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CHAPTER 1 INTRODUCTION
The Research in Context
1.1 The Scottish Executive Action Plan Community Care Services for People with a Sensory Impairment, launched in 2004, identifies the common community care priorities of people with a sensory impairment and aims to sets out recommendations for how basic common needs can be met more effectively and consistently for the benefit of sensory impaired clients.
1.2 Essentially, the plan focuses on the need for improved access to information and to services and for quality of service delivery and staff training.
1.3 The Plan sets out short, medium and long term goals for meeting some of the most commonly identified needs of people with a sensory impairment.
1.4 For many, sensory impairment and mental ill-health combine to exacerbate social stigma and barriers to accessing services. Research has historically shown that sensory impairment is, for the most part, perceived by others as a medical or disability issue and, thus, its effects on mental health are poorly recognised. Combined, sensory impairment and mental ill-health present a unique challenge to those who experience them, their carers and the care providing community.
1.5 In 2001, the Scottish Executive launched the National Programme for Improving Mental Health, a programme to raise the profile of mental health improvement (promotion and prevention) at both the local and national level in Scotland. That National Programme recognises that mental health is often accompanied by other social or physical challenges, including sensory impairment.
1.6 The Framework for Mental Health Services in Scotland, launched in 1997, highlights the importance of a partnership approach in promoting and maintaining mental well-being. It advocates a joint approach to service planning, commissioning and provision of integrated services with service users and their carers as core stakeholders in the framework's implementation.
1.7 Earlier this year, the Service Profile section of the Framework for Mental Health Services in Scotland was expanded and provides a template to statutory mental health service providers to ensure equality of access to mainstream and specialist services for those who are deaf, deafened, hard of hearing, blind or deafblind and also have a mental health problem.
The Research Agenda
1.8 In order to complete recommendation five of the Sensory Impairment Action Plan, the Scottish Executive Heath Department commissioned work to examine the needs of, and community care services available for, people with a sensory impairment in Scotland. This included identifying good practice and gaps in service and investigating the experience of people with sensory impairment who receive community care services.
1.9 Recognising the centrality of metal health and well-being to community participation, the research also offered an opportunity to consider the mental health needs of sensory impaired adults alongside their community care needs.
1.10 The underlying purpose of the research was to identify changes required in community care services for people with a sensory impairment so that present inconsistencies and specialist needs can be addressed.
1.11 The main aims of the research were to:
- review the literature on sensory impairment needs and services, including those relating to mental health, identifying features of good practice from the literature;
- map out the nature and availability of community care initiatives and services to support sensory impaired adults in Scotland;
- map out the nature and availability of mental health initiatives and services to support sensory impaired adults in Scotland; and
- explore the views and experiences of sensory impaired adults (and their carers) on the community care and mental health services they access to meet their needs.
1.12 This report presents the findings from the review and draws out implications for future developments to address the community care and mental health needs of sensory impaired adults in Scotland.
The Research Process
1.13 The research involved three core elements, these being:
- a literature review;
- a mapping exercise and consultation with service providers; and
- consultation with service users and their carers.
1.14 The literature review was focussed primarily on the care needs and services for sensory impaired adults, including those relating to mental health, and sought to identify the main findings from national and international literature as well as identifying gaps in information and features of good practice from existing research evidence. This was undertaken at the start of the research and focussed primarily on research from the last five years. In some cases, due to a lack of contemporary literature in the field, documents were sourced from earlier years. This was especially true for literature regarding deafblindness which was difficult to find.
1.15 The literature review encompassed published and unpublished documents available from academic libraries, public libraries, specialist libraries and, most notably, literature from a number of large charitable organisations and voluntary agencies. Indeed, much of the work that was reviewed had been carried out by voluntary sector care agencies as part of internal reviews or client surveys of need.
1.16 Following completion of the literature review, a mapping exercise was undertaken. The mapping exercise involved three distinct stages, these being the development of a database of services, a survey of services and use of Geographical Information System ( GIS) mapping to cartographically map service locations.
1.17 An initial internet search was carried out to identify services across Scotland that offered services to deaf, deafened, hard of hearing, blind, visually impaired or deafblind adults. A list of 'core services' that were captured in this initial search were then used to identify further services using a snowballing technique, for example, by following links included on web-pages and using contact lists provided on web-pages to search for sites of other providers. Additionally, basic searches were carried out for generic mental health services in Scotland.
1.18 For fullness of coverage, the database included generic as well as specialist social work and community care service providers (generic mental health services were also included), services based outside of Scotland that offer only visiting or part-time coverage in Scotland and national organisations which provide mostly signposting services to other providers but offer no direct services themselves.
1.19 All services included in the services database were invited to respond to a questionnaire survey. An eight page questionnaire was developed with the specific aim of gathering detailed information about service provision, training of staff, cross sector working, funding and monitoring and evaluation processes. (The questionnaire can be found in Appendix A). The initial survey distribution was undertaken in April 2005 with a follow up exercise carried out in May 2005.
