A research study into the requirements of disabled residents for rehabilitation services in Beijing

Purpose. Rehabilitation services need strengthening further. This study explores a sample of the population in Beijing in order to establish the extent of medical impairments and disabilities. It describes the present utilization of rehabilitation by different economic groups of the population and also explores the attitudes of these same groups to the concepts inherent in rehabilitation. The conclusions are that a considerable information program is needed to help people with disabilities to access and utilize services appropriately. Finally, it concludes that the present Rehabilitation Services need to be professionally improved and expanded.

Background. In China, the spectrum of disease is changing, along with the development of society, and progress in science and technology. The requirements of people for medical rehabilitation following major accidents, and acute or chronic disease, leading to disability and handicap, increase year by year. This is especially so now, with the added geriatric problems of an aging population. At present, rehabilitation services and resources within this country are limited. It is difficult to meet the immediate or long-term needs of disabled persons. Recently, there have been many national publications describing the requirements and discussing those factors which influence Rehabilitation Service provision, but much of this discussion has been theoretically based, rather than facing practical issues. We can find no studies describing the nature and extent of disabling disorders in the Beijing population and, in particular, few formal studies relating the provision of rehabilitation services to that population in need of this essential management process. We have therefore carried out a survey-based study to demonstrate the present rehabilitation service requirements for disabled residents in some typical Beijing urban districts. We have also looked at those factors which influence clients to accept the various services which are available to them at present. This will, we suggest, provide an epidemiological and demographic analysis with data on which to base future policies for government services to best meet these requirements.

Method. A series of comprehensive questionnaires were designed, in order to investigate the demographic characters, health conditions, knowledge of rehabilitation services, and social status of the interviewees. Some 460 disabled residents from three districts in the city of Beijing were selected. They were randomized, with multi-stage cluster sampling for in-house survey.

Results. Some 74.78% of interviewees expressed a need for rehabilitation, at different levels, but only 26.73% received any services. Factors influencing requests for community rehabilitation services for disabled residents in Beijing included income, nature of disability, awareness of rehabilitation services and the nature of services supplied. The expressed needs for rehabilitation services by disabled residents in communities in Beijing urban districts are real, and are largely unmet. Only a few of the disabled received any services. Factors influencing disabled residents' abilities to access rehabilitation service, included the nature and degree of disability, the economic status of the residents, the quality and nature of the rehabilitation programs and treatment available, and the knowledge by clients of the existence and availability of these services.

Conclusion. More effective measures need to be taken to make the appropriate Rehabilitation Services more available to community residents with medical disabilities.     

HIV/AIDS information and services: The situation experienced by adolescents with disabilities in Rwanda and Uganda

Purpose.?The study had 2 aims: (1) To explore whether knowledge about HIV and AIDS was similar among adolescents with disabilities compared with their non-disabled peers; and (2) To determine factors which may increase vulnerability of disabled adolescents to HIV infection and/or inappropriate access to HIV related services.

Method.?A qualitative study using focus group discussions and semi-structured interviews was conducted with purposefully selected participants in Rwanda and Uganda. The participants included disabled adolescents, non-disabled adolescents, parents, teachers, members of disabled people's organisations and representatives of HIV/AIDS organisations. Interviews explored issues of HIV/AIDS knowledge, access to HIV/AIDS services and perceptions of personal risk.

Results.?Barriers preventing adequate access to information about HIV and AIDS experienced by adolescents with disabilities depended on the nature and severity of the impairment. For example, parents and health workers were unable to communicate with deaf adolescents using sign language, adolescents with physical impairments were often unable to access community meetings about HIV and print material was not adapted for those with visual impairments. Further, assumptions by health workers and community members that people with disabilities were not sexually active lead to the marginalisation of disabled people from HIV services. Adolescents with disability described low self esteem and issues of self efficacy affecting control of safer sexual relationships. A high level of targeted abuse, rape and exploitation was reported leading to vulnerability among this population.

Conclusion.?The impact of the HIV epidemic among people with disabilities is a neglected area. This study supports the need to develop strategies in HIV prevention programmes that include people with disabilities.     

Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke

Purpose.?To discuss how young, female and invisibly disabled, long-term survivors of hemorrhagic stroke experience the reactions of others as they negotiate the social environment.

Method.?Open-ended and in-depth interviews were conducted with 22 women to learn about their post-stroke experiences, and the interviews were analyzed for common issues and themes.

