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 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.     

Evaluation of a consumer-personal assistant training project

Purpose. This study evaluated a personal assistance services (PAS) training programme that aimed to improve the consumer and personal assistant relationship and increase consumer and personal assistant knowledge on health and wellness issues.

Method. A total of 87 consumers and 53 personal assistants were enrolled in this longitudinal intervention study. Consumers and personal assistants in the intervention group participated in a six-hour in-person PAS training programme.

Results. Consumers and personal assistants who participated in the training had increased knowledge at both three and six months post-training compared to consumers and personal assistants who were in the non-treatment group. There were no differences in consumer/personal assistant relationship variables.

Conclusions. Future studies should examine the impact of PAS training programmes on health behaviours needed to decrease secondary conditions.     

Are satisfaction with and self-management of personal assistance services associated with the life satisfaction of persons with physical disabilities??

Purpose.?To examine the relationships between satisfaction with and self-management of personal assistance services ((PAS)) and the quality of life ((QoL)) of persons with disabilities. To test the postulate that consumer-directed PAS can fulfil the human need for control and contribute to a satisfactory life.

Method.?A survey compared the perspectives of persons using consumer-directed PAS versus those using agency-directed. A Personal Data Form obtained demographics and PAS characteristics. The Quality of Life Inventory measured life satisfaction. A PAS questionnaire measured perceptions about the management of, desire for control of, and satisfaction with PAS. Data were analysed using SPSS®? 14.

Results.?Significant relationships were found between QoL and satisfaction with PAS ((p < 0.001)) and between perceived control of PAS and satisfaction with PAS ((p < 0.001)). Significant group differences were also found. Consumer-directed participants reported higher satisfaction with their PAS ((p < 0.01)), greater control over services ((p < 0.001)) and greater QoL than agency-directed participants, ((p == 0.001)).

Conclusions.?The relationships found between self-management, PAS satisfaction, and QoL support the value of consumer-directed programmes. Rehabilitation professionals can use this knowledge to develop, implement and research practises that enable self-management.     

Secondary conditions in spinal cord injury: results from a prospective survey

Study design. Prospective, self-report mail survey with two points of measurement one year apart.

Objectives. To determine significant predictors of pressure ulcers (PU) and urinary tract infections (UTI) in adults with spinal cord injury (SCI) over 2 years.

Setting. Non-institutionalized adults with SCI living in the United States of America.

Methods. Secondary data analysis from 2 consecutive years. Independent variables included demographic, healthcare-related, functional, access to care, and health behavior measures. Dependent variables were the occurrence of PU and UTI at Time 2.

Results. Bivariate analyses showed significant associations between various independent variables and the occurrence of PU and UTI at Time 2. Separate logistic regression analyses for PU and UTI at Time 2 as dependent variables showed that PU at Time 1, not being married or cohabiting, not having access to primary care services when needed, and reporting a greater number of activities of daily living (ADL) requiring assistance were significant predictors of PU at Time 2. UTI at Time 1, a greater number of ADLs requiring assistance, and not engaging in weekly exercise are significant predictors of subsequent occurrence of UTI.

Conclusions. Findings support previous research, and indicate the need for increased efforts to provide SCI self-management education to at-risk subpopulations, including individuals with greater personal assistance needs and functional limitations.     

Long-term outcomes after moderate to severe traumatic brain injury

Objective: This research examined the long-term outcomes of rehabilitation patients with moderate to severe traumatic brain injury (TBI).

Design: Retrospective cohort study.

Setting and subjects: We examined consecutive records of persons with moderate to severe traumatic brain injury who were discharged from a large rehabilitation hospital in Pennsylvania from 1973 to 1989. We interviewed consenting participants (n = 306) up to 24 years post-injury.

Main outcome measures: Self-rated health, activity limitations, employment, living arrangements, marital status, Community Integration Questionnaire, and use of rehabilitation services.

Results: Participants were most limited in activities such as managing money and shopping. Twenty-nine per cent of our participants were working full time. There were significant relationships between activity limitations and residual cognitive impairment at follow-up. Self-rated health was correlated with most instrumental activities of daily living.

