The experience of being disabled and obese

Purpose. This qualitative study was designed to explore the experiences of disabled and severely obese people living in the community. The challenges that their size and disabilities posed within their homes and in accessing community facilities were explored, with particular reference to the provision and use of assistive technologies.

Methods. The study comprised in-depth interviews with a sample of six severely obese, disabled people using a grounded theory approach.

Results. Three key themes emerged: the experience of daily life; accessing services; and responses to challenges. The study participants found that their home and community environments were seldom adequate for their size. Difficulties were identified in relation to accessing and using NHS services and negative attitudes and treatment from staff. Assessments and quality of assistive devices and housing adaptations received were criticised by some. Participants identified a range of responses to these challenges.

Conclusion. The challenges that obesity bring are compounded by disability, including the need for higher levels of care and the higher costs of assistive devices for this client group. The study suggests there may be a need for training for professionals who work with obese, disabled people to ensure their needs are met in appropriate and cost-effective ways.     

Predicting employment outcomes of rehabilitation clients with orthopedic disabilities: a CHAID analysis

Purpose. To examine demographic and service factors affecting employment outcomes of people with orthopedic disabilities in public vocational rehabilitation programs in the United States.

Method. The sample included 74,861 persons (55% men and 45% women) with disabilities involving the limbs or spinal column who were closed either as rehabilitated or not rehabilitated by their state-run vocational rehabilitation agencies in the fiscal year 2001. Mean age of participants was 41.4 years (SD = 11.2). The dependent variable is employment outcomes. The predictor variables include a set of personal history variables and rehabilitation service variables.

Results. The chi-squared automatic interaction detector (CHAID) analysis indicated that job placement services significantly enhanced competitive employment outcomes but were significantly underutilized (only 25% of the clients received this service). Physical restoration and assistive technology services along with support services such as counseling also contributed to positive employment outcomes. Importantly, clients who received general assistance, supplementary security income, and/or social security disability insurance benefits had a significant lower competitive employment rates (45%) than clients without such work disincentives (60%).

Conclusion. The data mining approach (i.e., CHAID analysis) provided detailed information and insight about interactions among demographic variables, service patterns, and competitive employment rates through the segmentation of the sample into mutually exclusive homogeneous subgroups.     

The role of the spiritual dimension of the self as the prime determinant of health

Purpose. To present a clinical commentary on the relationship of spirituality to healthcare for those with chronic physical conditions.

Method. A spiritually based theory of self-identity was presented, based on selected literature to identify the process of health attainment for those with chronic conditions. The resultant Health Change Process Theory was then discussed in relation to relevant empirical research and the implications for rehabilitation practice were outlined.

Results. The development of a resilient, intrinsic, spiritually based concept of self was found to be pivotal to health outcomes in rehabilitation. This was then incorporated within a Health Change Process Theory to explain and predict the course followed by people with chronic disorders to achieve health.

Conclusion. The Health Change Process Theory provides an inclusive framework within which acute and chronic rehabilitation healthcare can be merged to maximise health outcomes. Nevertheless, a need remains to develop a quantitative measure of individual holistic health, based on this theory, to facilitate its use in rehabilitation practice. This paper forwards an explanation for the process that people experiencing chronic physical disabilities undergo as they achieve health. A concept of self that identifies the spiritual core as the component that determines the constancy and continuity of self as a whole which is necessary for health is presented as the basis of the rehabilitative health process.     

Impact of comprehensive gynecologic services on health maintenance behaviours among women with spinal cord injury

Purpose: Women with spinal cord injury (SCI) and other physical disabilities often lack access to appropriate gynecologic health care and may be at higher risk for preventable gynecologic diseases and other health problems. The purpose of this study was to investigate the effects of a women's health clinic that was established to meet the needs of women with SCI and other disabilities. Specifically, this study examined the effect of clinic participation upon the rate of preventive gynecologic health care behaviours and assessed the relationship between physical and emotional functioning in women with SCI and other disabilities.

Method: Participants ( n =28) were women who completed surveys immediately prior to participation in the clinic, and at 3 and 12 month follow-ups.

Results: Results indicated a trend towards increased frequency of breast self-exam three months after initial participation in the clinic ( p =0.11). Other rates of health promoting behaviours (exercise, diet and mammography) did not increase. Results also indicated that although physical functioning and life satisfaction were not related, women in this study did experience moderate to high levels of psychological distress.

Conclusion: Results indicate that whole-woman health care may be important to increasing certain health behaviours among women with disabilities. Implications for comprehensive treatment are discussed.     

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.     

