北京市视力残疾人的流行病学特点和康复需求分析

目的 对北京市视力残疾人的流行病学特点和康复需求进行分析,探讨更有效的视力康复对策.方法 以第二次全国残疾人抽样调查北京市确定的视力残疾555例为研究对象,运用统计描述、对比分析和多因素分析等统计方法,得到北京市视力残疾人的致残状况和康复现状与需求.结果 调查的视力残疾人中四分之三为60岁以上人群.白内障、视网膜和脉络膜疾病以及青光眼是导致视力残疾的前三位原因.尽管89.4%的被调查者曾经接受过医疗服务与救助,但医疗服务仍是北京市视力残疾人最迫切的需求,占视力残疾人的82.0%.只有36.6%的视力残疾人对辅助器具有需求,11.9%的视力残疾人对康复训练有需求.曾接受辅助器具的视力残疾人为26.7%,而曾接受过康复训练者仅占5.8%.不同年龄阶段和不同残疾程度的患者对康复的需求存在差异.结论 北京市视力残疾人缺乏对康复知识的了解;应普及视力残疾康复知识,促进眼科医生参与康复工作,加强社区康复服务.     

北京市六类残疾人康复需求现状分析

目的 了解北京市残疾人的康复需求及服务现状.方法 采用统计描述和统计推理对北京市第二次残疾人抽样调查中确诊为六类残疾4852名残疾人的康复需求数据进行分析,据此推测北京市总体康复需求现状.结果 城市残疾人的康复意识和康复需求均高于郊区残疾人,儿童对康复训练的需求最高占75.23%,老年人对辅助器具和与医疗服务的需求最高,分别是57.05%和66.86%;一级、二级残疾人以社区和家庭康复为主;三级、四级残疾人以机构康复为主.视力和肢体残疾人对机构康复的需求较大,分别为85.23%和59.91%;76.95%的智力残疾人有社区和家庭服务的需求;精神、视力和肢体残疾人的医疗服务需求较高,分别是92.80%、86.77%和68.24%;听力残疾人对辅助器具的需求高达83.09%;智力、言语和精神残疾人对康复训练与服务的需求分别是84.36%、77.42%和62.82%.除医疗服务外,残疾人对其他方面的需求与救助均较低.结论 残疾人的需求和曾接受服务之间有较大差距,应加强宣传,促使残疾人树立正确康复观.     

Teaching medical students about disability and rehabilitation: methods and student feedback

The predicted increase in the prevalence of chronic and disabling diseases in the population over the next 30 years calls for a more effective approach to educating medical students about the assessment and management of disability. The introduction of a new postgraduate medical course at Flinders University of South Australia in 1996 allowed the development of a new topic on disability and rehabilitation. Over a 4-week period, students undertake four activities. First, they follow a particular patient in an inpatient rehabilitation setting and learn about the multidisciplinary approach to rehabilitation. Secondly, they each visit two people with a disability living in the community and assess their physical, mental, functional and social status. Thirdly, they each visit a service which supports those people in the community. Finally, they simulate having a disability which is randomly allocated to them. During these 4 weeks, students also participate in problem-based learning (PBL) and have 27 h of associated sessions or lectures. The PBL cases and associated sessions have a 'chronic disease' theme. We developed a questionnaire to obtain student feedback on this new topic in the first 2 years of its delivery. A 69% response rate has been obtained. Overall, the topic was well-received, and as a result most students felt more comfortable in dealing with disabled people. They were enthusiastic about ward work, and enjoyed learning about aspects of multidisciplinary team care. Exercises involving simulation of disability were largely acceptable. We believe that this topic helps our students to deal better with the problems of disabled people.     

