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。     

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。     

血友病儿童家庭治疗现状调查

[目的]探讨血友病儿童家庭治疗现状。[方法]采用自行设计的血友病病人家庭治疗状况调查表对28例血友病患儿家属进行问卷调查。[结果]开展血友病家庭治疗的病人占调查者的28.57%,21例患儿的父母不愿将孩子的病情公开,患儿凝血因子使用量明显不足。[结论]为血友病患儿争取必要的医疗资源是提高其生活质量的关键。医护人员应为血友病家庭提供急需的培训和监管指导。     

血友病儿童家庭治疗现状调查

[目的]探讨血友病儿童家庭治疗现状。[方法]采用自行设计的血友病病人家庭治疗状况调查表对28例血友病患儿家属进行问卷调查。[结果]开展血友病家庭治疗的病人占调查者的28．57％，21例患儿的父母不愿将孩子的病情公开，患儿凝血因子使用量明显不足。[结论]为血友病患儿争取必要的医疗资源是提高其生活质量的关键。医护人员应为血友病家庭提供急需的培训和监管指导。     

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。     

国外血友病家庭治疗和护理管理现状

归纳了近年来国外家庭治疗和护理管理的主要进展,即国外家庭护理观点的演变、患者管理,分析了患者评估、资料管理、患者对血友病知识及对家庭治疗、护理和自我管理的需求.在此基础上,对我国血友病家庭治疗和护理的前景进行了展望.     

儿童血友病家庭治疗开展现状调查

[目的]探讨我国儿童血友病家庭治疗开展情况。[方法]采用自制儿童血友病家庭治疗执行情况调查表对91例血友病患儿家长进行调查。[结果]40例(44.0%)血友病患儿开展家庭治疗,其中血友病甲35例,血友病乙5例。患儿年龄、病程、上学阶段和父亲学历是开展家庭治疗的影响因素。操作者以病人母亲为主,其次是病人家庭中从事医务工作的亲友、病人本人和病人父亲;操作者的学习途径除医务工作亲友的专业学习外,主要包括医生或者护士传授、自学(书籍或网络等);家长对于静脉输液操作技术和应急处理知识掌握正确率较低。51例(56.0%)患儿家庭没有开展家庭治疗,未掌握操作技能(35.3%)是第1位原因。[结论]现阶段血友病患儿开展家庭治疗的比例不高,要加强输液操作技术和安全管理,多关注年龄小的患儿、病程较短以及父亲学历较低的家庭。     

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。     

甲型血友病病人的家庭护理体会

<正>血友病是一组因遗传性凝血因子生成障碍引起的出血性疾病,以幼年发病,自发或轻度外伤后出血不止,软组织、肌肉和负重关节出血为特征,以甲型血友病为常见。由于血友病是终生疾病,家庭护理至关重要。自1990～2005年,本人护理过5位甲型血友病患者,总结得出提供积极有效的家庭护理是降低血友病伤残率、提高生活质量的有效措施。     

7例以鼻出血为首发症状的血友病患儿的护理

总结了7例小儿以鼻出血为首发症状的血友病患儿的护理。其中包括出血的观察护理、输注凝血因子的观察护理、输注红细胞制剂的观察护理、预防出血的护理、心理护理及家庭护理。认为在住院期间做好常规的护理,并做好心理护理和家庭护理,让患儿和家长消除恐惧焦虑心理,可以减少患儿出血的次数,改善血友病患儿的生活质量。     