The impact of Internet access for people with spinal cord injuries: a descriptive analysis of a pilot study

Purpose : A pilot study was undertaken regarding the effect of Internet access on health-related quality of life (HRQoL) and self-reported impact for people with spinal cord injuries (SCI). This study is unique in providing free Internet access and looking at benefits for people with disabilities.

Method : HRQoL was measured using indicators of global health and social isolation at baseline and after 6 to 19 months of use via telephone interviews on a convenience sample of 23 adults with SCI. Additionally, monthly telephone surveys measured usage patterns, recreation, and self-reported impact. Both quantitative and qualitative analyses were conducted. Bivariate tests for differences in proportions and paired T-tests were conducted. Qualitatively, conceptual categories of impact were created using the Constant Comparative Method.

Results : Qualitatively, the predominant benefit was quality of life, mentioned by 61% of participants 46% of months surveyed, with quantitative trends towards improved emotional health. Ease of access to information, social connection, and quality of information were also frequently reported, with modest support from quantitative data.

Conclusions : The study's persuasive qualitative results suggest the Internet has particular benefit to people with disabilities and that rehabilitation goals should include leisure. Further scientific research is strongly warranted.     

Bridging the gap: transitional rehabilitation services for people with spinal cord injury

Purpose : To review the current international rehabilitation and healthcare climate and describe a new model of service delivery aimed at enhancing the continuity of care for people with spinal cord injury (SCI).

Method : An extensive literature review was undertaken and a new model of service delivery conceptualized and implemented in the Australian context of SCI rehabilitation.

Results : This new model of service delivery aims to improve the rehabilitation continuum for people with SCI by reducing the time spent in hospital, increasing consumer control over the rehabilitation environment and enhancing community re-integration. The new model recognizes the changing nature of the healthcare system, the legislative frameworks within which rehabilitation services are provided and the increasing role of the consumer.

Conclusions : Models of rehabilitation that address the need for shorter periods of hospitalization and attempt to improve client outcomes are integral to ensure sustainable rehabilitation services in the future.     

Control of virtual environments for young people with learning difficulties

Purpose : The objective of this research is to identify the requirements for the selection or development of usable virtual environment (VE) interface devices for young people with learning disabilities.

Method : A user-centred design methodology was employed, to produce a design specification for usable VE interface devices. Details of the users' cognitive, physical and perceptual abilities were obtained through observation and normative assessment tests.

Conclusions : A review of computer interface technology, including virtual reality and assistive devices, was conducted. As there were no devices identified that met all the requirements of the design specification, it was concluded that there is a need for the design and development of new concepts. Future research will involve concept and prototype development and user-based evaluation of the prototypes.     

Medical care services for people with intellectual disabilities living in the general community: a cross-sectional survey of inpatient care utilization in Taiwan, 2001

Background. The medical care needs and problems of persons with intellectual disabilities (ID) living in the general community have received limited attention in previous studies. The aim of this article is to describe aspects of medical care utilization among people with ID living in the general community, with particular emphasis on examining the type and determinants of inpatient care utilization in Taiwan.

Methods. A cross-sectional survey of people with intellectual disabilities was employed. A total of 997 respondents who provided fully completed data concerning inpatient care utilization were recruited into the analysis.

Results. A total of 12.4% of individuals with intellectual disabilities had used inpatient care in the 7 months prior to the survey. The average number of inpatient care visits in that time was 1.43, with an average hospital stay of 16.91 days. Surgery, fever, gastrointestinal disorders, psychiatric disorders, and accident were the main causes of inpatient care utilization. A stepwise logistic model showed that the factors of holding a Major Illness Card, regular medicine-taking and self-perceived health status were statistically significant to inpatient care utilization of people with intellectual disabilities.

Conclusions. Medical care providers and policy makers need to be aware that many people with intellectual disabilities have increased medical care needs that may require modification of standard medical care practices and service models in society.     

Barriers to accessing safe motherhood and reproductive health services: the situation of women with disabilities in Lusaka, Zambia

Purpose: To ascertain how well health services in Lusaka, Zambia currently meet the safe motherhood and reproductive health care needs of women who have physical impairment leading to disability.

Methods: A qualitative study was conducted in Lusaka, Zambia. In-depth tape-recorded interviews were conducted with 24 purposively selected women with disabilities and with 25 safe motherhood/reproductive public sector health service providers. Qualitative analysis was conducted using NVivo software.

Results: Women with disabilities encounter various social, attitudinal and physical barriers to accessing safe motherhood and reproductive health (RH) services in this particular setting. The strong desire for children and affection can increase vulnerability to sexual exploitation. At the same time, a generalized assumption among reproductive health service providers that women with disabilities will not be sexually active, and not require RH services, leads to increased vulnerability to sexually transmitted infection including HIV. Once pregnant, traditional beliefs about transmission of disabilities can create barriers to integration in ante-natal clinics. Nurse-midwives' fear of delivery complications in women with physical impairments can also result in routine over-referral to a tertiary maternity facility which is outside the locality and harder for women with mobility limitations to get to.

