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.     

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.     

Return to work in stroke patients

Purpose. To present the current state of knowledge regarding return to work (RTW) following stroke.

Method. A comprehensive review of the current stroke rehabilitation literature pertaining to prognostic and treatment factors for RTW following stroke.

Results. Stroke is a major healthcare problem and one of the most expensive diseases in modern society. Stroke results not only in impairment and limitation in basic daily activities; it also impacts on participation in community activities, such as returning to work. Return to work in post-stroke patients has been reported to range between 19% and 73%. Various studies report on return to work in diverse populations, using different follow-up periods, while utilizing variable definitions of stroke and successful work outcomes. The factors positively related to RTW in stroke patients, as found in the literature, are age less then 65 years, high education level and white-collar employment. The significant negative predictor is the severity of stroke. This is indicated by neurological parameters including functional measures of the presence and extent of motor and cognitive impairment. Significantly, the side of the brain damaged and stroke location were not found to be correlated with RTW. Social and financial factors also significantly influence RTW.

Conclusions. RTW in stroke patients should be considered one of the indicators of a successful rehabilitation as it influences self-image, well-being and life satisfaction. There is still a considerable lack of knowledge regarding effective assessments and interventions in vocational rehabilitation in stroke patients.     

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.     

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.     

Predictors for successful vocational rehabilitation for clients with back pain problems

Purpose. The aim of this study was to identify predicting factors for successful vocational rehabilitation for people with back pain problems.

Method. The study was based on data from 347 long-term sick-listed clients collected at the onset of vocational rehabilitation. The outcome was measured 6 months after the conclusion of rehabilitation.

Results. In a first bi-variate analysis, a considerable number of variables were associated with the rehabilitation outcome. In a second multivariate analysis, only four associations remained. These were age, general health, vitality and internal locus of control. Young vital clients in good general health, with a high internal locus of control were more likely than others to return to work.

Conclusion. The findings regarding age, general health and vitality are well in line with previous studies. The findings regarding internal locus of control are more unique.     

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.     

Predictors of assistive technology use: the importance of personal and psychosocial factors

Objective. To validate an assistive technology (AT) baseline and outcomes measure and to quantify the measure's value in determining the best match of consumer and AT considering consumer ratings of their subjective quality of life, mood, support from others, motivation for AT use, program/therapist reliance, and self-determination/self-esteem.

Design. Prospective multi-cohort study.

Setting. Vocational rehabilitation offices and community.

Participants. Over 150 vocational rehabilitation counselors in 25 U.S. states with one consumer each receiving new AT.

Interventions. Counselor training in the Matching Person and Technology (MPT) Model and consumer completion of the MPT measure, Assistive Technology Device Predisposition Assessment (ATD PA).

Main outcome measures. Total and subscale scores on the ATD PA as well as counselor-completed questionnaires.

Results. ATD PA items differentiated consumer predispositions to AT use as well as AT and user match. There were no significant differences due to gender, physical locality, or age within this sample of working-age adult consumers. Vocational rehabilitation counselors exposed to training in the MPT Model achieved enhanced AT service delivery outcomes.

Conclusions. The ATD PA is a valid measure of predisposition to use an AT and the subsequent match of AT and user. Rehabilitation practitioners who use the ATD PA will achieve evidence-based practice and can expect to see enhanced AT service delivery outcomes.     

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.     

Reading to stroke unit patients: perceived impact and potential of an innovative arts based therapy

Objective. This study investigated the delivery of an arts based intervention to stroke patients and sought users' and professionals' views of any perceived benefits.

Setting. The study was undertaken on the stroke rehabilitation ward of a London teaching hospital.

Design. Semi-structured interviews were carried out with 21 patients, 3 health care professionals and 5 reading service personnel. Observation sessions were carried out weekly for the 10-month duration of the project. Data were analysed using the Framework method.

Intervention. The reading service, run by Interact, a registered charity, aims to entertain, stimulate and engage patients. Readers are professional actors trained to work specifically with stroke patients. Interact provide a selection of reading materials or alternatively patients provide their own material.

