Why did we want to write this book? There are now many textbooks on rehabilitation, including an increasing number specifically about neurological rehabilitation. However, most of these texts are written from the standpoint of a traditional hospital-based medical speciality. Many, understandably, deal with diseases and symptom management with very little attention paid to the broader concepts of disability and community participation. Many disabled people either never enter hospital or spend only a small proportion of their lives within a hospital rehabilitation unit. Thus, it is ironic that modern rehabilitation practice, at least in the Western world, has a hospital focus. There is a clear need for coordinated rehabilitation to be provided in the home, or at least in the local community. This is a significant gap in health-service provision.

We are not aware of any major review of the literature on community rehabilitation and thus we thought it was an opportune moment to write this book. The expertise of the lead authors is in the field of neurological rehabilitation and so we have generally restricted our comments and critiques to this arena. Our primary aim is to review the need behind the provision of community rehabilitation and address the evidence for the efficacy of such community interventions. We hope this will not only stimulate clinical developments in this field but also encourage further research so that the evidence base may become more robust than at present. We hope that we have succeeded in these aims.

Introduction

In the context of community rehabilitation it is particularly important to define the underlying philosophy of service delivery. The predominant model underlying most healthcare provision across the world is the so-called ‘medical model’. However, in recent years disabled people themselves and their lobbyists have been promoting an alternative view of disability – the ‘social model’. This chapter will describe the principles of each model to ensure that the reader can take on board the purpose and implications of the different approaches to disability. However, it is important to emphasize that these two models of disability are not entirely incompatible. A comprehensive health service probably needs to draw on some aspects of both models so that health professionals and disabled people can work together to ensure that high-quality rehabilitation is delivered to all those that need it in an equitable and participative fashion.

The purpose of models

Models attempt to provide a framework through which the understanding of a concept can be easily grasped. The challenge is to make sense of often complex and multifaceted concepts in simple ways. Creating models offer ways in which to make sense of the world. Ultimately, however, they are artificial constructions of ideas that are not created so as to fit neatly into rigid frameworks. Thus, probably there are no models that adequately reflect the entirety of a concept. Different models propose explanations for the same concept in different ways, but really they may only represent different components of the same concept.

Overview

The content of this chapter contains the essence of what rehabilitation should, logically and ideally, be about. Rehabilitation is a service that has been developed for disabled people; thus common sense should dictate that disabled people themselves should be asked what they want out of the service. Unfortunately, due to political and historical influences, this has often not been the case.

Disabled people have been voicing their needs for some time now, but this has largely fallen on deaf ears. Developments within the last few decades have demonstrated that these are not only needs, but they also constitute basic human rights. This in turn has led to some international changes in the legislative framework. Despite growing acknowledgement of their discrimination, many disabled people still feel that the healthcare service fails them. Often needs are assumed, without disabled people being asked directly, which has resulted in ineffective systems of care. This has meant that disabled people have had to find their own solutions to problems. One such solution has been through the development of independent living centres. This service evolved from the principles of the social model of disability (see Chapter 3), and often negates any input by qualified health and social care professionals. The relationship between such centres and traditional rehabilitative institutions varies enormously, often being nonexistent. By combining the academic background of health professionals with the first-hand experience of disabled people themselves, there is enormous scope for establishing a mutually beneficial arrangement.

Overview

An understanding of the concept of community will be useful for two reasons. First, by clarifying what the term means in isolation, it will provide a framework from which we can begin to understand what rehabilitation in the community involves. This will present an opportunity to define community rehabilitation as it stands in practice today, and highlight the factors that are integral to the notion of community.

The second reason for exploring the term is that with a better grasp of its comprehensive make-up we may be guided in the development of more effective approaches to delivering rehabilitation in this context. With better insight, strategies for delivery can be constructed from the inside out, and it may serve to restore and even recreate community links encouraging greater community integration and participation.

At the core of the concept is the notion of some form of boundary that distinguishes one community from the next. While it is a necessity, ironically it can also prevent full integration with society at large. This is discussed along with a possible solution by way of a successful working model. The chapter ends with an application of the findings to the practical reality of current community rehabilitation. Some tentative recommendations are also made in the light of this overview.

Research in rehabilitation

The growing realization is that rehabilitation does not have to be delivered in institutions. Thus the potential for rehabilitation in the community is being proposed and implemented as a viable alternative to traditional methods of rehabilitation. The potential advantages include greater convenience for clients, a familiar environment, involvement of family members and the costs curtailed by not having to provide accommodation. However, this option may be more time-consuming, expensive in terms of therapy time, difficult to coordinate and too much family involvement may be counterproductive (Rice-Oxley and Turner-Stokes, 1999). By delving into the possible opportunities and charting what investigations have already been made, the balance between these advantages and disadvantages may be found.

This chapter aims to consolidate all the research relating to community rehabilitation, and provide a definitive resource to aid further development. It aims to highlight the gaps in the research, and will address accusations that there is a lack of research to confirm the efficacy of rehabilitation in the community (Lafferty, 1996).

Inclusion criteria

Although the studies included in this evaluation will refer to people with a range of neurological impairments, it is apparent that the majority of the literature focuses on stroke rehabilitation. At times it will be pertinent to refer to studies that are not exclusively neurologically based because the findings and models used may aid discussion and understanding. Care has been taken to include studies that employ sound methodological techniques, however, occasionally studies will be included for alternative merits.

