The sexual health needs of people with learning disabilities

The sexual health of people with learning disabilities raises important management and practice issues for health services, and should be examined in the context of the current policy emphasis on advocacy, person-centred services and social inclusion (Department of Health, 2001). People with learning disabilities may have limited access to mainstream health services, and sexual health and genitourinary medicine (GUM) services are no exception (DoH, 2001; 1998). They are often excluded from society, either because they are 'segregated' within specialist support services in the community or because they live in isolation with carers, and health and social care models do not always join up locally to meet their needs.     

Promoting effective interventions for sleep problems

Health visitors and children's nurses can do much to help families prevent the development of sleep problems in children with and without disabilities, and to treat existing disorder. Sleep difficulties among children with learning disabilities are common and receive inadequate attention in most practitioners' training. This needs to be urgently addressed because untreated issues may persist into adulthood. A sound knowledge of sleep theory, the increasing literature on sleep, and the high quality sleep practitioner training that is available can all support health professionals in this role. Working in partnership with the family and carers is fundamental to success. Specialist services such as children's learning disability nursing teams, child and adolescent mental health services and sleep centres can assist with complex cases.     

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.     

Physical activity and learning disability

The inclusion of people with learning disabilities in sporting activities promotes a number of positive outcomes. These may include opportunities for social inclusion, the creation of positive role models for other people with learning disabilities, the opportunity to present people with learning disabilities in valued social roles to a global community, sharing of common interests and experiences, and social and competitive rewards. There is also the potential for positive physical and mental health outcomes. Current data suggests that people with learning disabilities are physically less active than the rest of the population, more likely to lead sedentary lifestyles and more prone to obesity and associated health conditions. However, there are a number of ways in which nurses may support both individuals and their carers to engage with and promote programmes of physical activity. These may include the design of individual activity plans incorporated within health action planning aligned with suitable rewards systems. Action might also be taken in terms of health promotion advice and information to carers and those providing facilities for physical activity.     

Maintenance of oral health in people with learning disabilities

The oral health of people with learning disabilities is often compromised, which has a deleterious effect on their well-being. This article explores the need for specialist intervention. Barriers to effective care are scrutinised and potential solutions are suggested. As many people with learning disabilities are reliant upon their carers for the maintenance of their oral health, the article concludes with an analysis of advice to carers.     

Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A 'service user' may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Caring for people with learning disability using care management

Current Government health policy is moving towards the delivery of services for clients with a learning disability through mainstream primary care services. At present there are difficulties in providing health services that meet the needs of clients. These include lack of resources (financial, physical and human), time and expertise. Yet clients with learning disabilities often have some of the most complex physical and mental health needs and they have a right to expect access to services that are responsive and sensitive to their requirements. In light of the current policy and stated difficulties, all service providers and stakeholders need to work together to review how services are provided and to negotiate shared resources. This article suggests adopting a care management approach, where clients are supported by different providers with a lead practitioner taking responsibility for assessment, planning and review in partnership with the client and his/her carers.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

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.     

A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

Background Twenty six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method Twelve young people were randomly allocated to the treatment group, which had the help of the liaison worker, and 14 young people were allocated to the control group without the help of a liaison worker. Baseline measures were undertaken with all the young people and their carers. This was followed by a 9‐month trial, consisting of the liaison worker helping the treatment group to get in touch with and take up appropriate services, mainly in the areas of psychiatric appointments, benefits advice, house adaptations, leisure facilities and support and care for the young person. The control group participants did not have the access to the liaison worker and were accessing services using the normal routine. Assessments were carried out post‐treatment to assess whether the use of a liaison worker had had any effect on outcomes for the two groups. Results Twelve young people completed the study in the treatment group and 14 in the control group. Participants allocated to the specialist liaison worker had statistically significantly more frequent contact with services and with more outcomes, than the control group, and significantly lower scores on the Strengths and Difficulties Questionnaire (SDQ). Conclusion The use of specialist liaison services in ensuring adequate access to services for young people with learning disabilities and mental health needs from the South Asian community proved to be significant and effective compared with young people and their families accessing services on their own.     

Access to cervical screening for women with learning disabilities

Evidence shows that the uptake of cervical screening is much lower in women with learning disabilities compared to other women. A literature review was conducted, including published and unpublished international empirical research, discussion articles and reports written in English from 1990 to October 2007, to identify what factors are preventing women with learning disabilities from accessing cervical screening, and what can be done to encourage uptake. From the literature reviewed, factors that prevent women with learning disabilities from accessing cervical screening fell into the following categories: administration errors; access to a GP; assumptions made by healthcare professionals about women with learning disabilities; perceived difficulties obtaining consent; attitudes of carers; the beliefs and experiences of women themselves; lack of accessible information; and physical difficulties. Findings on how cervical screening uptake can be improved in women with learning disabilities were categorized into: preparation with the women; working in partnership; and encouraging good practice. The literature review showed that there are many factors that may be preventing women with learning disabilities from accessing cervical screening, many of which can be overcome by healthcare professionals adhering to good practice guidelines, thus ensuring that women with learning disabilities have their right to access cervical screening services acknowledged.     

