广州地区29例血友病患儿家庭治疗及护理现状调查

目的了解广州地区血友病患儿家庭治疗与护理现状,提高家庭治疗与护理水平。方法对广州市血友病治疗中心登记在册的29例广州地区血友病患儿及其父母进行问卷调查,主要内容为患儿一般情况、2006年家庭治疗与护理现状及FISH评分（Functional Independence Score in Hemophilia）。结果只有少数血友病患儿开展凝血因子家庭注射,凝血因子使用量明显不足,治疗效果与血友病患儿家庭护理状况不佳、血友病患儿未能获取有效社会支持有关。结论血友病专业医护人员在指导家庭治疗和护理服务方面只发挥了有限的作用,对血友病患者的健康教育和护理与国际水平相比存在很大差距,缺乏有经验的血友病专业护士．缺少必要的医疗资源,未能建立起紧密的医患合作关系。     

家庭治疗和护理行为干预模式在血友病患儿中的应用

目的探讨适合地方血友病诊疗中心开展的儿童血友病家庭治疗和护理行为的干预模式。方法由血友病护士和2～18岁的血友病患儿及其父母组成护理干预小组,针对儿童血友病家庭治疗和护理中存在的问题进行讨论和归纳,通过文献回顾和专家咨询,制定综合性护理干预措施,包括个体化凝血因子注射培训指导、血友病知识讲座、血友病患儿家庭联谊会、家庭治疗护理行为随访等,并于干预前后对儿童血友病家庭治疗和护理行为进行测评比较,判断干预效果。结果干预后血友病患儿家庭的治疗和护理行为的测评显示,22个具体行为中,19个行为明显改善,干预前后比较,差异有统计学意义（χ2值分别为59．88,36．47,96．30,13．57,34．67,55．06,55．06,21．85,22．69,45．69,39．33,68．25,11．99,35．39,35．39,17．24,81．51,85．75,13．57;P〈0．01）;“准确记录每一次出血及处置经过”由干预前的2例（3．85％）上升至干预后的48例（92．31％）,“按月向血友病护士报告出血及治疗护理信息”由干预前的5例（20％）上升至干预后的52例（100％）,干预前后比较,差异均有统计学意义（χ2值分别为81．51,85．75;P〈0．01）。结论综合性护理干预措施可以在改善儿童血友病家庭治疗和护理的行为的同时实现血友病诊疗中心对血友病患儿病例信息的有效管理,适合在我国地方血友病诊疗中心开展。     

新疆维吾尔自治区48例血友病患儿家庭治疗护理现状调查

[目的]了解新疆维吾尔自治区居家血友病患儿的家庭治疗及护理现状,构建新型家庭治疗护理模式。[方法]通过回顾性调查,借助专家咨询法自行设计问卷,对新疆血友病诊疗中心登记在册的48名血友病患儿及其父母发放该问卷,问卷分为3部分,一般资料、家庭治疗的情况及血友病病人自理能力评分量表(Functional Independence Score in Hemophilia,FISH)评分。[结果]只有18.75%的血友病患儿开展凝血因子家庭注射,且伴有凝血因子的使用量明显不足等情况;由于经济及认知水平的原因,家庭治疗效果及家庭护理状况并不理想。[结论]应进一步加强专职护士培训,根据个体状况开展个性化综合关怀模式,才能有效提升家庭护理水平,提高患儿生活质量。     

A型血友病患儿家庭治疗护理状况回顾性调查分析

目的调查中国A型血友病4～18岁患儿家庭治疗和护理状况。方法 2006年、2010年两次对血友病家庭治疗和护理状况进行调查。结果 A型血友病患儿诊断年龄和治疗年龄晚于首次出血年龄;凝血因子用量不足;血友病性骨关节病患病率高;开展了家庭治疗的血友病患儿从55例上升到119例,血友病患儿及家庭对发病原因、遗传规律、出血严重程度的评估和正确服用止痛药物认知率分别从80.8%、78.5%、37.4%和48.4%上升到94.7%、94.1%、52.7%和85.5%;在开展家庭康复训练、保持治疗记录完整两方面没有明显改善。结论 A型血友病患儿诊断治疗延迟,凝血因子用量不足,骨关节病发病率高,家庭护理水平仍然有待于进一步提高。     

血友病病人家庭治疗现状及影响因素的质性研究

[目的]深入了解血友病病人家庭治疗现状,识别影响血友病病人家庭治疗的因素.[方法]运用质性研究方法,对7例血友病病人进行深入访谈,现场笔录,并运用类属分析法进行整理分析.[结果]血友病病人家庭治疗现状不容乐观,其主要原因有4方面,即血友病病人认同家庭治疗但不深刻、血友病病人及家属对家庭注射的恐惧、对医院的信任及经济原因.[结论]应建立起有效的血友病医疗护理网络,加强对血友病病人及家属的鼓励、监督及支持,让更多的血友病病人及家庭接受家庭治疗.     

