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CHAPTER ONE: INTRODUCTION

Background

1.1. Communication allows us to express ourselves and to have our needs met, it affects the way in which we form our relationships, negotiate the classroom, get through interviews, hold down a job and interact with our families. Although most of us may experience slight difficulties with aspects of our communication when we are nervous or when we forget things, generally we tend to take communication for granted and pay it relatively little attention. It is just something that we do like walking or eating.

1.2. However, there is a sizeable group of people, both children and adults, who experience difficulties expressing themselves and having their needs met. These people are variously described according to the perceived cause of their problem, for example from stroke or learning disability, or in terms of the specific nature of the difficulty that they experience such as expressive language disorder or stammer. What they all have in common is some level of communication support need ( CSN).

1.3. Recent policy has focused on a commitment towards a more comprehensive provision of services that meets the needs of individuals with CSN. This should be informed by robust research that links the needs and experiences of this group with policies underpinning service delivery. This review will explore how people with CSN engage with services. The review will highlight barriers to effective service delivery, provide examples of good practice, indicate gaps in the literature and make recommendations for subsequent phases of research.

1.5. Disability has been traditionally explained by what has become known as the "medical model" of disability. This model tends to locate a problem within the individual and suggests that given a particular regime, the problem can be "cured", and that there is a normal state of "health" which can be achieved. This is associated with terms such as disease, disorder and impairment, which emphasise the pathological nature of the problem. This in time results in individuals being seen in terms of diagnostic categories and a focus on specific difficulties (Smart and Smart 2006). This approach has been criticised as failing "to value people and to celebrate difference" (Jordan and Bryan 2001). An alternative to the medical model is the "social model" of disability. The social model of disability describes disability as arising from barriers within society not the individual (Finkelstein 1980). This model focuses on societal barriers and what can be done to remove those barriers, rather than on the nature of specific impairments. Therefore the focus for change is societal and environmental rather than individual, and environments must be adapted to accommodate differences and be inclusive of all members of the community. This review draws heavily on the social model of disability, considering the experiences and barriers common to people with a wide range of communication support needs. "Needs" in this context refers to both the needs of the individual and to what society needs to do in order to improve the individual's access to all aspects of society.

Aims and Objectives

1.6. The aim of this review is to review the existing literature on the experiences and needs of people with communication support needs ( CSN) in order to help define and assess the scale and range of needs. It is anticipated that the review will inform further phases of a programme of research designed to address the concerns of people with communication supports needs.

1.7. The key objectives of the study are to:

1. Define 'communication support needs' for the purposes of this review;
2. Scope out the range of barriers to communication experienced by the heterogeneous groups who have CSN;
3. Explore the heterogeneous nature of the various groups and draw out the commonalities, differences and complexity of needs according to emerging principles (for example, depth of needs and multiplicity of needs);
4. Analyse how barriers to communication impact across all areas of the lives of those who have CSN;
5. Analyse how having CSN affects people's experience of service provision (including their use or non-use of services);
6. Analyse the available literature relating to the extent to which service providers understand and are able to address the specific requirements of people with CSN;
7. Identify where there are gaps in the literature;
8. Make recommendations for subsequent stages of the research on, for example the range of participants to include in the research, research topics that should be addressed.

The review does not focus on speaking English as a second language, or adult literacy and numeracy issues.

Research Methods

Reference group

1.8. As part of the project a reference group was set up. This comprised practitioners, academics and members of voluntary sector organisations working with people with CSN. This group met on two occasions, discussed the direction of the review and made recommendations related to specific literature which was relevant for the review.

The process of the review

1.9. The review was based on what is known as a systematic review of the literature. Systematic reviews are commonly used in the fields of health and education to provide a summary of all the relevant literature in a given area for the purposes of informing policy or practice. Such reviews start with the development of a search strategy to identify relevant published literature. This search strategy is then applied to a range of predetermined electronic or on-line databases. The studies identified are then sorted for relevance and summarised in a consistent fashion. The present review was supplemented by an examination of policy documents and documents related to practice regarding communication support needs and a review of the "grey literature" that is unpublished literature derived from practitioners and researchers in the field

1.10. Such reviews are intended to be replicable in that another party could follow the same procedure and reach the same conclusions. Furthermore they are updated to reflect the developing evidence base in a given subject area. The extent to which a systematic review is feasible is partially dependent on the specificity of the topic concerned. The more clearly defined the category under review the easier it is to carry out such a review. A wide range of terminology is used in the area covered by the present review, and the term 'communication support needs' is relatively new, and this made aspects of the searching process problematic and increased the reliance on alternative sources of information. The systematic review element was therefore only the starting point of the present review.

