The needs of older people with learning disabilities

There has been a growing realization that the needs of older people with learning disabilities are not being met. There has been little attention paid in nursing literature to the needs of this client group. This article will explore the issues about older people with learning disabilities and highlight some of the important areas that learning disability nurses may need to address. It is evident that there needs to be more collaboration between a range of different services and professionals. Areas of good practice can be used in developing innovative and flexible services, which are client led. Learning disability nurses may need to update their skills and knowledge and develop a 'critical practice' approach to meet the many challenges that older people with learning disabilities may pose.     

Improving care for people with learning disabilities in hospital

Evidence suggests that people with learning disabilities have greater healthcare needs than the general population and that these needs are often unmet. A literature search was conducted to identify factors influencing general hospital care for people with a learning disability. Electronic databases, general internet searches and references from the initial search were used to identify relevant studies published between January 1990 and December 2010. Fourteen studies were identified that matched the inclusion criteria. Recurrent themes included the effect of being in hospital on the individual with a learning disability, attitude and knowledge of staff, the hospital environment, role of carers and recommendations for improvement. A critical appraisal tool was used to assess the quality of the selected literature. Despite limitations, all the studies contributed to the evidence base. Although much has been written about general hospital care for people with a learning disability, credible research in this area is lacking. The areas of good practice identified from the available literature need to be evaluated and disseminated so that all people with a learning disability can receive the best possible health care.     

Access to secondary care for people with learning disabilities

A person-centred approach is needed to improve access to secondary health care for people who have learning disabilities. The Department of Health (1995a) drew attention to this issue when it reported that people with learning disabilities sometimes have problems maintaining their health because hospitals fail to work in an interdisciplinary manner with the specialist learning disability services. This article focuses on a case study where the difficulties in operating on a patient with learning disabilities and mental health problems were overcome through a multidisciplinary and patient-centred approach. The case study provides evidence of mainstream health staff and learning disability professionals working together and breaking down barriers to provide a seamless service.     

The Valued People Project: users' views on learning disability nursing

A well-educated and trained workforce is undoubtedly crucial to the development of quality care for people with learning disabilities. Notwithstanding this, and unsure as to the need to continue to commission educational programmes for one part of this workforce-pre-registration learning disability nursing-South Central Strategic Health Authority commissioned the Valued People Project to undertake a detailed strategic review of educational commissioning, along with a review of the specialist learning disability health workforce more generally. This project has recently been completed, and provides a unique evidence-based expert evaluation of the future strategic direction of education commissioning and leadership for workforce issues in specialist learning disability services, as well as the wider NHS workforce. This is the first in a series of articles that reports on one aspect of the project: the focus group work undertaken with parents and relatives of people with learning disabilities, and people with learning disabilities themselves, as to the need and type of health workforce needed to support them in the future. The article concludes by identifying the key messages of importance from parents and people with learning disabilities concerning the future specialist and wider NHS workforce.     

Cognitive behaviour therapy and people with learning disabilities: implications for developing nursing practice

People with learning disabilities are an ageing and increasing population and have been the subject of policy initiatives by the four countries of the UK, detailing the range of supports that need to be in place for this group. The evidence base of their mental health needs is growing and with it the need to ensure the full range of psychotherapies available to the general population are made available to people with learning disabilities. Cognitive Behaviour Therapy (CBT) is now a widely accepted and effective form of psychotherapy for many mental health problems and the evidence base is growing on the effectiveness with the learning disability population; however, the model needs to be applied differently for this group to take account of their cognitive impairment and support needs. Registered Nurses in Learning Disabilities are well placed to apply this approach within their clinical practice; however, there is an absence of leadership and direction in the development of CBT for this group of clinicians. There is a need to support education and practice development to contribute to addressing the emotional needs of people with learning disabilities. Action is required to support education to prepare Registered Nurses in Learning Disabilities to practice CBT and to contribute to the ongoing development of research in this area of clinical practice.     

