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.     

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.     

A focus group inquiry into the perceptions of primary health care teams and the provision of health care for adults with a learning disability living in the community

This study addresses the primary health needs of adults with learning disabilities living in the community Policies specific to this client group and incorporating the ideology of normalization are noted and evidence of their implementation is sought Previous research suggests that the adoption of a social rehabilitative model of care may have resulted in the neglect of health care needs The recent closure of a local, subnormality hospital provided a critical situation and context for the study The research question is, how do primary health care teams perceive the needs of adults with learning disabilities living in the community, and are they meeting their needs' Three primary health care teams formed the sample and data were obtained through semi-structured, focus group interviews A conceptual framework developed early in the study influenced both the interview guide and the data analysis The study suggests that practitioners working within primary health care teams have a limited awareness of the health care needs of adults with learning disabilities Contributing factors were identified and include negative attitudes towards the concept of normalization, inadequate education, a shortfall in financial and human resources, and poor collaboration with the specialist team     

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.     

Experiences of patients with a disability in receiving primary health care: Using experience-based design for quality improvement

ObjectiveTo use patient-guided tours to gain insight into the experiences of patients with disabilities receiving primary care, with the goal of suggesting improvements.DesignA qualitative experience-based design study, using patient-guided tours.SettingMultidisciplinary academic urban primary care practice.ParticipantsPatients with disabilities identified by their health care providers.MethodsPatients walked through the clinic as they would on a “typical visit” describing their feelings and experiences. The investigator used a semistructured interview guide to prompt the patient. The tour was audiorecorded and transcribed. Thematic content analysis was used.Main findingsParticipants included 18 patients with various disabilities (physical disability, sensory disability, chronic illness, mental illness, learning disability, developmental disability). Strong positive relationships, particularly with the team and administrative staff, profoundly affected perceived access and experience of care. Multidirectional, clear, and respectful communication independently improved patients’ experiences dramatically. Participants said that many access, coordination, and physical barriers were eased by team relationships and communication. Physical space and building issues were troublesome for those with physical and mental disabilities alike. Each participant’s disability itself played a role in their experience but was not described as prominently as their relationship, communication, and spatial challenges. Participants described the patient-guided tour method as valuable to elicit experiences and feelings.ConclusionSome health care teams are unaware of how relationships and communication affect every aspect of health care for people with disabilities. Highlighting these findings with providers and organizations might prompt a more patient-centred model of care. Our experience-based design consisting of patient-guided tours was effective in assessing how those with disabilities experienced care.     

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.     

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.     

Outcomes and Costs of Residential Services for Adults with Intellectual Disabilities in Taiwan: A Comparative Evaluation

Background The disability policy in Taiwan has traditionally emphasized residential care in large institutions and, more recently, medium‐sized group homes. This paper compares the relative costs, services provided and outcomes between the traditional institutions, medium‐sized group homes and new small‐scale community living units that were launched in 2004 in Taiwan. Materials and Methods Cross‐sectional analysis was used to investigate the three current residential service models. A total of 248 participants with intellectual disabilities were interviewed, including all residents from the existing 25 small residential units and purposively sampled respondents from the other two residential models. Results Outcomes for the Taiwanese participants were consistent with the existing literature on deinstitutionalization from Western societies. Small homes provided better subjective and objective quality of life than both medium‐sized community‐based units and traditional institutions. Conclusion Participants living in small residential homes experienced better outcomes at lower cost than persons living in medium‐sized group homes or institutions.     

Knowledge of Advocacy Options within Services for People with Learning Disabilities

Background The aim of this study was to evaluate the extent to which care managers in learning disability services understand the role of the Independent Mental Capacity Advocate (IMCA) service, and the difference between the newly created statutory IMCA and existing general advocacy (GA) services. Method There were 22 participants from three community teams within learning disabilities services, all but one of whom had attended training on the Mental Capacity Act (2005) . Participants completed a questionnaire based on a set of nine scenarios where they were asked to identify the appropriate professional to contact in relation to the situation described, and to explain what their role would be. Results Respondents’ understanding of these issues was generally poor. There was a substantially less than 50% correct response rate for identification of scenarios that called for an IMCA referral, and respondents’ ability to discriminate between the roles of GA and IMCA was limited. Only around half of the respondents correctly identified that the function of advocacy is to represent the client’s views, and a significant minority incorrectly attributed decision‐making functions to the IMCA. Only a single participant identified the statutory requirement to involve an IMCA in relation to a change of long‐term accommodation (where the person lacks capacity and has no other non‐professional support), and none of the participants identified this as a statutory requirement in relation to serious medical treatment. Conclusion A better understanding of the statutory functions of the IMCA service may require a different approach to Mental Capacity Act training.     