基于儿童慢性病管理的医院志愿服务模式的建立

[目的]探索适合我国国情的医院志愿服务模式。[方法]医院联合社会公益组织,根据儿童血友病综合护理关怀工作的需要,遵照公益组织志愿者招募和管理的流程,规范招募并管理志愿者团队,以医护人员为主导,通过全程连续的医院志愿服务,改善血友病儿童家庭治疗和护理行为。[结果]152例血友病儿童家庭治疗和护理行为明显改善;凝血因子家庭注射和就近注射率逐年增长;血友病儿童的父母焦虑症状改善,生活质量提升;血友病儿童的关节出血率下降,生活自理能力提高。[结论]基于慢性病管理的医院志愿服务模式适合在我国医疗机构开展。     

血友病的家庭治疗

血友病的家庭治疗,是指患者本人或家属,在家庭或工作场所等地方,自己静脉注射血液制剂的一种治疗方法。其方法及制剂虽然非常简单,但它能够改变血友病患者的人生观,改善患者和医师之间的关系,是血友病患者真正自立于社会所需要的一种治疗方法。家庭治疗还是血友病综合治疗的一个重要组成部分,但也存在若干问题。最早开展家庭治疗的是芝加哥 MichaelReese 医院的 Rabiner 等人。以后,家庭治疗在世界上推广起来。根据世界血友病联合组织世界性咨询调查:1980年有27%的血友病患者接受了家庭治疗。1983年2月1日家庭治疗以健     

血友病综合关怀模式的发展现状

血友病综合关怀(Comprehensive Haemophilia Care)是指由一组多专业医护人员对血友病患者(People with hemo-philia,PWH)及家庭进行全面的治疗、护理及生活指导,其内容不仅是专业治疗的协调,还包括家庭治疗、患者与家庭的知识教育、心理咨询、社会扶助及长期的追踪管理等。其概念起源于20世纪40年代末期的英国,首个由综合团队组建的血友病治疗中心(Hemophilia Treatment Centre,HTC)网络于1976年在美国成立[1]。     

自我注射小课堂在血友病患者家庭治疗中的作用

通过自我注射小课堂对血友病家庭培训,使患者顺利开展家庭治疗。认为自我注射小课堂使血友病家庭掌握自我注射技巧,培训效果良好,且能扩大家庭治疗的覆盖面,值得推广应用。     

基层医院建立血友病小儿专科护理的必要性

针对基层医院血友病小儿护理现状及问题,在参考国外医疗机构血友病护理模式基础上,指出建立血友病小儿专科护理的必要性,借以提升其血友病评估、治疗、宣教、协调、扶持的规范化,提高血友病患儿的生存质量,减少残疾,促进血友病治疗及专科护理的更大发展。     

Ethical dilemmas in the pediatric hemophilia community

How can pediatric nurses best advocate appropriately and knowledgeably for patients with hemophilia in our rapidly changing health care system. This commentary raises many questions, questions that can provide the basis for discussion among parents, providers, and payors. Children with hemophilia have benefited greatly by the creation of comprehensive care teams that support home treatment (Butler, 1998). Ongoing excellence in home care can be achieved by parents' and patients' self-advocacy. The hemophilia community's self-advocacy has been so successful as demonstrated by the move to home care, self-infusion, and the Ricky Ray legislation. This community has an ownership of its preventive care and recognizes that federally funded centers of excellence exist by the use of the family's tax dollars and the patient's patronage. Hemophilia programs are a model for further examination for preventive self-care in other chronic disease states.     

Patient satisfaction in home health care

Aims and objectives. To assess the current use of patient satisfaction measures in home health care and to examine the reliability and validity of current measures of patient satisfaction in home health care. Background. Patient satisfaction has been one of the widely used measures in home health care as an indicator of quality of care. A few efforts have been made to develop psychometrically sound patient satisfaction scales for use in home health care. Design. A critical review of the literature. Methods. Electronic databases were systematically searched to identify the studies or publications that measured and addressed patient satisfaction and its measurement in home health care. Results. The review of the literature showed that patient satisfaction measures have been used in the evaluation of care programmes including rehabilitation programmes, discharge and home follow‐up programmes, care process and management practices. Also, patient satisfaction measures were used to evaluate new care protocols and treatments. Conclusions. Home healthcare agencies need valid and reliable patient satisfaction scales. Frameworks of patient satisfaction are still in their early developmental stage. Only some of the variables related to patient satisfaction are explained by many frameworks. Relevance to clinical practice. Home healthcare mangers and researchers need to take in consideration the reliability and validity of measures and tools of patient satisfaction.     