Translating disability-related research into evidence-based advocacy: the role of people with disabilities

Purpose. The purpose of this article is to make a case for the inclusion of people with disabilities in disability research and in important decisions relating to the utilisation of the research results.

Methods. This is a review article, involving extensive review of both international and local published materials, commissioned research, government policy and related official documents, as well as the use of anecdotal evidence based on the author's own previous research work, experience, knowledge and observations.

Central argument. For disability research to influence positive changes in their lives, people with disabilities ought to play a central role at all stages of the research process, and in decisions made regarding the dissemination and use of the research results.

Conclusions. If properly utilised, research can have positive influence in the lives of people with disabilities. However, this can only be achieved if people with disabilities participate in determining the scope, depth and the conduct of disability research, and the utilisation of the research results. In this way, people with disabilities, in collaboration with their non-disabled counterparts, are likely to ensure that research results have a bearing on the policies and programmes designed for them.     

Parenting by people with learning disabilities: the educational needs of the community nurse

This article discusses some of the findings of a research project which was designed to examine the role of community learning disability nurses in supporting people with learning disabilities who become parents. The need for information and help with the experience of pregnancy, childbirth, becoming parents and bringing up children has been highlighted in a recently issued guide for commissioning and providing services for people with learning disabilities (NHS Executive 1998). This research, however, indicates that nurses do not feel themselves to be adequately prepared for their role in supporting parenting. Responses from a questionnaire survey of 266 practitioners revealed little coverage of key issues relating to parenting on either pre-registration or post-basic courses and suggests, therefore, that some courses may not be meeting the perceived needs of these nurses in this crucial aspect of their role. This is likely to have significant consequences for this client group and suggests that educationalists need to consider ways of including more extensive discussion of parenting in educational provision for the multiplicity of professional groups who support and care for adults with learning disabilities.     

Meeting the needs of people with learning disabilities in acute care

This article describes the work of the Birmingham Acute Hospital Liaison Project, which seeks to support people with learning disabilities in acute care. Following the community care reforms, more and more people with learning disabilities are accessing mainstream primary and secondary healthcare services in community settings staffed by generic rather than specialist learning disability staff. Unfortunately, research suggests that some people with learning disabilities receive poor quality care and that available services are not always responsive to their needs. As a result, the Acute Hospital Liaison Project has a dual role: supporting people with learning disabilities as they enter hospital; and working with ward staff to equip them with the skills and confidence they need to work more effectively with people with learning disabilities.     

The Chronicity of Self‐Injurious Behaviour: A Long‐Term Follow‐Up of a Total Population Study

Background Self‐injurious behaviour (SIB) is a relatively common problem for people with intellectual disabilities and it is known to be associated with various risk markers, such as degree of disability, sensory impairments, and autism ( McClintock et al. 2003 ). Less is known about its long‐term course however. Method The present study was conducted to examine the quality of life and changes in behaviour for a cohort of 49 people with intellectual disabilities and SIB who were all part of a previous total population study conducted in the south of England by Oliver, Murphy and Corbett (1987) . Assessment tools used in the original study, and an additional quality of life measure, the Life Experience Checklist ( Ager, 1990 ), were carried out with informants in the participant’s homes or places of day activity. Results The results show that 84% of the sample continued to self‐injure nearly 20 years on, with no significant mean changes in number of topographies or severity of SIB across the group. No one was living in hospital in this study (cf. many individuals in the first survey) but for those who had moved out of hospital, their SIB had not reduced. More people were receiving psychological treatment; more were also receiving anti‐convulsant and anti‐psychotic medications, though polypharmacy had reduced somewhat. The number of people accessing full‐time day activities had decreased substantially, with 44% of people only accessing structured daily activities for 2½ days per week or less. Conclusions The results of the study add to the growing evidence of extreme chronicity for SIB and the relative lack of impact of treatment for people in whom self‐injury has become well‐established. They imply that early intervention is essential if such behaviour is to be eliminated long term.     

