The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service

Aim. This paper reports the challenges experienced by nurses within accident and emergency departments in communicating with and gaining valid consent from adults with intellectual disabilities. Background. Consent is both a legal requirement and an ethical principle required to be obtained by health‐care professionals, prior to the start of any examination, treatment and/or care. Central to the process of seeking consent is effective communication. However, evidence shows that people with intellectual disabilities are not viewed by professionals within acute general hospitals as a vital source of information, neither are they often communicated with directly, nor involved in discussions or decisions about their health care and are frequently not directly asked for their consent. Method. A purposive sample of nurses working within the accident and emergency departments of five general hospitals was recruited to participate in this qualitative study. Data were collected from five focus groups. Findings. Effective communication was identified as the most challenging aspect in caring for adults with intellectual disabilities within this environment, having an impact on the assessment of needs, informing patients of their health status and seeking valid consent. Conclusions. Fundamental to the provision of quality care are the concepts communication, choice and control. However, these issues are perceived to be more challenging in the provision of health care to people with intellectual disabilities. Communication and consent, therefore, require further consideration within the educational and clinical areas to strengthen nurses’ competence in caring for people with intellectual disabilities, with an emphasis and understanding that choice and control are key principles for all people, being central aspects to the provision of an inclusive service for people with intellectual disabilities. Relevance to clinical practice. All nurses need to have a greater awareness of learning disability, how to increase opportunities for effective communication and be very familiar with the issue and guidelines relating to consent, to ensure that people with learning disabilities have choice, control and are more active in decision making regarding their health.     

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.     

Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

Aims The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs’ priorities in the delivery of health care services to this group of people in Taiwan. Methods The study employed a cross‐sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on‐the‐job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.     

From Institutional to Community Support: Consequences for Medical Care

Background Concerns have been raised about the quality of medical care available for people with intellectual disabilities in community‐based services. The aims of this study were to evaluate a model of medical care developed during a programme of deinstitutionalization, based on a specialist physician supporting general practitioners (GPs). Method Postal questionnaire survey of all 36 GPs participating in the specialist physician support programme. Responses were received from 22 participants (response rate 61%). Results The majority of GPs agreed that clients with intellectual disabilities should receive services in primary care settings. While they also reported themselves to be capable of providing medical care to people with intellectual disabilities, they also reported the provision of specialist support to be important. Conclusions It is possible to provide high quality medical care in community‐based settings if specialist support is made available for GPs.     

Communication difficulties and intellectual disability in end-of-life care

Around 1-3% of the world's population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude that the ability to communicate effectively with people with intellectual disabilities is a useful skill that will benefit all patients.     

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.     

How Do People with Intellectual Disabilities and Diabetes Experience and Perceive their Illness?

Introduction Diabetes is a significant health problem amongst people with intellectual disabilities, yet there is a lack of qualitative literature looking specifically at their experiences and perceptions of living with this chronic illness. Method Using Interpretative Phenomenological Analysis, this study explored the experiences and perceptions of four people with intellectual disabilities and diabetes. Results Results showed that participants demonstrated some knowledge of the language surrounding diabetes, but considerable confusion and uncertainty about their illness. The impact of diabetes was described in terms of physical, emotional and social consequences, and participants spoke of diabetes in the context of co‐existing health problems. Conclusions People with intellectual disabilities and diabetes face many challenges when perceiving and coping with their illness. Gaining insight into these challenges could help health professionals work together more effectively and provide appropriate support to people with intellectual disabilities and diabetes.     

Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution

while a.e . & clark l.l. (2009) Journal of Nursing Management  18, 166–172
Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution Aim To propose a strategy for overcoming stigma and discrimination against people with intellectual disabilities within healthcare. Background Evidence of poor healthcare for those with intellectual disabilities resulted in an independent inquiry. The subsequent report has charged healthcare organizations to address current organizational failings. Evaluation The origins of discriminatory practices in health services and the evidence of persisting poor care and stigmatization of this patient group despite UK Government policy are set out. Key issue The stigmatization and resulting discrimination of people with intellectual disabilities persists. Conclusion In addition to investment in core training, organizational change is needed to bring about change and a reduction in health inequality. Implications for nursing management The development of a new framework for nursing is recommended with leadership at all levels of healthcare so that people with intellectual disabilities and their families can expect to receive high quality care in all healthcare settings.     

Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective

Scand J Caring Sci; 2010; 24; 164–174
Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client’s perspective Background: Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. Aim: This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Methods: Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. Results: The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as ‘keeping appointments’ and ‘time and attention’, whereas parents/relatives also referred to broader ‘organisational issues’, such as ‘access to support’ and ‘problems with placement’. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long‐term aspects in care and service delivery.     

Addressing the need for education: curriculum development for nurses about intellectual and developmental disabilities

People with disabilities and national and international agencies are voicing their views, forcing health care providers to look at how people with disabilities are treated in the health care system and to find ways to help them achieve equal access to quality care. Education about nursing care of patients with I/DD is limited in basic nursing education programs and for nurses who are in practice. A number of developmental disabilities nursing projects are addressing this need with curriculum development that has validated the need for education and has begun testing the various methods of instruction. As the curriculum is disseminated in written or Internet-accessible formats, nurses in education and practice will be able to find resources that target a specific topic area or a set of comprehensive instructions to acquire a better understanding of the comprehensive needs of people with I/DD and better ways to provide care. There is a need for a greater integration of curriculum about nursing care of people with developmental disabilities into basic nursing education at all levels and further evaluation of the impact of this curriculum on nursing care for people with I/DD. The hope is that these efforts can improve the education of nurses and other health care providers for the direct benefit of individuals with intellectual disabilities.     