Emergency department care for patients with hemophilia and von Willebrand disease

Patients with bleeding disorders such as hemophilia A, hemophilia B, and von Willebrand disease (VWD) are routinely treated at home, with their care managed in specialized centers. In emergency situations, these patients often present to their local emergency department (ED), where their management can represent a challenge to the emergency physicians and staff who rarely encounter them. Delays in diagnosis and administration of replacement therapy are the factors most commonly identified as predictive of death. Patients and family members are often very well educated in the disease and its management, which can significantly reduce morbidity and mortality. Children with bleeding disorders confer different challenges to the emergency physician and staff: they may present with no obvious signs of trauma or they may present with bruises consistent with non-accidental injury. All possible causes of bruising/bleeding should be investigated, although treatment should be administered promptly. The initial presentation of a bleeding disorder in the pediatric population is often made in the ED. Treatment of hemophilia A and B requires rapid replacement of the deficient clotting factor, with the desired factor level and dosage dependent on the product used and the hemorrhagic situation encountered. In patients with VWD, the main treatments are desmopressin or intravenous infusion of plasma-derived concentrates containing factor VIII and von Willebrand factor. The aim of this review is to outline some of the issues facing emergency physicians and the options available for the treatment of patients with hemophilia A, hemophilia B, and VWD.     

近10年国内外老年居家护理研究热点的对比分析

目的探讨国内和国外老年居家护理研究热点的差异,为我国老年居家护理研究提供参考。方法基于CNKI、Web of Science核心合集,检索2010年1月1日—2020年7月8日收录的国内外老年居家护理相关文献,采用SPSS、COOC等软件对检索结果进行可视化分析。结果近10年国内和国外老年居家护理共同研究热点为健康教育、家庭照顾者、生活质量、老年痴呆、社区护理、长期护理。国内和国外学者对老年痴呆、长期护理研究的侧重点不同。近10年国内外老年居家护理研究热点差异体现在护理模式、家庭功能、老年人身心健康管理等方面,国内学者多关注老年人躯体疾患管理,国外学者在居家老年人疾病管理上更注重老年人健康管理、尊严等高维度需求的满足。结论近10年国内外老年居家护理研究热点差异主要集中在护理层面,国内注重疾病护理,国外更注重高维度的心理需求与健康水平管理;提示我国学者可以开展老年人高维度需求方面的现状调研,以及满足策略的相关研究。     

Classification tree model identifies home-based service needs of Japanese long-term care insurance consumers

ABSTRACT Objectives: To clarify care receivers' needs and unmet needs for home help or home nursing services during daytime and/or nighttime hours, and to identify the characteristic of elders who are most likely to need home care services. Design and Sample: We used a chi‐squared automatic interaction detection technique to analyze data from 92 care management researchers, who interviewed 280 caregivers. Measures: Demographic information, assessments of the statuses and service needs of elders. Results: We found that care receivers had more unmet needs at night than during the day. Daytime home help was needed by elders who (1) lived alone or (2) lived with just one person and whose primary caregiver was not their wife. Nighttime home help was needed by those who required assistance eating, and whose primary caregiver was male. Daytime home nursing was needed by elders who (1) received medical treatment instead of day care or (2) did not receive medical treatment, but had difficulty eating. Nighttime home nursing was needed by those who had unstable illnesses and whose medical treatments continued during the night. Conclusions: Our findings may help public health nurses assess community needs in order to effectively and efficiently manage health care resources.     

Homecare issues in rotavirus gastroenteritis

PURPOSE: This article will describe the burden of rotavirus gastroenteritis (RGE) and its management, highlighting educational issues that nurse practitioners can assist caregivers to enhance at-home management. DATA SOURCE: A Medline search of the medical literature was used to identify articles that describe the burden, clinical presentation, and management of RGE. CONCLUSIONS: RGE is a serious medical condition characterized by diarrhea and vomiting and is a major cause of morbidity and hospitalization among children aged 5 years or younger. Proper at-home treatment can be challenging; however, improved home care may limit emergency department visits and hospitalizations. IMPLICATIONS FOR PRACTICE: Mild to moderate RGE may be successfully managed at home if caregivers are adequately educated in deciding when a child needs to be evaluated in a physician's office and in managing dehydration at home.     

Home care personnel's perspectives on successful discharge of elderly clients from hospital to home setting

The successful discharge of elderly patients from hospital to home care is a process requiring co-operation between health and social care personnel in addition to their commitment and skills. During the discharge process it is important that health and social care professionals have a shared view of the health and mental status and needs of the patient so that appropriate plans for meeting these needs can be made. The aim of the study was to investigate home care personnel's (health and social care workers) views of which practices between the discharging hospital and home care are associated with the successful discharge of clients. Home care personnel in 22 Finnish municipalities (n = 1890, response rate 63%) received a questionnaire in spring 2001. When the respondents' background factors were standardized, the best predictors of successful discharge from the home care personnel's point of view were adequate information received about the treatment of the patient's illnesses and their functional ability and cognitive potentials, timely information about the discharge, and good co-operation between the discharging hospital, and the home care, social care and health care workers working in home care. There were differences in the opinions of social care workers and health care workers working in home care. From the home care personnel's point of view the most important correlates of an elderly client's discharge from hospital to a home setting were factors associated with how they can best plan their work. Their perspective on the discharge process may diverge from clients and their informal care givers point of view. To ensure the successful discharge process we must take them all into account.