Results.?Participants expressed concerns about the reactions of others in the context of discussing popular understandings about who is affected by stroke, and the significance of having invisible disabilities. Participants' experiences were mediated by the cultural belief that stroke is a disease of old age, and by the belief that disabilities worth taking seriously are readily visible. The existence of these beliefs about stroke and disability made it difficult for participants to deal with the reactions of others.

Conclusions.?Participants must negotiate their everyday lives within a social context that they are ill-prepared to deal with. Rehabilitation practices need to take this into account and counsel stroke survivors about what to expect and what they need to do for a good QOL in the community.     

Continuity,transition and participation: Preparing clients for life in the community post-stroke

Aims. To examine issues of continuity and transition facing clients as they return to life in the community following stroke and the role of rehabilitation in this process.

Key findings and implications. The sudden onset of disability following a stroke represents a major disruption to the continuity of a person's life experience. Rehabilitation has an important role in the transition from the non-disabled to the disabled state however current rehabilitation services and outcomes post-stroke focus on functional recovery rather than on a return to meaningful roles and activities and pay little attention to the transition from the non-disabled to the disabled self. Although some current rehabilitation models address the importance of involvement in a life situation, they do not adequately address issues of the role of the environment, the nature of community, the importance of meaning and choice when thinking about life situations, and change in abilities across the life course.

Conclusions. Models of rehabilitation service delivery need to move to a chronic disease management model that incorporates outcomes that are meaningful to clients, and not the assumed needs or outcomes as defined by rehabilitation professionals.     

Community services for young adults with motor disabilities – A paradox

Purpose.?To understand the contribution of educational, employment, transportation, and assured income service programs to the successful transition to adulthood of young persons with motor disabilities.

Method.?Personal interviews of 76 young adults ages 20 to 30 years with a diagnosis of cerebral palsy (n?=?54) or spina bifida (n?=?22) varying in functional mobility. Content analysis of transcribed interviews was conducted and themes identified.

Results.?‘Paradox of Services' emerged as a dominant theme across all four service sectors. Services designed to encourage independence and full participation for the young adults in their communities often restricted their independence and employment options in young adulthood.

Conclusions.?Services need to be more individualized and flexible to accommodate the environmental and personal needs of the young adults. Rehabilitation professionals have important roles at both an individual family level and the systems level to ensure the ‘best fit’ between persons with motor disabilities and the services available to them. Contemporary views of disability support rehabilitation intervention targeting both individual and environmental factors.     

Potential contributions to disability theorizing and research from positive pyschology

Purpose.?Within the context of taking the perspectives of disabled individuals themselves more seriously, it is imperative that researchers and practitioners accord due primacy to the experiential worlds and everyday lived experiences of individuals with disabilities. Based on the premise that theoretical groundedness (along with methodological rigour) is integral to sound research, it is argued that the existing body of knowledge regarding the lived experiences of individuals with disabilities may be complemented by a conceptual placing of understandings of disability in relation to a prominent theoretical pathway at the moment, namely, the interdisciplinary emphasis on human strengths and wellness.

Method.?A critical engagement with key conceptualizations of disability entailed a focus on the development, strengths, and challenges of medical, social and psychologically based conceptualizations of disability.

Results and conclusion.?The existing body of knowledge around disability may be extended and complemented by key concepts regarding human health/wellness from the field of Positive Psychology. Positive Psychology's keynote contribution to the study of disability and rehabilitation entails directing researchers and practitioners to the aim of building, reinforcing and extending disabled individuals' strengths and capacities in order to optimize their functioning in all areas of life, and thereby promote wellness.     

Lessons from the 2015 earthquake(s) in Nepal: implication for rehabilitation

Purpose: There has been an increase in the number of natural disasters in recent history, and the rate of disability is increasing among survivors. The most recent major natural disaster was the earthquake(s) that occurred in Nepal on 25 April 2015 and 12 May 2015. In total, more than 8500 people were killed and over 18?500 people were left injured. This article aims to demonstrate the role of rehabilitation professionals in post-disaster relief and beyond in Nepal. Method: This is an experiential account of physiotherapists present during the earthquake and participating in the post-disaster relief. Results: Rehabilitation professionals played an important role in the acute phase post-disaster by providing essential services and equipment. However, discharge planning emerged as an important role for rehabilitation providers in the early days of post-disaster and signaled a relatively new and innovative function that facilitated the heavy imbalance between little supply and tremendous demand for care. In the coming years, rehabilitation will need to support local initiatives that focus on minimizing the long-term effects among people with a newly acquired disability. Conclusions: Rehabilitation serves an important role across the continuum in post-disaster relief from the initial stages to the months and years following an event.