1.20 To complement survey responses, a number of telephone and face-to-face interviews were carried out with service providers identified during the early mapping exercise. The consultation included contact with representatives from local authorities and NHS Boards to explore community care and mental health service provision respectively.
1.21 Consultation with service providers specifically sought to examine the extent to which generic mental health services can effectively meet the needs of people with mental health problems and sensory impairment and to identify, from a service provider perspective, any gaps in service provision. Additionally, it sought to identify methods local authorities are using to evaluate the services offered to sensory impaired adults and to establish what information is currently used by health and social care planners to inform the development of services for people with a sensory impairment.
1.22 Finally, one of the core features of the Sensory Impairment Action Plan is a recognised need for greater participation of service users in the development of future service delivery protocols, and this essentially involves engaging with service users in the consultation exercises informing these developments. A final, vital part of the current research, therefore, was to engage with service users and their carers. This explored current service usage, identified gaps (from a users and carers perspective) in service provision relating to unmet need and elicited views on the ways in which the services that they accessed promoted positive mental health or detracted from it.
1.23 Over 100 adults were consulted as part of the work, including five carers. This included 85 face-to-face consultees (by means of eight focus groups and 34 individual interviews) in addition to one online focus group and 22 written and verbal contributions received via service providers.
1.24 All adults were recruited either directly through service providers with whom they were currently engaged or via newsletters distributed by national membership organisations.
Research Caveats
1.25 Within the broad research remit, a number of important caveats should be noted.
1.26 Firstly, this review was focused solely on the needs of sensory impaired adults (aged 16 and over) and did not attempt to address at any level of detail the needs of sensory impaired children. Although there may be valuable lessons from the current research which might usefully be applied to the under-16 arena (for example, early intervention requirements), the personal and social challenges of the younger age group require dedicated attention that was not afforded within the current research.
1.27 Secondly, despite efforts to achieve broad opportunity of participation in the consultation, there is a need to recognise that the views of those consulted may not be representative of all those with an interest in the community care and mental health service agenda for this unique client group.
1.28 This was especially true for statutory sector representatives who were contacted and who often provided responses on behalf of their respective local authority or NHS Board. In most cases, participants caveated their own response as being limited to their own awareness and that of colleagues who were present at the time that the review was carried out. In many cases, consultees offered what they described as a 'best guess' in light of lack of available written policies, guidelines or standard practice for working with sensory impaired adults. Many service providers offering mainstream community care and mental health services explained that occurrence of referral from sensory impaired adults were few and far between and, therefore, often dealt with on an ad hoc basis.
1.29 Similarly, it is important to note that, despite consulting with a range of service users, the scope and timescale for the review means that there may be some service users who would have wished to take part but who were unable to do so. Importantly, this included people who were unable to access appropriate guide/communication support in order to feed in their views.
1.30 Related to this point is one of recruitment strategies. Given the hard-to-reach nature of the target client group, the invisibility of many sensory impaired adults in official statistics and lack of engagement with services, it was not possible to achieve significant input from those currently not engaging with services and therefore able to provide a valuable view on unmet need and local accessibility problems. That said, however, some of the newsletters received by members of voluntary organisations did result in independent contacts with the researchers.
1.31 Many of the service providers and users consulted in this research were active members within the sensory impairment community, many serving on forums and other committees already working on their own research and other agendas to improve service delivery for peers. This may mean that some of the views expressed may not be representative of those less active members of the sensory impaired community. However, the self-selection and voluntary nature of participation means that this was, to some extent, inevitable.
1.32 Finally, although the team had initially intended to carry out service user consultation in four case study areas (Aberdeenshire, Dumfries and Galloway, Glasgow and West Lothian), representing north, south, east and west regions, a number of responses and inputs where received from service users living outwith these areas and are included in this report.
1.33 Analysis of responses suggests that there was little variation in responses geographically, with the exception of some very specific services received, and the main themes remained largely the same. The report is presented under these main themes and only where specific geographical variation was noted is this highlighted.
Presentation of the Report
1.34 This report presents the main findings from the Review. Chapter 2 provides an overview of the demand for services in Scotland, offering operational definitions for the main communities of interest and presenting data which estimates the prevalence of sensory loss in Scotland.
1.35 Chapters 3 and 4 summarise the evidence from the literature review regarding the community care and mental health needs of sensory impaired adults.
1.36 Chapter 5 presents the findings from the survey of services and the mapping exercise.
1.37 Chapters 6 and 7 offer an overview of the main gaps identified from the research in respect of service provision and service delivery from the service users and service providers' perspective. This chapter also includes a section on features of good practice.
1.38 Chapter 8 summarises the main challenges identified from the work and presents suggestions for future action to address the gaps identified .
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