Conclusion: Our findings document health and function in a large post acute TBI population and implications for rehabilitation are discussed.     

'No going back' to institutional care for people with severe disability: reflections on practice through an interpretive study

Purpose. This paper evaluated quality of life for people with a disability with high health and high support needs following a move from a congregate care institution to community housing. The study explored residents' perceptions of the service, level of community involvement, lifestyle choices, and input into decision-making.

Method. An exploratory interpretative study was conducted using semi structured interviews with nine community house residents, ten community house staff and five family members.

Results. Participants were clear they definitely would not go back to the institution, but the relocation experience was not without difficulties. These issues related to 'site', 'staff' & 'skills'.

Conclusions. Direct support staff hold considerable power to increase or diminish residents' quality of life. A targeted programme addressing specific site, staff & skill issues would strengthen quality of life for these very dependent residents.     

A qualitative analysis of a progressive resistance exercise programme for people with multiple sclerosis

Purpose. This qualitative study explored the perceptions of adults with multiple sclerosis about the positive and negative effects of a progressive resistance strengthening programme; and identified factors that might facilitate or create barriers to participation.

Methods. Seven women and two men (mean age 45.6 years, SD 10.7) with multiple sclerosis participated in a 10-week gymnasium based progressive resistance strengthening programme held twice a week. Participants were interviewed at the end of the programme. The recorded interviews were transcribed and then independently coded by three researchers. From these codes, the main themes emerged.

Results. Reports about the programme were very positive with physical, psychological and social benefits noted. Most participants said that they had less fatigue as a result of the programme. Few negative outcomes were reported and these were minor such as aches and pains. Key extrinsic factors for programme completion were the leaders' encouragement and knowledge of exercise; and the group aspect of the programme. Key intrinsic factors were enjoyment, determination, seeing the signs of progress, and a previously held positive attitude about the benefits of exercise.

Conclusions. The results of this study suggest that progressive resistance strength training is a feasible fitness option for some people with multiple sclerosis. Factors perceived to be important for programme completion suggest that choosing encouraging leaders with knowledge of exercise, and exercising in a group may contribute to programme success.     

Long-term evaluation of a health education programme for elderly persons with visual impairment. A randomized study

In order to implement evidence-based practice, a randomized study was set up to evaluate the ADL- based Health Education Programme 'Discovering new ways' for elderly persons with age-related macular degeneration.

Purpose: To investigate the impact of this program on perceived security in the performance of daily activities 28 months after the intervention.

Method: Two-hundred and twenty-nine persons randomized to either the Health Education programme or an Individual Intervention Programme participated in the study. At the 28-month follow-up there was a dropout of 98 persons and the results are based on 62 persons participating in the Health Education Programme and 69 persons in the Individual Intervention Programme.

Results: There were statistically significant differences in perceived security between the groups in 15 out of 28 daily activities. Furthermore, the Health Education Group showed a significant tendency towards an improved level of security while the Individual Intervention Group tended to deteriorate.

Conclusions: The findings provide strong support for the long-term effect of the programme and for the implementation of evidence-based practice. The study corroborates the effectiveness of the Health Education Programme in enhancing security and hindering a progressive decline in perceived security in daily activities.     

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.     

Rural access to vocational rehabilitation services: Minority farmers' perspective

Purpose. The paper documents the need for, and obstacles to effective access to rehabilitation services by minority farmers. It draws from the findings of a study * conducted in the Mississippi delta.

Method. Applying community-based participatory research approach (CBPR) the study trained farmers to conduct interviews and focus group discussions. They interviewed 1308 farmers and had 18 focus group discussions with 254 farmers. The study also interviewed 290 service providers and conducted 8 focus group discussions with 72 State Vocational Rehabilitation services (VR) counselors.

Results. The study found an unmet need for VR services in this population. Farmers were not aware of VR services or how to access them and VR was not aware of farmers' needs. Farmers felt marginalized and afraid that access to VR services would diminish their ability to earn a living on the farm.