上海金山工业区残疾人“1+1+1”家庭医生签约服务效果评价

目的 了解上海市金山工业区家庭医生的康复服务能力情况以及“1+1+1”家庭医生签约服务后残疾人机体功能改善、满意度、医疗费用支出情况,为后续精细化干预提供支持。 方法 通过自拟问卷于2016年8－10月和2017年8－10月调查金山工业区14名家庭医生基本情况及掌握康复服务技能种类等以及733名残疾人的基本人口学信息、残疾特征信息和机体功能改善情况、满意度情况和医疗支出情况等。 结果 14名家庭医生年龄集中在20~50岁,均具有多种康复服务技能,能为残疾人提供个性化的“1+1+1”签约服务。733名残疾人男女性人数比为1.08:1,肢体残疾人数最多,为334人(45.57%),残疾等级中四级残疾人数最多,共342人(46.66%)。“1+1+1” 家庭医生签约上门服务人数和康复治疗人数较家庭医生制团队服务分别增加130人和312人。接受“1+1+1”家庭医生签约服务后,186名(25.38%)残疾人机体功能改善,47名(6.41%)残疾人机体功能恢复。签约残疾人满意度有一定提升,满意和非常满意人数总和由签约前的585人(79.81%)升至签约后的714人(97.41%)。签约残疾人医疗费用则呈现下降趋势,同比下降22.82%。 结论 “1+1+1”家庭医生签约服务能够提升残疾人对康复服务的满意度,改善残疾人机体功能,降低残疾人医疗支出。     

What is community-based rehabilitation? A view from experience

This paper argues that unless community-based rehabilitation (CBR) programmes acknowledge the complexities of working in diverse communities with their unique cultural, religious, social and economic conditions, they will not be able to meet the needs of service provision for people in developing countries. An examination of some of the main aspects that form the essential components of CBR, the realities of the manner in which they interact, and the way they should interact is presented from experiences of CBR services initiated by the Spastics Society of Eastern India, in West Bengal, India.Keywords: community-based, unique cultures, integration, demystify, flexible, partnerships, nurture, marganalized, beliefs, challenging     

Health promotion for persons with disabilities: moving beyond rehabilitation

Abstract Persons with disabilities are at significant risk for additional or secondary disabilities. Because of this increased risk, especially for persons suffering from the "disuse syndrome," it is important that a comprehensive health promotion component is included in the rehabilitation program for disabled individuals. Current concepts of disability are discussed as well as the distinctions between primary and secondary disabilities. Specific types and causes of disabilities are identified and described. Each type of secondary disability is assessed in terms of its "preventability." Examples and characteristics of quality programs for health promotion for disabled persons are presented. Recommendations for further research and study are discussed to include the need for determining effective components of successful programs and ways to encourage the field of rehabilitation to incorporate health promotion into the rehabilitation process for its disabled clients.     

Unmet health and rehabilitation needs of people with long‐term neurological conditions in Queensland,Australia

The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long‐term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi‐structured interviews with 65 participants comprising 25 long‐term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client‐centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community‐based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.     

Disabled people and professionals differ in their perceptions of rehabilitation needs

BACKGROUND: This study set out to explore whether there are systematic differences in unmet needs for rehabilitation services and resources as identified by disabled people and nominated key professionals. METHODS: A cross-sectional interview survey of 87 pairs of community-dwelling disabled people (aged 16-65) and their nominated key professionals was conducted in southern England. The Southampton Needs Assessment Questionnaire (SNAQ) was used to examine unmet needs and the Office of Population Censuses and Surveys (OPCS) Disability and Severity Scale to examine level of disability. RESULTS: Eighty-seven pairs of disabled people and their nominated key professionals participated. People were severely disabled (median OPCS score 8; interquartile range 6-9). Disabled participants reported significantly more unmet needs than did professionals. There was zero concordance on identified unmet needs between disabled participants and professionals in 56 per cent of cases. Concordance between disabled participants and professionals was significantly better if the disabled participant had reported more unmet needs. There was a trend for general practitioners to be poorer at reporting disabled participants' needs than other professionals. There was fair agreement between disabled participants and professionals in five areas of unmet need only (in descending order): adaptations, physiotherapy, equipment, assistance with 'non-care' activities and the use of a day centre. In all the other areas of unmet need the agreement was poor. CONCLUSIONS: Needs for rehabilitation services and resources (for disabled people) are perceived differently by disabled people and professionals. Until we know who is right about rehabilitation needs, it is important to determine both users' and providers' views when planning and commissioning services.     