• Implications for Rehabilitation

• Driven by medical advances in acute field medicine, the relative proportion of casualties following natural disasters is decreasing, while relative rates of disability are rising among survivors.

• In post-disaster settings, the growing number of people with newly acquired disabilities will be added to the existing proportion of the population who lived with disabilities, creating a significant growth in the total number of people with disabilities (PWDs) in communities that are often ill prepared to provide necessary services.

• Rehabilitation interventions in the initial stages of emergency humanitarian response can minimize the long-term effects among people with newly acquired disabilities through early activation and prevention of secondary effects.

• Rehabilitation providers thus appear to have an important mediating effect on outcomes of disabilities in the early stages, but must also be strong partners with PWDs to advocate for social and political change in the long term.

     

Setting Disablement in Perspective

Purpose. Although rehabilitation is an integral part of the lives of many young people with physical disabilities, sexuality education and HIV and AIDS prevention services are not. The purpose of this study was to record the voices of disabled young people regarding their experiences of sexuality and HIV and AIDS and to determine the role of rehabilitation professionals in this regard.

Methods. Sixteen young people with physical disabilities, aged 15–24 years participated in the study. Individual in-depth interviews were conducted with each participant, followed by focus group discussions comprising four to six participants. Responses were audiotaped and transcribed verbatim. Textual and contextual features of the Atlas.ti computer programme were used to support the thematic analysis of the data.

Results. The results indicated that most participants had received some form of rehabilitation for their physical impairment, yet sexuality and HIV and AIDS matters were not part of the rehabilitation process. Although the majority were aware of sexuality and HIV and AIDS issues, their limited factual knowledge did not persuade them to change their sexual behaviour or take preventive measures against contracting HIV infection.

Conclusion. Rehabilitation professionals need to widen their scope of practice to include the promotion of good sexual and reproductive health for disabled young people.     

Disability and rehabilitation: Do we ever think about needed dental care? A case study: The USA

Purpose.?To foster an awareness of the need for oral health care as a component of a programme for rehabilitation of individuals with disabilities.

Method.?A case study of the USA is used to illustrate the evolving community residential settings for individuals with disabilities and the resulting complexities in the delivery of health services. Examples of oral health conditions frequently present in individuals with disabilities are provided.

Results.?National and local reports indicate that barriers exist in the delivery of oral health services for individuals with intellectual/developmental and later life disabilities.

Conclusion.?Oral health care is a component of rehabilitation, as long as attendant pain erodes energy and aspirations of individuals with disabilities. Dental practitioners face many of the same complex difficulties encountered by other health practitioners in the provision of services for individuals with disabilities. The need is for the practitioners in the many health fields to play an important role in developing an awareness of, and referrals for, necessary oral health care.     

Disability,caregiver’s dependency and patterns of access to rehabilitation care: results from a national representative study in Peru

Purpose: To determine the prevalence of disability in Peru, explore dependency on caregiver’s assistance and assess access to rehabilitation care. Method: Data from Disability National Survey (ENEDIS), including urban and rural areas, were analyzed. Disability was defined as a permanent limitation on movement, vision, communication, hearing, learning/remembering or social relationships. Dependency was defined as the self-reported need for a caregiver to help with daily activities; and access to rehabilitation care was defined as the self-report of any therapy for disabilities. Estimates and projections were calculated using sample strata, primary sampling units and population weights, and prevalence ratios (PRs) and 95%CI were reported. Results: From 798?308 people screened, 37?524 (5.1%; 95%CI 4.9--5.2%) had at least one disability. A total of 37?117 were included in further analysis, mean age 57.8 (SD?±?24.1) years, 52.1% women. Dependency was self-reported by 14?980 (40.5%; 95%CI: 39.2–41.9%) individuals with disabilities. A family member, usually female, was identified as a caregiver in 94.3% (95%CI: 93.3–95.3%) of dependent participants. Only 2881 (10.7%; 95%CI: 9.7–11.9%) of people with disabilities reported access to rehabilitation care. Major inequality patterns of disability burden versus access to rehabilitation care were observed by age and education level. Older age groups had higher disability burden yet lower chances of access to rehabilitation care. Conversely, the higher the education level, the lesser the overall disability burden but also the higher chances of reporting receiving care. Private healthcare insurance doubled the probability of having access to rehabilitation compared with those without insurance. Conclusions: Approximately 1.6 million Peruvians have at least one disability, and 40% of them require assistance with daily activities. Informal caregiving, likely female and relative-provided, is highly common. Rehabilitation care access is low and inequitable. Our results signal a major need to implement strategies to guarantee the highest standard of health care for people with disabilities.