Conclusions. Collaboration between VR and rural organizations, agencies and with rural people would help close the information and gaping service gap. One-stop service centers in rural areas could improve access to services. CBPR is an invaluable research tool especially among marginalized people.     

Medical rehabilitation in Ghana

Purpose. To explore the current system of medical rehabilitation services for persons with disabilities in a developing country (Ghana) and to identify future needs, opportunities, and barriers.

Methods. Information was obtained through a literature review and through interviews with healthcare providers, disabled people's organizations, educators, government officials, and consumers. Direct observations were made of Ghana's capital city, Accra, and of a major tertiary medical center there, Korle Bu Teaching Hospital.

Results. Ghana has virtually no medical rehabilitation and few laws to protect the disabled. There are no occupational therapists or physiatrists in the entire country, and only a handful of physical therapists, prosthetists, orthotists, and speech therapists. There are many barriers to the establishment of such services, including lack of funding, limited government support, cultural stigma of the disabled and poor utilization of existing resources.

Conclusions. A national model for sustainable medical rehabilitation is needed in Ghana and likely in other similar countries.     

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.     

The Papworth Early Rehabilitation Programme: vocational outcomes

Background. There are 2.7 million people in the UK receiving incapacity benefits, costing approximately £18 billion pa. Government has adopted a policy of helping claimants back into work, through structured vocational rehabilitation schemes. There are no published results of vocational rehabilitation services in the UK. We present the results of the Papworth Trust vocational rehabilitation programme. Depending on the severity of their disability, the 'Early Rehab Programme' aims to get people on incapacity benefits: (a) into employment, (b) fit for and seeking work, (c) involved in voluntary work, (d) education, or (e) able to live independently.

Methods. Retrospective chart survey and telephone follow up.

Setting. Cambridgeshire.

Results. Since 1995, 274 people attended for a preliminary interview, of which 107 subsequently started a full rehab programme. Eighty-seven were male and 20 female. Half had been unemployed for more than two years. Ninety-four completed the programme, of whom 53 had gained employment, 33 were 'work ready' and four were doing voluntary work. At long-term follow-up, 52 were employed, 12 were in voluntary work, and 7 had retired on medical grounds.

Conclusions. This programme demonstrates that long-term Incapacity Benefit recipients can return to sustained employment, as shown in those who participated in the Papworth Trust's vocational rehabilitation programme.     

Validity of the impact on participation and autonomy questionnaire: a comparison between two countries

Purpose. To evaluate the cross-cultural validity of the five subscales of the Impact on Participation and Autonomy (IPA) measure and the full 31-item scale.

Method. Data from two validation studies (Dutch and English) were pooled (n = 106). Participants (aged 18 - 75), known to rehabilitation services or GP practices, had conditions ranging from minor ailments to significant disability. Validity of the five subscales and the total scale was examined using Rasch analysis (Partial Credit Model). P values smaller than 0.01 were employed to allow for multiple testing.

Results. A number of items in all the subscales except 'Outdoor Autonomy' needed rescoring. One 'Indoor Autonomy' item showed uniform DIF by country and was split by country. One 'Work and Education' item displayed uniform and non-uniform DIF by gender. All the subscales fitted the Rasch model and were invariant across country. A 30-item IPA also fitted the Rasch model.

Conclusion. The IPA subscales and a 30-item scale are invariant across the two cultures and gender. The IPA can be used validly to assess participation and autonomy in these populations. Further analyses are required to examine whether the IPA is invariant across differing levels of disability and other disease groups not included in this study.     

What can we learn from the personal insights of individuals living and coping with multiple sclerosis?

Purpose. The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life.

Methods. Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions.

Results. Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed.

Conclusion. The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.     

Outpatient spinal cord injury rehabilitation: managing costs and funding in a changing health care environment

Purpose. To examine the literature describing the cost of outpatient rehabilitation for patients with spinal cord injury (SCI) as well as the effect of funding type on cost and outcome. A SCI rehabilitation planning and funding model is presented that calls for structured assessment of the client's economic environment, with follow through to promote full access to funding for rehabilitation plans.