The Self-Esteem of Children with Physical Disabilities—Problems and Dilemmas of Research

It is the purpose of this paper to examine attempts to measure the self-concept of children with physical disabilities using psychometric measures. It is argued that the use of measures of the self-concept as they relate to disability have not previously received careful scrutiny in the literature and the implications of their use as well as their disadvantages will be discussed. The study of the self-concept is still very much at the forefront of modem day disability research, and psychologists have attempted to establish clear links between a person's sense of self and his/her adaptation to the social world. Caution is advised when using psychometric instruments for measuring the self-concept of young people with physical disabilities and it should not be assumed that the presence of a physical disability by itself is an overriding factor in determining the psychological development of children with physical disabilities. Studies of the self-concept and disability are producing spurious findings and it is argued that this may be a phenonomenom of the way data are collected. However, this can have far reaching consequences for young people with physical disabilities as the way the self-concept of this particular group is then portrayed may be negative, destructive, and oppressive. This research paradigm serves none of the young people well, as questions such as whether it is possible to measure the self-concept of young people with physical disabilities or indeed whether or not it is a useful exercise to do so have largely been ignored in previous research studies with this particular group. In conclusion, further research implications for use with this particular subject group will be discussed.     

Addressing the mental health needs of people with learning disabilities

It is now common policy in providing care for people with learning disabilities to ensure improved access to mainstream health services. Consequently, all nursing disciplines are required to have improved understanding about the physical and mental health needs of this client group. This article focuses on their mental health needs. It is predominantly targeted at mental health and learning disability nurses, but will be of interest to all nurses who increasingly come into contact with people with a learning disability and require insight into all aspects of their health.     

Primary health care provision for adults with a learning disability

BACKGROUND: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability. RESEARCH AIM: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities. RESEARCH METHOD: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate. RESULTS: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team. CONCLUSION: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.     

Value of employment to people with learning disabilities

A key objective of the Government White Paper 'Valuing People: A New Strategy for Learning Disability for the 21st Century' is to encourage and assist people with learning disabilities to gain employment. This is because very few people with learning disabilities are in paid work and employment is promoted as a means of improving self-esteem, skills and social integration and acceptability. The aim of this article is to highlight some benefits of, and the risks and concerns around, people with learning disabilities undertaking paid work. Learning disability nurses need to be aware of these issues if they are to advise and support clients effectively. If people with learning disabilities are not able or unwilling to enter the world of work then alternative approaches are needed. Leisure has the potential to offer similar benefits as work to people with learning disabilities.     

Spirituality and learning disabilities: a qualitative study

This article describes a unique empirical study where critical incidents were obtained from learning disability nurses to understand how they attempt to meet the spiritual needs of the people for whom they care. Following analysis, the nurses' approaches to meeting spiritual needs were categorized as 'personal' and 'procedural', and each of these is described in turn. There then follows a discussion on the effects of these nurses' interventions on both clients and their families, and nurses themselves. The findings of the study illuminate how these learning disability nurses attempted to meet the spiritual needs of people with learning disabilities in their care. The findings may help nurses ensure that spiritual needs are identified in the construction of the personal care plans of people with learning disabilities.     

People with learning disabilities who also have mental health problems: practice issues and directions for learning disability nursing

The plight of people with learning disabilities who have mental health problems has become an issue of contemporary importance in the provision of health services to this section of the population. This paper will argue that learning disability nursing has a central role to play in the promotion of mental health for this client group ( Department of Health 1995a ). However, learning disability nursing presently operates without a clear model of mental health. Therefore, before this potential can be realized there is a need to establish the common ground between the discourses of learning disability nursing and those of psychiatric nursing which might be related to this client group. This paper begins by identifying the background issues relating to the problems of meeting the mental health needs of people with learning disabilities. It then proposes that an applied behavioural approach has the potential to provide a coherent theory that can link the discourses of normalization, developmental psychiatry and mental health nursing, whilst also establishing the applied behavioural approach as a powerful technology upon which meaningful interventions can be designed.     

