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1.
People with intellectual disabilities are among the most disadvantaged groups in society. A literature review was conducted aiming to answer the following question: What are the palliative care needs of people with intellectual disabilities? The literature review covers case histories, morbidity and mortality patterns for people with intellectual disabilities, their healthcare needs and primary care provision, the way they may present symptoms, their conceptualization of illness and death and issues around education and training. While the literature review reveals a lack of empirical data around the palliative care needs of people with intellectual disabilities, a number of potential problem areas are highlighted. These include late presentation of illness, difficulties in assessing symptoms, difficulties in understanding the illness and its implications and ethical issues around decision making and consent to treatment. It is suggested that future studies will need to include the views and experiences of people with intellectual disabilities themselves. Areas for possible future development include symptom assessment, evaluation of current practice and access to services and the development of information and training materials.  相似文献   

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李超  杨明  牟笛  随海田  赵坚  孟郁洁  涂文校 《疾病监测》2014,29(11):925-928
目的分析2014年发生在西非地区的埃博拉病毒病(Ebola virus disease,EVD)疫情流行特征,为制定中国防控策略和措施提供科学依据。方法根据世界卫生组织公布的疫情相关资料,采用描述性流行病学方法对资料进行分析。结果 2013年12月至2014年9月13日几内亚(Guinea)、利比里亚(Liberia)、塞拉利昂(Sierra Leone)、尼日利亚(Nigeria)和塞内加尔(Senegal)5国共报告EVD病例4985例,死亡2461例,病死率为49%。截至目前疫情整体呈现为两个阶段,第一阶段为2013年12月至2014年4月,疫情主要集中在几内亚;第二阶段为2014年5—9月,疫情主要影响几内亚、利比里亚和塞拉利昂;除尼日利亚外,其余4国彼此相邻,大面积陆路接壤。尼日利亚疫情是由1名利比里亚患者输入导致的继发感染,而塞内加尔报告的是1例几内亚病例。截至2014年9月13日,5个国家中医务人员感染人数近300人(约占总病例数的6%),死亡超过140例。基因分析显示,引发此次疫情的病毒是埃博拉病毒中扎伊尔型(Zaire ebolavirus)的一个独立分支。结论 2014年发生在西非地区的EVD暴发疫情是自1976年发现埃博拉病毒(Ebola virus,EBOV)以来最大的一次暴发,同时也是西非地区首次报告EVD疫情,目前形势分析认为疫情可能仍将持续6~9个月。  相似文献   

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Midwives play an important role in guaranteeing mothers and babies' good health. However, standardisation and systematic management of midwifery are insufficient in China. This study reviews and compares the present situation of midwifery management and education in five representative countries located in North America, Europe and Oceania. Based on the experience of these countries, Midwifery development in China should continue to explore and develop midwifery university education, form a midwife professional title system, standardize midwife certification and management. And a quality midwifery environment should be created in order to enhance career attractiveness.  相似文献   

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Purpose:  This expository paper explores the literature related to the development of international nursing (or midwifery) curricula as a vehicle for studying relationship-building.
Background:  International nursing curriculum development can be interpreted as a sanctioned extension of transnational, cross-cultural, political and economic professional outreach activities.
Method:  Extensive literature searches were conducted in the CINAHL, ERIC, PsychINFO and ABI/INFORM Global databases of the key terms: relationship-building; international; curriculum development; and nursing.
Findings:  The review revealed developing international nursing curricula through cooperative partnerships between institutions of higher learning and/or international development agencies provides a vehicle to build international collegial relationships among nursing faculty and professionals worldwide. A summary is provided in a table.
Conclusions:  Relationship-building through the development of international nursing curricula merits focused investigation.  相似文献   

6.
Parenting by learning disabled persons is a highly emotive issue, eliciting arguments from both extremes. Many of the arguments against such parenting have their basis in eugenic theory, whereas those in favour, often cite human rights declarations, and philosophies such as 'normalization'. This review of the literature describes the chronological development of theory on the subject, spanning 1900 to the present day. It has become clear that, whereas parents with learning difficulties may be more predisposed to having problems, they can indeed perform as adequate parents, given appropriate training and support. This paper traces the development of current theory, through an in-depth discussion of the available literature.  相似文献   

