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This book offers unique and flexible guidelines that can be used by practitioners to ease the process of breaking bad news to people with intellectual disabilities. The guidelines, which are adaptable to individual communication ability and level of understanding, address the many complex needs of people with intellectual disabilities who can find understanding and accepting news that has a negative impact on their life a very difficult task. In the book, Irene Tuffrey-Wijne covers a range of different types of bad news, from bereavement and illness to more minor issues such as a change of acc

This book is a powerful and moving account of the experiences of 13 people with learning disabilities who were living with cancer. The author followed their lives as part of a 3-year research study, during which 10 people died. She spent extensive periods of time with them at their homes and day centres, in hospitals, hospices and nursing homes. In doing so, she gained a unique understanding of what it is like for individuals with learning disabilities to live with deteriorating health and how this may impact upon their families, friends and carers. How was each person's cancer diagnosed? How

Intro -- Pictures -- Supporting information -- Who is this book for -- Am I Going to Die -- How to read Am I Going to Die -- Storyline -- Introduction -- