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.     

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.     

Meeting the health needs of older people with learning disabilities

The increasing population of older people with learning disabilities may lead to higher demand for contact with registered nurses. To date, little research has been undertaken regarding the role of registered nurses in meeting the health and care needs of this client group. In this article, the author reports on the second stage of a three-stage research study that used six case studies to explore this issue. Implications for nursing were identified in areas such as health needs, record keeping, medication, advocacy, social aspects, ageing in place, percutaneous endoscopic gastrostomy (PEG) feeding, spirituality and end-of-life care. The author concludes that registered nurses will need to continue to remain up to date to meet the complex needs of older individuals with learning disabilities.     

The evolving role of community nurses for people with learning disabilities: changes over an 11-year period

Aims and objectives. To provide an overview of the changes in the caseload and working practices of community nurses for people with learning disabilities (CNLDs) over an 11‐year period within one region of the UK. Background. Recent reviews of government policy within the UK and internationally have highlighted the need to promote inclusion and health facilitation for people with learning disabilities (intellectual disabilities). The CNLDs have been highlighted as having an integral role in achieving these objectives. However, little is known about the current role of community nurses and how this has evolved over the past decade. Designs and methods. A survey design was used in which the total population of CNLDs within one region of the UK were asked to complete a postal questionnaire. Results. Forty community nurses in Northern Ireland completed questionnaires. This provided information about 1559 people with learning disabilities on their current caseloads. Results showed less involvement with children, more focus on adults with physical and mental health needs and nurses often appeared to have a monitoring rather than an active clinical role. Data also identified an increasing caseload size and a pattern of referral largely from within learning disability services. Conclusions. The role of CNLDs has altered in Northern Ireland over the past 11 years with some evidence of a reorientation towards a more health‐oriented focus. Further consideration needs to be given to how well this will meet the changing needs of people with learning disabilities and their families in light of the increasing emphasis on the provision of inclusive services. Relevance to clinical practice. Community nurses need to review their current role, caseload management and links to primary and acute care if the policy objectives of inclusive services and health facilitation are to be achieved. It will also be necessary to revise their education preparation in light of the changing role of CNLDs.     

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.     

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.     

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.     

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.     

Learning disabilities within mental health services: are we adequately preparing nurses for the future?

Current government policy dictates that where possible patients who have learning disabilities should be cared for within the framework of ordinary generic national health services, with specialist provision kept to a minimum. The mental health care of this client group may be problematic and diagnostic overshadowing can occur because of complex physical, emotional and behavioural issues. If the government agenda is to be followed, this will have an impact on both the pre- and post-registration education of mental health nurses and therefore this must be addressed by the nursing regulatory bodies. There is also an argument for people who have a learning disability in addition to mental health problems to be considered a specialist group within generic mental health services as are other specific groups because of the complexity of their conditions.     

Using advocacy to safeguard older people with learning disabilities

Older people with learning disabilities may be viewed as potentially vulnerable and therefore in need of safeguarding. Advocacy should be part of the safeguarding process and is useful to ensure the views of older people with learning disabilities are communicated. The role of nurses in advocating for individuals in their care has been made clear by the Nursing and Midwifery Council. However, advocacy is not without risks and dilemmas for nurses and at times they may need to take an indirect role by promoting self-advocacy and independent advocacy.     

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 specialist learning disability nurse in Wales

Fisher M. International Journal of Nursing Practice 1997; 3: 188–190
The specialist learning disability nurse in Wales
This paper reflects on the development of services for people with learning disabilities within the United Kingdom and focuses on the role of the specialist nurse. The nurse's contribution to the care of this client group has been the subject of debate and controversy for a number of years. Developments within the learning disability field in Wales in particular are explored, with the All Wales Strategy for People with Learning Disabilities providing the background and context for these developments. An example of how specialist nurses from around Wales came together in order to share good and best practice is discussed. The conclusion is that the specialist learning disability nurse has a great deal to offer, but must be prepared to work together with other professionals as well as service users and their families.     

A day center for elderly persons with learning difficulties: The consumers' views

Research with older people who have a learning disability has flourished in recent years. One of the issues being considered is the way in which the needs of this client group can be met by service providers. In addition, there has been an increasing awarences of the right of clients to express their views regarding services. This study investigates consumer satisfaction with a day center for older people with a learning disability. Interviews were conducted with 15 clients. Results revealed that all participants were satisfied with some aspect of the service. The major sources of satisfaction were the social contact and the activities facilitated by the center.     

Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland

Over the last 30 years there has been a considerable increase in the life expectancy of people with learning disabilities. This has resulted in changing patterns of morbidity and mortality and an increasing recognition of the health needs of people with learning disabilities. Major strides forward have been made in the reduction of preventable illnesses among the general population. However, among people with learning disabilities such illnesses have received only limited health promotion attention until recently. In the last decade major gaps have been identified in the ability of current primary health services to respond to the needs of people with learning disabilities. The need to respond effectively to this situation has been identified as a priority by the current United Kingdom Government. Following an overview of the literature in relation to the changing health profile of people with learning disabilities and the need for health screening, consideration is given to some of the key difficulties which may be encountered when attempting to utilize current primary health services. The analysis of data derived from the health screening of 373 people with learning disabilities by a community nursing service in Down and Lisburn Health and Social Services Trust reveals the need for further action in relation to cardiovascular status, sensory deficits, mobility and aspects of sexual health.     