Introduction

Measurement and research are key components in the rehabilitative engine. Their ongoing contribution feeds the knowledge base, which not only informs practice and attempts to improve upon it, but also raises the profile of rehabilitation within the medical spectrum, and ultimately wider society. Where it is used as an assessment of efficacy and evaluation, it can justify a need for a specific intervention and monitor progress over time. Such results can satisfy audit criteria, reassure providers and funders of services, as well as aid resource allocation.

As well as being useful, research is essential towards establishing, developing and maintaining effective rehabilitative services. Research and measurement can be carried out in numerous ways and at many different levels. With the steady transition of rehabilitation services into the community, many traditional forms of research and outcome measure are no longer appropriate. It is for this reason that it is necessary to examine the different forms of research and measurement in rehabilitation today, and how they can be applied to the community setting. Some outcome measures have been specifically designed for application in the community, but widescale use is in its infancy. This chapter aims to discuss some of the issues surrounding measurement and research in the community.

Qualitative and quantitative research

Overview

If someone has been diagnosed with multiple sclerosis, sustained a stroke or is living with cerebral palsy, medical and therapeutic intervention is likely to form a substantial part of his or her life. The extent to which it does is dependent on the individual. At the acute end of the spectrum, health-related intervention is likely to be a priority as individuals may be in critical conditions. In the community, individuals may still have impairment-related needs, but they are likely to extend beyond the medical domain.

Neurological impairments not only affect an individual's physical and emotional health, but they can impact on many other areas of life. This includes employment, housing, education, transport and sport and leisure activities. Informal support networks, such as family and friends, may also play a significant part in the lives of disabled people. While rehabilitative practice focuses on health-related needs, many governmental agencies in the North are obliged to meet these additional social needs, including the needs of carers. In the past these needs have often been met in isolation in a number of different ways owing to the organizational structure of the different agencies involved and the source of funding. This has resulted in long delays, bad coordination, lack of communication, gaps and overlap in services, inefficient use of limited resources, inappropriate services, lack of flexibility and ultimately confusion for the client (Beardshaw, 1988).

Introduction

Community rehabilitation in the developed world is in its infancy. However, the less developed world (the South in modern terminology) has been using community-based rehabilitation services for at least 20 years. The purpose of this chapter is to describe community rehabilitation practice in the South and to explore whether any lessons can be learnt from that accumulated experience that can be put into place and developed in the North.

Epidemiology

Rehabilitation services are virtually nonexistent in many parts of the South despite huge, and increasing, numbers of disabled people. Estimates of disability amongst the global population have varied widely according to methods of survey and definitions of disability. However, the generally accepted figure (see Chapter 2) is around 10–14% of the total population. Many of these people have relatively mild disabilities and resources worldwide have tended to concentrate on those with more severe disabilities. The OPCS survey in the UK estimated that about 2–3% of the total population had a disability sufficiently severe to warrant the help from another individual at least once in every 24 hours (Martin et al., 1988). A significant proportion of moderately and severely disabled people are elderly and as life expectancy is less in the South it could be expected that the prevalence of more severe disability is also less. However, this demographic statistic has to be balanced against the higher rates of disability resulting from perinatal problems and communicable diseases.

The aim of this chapter is to pull together the various strands of the book and point to a way forward for future service development and research.

The aim of this book has been to make the case for increasing resources, services and facilities to be placed in a community setting for the benefit of disabled people. We hope that the theoretical case has been made throughout the chapters in this book. However, we also hope that a partial academic case has been made by a comprehensive review of the community neurological rehabilitation research literature. This review has made it clear to us, and probably to the reader, that much more work needs to be done in this field. There is a paucity of adequate studies of the different models of service delivery. Many theoretical models have never been subject to any rigorous evaluation. This is not to suggest that there is a single model of community rehabilitation as this is certainly not the case. Each individual community may have a number of appropriate models that could be developed depending on their own resources, existing hospital facilities, existing community networks as well as their own sense of local community and local culture.

Such literature that has been reviewed has largely had a health focus. There is even less evaluation of broader-based social models of independent living.

Introduction

The purpose of this chapter is to place neurological rehabilitation in a historical context and outline some of the basic underlying principles. Neurological rehabilitation is a relatively new subject and has grown up in a hospital-orientated environment. The need for a new community emphasis will be explored and some theoretical models of delivery discussed. However, first it is important to review briefly the epidemiology of disability in order for the importance of this subject to be placed in an appropriate context.

Epidemiology

The roots of neurology lie in late nineteenth century psychiatry but over the years a rather false distinction has slowly been made between neurological disorders and psychiatric disorders, even though many important disorders such as schizophrenia, manic-depressive illness and senile dementia almost certainly involve an organic disturbance of brain function. In recent years the false distinction between neurology and psychiatry has been made more apparent by the emergence of neurological rehabilitation units in which it is increasingly recognized that the clear distinction is unhelpful. People with traumatic brain injury will nearly always have a combination of physical, psychological, emotional and behavioural problems, which require the expertise of a full multidisciplinary team and one that is preferably trained in both the physical and psychological consequences of disease and injury. Many rehabilitation specialists now also have some training in psychiatry and increasing help is given by the emerging speciality of neuropsychiatry.