Women with learning disabilities: risk behaviours and experiences of the cervical smear test

This paper reports the findings of a study on the views and experiences of women with learning disabilities regarding the cervical smear test. The experience and opinions of the carers were also taken into account. The study was carried out between 1997 and 1999 in Cambridgeshire. The factors that influenced whether women with a learning disability had a smear test included: sexual activity; number of sexual partners; pregnancy; and a past history of smoking. Women with a learning disability who had a cervical smear test most often experienced pain and difficulty with the procedure. Factors that enable women with a learning disability to undergo a cervical smear test, according to their experiences, will be discussed in this paper. These include: the importance of prolonged preparation; issues surrounding communication; the giving of information; and support from the carers. The implications of these findings for collaborative working between learning disability nurses and primary healthcare professionals in clinical practice are highlighted.     

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.     

Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training

BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem. STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia. DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice. FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved. CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.     

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.     

Training nurses to support carers of relatives with schizophrenia

Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.     

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.     

A concept analysis of, and proposed new term for, challenging behaviour

While the term 'challenging behaviour' is used frequently in literaturewith reference to people who have learning disabilities, the concept has not been defined comprehensively and empirical indicators for the presence ofthe phenomenon have not been defined from the perspective of nurses for people with learning disabilities In this paper the concept 'challenging behaviour', as used in the area of nursing people who have learning disabilities, is analysed It is suggested that it is an ambiguous term which is unsuitable for use in the field of learning disabilities A new term is synthesizedto replace that of 'challenging behaviour' and an attempt to develop concise indicators which will demonstrate the concept's presence in individuals who have a learning disability will be undertaken It is suggested that the proposed term is less ambiguous than 'challenging behaviour' and, as such, is more user-friendly for both nurses and other carers of people who have learning disabilities The paper concludes with the recommendation that further refinement is required in practice to expand and define the operational indicators of the proposed new term 'problematic behaviours'     

Determinants of quality of life for older people living with a disability in the community

Title.  Determinants of quality of life for older people living with a disability in the community.
Aim.  This paper is a report of a study conducted to identify the determinants of quality of life for older people with a disability living in the community and to construct a model to explain these.
Background.  There is no consensus in the literature as to the meaning of quality of life. Few studies have focused on the determinants of quality of life for people with a disability.
Methods.  A grounded theory study was conducted between 2005 and 2006, using semi-structured interviews to collect data. The constant comparative technique was used to analyse data. The sample comprised 122 older people with one of six disabilities: stroke ( n  = 20), arthritis (20), depression (20), vision and hearing deficits (20), learning disability (24) or dementia (18) who were living in the community.
Findings.  A model of the factors that determine quality of life of older people with a disability was developed. 'Living well' was conceptualized as the core category. The potential to 'live well' was influenced by foundation, mediating and facilitating/constraining factors. Quality of life of older people with a disability was revealed as a complex mix of these factors.
Conclusion.  Quality of life cannot be fully understood unless the totality of factors that have an impact on and shape perceptions are taken into account. The model implies that good support from nurses, a focus on a person's abilities and access to information and connectedness to others can make a difference and may help people cope in a better way.     

Levels of continence in children with cerebral palsy

Little is known about the levels of continence in children with cerebral palsy and what factors affect this. This study was conducted to determine levels of urine and stool continence in children with cerebral palsy in relation to their learning disability (LD) and mobility. The aim was to enable us to predict level of continence that can be achieved for these children with a given level of learning disability and mobility. Data were obtained from medical notes and by telephone interview on mobility, degree of learning disability and urine and stool continence of 55 children in Southern Derbyshire. Most of the children who have nil to moderate disabilities in learning and mobility were able to achieve a decent level of continence around a median age of three years. Therefore, their toilet training should be started at the usual age with ongoing support from parents/carers. In children with severe learning disability and severe immobility, the probability of continence is very slim after the age of eight years. After this age it may be better to divert resources to other aspects of care, for example nutrition and physiotherapy, to improve their quality of life.     

Primary care services received during terminal illness

The World Health Organization (1990) provides guidelines on what constitutes effective palliative care. However, it remains unclear whether people with a terminal illness living in their own homes have access to the services they need. This article reports on a study carried out in the United Kingdom on the views of people with a terminal illness (n = 15), their lay carers (n = 10) and bereaved carers (n = 19). Participants were asked about the primary care services they had received and their views on both helpful and unhelpful aspects of service provision. All terminally ill people in the study (except one) had cancer, which raises questions about access to palliative care services for non-cancer populations. Participants had contact primarily with district nurses, general practitioners and Macmillan nurses (specialist nurses). Few other services were received. A number of important issues arose from the data, indicating that lay carers in particular were not always receiving the information and support they needed in order to be effective caregivers.     