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The ability to read and write can influence an individual's educational, communication, and vocational opportunities. Occupational therapists can assist children with physical disabilities to achieve literacy skills. By setting priorities and goals for each child, in conjunction with their parent(s), opportunities can be provided and technologies utilized to access literacy material and enhance the child's abilities to read and write. This extensive literature review provides clinicians with information on the factors that influence the development of literacy for children with physical disabilities. The expectations and priorities of parent(s) are critical determinants of whether opportunities will be provided for the child to learn to read and write. This article concludes with recommendations and strategies for the use of technology to help develop literacy skills, and future research questions for considerations.  相似文献   

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Purpose: This review summarized studies that used participatory photography with children with disabilities, including those with communication impairments, and described modifications made to the methodology to facilitate their participation in qualitative research.

Methods: In the fall of 2016, we searched Psycinfo (OVID), ERIC, CINAHL and Web of Science to identify studies that used participatory photography with children with disabilities. The search was repeated in January 2018 to retrieve any new publications. The first author extracted data that described the characteristics of each study and the modifications used.

Results: Of the 258 articles identified, 19 met inclusion criteria. Participants ranged from 4–21?years old and had a variety of disabilities. Study topics included education, leisure activities and adulthood. Researchers modified participatory photography to enhance accessibility by: modifying cameras; providing individual training; teaching consent through role play; allowing children to direct adults to take photographs; including additional forms of media; using diaries and questionnaires; providing individual interviews with simplified questions; using multiple forms of communication; and modifying how photographs are shared.

Conclusions: Participatory photography can be an effective method for studying the lived experiences of children with disabilities, particularly those with communication impairments. Methodological modifications can enhance the accessibility of this approach for this population.

  • Implications for Rehabilitation
  • Participatory photography may be an effective qualitative research method for learning about the perspectives and experiences of children with disabilities on a wide array of topics.

  • There are many specific modifications that researchers can use to support the inclusion of children with disabilities in participatory photography research.

  • The findings of studies that use participatory photography methodology may provide rehabilitation professionals with important insights into the lives of children with disabilities.

  相似文献   

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Background

In 2007 WHO/UNAIDS issued new HIV testing guidelines recommending ‘provider-initiated HIV testing and counselling’ (PITC). In contrast to existing ‘voluntary counselling and testing’ guidelines (whereby individuals self refer for testing), the PITC guidance recommends that, in countries with generalised epidemics, all patients are routinely offered an HIV test during clinical encounters. In sub-Saharan Africa, PITC aims to dramatically increase HIV testing rates so that PITC becomes a vehicle to increase access to HIV prevention and care. Nurses in this region work on the frontlines of HIV testing but have been neglected in related policy development.

Aim

To provide an overview of the PITC policy guidance and to critically consider its implications for the nursing profession in sub-Saharan Africa.

Methods

Policy documents and published and unpublished research were identified from organisational websites, electronic databases and conference proceedings.

Results

PITC has generated widespread debate about whether it is the right approach in a context of HIV-related stigma and lack of human/material resources. Key concerns are whether/how informed consent, privacy and confidentiality will be upheld in overstretched health care settings, and whether appropriate post-test counselling, treatment and support can be provided. Limited available evidence suggests that health systems factors and organisational/professional culture may create obstacles to effective PITC implementation. Specific findings are that:
PITC greatly increases nurses’ workload and work-related stress.
Nurses are generally positive about PITC, but express the need for more training and managerial support.
Health system constraints (lack of staff, lack of space) mean that nurses do not always have time to provide adequate counselling.
A hierarchical and didactic nursing culture affects counselling quality and the boundaries between voluntary informed consent and coercion can become rather blurred.
Nurses are particularly stressed by breaking bad news and handling ethical dilemmas.

Conclusion

Three areas are identified in which the PITC implementation process needs to be strengthened: (i) research/audit (to explore nurse and patient experiences, to identify best practice and key obstacles), (ii) greater nurse participation in policy development, (iii) strengthening of nurse training and mentoring.  相似文献   

15.

