The palliative care needs of people with intellectual disabilities: a case study

This article describes a case study that aimed to consider the unique needs of a client who has intellectual disabilities and a terminal illness. Data collection included semi-structured interviews with the client and professionals involved in his care. Five broad sets of themes emerged from these interviews. Although these are not unique to the rapidly evolving field of palliative care, they are less familiar within the specialism of intellectual disabilities, i.e. difficulties and delays around diagnosing the illness, consent issues, conflicts between the carers and the family, truth-telling, and the need for professional support. Professionals who work with a person with intellectual disabilities and a terminal illness need to be aware that special issues may arise. The effects of potential problems with comprehension and communication need to be assessed individually. A close collaboration between all professionals, carers, family and the client, and the mutual sharing of expertise, is essential to ensure the best possible care.     

The palliative care needs of people with intellectual disabilities: a literature review

People with intellectual disabilities are among the most disadvantaged groups in society. A literature review was conducted aiming to answer the following question: What are the palliative care needs of people with intellectual disabilities? The literature review covers case histories, morbidity and mortality patterns for people with intellectual disabilities, their healthcare needs and primary care provision, the way they may present symptoms, their conceptualization of illness and death and issues around education and training. While the literature review reveals a lack of empirical data around the palliative care needs of people with intellectual disabilities, a number of potential problem areas are highlighted. These include late presentation of illness, difficulties in assessing symptoms, difficulties in understanding the illness and its implications and ethical issues around decision making and consent to treatment. It is suggested that future studies will need to include the views and experiences of people with intellectual disabilities themselves. Areas for possible future development include symptom assessment, evaluation of current practice and access to services and the development of information and training materials.     

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.     

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.     

Providing end-of-life care for people with learning disabilities

The end-of-life care model Preferred Place of Care and the philosophy known as person-centred planning both aim to make patient choices and views central to any service delivery. This article compares the two strategies.     

The needs of older people with learning disabilities

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

Secondary health care for people with learning disabilities

The current evidence base shows that people with learning disabilities experience difficulties in identifying and meeting their own specific health needs, and in accessing appropriate health services. There are particular difficulties relating to access to acute healthcare services. A number of initiatives are being developed to try to improve the situation. This article explores the current evidence base, highlights examples of best practice and makes recommendations for future practice and service development.     

Supporting cancer patients with palliative care needs: district nurses' role perceptions

The aim of this study was to examine UK district nurses' perceptions of their role in supporting palliative care cancer patients. Patients with cancer are living longer with the disease. District nurses are the largest UK workforce caring for people with cancer at home, the preferred place of care. Meeting patients' supportive and palliative care needs is complex. Little is known about district nurses' supportive role in the early phase of palliative care. Semistructured interviews were conducted with 34 district nurses. Data were analyzed thematically, with assistance from Atlas/ti. A dominant theme emerging from the interviews was ambiguity in the district nurses' supportive role in early palliative care. District nurses discussed the importance of making contact early on to support cancer patients and their families but had difficulty articulating this "support." Ambiguity, lack of confidence, and perceived skill deficits presented district nurses with dilemmas that were difficult to resolve. District nurses have great potential for meeting cancer patients' supportive and palliative care needs, a potential not currently realized. Education alone is unlikely to improve practice without an understanding of the tensions faced by district nurses in their work. Recognizing and addressing dilemmas in the everyday work of district nurses is central to moving practice forward.     

Access to secondary care for people with learning disabilities

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

District nurses' perceptions of palliative care services: part 2

The overall aim of this study was to examine district nurses' (DNs') perceptions of palliative care services within the community setting. A questionnaire which focused on the key areas of defining palliative care, perception of roles, communication, service provision and the education and training needs of DNS was used. This was designed following a review of the literature and combined with data from phase one of the study (Vol 5(5): 215-222), which involved focus group interviews with DNs. The questionnaire was distributed to district nursing sisters (n = 66) within two community trusts in Northern Ireland. Findings suggest that the physical 'doing' aspects of care continue to dominate DNs' perceptions of palliative care and their educational needs. However, the supportive element of the DN's role was also identified alongside the potential role as coordinator. Palliative care service provision was considered adequate and the main services that nurses identified as useful related to the provision of 24-hour care. The main factors identified by nurses as influencing service provision related to organizational issues such as inadequate staffing levels, limited resources and a lack of time.     

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.     

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.     

Improving care for people with learning disabilities in hospital

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

Addressing the palliative care needs of people with dementia

The palliative care needs of people with dementia have received little attention to date. In the early days of the disorder some drugs may assist with the cognitive and behavioural symptoms. However, as the disease progresses people with dementia become increasingly dependent on carers. Evidence suggests that a palliative care approach from diagnosis is beneficial because it addresses people's emotional needs as well as those of their families and carers.     

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 mental health needs of people with severe learning disabilities

People with severe learning disabilities can present with complex behavioural and emotional needs that are best understood within a biopsychosocial framework. This article outlines the range of issues involved in the presentation and identification of mental health needs in people with severe learning disabilities. The use of a multidisciplinary and multimodal approach to assessment, care planning and case management is promoted in order to provide effective, comprehensive care in meeting the mental health needs of this client group. The key knowledge and skills required to meet the mental health needs of this client group are outlined and the role of the nurse as a key professional in the coordination of the assessment and care management process is explored.     

Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care professionals in London

Growing numbers of people with intellectual disabilities (ID) are in need of palliative care, but there is inequity of access to palliative care services for this group. This study investigates the issues and difficulties arising for palliative care staff in providing care for people with ID. Semi-structured interviews were conducted with 32 palliative care professionals in London. Factors affecting palliative care provision for people with ID included social issues (home situation and family issues), emotional and cognitive issues (fear, patient understanding, communication, cooperation and capacity to consent), problems with assessment, and the impact on staff and other patients. An underlying theme was the need to take more time and to build trust. Despite the challenges, many palliative care staff managed the care of people with ID well. The importance of collaboration with carers and ID services is highlighted. Further studies are needed to investigate how widespread the problems are.