Results. Participants' accounts suggested that the service met its aim of providing entertainment and stimulation. Additionally, there was some evidence that taking part in the reading service was associated with participants' emotional well being, the processes of adjusting to hospitalisation and to their engagement in rehabilitation therapies. Hospital staff acknowledged the service benefited patients with regard to spiritual, emotional/psychological needs. However they maintained that the service, as entertainment rather than therapy, was of minor importance.

Conclusion. This arts based intervention was welcomed by patients and seemed to address some needs not met in the current configuration of care. These findings suggest that interventions such as the reading service point to ways in which it is possible to enhance the rehabilitation environment and perhaps facilitate better outcomes for stroke patients.     

Patients' experiences with self-referral to in-patient rehabilitation: a qualitative interview study

Purpose. To describe objectives, experiences and satisfaction among subjects referring themselves to in-patient rehabilitation.

Method. Persons suffering from stroke or multiple sclerosis were invited to refer themselves to a specialised rehabilitation department. Ten patients referred themselves within the study period, of whom two were excluded. The remaining eight underwent qualitative semi-structured in-depth interviews, focusing on the decision of self-referral, the personal goals for the rehabilitation, and the satisfaction with the stay. The interviews were tape-recorded and subjected to content analysis. As an underlying theoretical framework, we applied Antonovsky's Sense of Coherence model.

Results. Half of the patients had not written the application themselves and did not know which grounds had been put forward in the application. Nevertheless, all the patients were able to formulate their personal goals for the rehabilitation stay. These were distributed in three main categories: those who recently had got a progressive disability wanted education and improved knowledge on their disease; those who had had an acute, traumatic change of health status wanted training in order to improve muscular strength or everyday skills; and those who had been disabled for several years wanted inspiration for further life.

Conclusions. Patients may put forward other reasons to apply for rehabilitation than health personnel. Does the Sense of Coherence Model seems applicable to describe these reasons.     

Some ethical issues in community-based rehabilitation initiatives in developing countries

Purpose : This commentary provides both theoretical and practical insights into the concept of community-based rehabilitation (CBR) and its application in developing countries. In doing so it explores current practices in CBR and the debate surrounding them, namely the ethical question and how this may impact on future CBR. The main argument in this account is that disability is a development issue; with widespread poverty, inequality and violation of human rights, and should be addressed within the broader context of community development which may include strategies such as CBR.

Method : A review and analysis of recent literature on CBR has been conducted including the review of a number of empirical research documents from various CBR initiatives in developing countries.

Results : CBR has increasingly been under scrutiny in terms of the extent to which these have succeeded in delivering rehabilitation services to those in need in the community as well as the permitted level of participation and control of disabled people over the rehabilitation process. Many programmes have been unsustainable and it has been difficult to evaluate their full usefulness to disabled people. These issues raise an ethical question about CBR being an appropriate strategy for the rehabilitation of people with impairments in developing countries.

Conclusion : This background emphasizes that new directions in CBR need to be put in place in order to maximize the realization of the ultimate goal: the greatest participation for disabled people in all spheres of life. Effective rehabilitation programmes should allow people with disability to have greater control in the nature of their rehabilitation and that the role of professionals and other stakeholders is one of allies and resources in the rehabilitation process. Moreover, the participation of community members in the rehabilitation policy should be assured.     

Late multidisciplinary rehabilitation in young people after stroke

Purpose: Stroke has a major impact on physical and cognitive ability, and quality of life. This study aims to examine the effect of multidisciplinary rehabilitation on outcome in an Irish young stroke population.

Method: Fifty consecutive patients younger than 65 were prospectively recruited to this observational study. Physical and cognitive ability, and quality of life were measured on admission and discharge.

Results: All patients were transferred to the rehabilitation unit from the acute hospital where they had received their initial management. Median length of time from stroke onset to transfer was 112 days. After a median of 70 days, 43 patients were discharged home. Patients made significant gains in physical (Barthel index 12 to 18) and cognitive ability (mini-mental state examination 22 to 25). Quality of life improved in all eight domains of the 36-item Short Form with four domains returning to levels seen in the general population.

Conclusions: This study documents the improvements in physical and cognitive abilities, and quality of life in a sample of patients in rehabilitation. A comprehensive rehabilitation programme that includes acute and late multidisciplinary phases can improve the outcome of patients following stroke.     

