.These are the first national physiotherapy guidelines for low back pain. The recommendations are largely in line with other primary care guidelines for low back pain. Implementation will be a major challenge for the near future.     

Analysis of caregiver burden in palliative care: An integrated review

The inclusion of caregivers in a holistic care approach represents a basic principle in palliative care. However, many palliative care professionals have a lack of understanding of difficulties or unmet needs among caregivers. To enhance the quality of life of caregivers and the quality of care for patients, healthcare professionals should be better informed about the constructs of caregiver burden. The aim of this study is to synthesize the concept of caregiver burden in palliative care, providing implications for the caregivers and their support systems. This concept analysis study adopts the integrative review approach and the basic text analysis method (ie, word frequency). The PubMed, CINAHL, Embase, and PsycINFO databases are explored for eligible studies. From this literature search, 66 articles from 1998 to 2018 are located. After data collection is completed, the two authors independently evaluate the quality of studies published before 1 September 2018. The caregiver burden is then redefined with its attributes, antecedents, consequences, empirical referents, and facilitators. It is recommended that the multidimensional concept of caregiver burden in palliative care be measured by considering caregiver characteristics and the caregiving context.     

回族老年2型糖尿病患者主要照顾者照顾感受的质性研究

目的 了解回族老年2型糖尿病患者主要照顾者的照顾感受,旨在为制订符合回族文化特征的老年2型糖尿病患者护理方案提供借鉴。 方法 采用半结构深度访谈法,对15名回族老年2型糖尿病患者主要照顾者进行访谈。 结果 提炼4个主题：爱的体验、老年及女性照顾者负担较重、回族文化及生活习俗对疾病的影响、对社会支持系统的感恩与期望。4个主题中包括8个亚主题。夫妻的角度：感恩,照顾是一场修行;儿女的角度：反哺,爱的回馈;老年照顾者忽略自己的健康;女性付出较多;悲伤不是主旋律;习俗与健康的冲突;感恩国家,看病负担较轻;糖尿病知晓率低,希望获取专业的照顾支持。 结论 回族老年2型糖尿病患者主要照顾者负担感受较轻,老年和女性照顾者负担较重,照顾感受和照顾行为受到回族文化和生活习俗的影响;主要照顾者疾病相关知识缺乏、传统文化与健康饮食有冲突,希望得到符合其文化特征的护理支持。     

痴呆患者主要照顾者睡眠障碍研究进展

当前，伴随着痴呆患者群体的日益庞大，痴呆患者主要照顾者的照顾负担和睡眠障碍问题也愈发突出，严重影响到了照护质量，并可能导致照顾者本人出现焦虑、抑郁、心血管疾病等一系列近期和远期健康问题。本综述将重点探讨痴呆患者主要照顾者睡眠障碍的发生现状、影响因素和干预措施，结果发现照顾者的睡眠障碍问题受生理、心理、社会及痴呆患者的疾病进展等多种因素的综合影响，主要的治疗措施包括针对生理因素的光照疗法、针对心理因素的正压减压疗法、针对社会因素的社会支持疗法以及运动锻炼的综合治疗干预方案等。未来，研究者应考虑将多种睡眠障碍测量工具进行整合应用并相互验证，建立一套完善的诊疗评估体系，创造性的开发针对照顾者生理、心理、社会的综合干预治疗方案，并与社区医疗服务协调配合，探索开发整合跨医疗团队、社会医疗服务机构的综合医疗保健系统，为痴呆患者主要照顾者提供全面系统的医疗护理保障。     

精神发育迟滞患者亲属照顾者真实体验的质性研究

目的了解精神发育迟滞患者亲属照顾者在看护期间内心深处的感受,有针对性地给予看护技能指导。方法采用质性描述中的深度访谈法收集14名照顾者的资料,并用现象学分析法进行分析。结果精神发育迟滞患者亲属照顾者看护体验主要有4个主题：沉重的心理压力;经济负担过重;缺乏看护经验;以患者为中心的无自我决定权。结论护士应深入了解精神发育迟滞患者亲属照顾者内心深处的感受,使他们得到家庭护理能力的专业指导和社会的帮助。     

The Role of Family Caregivers in the Care of Older Adults with Cancer

ObjectivesTo provide an overview on the role of family caregivers (FCGs) in the care of older adults with cancer and review quality of life needs for FCGs.Data SourcesJournal articles, research reports, state of the science papers, position papers, and clinical guidelines from professional organizations were used.ConclusionThe high prevalence of multiple comorbidities and the associated burden of geriatric events in older adults have a substantial impact on the quality of life of their FCGs. Practical and efficient models of comprehensive assessment, interventions, and caregiving preparedness support are needed to improve outcomes for both older adults with cancer and their FCGs.Implications for Nursing PracticeOncology nurses practicing in clinical and research settings have a responsibility to prepare themselves with evidence-based knowledge and resources to include the needs of FCGs in the care provided to older adults with cancer.     

居家精神分裂症患者直接照料者负担及相关因素

目的 探讨居家精神分裂症患者直接照料者所承受的负担及其影响因素.方法 应用问卷对106名精神分裂症患者的直接照料者进行调查.结果 精神分裂症患者直接照料者经济、心理方面的负荷较大.经配对t检验,经济负担、心理健康因子与其它因子两两之间的差异均具有统计学意义(P＜0.05).与常模相比,直接照料者更多采用消极应对方式,并与照料者负担呈正相关(P＜0.05);照料者负担还与患者的病程、康复状况、生活满意度、家庭关怀度指数相关(均P＜0.05).结论 应重视精神分裂症患者直接照料者负担,指导其采用积极应对方式,加强其家庭支持系统,积极鼓励患者自理,以减轻直接照料者负担.     

国际失智护理研究热点可视化分析

目的 整体把握近5年国际失智护理研究态势,为国内失智护理研究提供思路。方法 检索2013—2018年收录于Web of Science核心合集数据库中的相关文献,借助Cite Space对国际失智护理领域内的研究机构、核心期刊、被引文献、高频词进行可视化分析。结果 当前国际失智护理研究领域主要以荷兰为首的西方国家占主导;核心期刊主要有《Journal of the American Geriatrics Society》、《International Journal of Geriatric Psychiatry》等刊物;关键词共现聚类分析共得出失智患者安全管理、晚期失智的姑息治疗、家庭照顾者负担、神经精神症状管理等4个国际研究热点。结论 国际失智护理研究热点对国内相关领域的研究具有一定的启示作用,建议循着本研究得出的热点,深入探寻失智护理研究的立足点,以推进我国失智护理事业的发展。     

Family caregiver burden by relationship to care recipient with dementia in Korea

The purpose of this study is to compare demographic and clinical characteristics of caregivers and care recipients by caregiver type (i.e., daughter, son, daughter-in-law, and spouse) and to compare the caregiver burden among each type of caregiver. A cross-sectional survey design was used involving 157 primary family caregivers and their care recipients who were diagnosed with dementia. Participants were from the Korean capital and the surrounding suburbs. Spouse caregivers rated themselves as having poorer health and less social support than adult child caregivers did. Those cared for by daughters-in-law were older and demonstrated more memory and behavioral problems than those by spouses, sons, or daughters. Spouses perceived the highest burden among caregivers. Nursing interventions could be developed on the basis of the specific type of burden that various caregivers experience. For future studies, exploring the earlier marital relationship between spouse caregiver and care recipient would be useful for understanding the burden of spouse caregivers.