Out-of-area placements in Scotland and people with learning disabilities: a preliminary population study

People with learning disabilities have a different pattern of disease from the general population and high health needs that are frequently unidentified and unmet. Many require responses from general and specialist health services. A picture is emerging of some people with learning disabilities, often with complex care needs, moving from their home area on what is being termed, out-of-area placements, to receive specialist care. However, within the learning disability population, limited research has been undertaken and the impact on health services is unknown. Data were collected from health and social care providers to identify people with learning disabilities moving in and out of services across Scotland. Further data about the consequences and impact of out-of-area placements were gathered in one geographical area using focus group methodology. The results suggest that people with learning disabilities are moving in, out and across Scotland, often as a result of breakdown of local care arrangements or because of lack of specialist resources. Planning, service development and effective communication need to be in place to address the needs of this increasing and ageing population.     

Involving people with learning disabilities in nurse education: towards an inclusive approach

There is limited evidence that explores how to effectively include people with learning disabilities in nurse education in the U.K. The majority of reported work relates to mental health nursing and social work training (Morgan and Jones, 2009). This paper specifically reports on the processes and activities undertaken by the authors with people with learning disabilities in the development of a new BSc learning disability nursing programme, a specific branch of nursing in the U.K. In doing so, findings and discussion from two separate projects involving students and people with learning disabilities will be integrated into the paper. EPICURE (Engagement, Processing, Interpretation, Critique, Usefulness, Relevance and Ethics (Stige et al. 2009) is adopted as a qualitative framework throughout the paper to evaluate the reported work that took place between September 2006 and October 2010. Suggestions are therefore made regarding the benefits and challenges of striving towards an inclusive approach to user involvement in nurse education, with particular reference to learning disability. The work presented in the paper demonstrates how through careful involvement of this population, deeper learning opportunities for all nursing students can be created.     

A study to determine the qualities of a learning disability practitioner

In recent years a number of research studies have explored the role of key professionals in the field of learning disability. These have been predominantly large studies, nationally commissioned and offering a broad structural picture of the professionals' current function. This article explores a localized research study undertaken in the Avon, Gloucestershire and North Wiltshire area of the south-west of England. While acknowledging the national context in which both learning disability nurses (RN(LDs) and social workers operate, this study offers a more intimate insight into what form of future practitioner would be most effective. The qualitative research study included a series of topic-focused interviews and focus groups comprising professionals, people with learning disabilities, carers and representatives from the voluntary and independent sectors. Findings established that the desired future practitioner would maintain the specialist way of thinking of the RN(LD), together with the care management facilitation role of the social worker. For the research participants the optimal choice of practitioner was a dually qualified RN(LD)/social worker. Although the study was set in a particular locality, the researchers suggest that the outcomes both endorse and identify tensions in the proposed national developments for professional education, at a crucial point for the delivery and design of health and social care learning disability services.     

Effective health care for people with learning disabilities: a formal carers' perspective

This paper explores the perceptions and experiences of formal carers, working in three different geographical locations in the south of England, in accessing primary health care for people with learning disabilities. The sample included six multidisciplinary, community learning disability teams and 11 managers of small homes for residents who had learning disabilities. Data were collected through focus group and individual semistructured interviews. Levels of collaboration between primary health care groups and the community learning disability teams and the managers of small homes were assessed. Questions were focused upon the importance of primary health care and the key care provider within the community setting. Although some good experiences were recorded, the overall levels of collaboration were poor. Health care was perceived as very important by all of the respondents. The general practitioner (GP) as the coordinator of health care was perceived as the normal model within our health care system but the majority of respondents questioned the effectiveness in relation to their own experiences of accessing health care for people with learning disabilities. The relocation of this role to the learning disability nurse was perceived as a possible solution.