A qualitative analysis of the 'management of schizophrenia' within a medium-secure service for men with learning disabilities

Within secure psychiatric services, nurses trained to work with people with learning disabilities are often called upon to deal with those experiencing psychosis; a role that they are not routinely prepared for in generic learning disability nurse training. Psycho-social interventions (PSI) are recommended as an adjunct to routine pharmacological treatment for people experiencing psychosis. There is a small literature that suggests that PSI has utility with people with learning disabilities. As part of a wider evaluation of the introduction of a PSI framework to a 10-bedded medium-secure unit for men with learning disabilities and mental health problems, 13 members of nursing staff completed the 'Management of Schizophrenic Patients Checklist'. The responses were analysed using a grounded theory approach. Principle themes identified are described. The therapy vs. security quandary frequently reported in forensic psychiatry was evident in responses. The findings are guiding a programme of training and ongoing supervision within the service and are discussed in the context of wider therapeutic issues and institutional environment.     

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.     

Responses and needs in a changing situation: staff who work with people with learning disability

Responses and needs in a changing situation: staff who work with people with learning disability
Questionnaires were sent to residential care staff working with people with learning disability both in hospital and community settings, to explore any changes resulting from implementation of the policy of care in the community. Information was obtained on the current job situation of staff, their opinions on the effect of the policy of care in the community, their training needs, and perceived job prospects for the future. Findings for staff working in a hospital setting are compared with those of staff working in the community and discussed in the context of changing demands and conditions.     

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.     

Caring for adults with a learning disability in the community

A recurring theme within the literature is gaps in the delivery of services for people with a learning disability living in the community. These gaps occur between health professionals, primary and secondary care and specialisms within nursing. Gaps also exist between social service policy and implementation, health and social care. Recent national and local reports have sought to address these issues by promoting ways for health and social services to work in partnership. The theme of health promotion is highlighted in all these documents, but implementation of health promotion has been firmly placed within the boundaries of primary care. This poses a dilemma for primary care: does the primary care team or a more specialist community learning disability team provide better care for people with a learning disability? This article summarizes strategies and policies within the literature and difficulties that need to be considered when offering a service to people with a learning disability.     

The experience of being disabled and obese

Purpose. This qualitative study was designed to explore the experiences of disabled and severely obese people living in the community. The challenges that their size and disabilities posed within their homes and in accessing community facilities were explored, with particular reference to the provision and use of assistive technologies.

Methods. The study comprised in-depth interviews with a sample of six severely obese, disabled people using a grounded theory approach.

Results. Three key themes emerged: the experience of daily life; accessing services; and responses to challenges. The study participants found that their home and community environments were seldom adequate for their size. Difficulties were identified in relation to accessing and using NHS services and negative attitudes and treatment from staff. Assessments and quality of assistive devices and housing adaptations received were criticised by some. Participants identified a range of responses to these challenges.

Conclusion. The challenges that obesity bring are compounded by disability, including the need for higher levels of care and the higher costs of assistive devices for this client group. The study suggests there may be a need for training for professionals who work with obese, disabled people to ensure their needs are met in appropriate and cost-effective ways.     

Medical care services for people with intellectual disabilities living in the general community: a cross-sectional survey of inpatient care utilization in Taiwan, 2001

Background. The medical care needs and problems of persons with intellectual disabilities (ID) living in the general community have received limited attention in previous studies. The aim of this article is to describe aspects of medical care utilization among people with ID living in the general community, with particular emphasis on examining the type and determinants of inpatient care utilization in Taiwan.

Methods. A cross-sectional survey of people with intellectual disabilities was employed. A total of 997 respondents who provided fully completed data concerning inpatient care utilization were recruited into the analysis.

Results. A total of 12.4% of individuals with intellectual disabilities had used inpatient care in the 7 months prior to the survey. The average number of inpatient care visits in that time was 1.43, with an average hospital stay of 16.91 days. Surgery, fever, gastrointestinal disorders, psychiatric disorders, and accident were the main causes of inpatient care utilization. A stepwise logistic model showed that the factors of holding a Major Illness Card, regular medicine-taking and self-perceived health status were statistically significant to inpatient care utilization of people with intellectual disabilities.

Conclusions. Medical care providers and policy makers need to be aware that many people with intellectual disabilities have increased medical care needs that may require modification of standard medical care practices and service models in society.     

Survey of continuing professional education within nursing homes

This article reports a survey of qualified nurses employed in nursing homes in a large city in the north of England. The aim of the study was to describe nurses' experiences and perceptions of continuing professional education (CPE), and their views on the development of their knowledge and skills through formal and informal education. Findings revealed that nurses in nursing homes perceived the value of educational programmes but had limited opportunities to attend formal education programmes. They faced a number of barriers and challenges in accessing formal education. Various informal ways of learning were used, including reading professional journals, watching videotapes and television programmes and accessing the Internet. However, respondents appeared not to use fully opportunities for sharing knowledge with colleagues. Although this study is based on a small sample, the findings support those of other studies in this field. Collectively, these studies suggest an urgent need to develop a range of approaches to CPE within care homes, both formal and informal, if the standards outlined within recent policy initiatives are to be achieved.