Search strategy

1.11. The full search strategies are provided in Appendix 2.

1.12. A combination of thesaurus terms and free text terms were entered into several online bibliographic databases. Initial searching identified 908 publications that could be of potential relevance to the research question ( see Appendix 3 for a breakdown of the results of the search strategy).

1.13. In addition to this the reference group were asked to provide unpublished/grey literature or literature that would not be identified in the online databases but was available in the public domain.

1.14. The results of the systematic searching were entered into Reference Manager software. The titles and abstracts of studies identified from systematic searching of the online databases were screened against the selection criteria (see below). The full reports of the titles and abstracts that met the criteria at the first stage of screening were then obtained for further screening. Material obtained from the reference group was also screened against the selection criteria.

Inclusion and exclusion criteria

1.15. Like the search strategy, the inclusion criteria for the study were kept broad. Priority was given to studies that provide data on methods used to support communication. Studies that focus on individual therapeutic interventions which do not specifically address the issue of the restriction of activity or participation in society have not been included. The selection criteria for included studies are provided in Appendix 4.

1.16. Studies were included if they fell into one of the following categories:

1. Types of communication support needs ( CSN)
2. What are the impacts of CSN on the individuals concerned and more broadly on society
3. What has been done to address CSN:

1.17. It was not the intention of this review to address the issue of communication support needs related to speaking English as a second language. These have been addressed recently within the Scottish context (Perez, Wilson, King et al. 2006). However, the distinction is not always very clear in some areas. For example, the Perez at al. report clearly seeks to address a broader group of people who fall within the remit of the Translating, Interpreting and Communication Support ( TICS) services including people with hearing and/or visual impairment. Similarly, in a recent consultation entitled "Strategy for Scotland's Languages: Draft Version for Consultation" (Scottish Executive 2007) includes, within it, a statement "It is important that communication strategies are developed for people with communication support needs" ( SE 2007 p.15).

Quality judgements

1.18. It is characteristic of the systematic review process to impose quality judgements on the papers which meet the inclusion criteria. Such criteria commonly include blind assessment or quality of randomisation. The nature of the greater part of the studies identified in the present search precludes such a stringent criteria. In the main they reflect the experiences of individuals with communication support needs and do not include experimental manipulation of any sort. It is much more difficult to make clear judgements as to the quality of this range of papers and for this reason we have not sought to make such judgements.

1.19. The majority of studies included in the review came from the literature identified by the reference group. Most of this literature was not written in a manner similar to published articles in peer-reviewed journals and therefore could not easily be submitted to the data extraction processes that traditionally feature in conventional approaches to systematic reviewing.

Structure of Report

1.20. This chapter has looked at the methodology of the search strategy and the sources of grey literature. Chapter 2 goes on to address the issue of who can be described as having communication support needs. Chapter 3 provides an overview of the findings. The remaining chapters look at the more detailed findings across a series of contexts. These contexts are as follows:

• Health and Social Care
• Education
• Employment
• Criminal justice
• Housing
• Experiences of other services, including housing and financial services

1.21. In each case the findings are discussed in terms of the barriers to inclusion experienced in the specific area and in terms of effective strategies to reduce the impact of these barriers. These personal experiences are seen in terms of their impact on the person with the disability, their family and immediate social circle. They are also seen in terms of the attitudes of those in the wider society. One area which is of particular concern to people with communication support needs, as it is to many people with disabilities, is their experience of transitions, both across the age span, and between and within services. Each section includes information on the evidence for potential improvements in each of the areas covered. Finally, a summary of the main findings is included at the end of each chapter.

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