• Implications for Rehabilitation

• Major inequality patterns in terms of burden of disability versus access to rehabilitation care were observed: those groups who concentrate more disability reported receiving less rehabilitation care.

• Caregiving is mostly informal and provided by a direct relative, mainly a woman, who resigned to their usual activities in order to help care for the person with disability. As a result, there is a need to develop appropriate support and training for caregivers.

• Access to care services in Peru is low and inequitable, but especially for people with disabilities: they experience greater barriers when accessing healthcare services even in the case of having health insurance.

     

The importance of cultural factors in the planning of rehabilitation services in a remote area of Papua New Guinea

Purpose: The aim of this study in the Middle Ramu, Papua New Guinea, was to gain a better understanding of how cultural factors work to influence the lives of persons with disability in a remote area. The study also explores how this information can be used for the planning of rehabilitation services.

Method: Two phase screening identified persons with disability in the study area and questionnaires were completed for all those identified. Information documented included the nature of the disability, a biomedical cause (where appropriate), the perceived cause of the disability, as well as some indication as to where help had been sought for the disability. In depth interviews were later done with disabled individuals and their families, to determine how they explained their disability.

Results: Thirty-two per cent of persons with disability and their families attributed disability to sorcery or other supernatural causes, a greater proportion than for any other category of perceived aetiology. There was widespread acceptance of Western medicine, although help was more likely to be sought from sources in the community for disabilities believed to have a supernatural origin.

Conclusions: This study demonstrates that an understanding of cultural factors is fundamental to implementing rehabilitation services that are culturally appropriate and address the social dimension of disability.     

Community-based rehabilitation and health professional practice: developmental opportunities and challenges in the global North and South

Purpose.?This article examines the politically-charged and hotly contested issue of the role of professionals can and should play in the provision of disability services in both the global North and South, with specific reference to Community-Based Rehabilitation (CBR).

Method.?A discursive theoretical discussion of the issues regarding the current and normative power relations that exist between disabled people and professionals working in the health sector is undertaken, by drawing upon contemporary debates in disability studies, rehabilitation, development studies and political science. This article provides an historical analysis of the development and subsequent critique of the underlying principles of CBR. Reference is then to the social model of disability and how it relates to client–professional relationships and subsequently analyses what impact and implications this has for professional practice.

Results.?The normative relationships that exist between disabled people and health professionals remains a contested area. Political imperatives for increased user involvement and public sector reform necessitate the reconfiguration of client–professional relationships. However, there is scant agreement on precisely how this should take place.

Conclusion.?The article concludes by suggesting practical strategies on how health and care services can be provided in a manner that embraces the positive characteristics of the social model of disability, and which enables professionals, such as occupational therapists, rehabilitation professionals and physicians to act as facilitators in extending the human rights and responsibilities of disabled people.     

Women’s knowledge of and attitude towards disability in rural Nepal

Purpose: What is perceived to be a disability is both culturally specific and related to levels of development and modernity. This paper explores knowledge and attitudes towards people with disabilities among rural women in Nepal, one of the poorer countries in South Asia. Method: Four hundred and twelve married women of reproductive age (aged 15–49 years), from four villages in two different parts of Nepal, who had delivered a child within the last 24 months preceding the study, completed a standard questionnaire. Results: The majority of the participants only considered physical conditions that limit function of an individual and are visible to naked eyes, such as missing a leg or arm, to be disability. Attitudes towards people with disability were generally positive, for example most women believed that disabled people should have equal rights and should be allowed to sit on committees or get married. Most respondents thought that disability could result from: (i) accidents; (ii) medical conditions; or (iii) genetic inheritance. Fewer women thought that disability was caused by fate or bad spirits. Conclusions: There is need to educate the general population on disability, especially the invisible disabilities. There is also a need for further research on disability and its social impact.