Background

Mortality studies can help reduce health inequalities by informing public policy through a better understanding of causes of death and comorbidities. Mortality studies often rely on Medical Certificates of Cause of Death (MCCD) for data.

Method

A systematic review was undertaken to identify the extent and nature of issues in recording causes of death for people with intellectual disability on MCCD.

Results

Fifteen of the 25 articles included in the literature review raised concerns about the accuracy of MCCD in identifying the cause(s) of death of people with intellectual disability. The most frequent issues were the under‐reporting of intellectual disability on MCCD, and listing intellectual disability or an associated condition as an underlying cause of death.

Conclusions

Concerns about the accuracy and reliability of MCCD for people with intellectual disability raise questions about mortality data based on MCCD. Clear guidance is required from WHO for those completing MCCD for people with intellectual disability.  相似文献   

16.
OBJECTIVE: Violence to disabled persons constitutes a major ethical problem. The European Academy of Rehabilitation Medicine has debated the matter; it presents this short report to alert a wider audience to the problem, with the aim of provoking debate and facilitating prevention. DESIGN: The Academy has produced a full report on the literature. The present short report summarizes the essential features of this and significant references to violence. This is defined, types described, and risk factors and signs identified with the aim of informing rehabilitation practitioners. CONCLUSION: Violence may take many forms, often being subtle, insidious and difficult to recognize. However, the members of the rehabilitation team may be able to provide significant help and act preventively as they work towards the better social integration of the disabled individual helping them gain more control of their lives. European legislation may help us in this task; we are reminded that our roles are set within the context of our civic duties of respect for and tolerance of all.  相似文献   

17.
summary . The high prevalence of numerous endemic and epidemic diseases such as malaria, HIV infection and viral hepatitis in some areas of sub-Saharan Africa (SSA) affects the health status of blood donors. Considering the difficulties in ensuring sufficient and safe blood supply, analysing epidemiological factors that impact blood donors in this community may further bring light on issues of supply and safety, and help in planning for its rational use. This review does not aim to propose new strategies but describes the main characteristics of blood donors in SSA as collected from different reports. Data were mainly obtained from the reports of the World Health Organization and national blood transfusion programmes and also from relevant literature and conference reports. Several characteristics are common in blood donors, such as the predominance of young adult males, the high frequency of Transmission-transmitted Infections (TTIs) and some erythrocytic phenotypes. The data indicate variations in the level of improvement of blood collection and blood safety from one area to another, particularly in the field of donor motivation or screening strategies for TTIs. These data could be useful to supplement previous reports and to provide updates for governments and international organizations' programs involved in the improvement of blood safety in Africa.  相似文献   

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Background: This review explored the sustainability of health and physical activity-based outcomes following exercise trials that were conducted for people with disabilities, and characterised the influence of technology and behaviour change strategies.

Methods: A total of 132 studies were screened from an existing database.

Results: Only 22 studies featured follow-up periods and met eligibility criteria. At follow-up, studies typically reported at least one significant health outcome that was maintained (n?=?18/21; 86%). However, significant health outcomes accounted for only 32% of the total volume of outcomes that were measured at follow-up. For physical activity-based outcomes, six studies (n?=?6/8; 75%) reported that intervention gains were maintained throughout follow-up. The incorporation of technology or behaviour change strategies appeared to be linked with sustainable intervention effects.

Conclusions: Overall, some evidence demonstrated that post-intervention effects were sustainable. However, the strength of the evidence was weak and several existing gaps in knowledge were identified. Moreover, most studies did not focus on sustainability, but instead emphasised short-term effects of exercise participation on health and physical activity outcomes. Study findings call for greater research and programme efforts to maintain health, function, and physical activity behaviour after supports provided by research studies are removed.

  • Implications for rehabilitation
  • Short-term exercise programmes may require additional strategies designed specifically to enhance the sustainability of exercise outcomes and physical activity participation.

  • Incorporating technology within exercise interventions may enhance the likelihood of sustaining health and function outcomes.

  • Exercise programmes framed within behaviour change theory can equip individuals with the appropriate strategies necessary to maintain their physical activity participation.

  相似文献   

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