A study of human resource competencies required to implement community rehabilitation in less resourced settings

Background

It is estimated that over one billion persons worldwide have some form of disability. However, there is lack of knowledge and prioritisation of how to serve the needs and provide opportunities for people with disabilities. The community-based rehabilitation (CBR) guidelines, with sufficient and sustained support, can assist in providing access to rehabilitation services, especially in less resourced settings with low resources for rehabilitation. In line with strengthening the implementation of the health-related CBR guidelines, this study aimed to determine what workforce characteristics at the community level enable quality rehabilitation services, with a focus primarily on less resourced settings.

Methodology

This was a two-phase review study using (1) a relevant literature review informed by realist synthesis methodology and (2) Delphi survey of the opinions of relevant stakeholders regarding the findings of the review. It focused on individuals (health professionals, lay health workers, community rehabilitation workers) providing services for persons with disabilities in less resourced settings.

Results

Thirty-three articles were included in this review. Three Delphi iterations with 19 participants were completed. Taken together, these produced 33 recommendations for developing health-related rehabilitation services. Several general principles for configuring the community rehabilitation workforce emerged: community-based initiatives can allow services to reach more vulnerable populations; the need for supportive and structured supervision at the facility level; core skills likely include case management, social protection, monitoring and record keeping, counselling skills and mechanisms for referral; community ownership; training in CBR matrix and advocacy; a tiered/teamwork system of service delivery; and training should take a rights-based approach, include practical components, and involve persons with disabilities in the delivery and planning.

Conclusion

This research can contribute to implementing the WHO guidelines on the interaction between the health sector and CBR, particularly in the context of the Framework for Action for Strengthening Health Systems, in which human resources is one of six components. Realist syntheses can provide policy makers with detailed and practical information regarding complex health interventions, which may be valuable when planning and implementing programmes.

     

DEVELOPING A RURAL COMMUNITY-BASED DISABILITY SERVICE: (I) SERVICE FRAMEWORK AND IMPLEMENTATION STRATEGY

ABSTRACT: In response to widely recognised dilemmas associated with rehabilitation and disability service provision in remote and rural areas of Australia, a community-based, participatory approach to service development was adapted for a disability service project in central Queensland. The service framework, known as Community Based Rehabilitation (CBR), fosters the involvement of community members in disability service provision. Although this framework has been described previously, few guidelines exist regarding appropriate implementation of such an approach. Consequently, the implementation strategy known as Participatory Rural Appraisal (PRA) was adopted. Participatory Rural Appraisal has been reported to foster the participation and decision-making of community members in community projects. The present article describes the application of this implementation strategy to disability service provision in a relatively under-resourced rural shire. The rationale, framework and process of the pilot are described. A subsequent publication will document the service component, detail evaluation findings and describe the long-term outcomes of this research.     

Survey of the teaching of disability and rehabilitation to medical undergraduates in the UK

The objective of the following survey was to attempt to establish to what extent the undergraduates in medical schools in the UK were being exposed to structured teaching of disability and rehabilitation (i.e. seminars, lectures, group discussions). A questionnaire and covering letter were sent to 25 medical schools exploring how the teaching was performed and whether it utilized the active involvement of disabled people and/or their carers. It also attempted to ascertain the degree of interdisciplinary teaching occurring. Results showed that rheumatology, general practice and geriatrics were predominantly responsible for this teaching, with little structured teaching in ENT and ophthalmology. Five schools (25%) reported back that no structured teaching was occurring in any department. As expected, there was a larger proportion of positive responses on opportunistic teaching (ward rounds, outpatients). Additional invited comments on the questionnaire revealed a variety of innovative activities taking place in different medical schools. It is recognized that a questionnaire of this nature has limitations; nevertheless, it did reveal gaps in the teaching of disability and rehabilitation, with several responses indicating that excess pressure on the curriculum from other subjects left little or no space at the present time. Our survey suggests that disability and rehabilitation are given insufficient emphasis in undergraduate teaching. In particular, more active involvement of patients and their carers should be encouraged. The small proportion of schools which teach rehabilitation as a defined specialty no doubt reflects the inadequate academic structure at present in this field.     