Implications for Rehabilitation

• There is need to educate the general population on disability, especially the invisible disabilities and its rehabilitation. There is also a need for further research on disability and its social impact.

     

Rehabilitation psychology: Meeting the needs of individuals with acquired disabilities in Ireland

Purpose. The current articles reviews the epidemiology of disability in Ireland, discusses the political and social factors which have increased focus on disability issues and offers training guidelines for rehabilitation psychology based on those of the APA's Rehabilitation Psychology Division.

Rationale. With the growing number of individuals with acquired (vs developmental) disabilities in Ireland, there is increased recognition of the need to train psychologists to assist persons with acquired disabilities (e.g. spinal cord injury, acquired brain injury, stroke, etc.) in adjusting to their impairments, reintegrating back into their communities and reducing the long-term financial costs associated with disability.

Conclusion. Social and political factors suggest that the time is right to develop rehabilitation psychology as a specialty in Ireland given the increased focus on disability in Ireland, including recently passed disability legislation (i.e. 2005 Disability Bill), international events (e.g. 2003 Dublin World Special Olympics) and increases in rehabilitation training programmes (i.e. medicine; physio, occupational and speech therapy).     

Discrimination and other barriers to employment for teens and young adults with disabilities

Purpose.?Having a disability is a barrier to securing and maintaining employment. Most research has focussed on employment barriers among adults, while very little is known about young people's experience finding paid work.

Method.?Young people aged 15–24 were selected from the 2006 Participation and Activity Limitation Survey to explore the barriers and discrimination they experienced in seeking employment ((n == 1898)).

Results.?Our findings show that teens and young adults with disabilities encountered several barriers and discrimination in seeking paid employment. The types of barriers that these young people encountered varied by age and type of disability. There were fewer yet different types of barriers to working that were encountered between the two age groups ((teens and young adults)). Several socio-demographic factors also influenced barriers to working. Severity of disability, type and duration of disability, level of education, gender, low income, geographic location and the number of people living in the household all influenced the kind of barriers and work discrimination for these young people.

Conclusions.?Rehabilitation and life skills counsellors need to pay particular attention to age, type of disability and socio-demographic factors of teens and young adults who may need extra help in gaining employment.     

Delivering on the promise of Plato's academy: Educational accessibility for the 21st century

Purpose.?This special volume is dedicated to eight updated and expanded communications selected from 33 refereed papers presented at the inaugural international conference on Technology-based Learning with Disability (LWD-07) which took place on July 19–20, 2007 at Wright State University in Dayton, Ohio.

Methods.?Approximately 140 researchers and practitioners attended LWD-07 representing a cross-section of K-12 and higher education, pure and applied research, disability-related industry and rehabilitation agencies with common interests in facilitating educational attainment for people with all types of disabilities through use of technology.

Results.?The communications selected for publication are representative of the breadth of interest at the nexus of disability, assistive technology, and the pedagogy of individualized learning.

Conclusions.?Access to education is a key component for quality of life and rehabilitation of any individual with a disability.     

The practice of physical medicine and rehabilitation in sub-Saharan Africa and Antarctica: A white paper or a black mark?

Introduction.?The medical specialty of Physical Medicine and Rehabilitation (PM&R) has had a proven impact on persons with disability and on healthcare systems. Documents such as The White Book on Physical and Rehabilitation Medicine in Europe have been important in defining the scope of practice within various regions. However in some continents the practice has not been well defined.

Objective.?To explore the practice of PM&R in sub-Saharan Africa and Antarctica.

Methods.?Medline searches, membership data searches, fax survey of medical schools, Internet searches and interviews with experts.

Results.?The continents are dissimilar in terms of climate and government. However both Antarctica and sub-Saharan Africa have no PM&R training programs, no professional organisations, no specialty board requirements and no practicing physicians in the field. Since there are no known disabled children in Antarctica and adults are airlifted to world-class health care, the consequences of this deficit are minimal there. However, the 788 000 000 permanent residents of sub-Saharan Africa including approximately 78 million persons with disability are left unserved.

Conclusions.?Antarctica is doing fine. Africa is in a crisis. Local medical schools, hospitals doctors, and persons with disability; along with foreign volunteers, aid groups and policymakers can impact the crisis. However government – specifically national ministries of health – is ultimately responsible for the health and well-being of citizens.