Identity Conflict in People with Intellectual Disabilities: What Role do Service‐providers Play in Mediating Stigma?

Background This study explores the relationship that the people with an intellectual disability have with their ‘learning disabled’ identity and the influence of intellectual disability services on this relationship. Methods Information was collected using three methodologies: (1) audit of referrals to a community psychology service for people with intellectual disabilities; (2) service‐users focus group; (3) survey of the attitudes of intellectual disability service‐providers. Results The results indicate that the conflict about an intellectually disabled identity may be an area of unmet need in services for people with intellectual disabilities. Conclusions There is a need for careful consideration of the ways in which this identity is managed by service‐providers.     

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract

People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.     

An evaluation of community learning disability nurse teams in two London boroughs

One of the tasks for all the recently established local learning disability partnership boards is to review the role of specialist learning disability services by autumn 2003. This article presents a summary of a recent operational and strategic evaluation of community learning disability nurse teams working in two boroughs, managed by social services. Overall, local caseloads suggest that there are not enough nurses in the two boroughs. Furthermore, there is no spare capacity to address the Government's directive that specialist staff become health facilitators, and give more time to helping primary and secondary care develop the capacity of their services for people with learning disabilities (Department of Health, 2001). Locally, these findings challenge the partnership boards and social services to adequately resource specialist services, meet Government targets and address nationally acknowledged, disproportionately high, unmet health needs in the learning disability population.     

Reactions of nurses and therapists in mainstream health services to contact with people who have learning disabilities

Government policy in the United Kingdom is to make the National Health Service accessible to all citizens, including those who hitherto may have relied on specialist services. It is recognized that the attitudes of health professionals can be a major influence in making this happen. To date there has been a paucity of research studies involving nurses and therapists, two of the largest groupings of health care workers. The present study contrasted the reactions of nurses and therapists to their contact with people who have learning disabilities, with those of staff working in specialist services for this client group, and with students who are not involved in health services. Over 1000 respondents - mainly university students on undergraduate or post-graduate courses - completed a written questionnaire. Although nurses and therapists had significantly less contact with people who had learning disabilities during their work than did staff in specialist services, there were no differences in terms of contact in personal life. In both instances their contacts were higher than those reported for non-healthcare students. However both nurses and therapists were significantly less confident in working with a patient who had learning disabilities as opposed to one with physical disabilities. By contrast, willingness for social contacts did not vary across the four groups although respondents with previous personal contact were significantly more willing for this than those with no prior contact. The results confirm that the form of contact is a more salient variable on staff attitudes than contact per se. Hence, changed reactions are more likely to come about from successful contacts in a work rather than social environment. The implications are discussed for initial and post-qualifying training courses, especially for suitable placement experiences. Suggestions are made for future research that focuses on increasing the expertise and confidence of nurses and therapists in working with patients who have learning disabilities.     

THE PARTICIPATORY RESEARCH PARADIGM AND INTELLECTUAL DISABILITY

We believe that we are living through an age of transition, perhaps moving towards some ‘post technological’ era and that this time is marked by considerable turbulence in society. Because of die place of disability within our society this era contains more dian its fair share of risks to people with disabilities. Our enduring concern is about the ability of human service organisations to deliver meaningful services—to become or to remain compassionate, humane and responsive to people's needs and, in particular, to devise strategies in which research and action are closely linked. In this study we advocate a participatory research paradigm as a powerful and liberating strategy to deliver meaningful services to people with disabilities. Through the participatory process the sharing of client experiences benefits both the clients (by turning their passivity into activity) and those who deliver services to them. It is a major thesis of this paper that a new research paradigm in the field of learning disability must emerge from a clearer comprehension of the essential identity of people with a learning disability and the reality of their life experiences and situations.     

Learning disabilities: a survey of community nurses for people with prevalence of challenging behaviour and contact demands

Background. There is scant knowledge on the contacts community nurses for people with learning disabilities have with clients who display challenging behaviours, or the numbers of such people on these nurses‘ caseloads. This study was undertaken in a UK region with a population of 1.68 million people. In this region it is estimated that there are 8500 people with learning disabilities who are in contact with services, this includes around 500 people remaining in hospitals awaiting resettlement. Aims and objectives. The research aims were to identify the overall caseload sizes of the nurses, the prevalence of people with learning disabilities who have challenging behaviours on the nurses’ caseloads and what contact demands these people required. An additional aim was to discover courses or training that helped the nurses to fulfill their roles. Design and methods. A postal survey was undertaken of the total population of community nurses for people with learning disabilities in the region. The method of data collection was a self‐completion questionnaire. Results. The study found that people with challenging behaviours accounted for over a quarter of the combined caseloads, and these clients required the most frequent visits from the nurses. There was a wide range in the number of clients on the caseloads of each nurse but overall these were higher than in other parts of the UK. Conclusions. It is concluded that community nurses for people with learning disabilities have large caseloads and people with learning disabilities who have challenging behaviours, who account for over one‐quarter of the clients they visit, require much more frequent contact visits than other clients. The combination of high numbers of clients (or low numbers of these nurses) may impact on how such nurses are able to perform their role and functions. Relevance to clinical practice. An increase in the numbers of community nurses for people with learning disabilities and skill development in caring for people with challenging behaviours is recommended. If this is not performed the clinical effectiveness of this group of nurses with respect to their work with people who challenge services may be unduly hampered.