Learning from lives together: medical and social work students’ experiences of learning from people with disabilities in the community

The study aims to evaluate an interprofessional community‐based learning event, focussing on disability. The learning opportunity was based on the Leicester Model of Interprofessional Education, organised around the experiences and perceptions of service users and their carers. Programme participants were drawn from medicine and social work education in Leicester, UK, bringing together diverse traditions in the care of people with disabilities. Small student groups (3–4 students) worked from one of the eight community rehabilitation hospitals through a programme of contact with people with disabilities in hospital, at home or in other community settings. The evaluation, in March 2005, used a mixed methods approach, incorporating questionnaire surveys, focus group interviews with students and feedback from service users. Responses were collated and analysed using quantitative and qualitative measures. Fifty social work and 100 medical students completed the first combined delivery of the module. The findings indicated that the merging of social work and medical perspectives appear to create some tensions, although overall the student experience was found to be beneficial. Service users (16 responses) valued the process. They were not concerned at the prospect of meeting a number of students at home or elsewhere and were pleased to think of themselves as educators. Problems and obstacles still anticipated include changing the mindset of clinicians and practising social workers to enable them to support students from each other’s disciplines in practice learning. The generally positive outcomes highlight that disability focussed joint learning offers a meaningful platform for interprofessional education in a practice environment.     

Medicine, gender, and disability: disabled women's health care encounters

In this article I examine the intersection of gender and disability in the medical arena by considering disabled women's experiences of receiving health care in the United Kingdom. Drawing on the "social model of disability," I focus on the attitudes and practices of doctors. I use two sources of qualitative data: (i) 68 disabled women's narratives gathered in the United Kingdom in 1996-1997; (ii) interviews with 17 disabled women regarding their reproductive experiences in the United Kingdom. I suggest that disabled women health service users are at risk of experiencing oppressive medical practices because two forces of oppression appear to be frequently, and interactively, in play: patriarchy and disablism.     

深圳市罗湖区残疾人群健康现状及卫生服务需求调查分析

目的了解深圳市罗湖区残疾人群健康状况及卫生服务需求与利用,为提高残疾人群健康状况及提供适当的卫生服务提供科学依据。方法对罗湖区登记在册的残疾人群进行健康体检,整群抽样问卷调查两个街道 残疾人群卫生服务需求与利用并对结果进行分析。结果本次调查中健康体检与抽样问卷调查残疾人群的年龄、残疾等级、残疾类型经统计学检验差异无统计学意义(P>0.05)。深圳市罗湖区残疾人群的高血压、超重或肥胖、贫血、高血脂、高血糖、阴道炎病患病率分别为22.78%、44.85%、7.20%、40.58%、21.65%、55.09%,其中高血压、超重或肥胖、贫血、高血脂患病率随残疾等级增加而增高(P<0.05)。残疾人群两周患病率为53.12%,半年慢性病患病率为32.03%,两周就诊率为57.81%,年住院率为22.92%,且均随年龄增加而增高(P<0.05);两周患病率一级残疾人群明显高于二级残疾人群(P<0.01);半年慢性病患病率男性高于女性(P<0.05);两周就诊率四级残疾人群高于二级残疾人群(P<0.01);年住院率男性高于女性(P<0.01),多重残疾人群高于精神残疾人群(P<0.01)。康复需求率为51.04%,不同残疾类型需求率不同。 结论深圳市罗湖区残疾人群是一个高血压、超重或肥胖、高血脂、高血糖及妇女病高发的人群,卫生服务需求高但利用率却较低,有必要据此采取有针对性的措施,提高残疾人群健康水平。     

Exploring the personal reality of disability and recovery: a tool for empowering the rehabilitation process

People experiencing disability and chronic disease often feel powerless, relinquishing medical control to "more knowledgeable" professionals. This article presents qualitative and quantitative results from three individual patients experiencing an emerging procedure called Recovery Preference Exploration (RPE). To inspire greater patient involvement, self-direction, and individual choice, we instructed participants to create an imagined recovery path, exposing recovery preferences while learning about clinical rehabilitation concepts. Results uncovered important values and feelings about disability, providing a richer context for patient evaluation and treatment goal modification. Applying mixed methods, RPE is presented as an explanatory process for quantifying recovery preferences in a way that stimulates rich narrative of how people see different types of disabilities. RPE shows promise for increasing depth of discussions among patients, family, and clinicians. RPE may promote greater quality of life through patient empowerment by directed learning, increased communication, and enhanced self-knowledge.     