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges

Purpose

The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care.

Conclusions

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care.

Practice Implications

Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.     

United States Medicaid home and community-based services for people with intellectual and developmental disabilities: A scoping review

Emerging research tests the impact of United States Medicaid home and community-based (HCBS) waiver policy on outcomes for people with intellectual and developmental disabilities; however, this body of work has yet to be synthesized. We conducted a scoping review to establish what is known about the impact of Medicaid HCBS policy on the lives of people with intellectual and developmental disabilities. Seven studies met final inclusion criteria. Their findings contribute to preliminary evidence that Medicaid HCBS waivers provide economic benefit at the state and federal level, reduce unmet healthcare needs, increase the likelihood that parents will be able to continue working, and reduce racial disparities in access to care. Additional work should compare HCBS waiver programmes, and their causal pathways, as well as draw international comparisons to similar programming, to determine essential infrastructure needed for a successful HCBS programme.     

Nurse Practitioners Promoting Physical Activity: People With Intellectual and Developmental Disabilities

People with intellectual and developmental disabilities (IDD) are not residing in large congregate care centers due to legislative, attitudinal, and treatment changes, and they are living longer than their peers of previous generations. With the absence of inclusive and accessible health promotion, people with IDD are experiencing a constellation of health issues related to negative determinants of health. This article aims to raise awareness among nurse practitioners that people with IDD need support from their health care providers to be physical active. A secondary aim is to discuss barriers and resources for people with IDD to be more physically active.     

The Relationship between Participating in the Community,Significant Support Needs,and Emergency Department Utilization

Community integration is preferred by people with intellectual and developmental disabilities; community integration is also associated with positive outcomes. Yet, many people with intellectual and developmental disabilities, especially with higher support needs, remain isolated. This exploratory study examined the relationship between community integration, significant support needs, and emergency department utilization of people with intellectual and developmental disabilities (n?=?251) by analyzing secondary Personal Outcome Measures^® interview data. We found an interaction between community integration and comprehensive behavior support needs, wherein people with intellectual and developmental disabilities with comprehensive behavior support needs who participated in the life of the community had 78% fewer emergency department visits than those people with comprehensive behavior support needs who did not participate in the community. Not only is community integration preferred by people with intellectual and developmental disabilities, our research suggests it can also produce improved health outcomes for those with comprehensive behavior support needs.

     

Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units

AIM: This paper reports a study exploring the experiences of nurses in accident and emergency units caring for people with intellectual disabilities. BACKGROUND: People with intellectual disabilities are increasingly in contact with healthcare professionals in accident and emergency units. Often this contact occurs within the accident and emergency service, an area in which staff care for a diverse range of people. The experiences of people with intellectual disabilities within acute general hospitals in the United Kingdom and internationally has largely been reported as quite negative. Conversely, little is known about the experiences of nurses working in acute general hospitals, nor the exact nature of any challenges they encounter, in providing care to people with intellectual disabilities. This lack of understanding weakens opportunities for nurses to reduce barriers to providing an equitable service for people with intellectual disabilities. METHOD: Five focus groups were conducted with 27 accident and emergency nurses from five hospitals in Northern Ireland in the spring of 2004. The data were then coded and recurring themes identified. FINDINGS: This paper focuses on two themes: lack of knowledge of the nature of intellectual disability and dependence on carers. Whilst these themes have been acknowledged in the existing literature, they have received limited attention and exploration. The experience of fear and vulnerability was considered by participants to be a consequence of their lack of knowledge. The experience of these emotions is viewed as a key factor in nurses' over-dependence on patients' informal carers. CONCLUSION: Increased awareness is needed among professionals in accident and emergency units of the abilities and needs of people with intellectual disabilities.     

Nursing student perceptions of disability and preparation to care for people with intellectual disabilities

As people with intellectual disabilities live longer and develop more chronic illnesses, nurses will have increasing contact with them. Therefore, nurses must have both an accurate understanding of and a positive attitude toward this population to ensure optimal nursing care is received. A cross-sectional survey of second-year and fourth-year nursing students measured their perceptions of disability, their contact with people with intellectual disabilities, and their perceptions of education to prepare them to care for people with intellectual disabilities. Students most often identified disability as physical, using a wheelchair to represent that perception. Students were confident in their ability to transfer many of the skills they learned to care for people with intellectual disabilities but identified a need for more education about providing that care. Curricular changes to enhance nursing students' awareness and understanding of people with intellectual disabilities are recommended.     

End‐of‐Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

Background Little is known of paid carers’ perspectives when caring for people with intellectual disabilities at the end‐of‐life. Materials and methods Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results Participants wanted to provide palliative care and felt the experience enriched practice. However, they were inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end‐of‐life care decision making was challenging, when staff felt ‘pushed out’ by relatives and when staff did not have sufficient support or time to provide care or mourn the loss of service users. Conclusions The study describes issues which contribute to the development of staff stress when providing palliative care and draws attention to areas where strategies should be developed in order to improve the quality of care provided to people with intellectual disabilities.