The adoption of tobacco dependence treatment by rehabilitation clinicians

Purpose: Individuals with disabilities tend to smoke at rates that surpass those of the general population. The Public Health Service Guideline on the treatment of tobacco dependence suggests that all smokers be screened at every health care visit and counselled regarding how best to quit smoking. We review the literature on the adoption of tobacco dependence treatment by rehabilitation clinicians working with disabled individuals. Despite the deleterious health effects of smoking on individuals with disabilities, the limited data suggests that rehabilitation clinicians rarely encourage their clients who smoke to quit.

Method: Studies were collected using various computerized databases from 1980 to the present. Because of the paucity of literature on tobacco dependence treatment utilization among rehabilitation clinicians, we also examine research on the use of tobacco dependence treatment by health care providers in the general population and in substance abuse treatment settings.

Results: Despite the efficacy of tobacco dependence treatment in smokers with disabilities, tobacco dependence treatment appears to be underutilized by rehabilitation clinicians.

Conclusions: Interventions that have successfully increased adoption by the two other clinician groups should be utilized to increase tobacco dependence treatment provision by rehabilitation clinicians. Additional research is warranted to determine how to overcome obstacles to adoption.     

'Optimal' participation: a reflective look

Purpose. There is mounting interest by professionals working in the rehabilitation sciences related to the concept of participation, especially given the increasing numbers of individuals worldwide living with chronic illnesses. It is now internationally agreed that participation level is influenced by both personal and environmental factors. The question arises as to the meaning of 'optimal' participation. The main objective of this article is to provide a reflective look at the concept of participation and the meaning of 'optimality' for individuals with and without disability and to explore both in relation to response shift.

Method. Similarities in definitions of participation are first examined. Normal participation level is discussed leading to an 'optimal' level based on normality. Cases are used to illustrate normality as well as how 'optimal' participation can be achieved through a transition period despite disabilities caused by a health condition such as a stroke.

Results. 'Optimal' participation would rely on a perfect fit between an individual's reality (how activities and roles are actually realised) and expectations of how activities and roles should be accomplished. A transition period, including a response shift, following an acute event or onset of a chronic condition can lead to an optimal participation level despite persisting disabilities.

Conclusions. A better understanding of the meaning of optimal participation and its association to response shift is important to clinical practice. Interventions aimed at optimizing participation through assisting clients who are experiencing a response shift can then be designed to maximize participation and concomitantly, quality of life in those with chronic health conditions.     

Return to work following traumatic brain injury: trends and challenges

Purpose. The aim of this paper is to present the current knowledge regarding return to work (RTW) following traumatic brain injury (TBI).

Method. Based on a Medline search, the authors reviewed the current TBI rehabilitation literature regarding (a) predictive factors for successful RTW, and (b) current concepts in rehabilitative strategies for successful RTW.

Results. The functional consequences to the victim of traumatic brain injury (TBI) can be severe. Intensive rehabilitative efforts typically emphasize the early phase and address mainly the accompanying functional deficits in the realm of basic activities of daily living and mobility. An otherwise successful medical rehabilitation may end unsuccessfully because of the failure to return to work, with profound consequences to the individual and family, both economic and psychosocial. Even mild TBI may cause lasting problems in tasks calling for sustained attention. There appears to be a complex interaction between pre-morbid characteristics, injury factors, post injury impairments, personal and environmental factors in TBI patients, which influences RTW outcomes in ways that make prediction difficult. Injury severity and lack of self-awareness appear to be the most significant indicators of failure to RTW. Several medical, psychosocial and rehabilitative therapies are currently being implemented in rehabilitation settings which improve the chances of returning to work.

Conclusion. Accurate prediction of whether a particular TBI patient will successfully return to work is not feasible, with RTW rates in the 12 - 70% range. A significant proportion of TBI patients, including those who are severely injured, are able to return to productive employment if sufficient and appropriate effort is invested. A comprehensive approach - medical and psychosocial - eventually entailing adequate vocational rehabilitation with supported employment can improve outcomes.     

Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only.

Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature.

Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke.

Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.