Conclusion: Greater understanding of the influences underpinning societal attitudes towards sexuality and disability in this setting, and more extensive communication between health care staff and women with disabilities would facilitate positive action towards improving safe motherhood and reproductive health services for women with disabilities.     

A comparison of consumer-directed and agency-directed personal assistance services programmes

Purpose: To compare a consumer-directed personal assistance services (PAS) programme with an agency-directed PAS programme.

Method: A convenience sample was used for this cross-sectional study with one data collection point. Outcomes were compared for consumer-directed and agency-directed PAS. Hierarchical regressions were also used to determine the predictors of outcomes across PAS programmes. In-home interviews were conducted by a trained data collector from April 2000 to December 2001.

Results: Participants in the consumer-directed programme reported more choices over PAS and satisfaction with PAS. Self-reported outcomes were primarily predicted by the following variables: service arrangement, type of provider, importance of directing PAS, health status, number of personal assistants used in past 12 months, sufficient PAS hours received, and social support.

Conclusions: Consumer-directed PAS enhances outcomes for many persons with disabilities. Self-reported outcomes are affected by many factors that could be addressed in PAS programme development.     

A longitudinal comparison of consumer-directed and agency-directed personal assistance service programmes among persons with physical disabilities

Purpose. To compare outcomes for persons who were enrolled in an agency-directed personal assistance services (PAS) programme and then changed to a consumer-directed PAS programme.

Method. A convenience sample was used for this longitudinal study. In-home interviews were conducted by a trained data collector from April 2000 to December 2001.

Results. Participants reported more satisfaction and safety with personal assistance, and fewer unmet needs after receiving consumer-directed services than after receiving agency-directed services. Other variables related to outcomes included race and ethnicity, employment, functional status, unmet needs, and the level of confidence in obtaining help if assistance is unavailable. Participants (74%) also reported high rates of unmet needs in the past month.

Conclusions. Consumer-directed PAS enhances outcomes for many persons with disabilities. Self-reported outcomes are affected by many factors that could be addressed in PAS program development.     

A survey of rehabilitative services and people coping with physical disabilities in Uganda, East Africa

The impact of physical disability in the developing world is a tremendous health issue. The developing world presents many challenges in the lives of these people, many who cope without rehabilitative care. To determine how disabled people manage in this setting, 49 mobility-impaired Ugandans were interviewed. Functional capacity was assessed by determining the severity of lower extremity impairment and identifying the use of assistive devices and personal assistance needed in activities of daily living. Males appeared to have greater access to rehabilitative equipment, namely wheelchairs, and to personal assistance. The use of assistive devices was indicative of greater mobility, which subsequently provided greater opportunities, such as formal education or employment. Subjects with severe impairments without access to rehabilitative equipment were dependent upon crawling for mobility and begged for economic survival. Although there were a mix of responses towards perceived attitudes towards disabled subjects, more reported being viewed in a positive than in a negative light. Findings suggest that gender-related issues may limit access to rehabilitative equipment, due to limited financial resources of women living in the developing world. Uganda utilizes a viable political organization of people with disabilities to raise awareness and to empower its citizens coping with disability.     

Physical activity beliefs and behaviour of adults with physical disabilities

Purpose. The purpose of this study was to elicit the physical activity (PA) beliefs from adults with physical disabilities; and second, to examine their self-reported PA participation.

Method. Participants were 223 adults (M age = 45.4 years, SD = 10.8), with self-reported physical disabilities who completed a web-based survey. Six open-ended questions were used to assess PA beliefs and the PA Scale for Individuals with Physical Disabilities measured self-reported PA.

Results. A qualitative analysis showed that the most accessible behavioural advantages are that PA improves emotional functioning and assists with weight management. The most accessible behavioural disadvantages are that PA causes pain or soreness and consumes time. The most accessible normative influences that approve of PA are family, friends, and healthcare professionals. The most accessible control beliefs obstructing PA are disability and associated symptoms, and a lack of access to adequate facilities, equipment, or programs. The most accessible control beliefs that facilitate PA are access to adequate facilities, equipment, or programs, and support or assistance. Finally, the average total PA score was 20.5 metabolic equivalent (METS)-hours/day (SD = 16.8).

Conclusions. Adults with physical disabilities possess unique PA beliefs that can be used to design health promotion interventions to increase PA participation.     

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.