Technology-dependent children and their families: a review

Background. Advances in medical technology and nursing care have enabled children who rely on long‐term medical and technical support to reunite with their families and community. The impact of discharging these children into the community involves a number of unprecedented social implications that warrant policy consideration. To begin with, an effort must be made to understand the phenomenon of caring for technology‐dependent children living at home. Aim. The aim of this paper is to provide a comprehensive literature review on caring for technology‐dependent children living at home. Methods. The review was conducted via keyword searches using various electronic databases. These included CINAHL, MEDLINE, Social Science Index, Sociological Abstracts, Australian Family and Society Abstracts, and the Australian Bureau of Statistics. The articles and books found were examined for commonality and difference, significant themes were extracted, and the strength of the research methods and subsequent evidence were critiqued. Findings. In this paper, themes relating to home care for technology‐dependent children and their families are elucidated and summarized. These are: chronic illness and children; the impact of paediatric home care on children; the uniqueness of technology‐dependent children and their families; and parents’ experience of paediatric home care. Discussion. Contentious issues, relevant to the social life of these children and their families, are raised and are discussed with the intention of extending awareness and provoking further debate among key stakeholders. These issues include: the changed meaning of home; family dynamics; social isolation; saving costs for whom?; shifts in responsibility; and parent–professional relationships. Conclusion. More research is needed in the arena of paediatric home care, to facilitate relevant policy formation and implementation.     

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.     

Patients' Status at Home Care Discharge

This study describes patients' status following home care nursing discharge, and explores the relationship of sociodemographic characteristics, medical conditions and nursing needs to patients' status at discharge. The sample consisted of 367 adult patients receiving nursing services from a certified home health agency. The majority (61 percent) of patients could manage independently or only with the help of family providers at home care nursing discharge. The rest (39 percent) required at least some help from community service providers, were institutionalized or had died. Patients' discharge status was more closely related to nursing needs such as nursing problems, functional status and coping ability than to medical conditions.     

影响老年慢性病患者接受居家护理服务因素的调查分析

目的了解老年慢性病患者居家护理服务的需求,探讨影响老年慢性病患者接受居家护理服务的因素。方法采用自行设计的调查问卷了解老年慢性病患者居家护理服务需求及影响老年慢性病患者接受居家护理服务的因素。结果老年慢性病患者居家护理服务需求为92．3％。医保因素、经济因素和照顾者素质是影响老年慢性病患者接受居家护理的重要因素,分别占了95．5％、84．8％和80．3％。结论老年慢性病患者居家护理需求较大。应以患者需求为导向,通过政府和机构的多方面合作,完善医保支付制度,在疾病护理及完善服务模式方面促进健康拓展服务,以满足老年慢性病患者对居家护理的需求。     

护理院潜在服务对象对护理院的入住需求及影响因素

目的 探索护理院潜在服务对象对护理院入住需求及其影响因素.方法 采用自行设计的护理院需求调查表,采用便利抽样的方法 对188例患者进行问卷调查.结果 188例研究对象中,179例患有慢性病,占95.21%;70例存在各类健康问题,占37.23%;97例生活不能完全自理,占51.60%.目前,即有护理院入住需求的有36例...     

A population approach to understanding children's access to assistive technology

Purpose.?To determine whether service delivery system factors, including having a quality medical home, access to therapeutic services, or enrolment in early intervention/special education services, are associated with meeting children's needs for assistive technology (AT).

Method.?Data were analysed for children 0–17 years of age participating in the 2001 US National Survey of Children with Special Health Care Needs who required AT services (N = 18,372) and a subgroup of children needing assistive devices typically provided by rehabilitation professionals (N = 4429). AT needs included vision or hearing aids or care, communication or mobility devices, or other medical equipment. Unmet need was defined as not receiving all needed services. Estimates were generated of the per cent of children needing and having unmet needs for services. Associations between the medical home, therapy and education variables and having an unmet need for AT were assessed using logistic regression.

Results.?An estimated 49% of children with special health care needs require AT services. Twelve per cent require AT services typically provided by rehabilitation professionals. Of the latter group, 14% had unmet needs. The likelihood of having unmet AT needs was greater for children lacking a quality medical home (a.O.R. = 3.27 [95% C.I. = 2.29–4.66]) and/or those not receiving needed therapy services (a.O.R. = 3.52 [95% C.I. = 2.25–5.48]) than for children whose medical home and therapy service expectations were met. Enrolment in early intervention/special education was not associated with having unmet needs for AT.

Conclusions.?Promoting quality care within a complex service delivery system is critical to meeting the AT needs of children and their families. Changes in the structure and processes of care, including facilitating access to a quality medical home and needed therapy services would likely increase access to needed AT.