A survey to investigate the role of the district nurse in stroke care

The long-term needs of people who have had a stroke and their carers are not being adequately addressed. A stroke care coordinator based in primary care might improve service delivery: the district nurse has been suggested as a possible candidate. A postal survey was conducted with three primary care trusts in Bradford to investigate the current role of the district nurse in stroke care and to examine their potential as stroke care coordinator. District nurses from 24 (59%) teams responded to the survey. Twenty-two (44%) were aware of the national clinical guidelines for stroke and five (10%) had received stroke-related training within the previous year. The district nurses demonstrated insight into the types of longer term problems experienced by people who have had a stroke and their carers. While findings of the survey suggests that they would be a likely candidate for the stroke care coordinator role, there are major educational, training and organizational challenges to implementing this change.     

Designing and implementing a 'dual diagnosis' module: a review of the literature and some preliminary findings

People with a learning disability experience the full range of mental health problems, with prevalence greater than in the general population. The literature suggests that the move to community care has highlighted their special needs, as they face a complexity of life experiences and risks. Nurses play a key role, and must be equipped with appropriate knowledge and expertise to respond to the mental health problems of people with a learning disability ('dual diagnosis'). Major national initiatives support research and propose access to appropriate education for care professionals. In order to respond to locally identified educational needs a 'dual diagnosis' module was developed for nurses working with people with a learning disability who experienced mental health difficulties. The aims were to increase knowledge, to consider implications for learning disability nursing, to increase awareness of research and policy issues, and ultimately to enhance practice. Preliminary findings suggest that participants have moved from an entry position of professional bias and lack of knowledge and skill, to a changed perspective and enhanced practice relating to the mental health needs of clients with a learning disability. These changes are, however, speculative and may be attributable to variables other than module completion. Implications for further research and development are suggested.     

Evaluation of nurses' and doctors' knowledge of basic & advanced life support resuscitation guidelines

Lack of resuscitation skills of nurses and doctors in basic life support (BLS) and advanced life support (ALS) has been identified as a contributing factor to poor outcomes of cardiac arrest victims. Our hypothesis was that nurses’ and doctors’ knowledge of cardiopulmonary resuscitation guidelines would be related to their professional background as well as their resuscitation training. A secondary aim of this study was to assess and compare the theoretical knowledge on BLS and ALS in nurses and doctors. A total of 82 nurses and 134 doctors agreed to respond to a questionnaire containing demographic questions, resuscitation experience questions and 15 theoretical knowledge questions. Our study demonstrated that nurses and doctors working in Greece have knowledge gaps in current BLS and ALS guidelines. However, resuscitation training had a positive effect on theoretical CPR knowledge. Furthermore, nurses and doctors who worked in high-risk areas for cardiac arrest, scored significantly higher than those who worked in low-risk areas. Those who had encountered more than 5 cardiac arrests the previous year, scored significantly better. Finally the percentage of nurses who had attended the ALS course was quite low thus ALS training should be incorporated into the nursing curriculum.     

Informal carers of older family members: how they manage and what support they receive from respite care

Aims. To describe informal carers’ coping strategies and their experiences of the support provided by respite care. Background. The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution. Design. Survey. Methods. The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index ( Nolan et al. 1995 ) and an index developed by the researchers. Results. Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship. Conclusions. The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role. Relevance to clinical practice. Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well‐being of the entire family.     

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.     

Experiences of informal carers providing nursing support for disabled dependants

This paper provides an account of the experience of a group of informal carers who provided nursing support for their physically disabled dependants. The project was designed to establish the extent to which carers are equipped to fulfil their role in terms of equipment, facilities, skills, levels of personal health and the extent of support available to them from agencies outside the home. The carers were found to be providing the majority of nursing support required by their dependants. This mainly involved carrying out tasks of personal care although, for some, more technical procedures were involved. The findings indicate there is scope for professional nurses to make a greater contribution to the support of informal carers, particularly by regular review of the nature and level of assistance which carers provide and by giving training in the skills which carers require.     

The views and experiences of learning disability nurses concerning their advocacy education

A mixed methods project [Llewellyn, P., 2005. An investigation into the advocacy role of the learning disability nurse. University of Glamorgan, unpublished PhD Thesis] investigated the advocacy role of learning disability nurses. This paper discusses the section concerned with nurses' advocacy education. Focus groups, interviews and a questionnaire survey enabled nurses from a wide range of grades, seniority and experience to explore their received education in advocacy and their educational requirements concerning their advocacy role. Findings revealed that nurses' received education in advocacy varied according to the syllabus under which they qualified, with those whose education was influenced by the 1979 Jay Report having the highest incidence of advocacy training. Many learning disability nurses who had received theoretical education did not feel confident to advocate for their clients. Many were also unsure of their ability to access independent advocacy services and when it was permissible to do this. Nurse informants expressed a need for ongoing support and training in advocacy relating to The Human Rights Act (1998) and The Disability Discrimination Act (1995); and also specifically in relation to advocacy for clients within their own work area. Most nurses had definite ideas regarding how and by whom their advocacy education and training should be provided.