The development of a screening tool to identify carers in a general practice by a large-scale mailed survey: the experience in one Scottish general practice

Aims and objectives. To determine the feasibility of a screening tool to identify carers in a general practice. Background. The need to support informal carers is well established in policy and practice, but many carers continue to lack the support they need. Identifying carers is a fundamental precondition to providing them with support. Studies often recruit carers who are members of carers’ organizations or via the care recipient in receipt of services. However, as nearly 60% of carers receive no support from the statutory services, this group of carers may not be representative of the majority of carers. This paper describes the results of a study undertaken to identify a broader group of carers in a general practice in a large Scottish city. Design and methods. A quantitative research design was employed using a mailed screening survey to identify carers within a general practice. Carers were systematically identified, independent of the care recipient, using a screening tool developed by the researcher which was sent to all adult patients registered with the practice. Results. The response rate was 69%. Overall, 11% of the surgery population identified themselves as carers with a mean age of 55 years. The carers were involved in a range of caring activities of varying levels and duration. Conclusion. The screening exercise was time consuming and costly. However, it would be feasible and useful to identify carers in smaller groups. Relevance to practice. This study tackles issues that are pertinent to health policy and practice. Carers were systematically identified from a general practice population and included those at an early stage of the caring role, prior to being involved with service providers, as well as those established in their role. If carers are identified early in their caring career the primary health care team is more able to support them proactively.     

Improving care for people with learning disabilities

In November 1998, a project group began a review of acute hospital service provision in Sheffield for people with learning disabilities and their carers. The aim was to produce recommendations for future development. Throughout the project, patients with learning disabilities and their carers were consulted along with professionals and focus groups representing people with learning disabilities. The project group identified the need for new audit tools and integrated care pathways, changes to documentation and working practices, as well as the need to develop training. The group presented its findings to the executive of the newly formed Sheffield Teaching Hospitals NHS Trust, which gave full support for the group's recommendations to be implemented throughout the trust.     

Health facilitation for people with learning disabilities

Health facilitation is a concept introduced in the white paper 'Valuing People: A New Strategy for Learning Disability for the 21st Century' (DH, 2001a). A project was set up in the West Midlands regions to look at what Primary Care Trust and specialist learning disability services were planning to do in respect of health facilitation in learning disabilities and to develop a resource tool for use by individuals working in this role. This article reiterates the extent of unmet health need experienced by people with learning disabilities and suggests that everyone involved in a caring role should be responsible for addressing their health needs. Primary and secondary care staff from across the legion were consulted, and a range of educational needs were identified for these professionals. Recommendations were made for health facilitators to support the primary and secondary care teams to enable improved access to mainstream health services for people with learning disabilities. The recommendations can be applied nationally.     

Toilet training children with learning difficulties: what the literature tells us

Nurses and health visitors are the professional group most likely to be involved in advising and supporting parents of children with disabilities (Bliss and Watson, 1992). Little research has been done into assessing and treating urinary continence difficulties of children with learning difficulties and many questions remain unanswered: what is the extent of the problem; what specific intervention do children with learning difficulties require to attain toileting skills; what expectation can the parent and clinician have that children with learning difficulties can be toilet trained and who is best placed to promote toileting skills? The main findings from the literature will support health and education professionals and carers who are involved in toilet training children with learning difficulties.     

Improving primary health care for people with learning disabilities

'Signposts for Success' (Department of Health (DoH), 1998a) states that specialist learning disability services (SpLDS) must promote liaisons with, and offer specialist advice to, primary healthcare teams (PHCTs). With the advent primary care groups (DoH, 1998b), genuine collaboration and partnership-forging is necessary and timely to prevent people with learning disabilities being excluded from healthcare services. The project described in the article had three broad aims: first, to establish a practice register of people with learning disabilities in all practices involved in the project; second, to enable practice nurses (PNs), with support, to carry out a systematic health check within the practice of people with learning disabilities; and third, to enable the project nurse to act as a crucial link between SpLDS and the PHCT. The health checks highlighted unmet health and social needs, which were then met through appropriate referral and intervention, mainly to specialist services. Follow ups were conducted to measure any health gain as a result of the applied Interventions. Evidence of health gain was revealed, pointing to the clinical effectiveness of performing such checks within the PHCTs.     

Mainstream In‐Patient Mental Health Care for People with Intellectual Disabilities: Service User,Carer and Provider Experiences

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face‐to‐face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person‐centred practices and active partnership with intellectual disability services.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.