A systematic review of the effectiveness of alternative cadres in community based rehabilitation

ABSTRACT: BACKGROUND: The Millennium Development Goals (MDGs) aim to improve population health and the quality and dignity of people's lives, but their achievement is constrained by the crisis in human resources for health. An important potential contribution towards achieving the MDGs for persons with disabilities will be the newly developed Guidelines for Community Based Rehabilitation (CBR), launched in 2010. Given the global shortage of medical and nursing personnel and highly skilled rehabilitation practitioners, effective implementation of the CBR guidelines will require additional health workers, with improved distribution and a new skill set, allowing them to work across the health, education, livelihoods, social, and development sectors. METHODS: We conducted a systematic review to evaluate existing evidence regarding the effectiveness of alternative cadres working in CBR in low and middle income countries. We searched the following databases: PUBMED, LILACS, SCIE, ISMEAR, WHOLIS, AFRICAN MED IND. We also searched the online archive of the Asia Pacific Disability Rehabilitation Journal (available from 2002 to 2010), which was not covered by any of the other databases. There was no limit set on inclusion with regard to how recent a publication was in the general search. RESULTS: The search yielded 235 abstracts, only 6 of which addressed CBR through some type of evaluative component. Three of the studies explored the effects of CBR interventions, mainly related to physical disabilities, while three explored issues concerned with the work performance of rehabilitation workers. Altogether the studies covered four different countries. CONCLUSION: All six studies related to specific service delivery in local contexts, using outcome measures that were not comparable across studies. We do not, therefore, feel that the current results provide adequate methodology or evidence for reliably generalizing their results. Due to the dearth of evidence regarding the effectiveness of alternative cadres in CBR, systematic research is needed on the training, performance and impacts of rehabilitation workers, including their capability of working across sectors and engaging with and making use of health systems research.     

How do carers of disabled children cope? The Ugandan perspective

BACKGROUND: Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. METHODS: A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. RESULTS: There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. CONCLUSIONS: CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.     

北京市某区精神残疾人家庭康复情况调查

目的掌握北京市残疾人康复总体情况,并有针对性的提出了意见和建议,进一步推动残疾人康复工作的健康发展。方法调研组通过召开座谈会、现场调研、个别走访和发放调查问卷等形式展开,并使用统计分析软件对调查结果进行描述性统计分析。结果精神病发病率男女比例较为平均,大部分发病患者为非独生子女家庭或因家庭条件影响未受过高等教育。精神残疾人群,调查对象的生活经济来源包括(按所选人数从多到少)养老金、政府补贴、低保金和父母抚养。大多数患者的主要生活来源为养老金和政府资金,调查对象对社区康复、精神康复和托养机构的了解和需求比较低。结论残疾人虽然因为身体残缺或功能障碍,存在受教育程度低、就业困难、收入水平低和医疗支出高的困难问题,但是融入社会生活的愿望很强烈。     

Medico-social rehabilitation from the standpoint of insurance medicine]

A discussion is provided of issues related to the determination of priorities in the field of rehabilitation . It is indicated that under present conditions the disability due to occupational diseases is a major socio-hygienic problem causing great socio-economic losses to the national economy. While analysing the impact of regional features in the development of public health and its specialized services on the level of medico-social rehabilitation of disabled persons it was found that there is no correlation between the phenomena studied. This situation can be explained by the absence of specialized rehabilitation service. It is suggested to create a network of cost-accounting medicosocial rehabilitation centres based on insurance medicine, their cost-effectiveness is demonstrated.