Method. Literature review of specific outpatient rehabilitation intervention costs and effect of funding type, followed by development of a funding model to improve access to available funding for SCI rehabilitation.

Results. There is insufficient economic data to draw conclusions about the relationship between an individual's rehabilitation needs and access to appropriate funding for outpatient rehabilitation. Consequently, health providers and payers need to adopt an approach that will improve consistency of payment decisions and access to necessary funding for rehabilitation.

Conclusions. A model for a more formal approach to: (a) Assessment of a client's economic environment; (b) use of evidence-based SCI rehabilitation; and (c) use of available financial resources should promote better access to appropriate rehabilitation following SCI.     

Reflect before you act: providing structure to the evaluation of rehabilitation programmes

Purpose: This paper is concerned with understanding and evaluating potentially diverse rehabilitation programmes. It helps evaluators and programme managers to focus attention on specific aspects of the rehabilitation process and select evaluation questions relevant to each.

Method: Distinction is made between the rehabilitation programme itself, the programme environment and the relationships between the two. For each of these areas, evaluation questions have been formulated. For services offered to individual clients, questions address whether the status of clients has improved, what interventions are offered and who benefit from them, the relationships between the service providers and the clients, and who may be involved in the rehabilitation process besides the client. To assess the programme environment, questions address the epidemiology of disability, the resources available to persons with disabilities, the inclusiveness of education and employment and a number of eco-social variables. Relationships between the programme and its environment concern the support of the community for the programme, the way the programme seeks to influence the community, the referral of clients to other services available in the community and the extent to which the programme is a learning organization.

Results: Lists of evaluation questions are presented from which the evaluator can select those most relevant to the programme to be evaluated. This provides a framework for the evaluation and for the information to be gathered. Rather than providing a blue print, this framework permits flexibility to adapt to the specific situation of the programme to be evaluated.

Conclusion: This paper presents a useful guideline that stimulates the thinking of those preparing for the evaluation of rehabilitation programmes.     

A framework for the conceptual modelling of assistive technology device outcomes

Purpose: A key step in planning assistive technology outcomes research is formulation of a conceptual model, specific to a particular type of device, that provides a rationale for the expected outcomes. This paper reflects the conviction that the development of device-specific causal models will be facilitated by having available an overarching framework that is potentially applicable to multifarious types of devices and their outcomes.

Method: A literature review identified the critical, unmet needs for a conceptual framework. The assumptions underlying the framework were specified preparatory to describing it and discussing its implications.

Results: The outcomes of assistive technology devices are depicted as resulting from the interaction among characteristics of a specific device-type, its users, and their environment. Initial junctures include procurement of a type of device and a period of introductory use that, interacting with various moderating co-factors, result in a variety of shorter-term outcomes, possible longer-term use, and its outcomes.

Conclusions: The framework has the potential of facilitating the development of device-specific causal models. It also may contribute to developing a research agenda for assistive technology outcomes research by highlighting measures that need to be developed and by identifying testable hypotheses concerned, for example, with the manner and duration of devices' usage.     

Agricultural workers' return to work following spinal cord injury: a comparison with other industry workers

Purpose: To investigate the impact of spinal cord injury on employment outcomes as experienced by agricultural workers in comparison with persons employed in other industries. Because of the challenges associated with working in many of the agricultural industries, it was anticipated that agricultural workers would achieve inferior return-to-work outcomes.

Method: Survey of all employed persons who experienced a traumatic spinal cord injury in southeastern Australia between 1990 and 1996 (inclusive).

Results: Contrary to expectation, agricultural workers had a significantly higher rate of return to work (61.7% vs. 41.1%). However, an investigation into the hours spent working and agricultural workers' satisfaction with their employment activities, indicated that most were underemployed and had the potential to achieve even better outcomes.

Conclusion: Results indicate that more can be done to help injured agricultural workers achieve their employment potential.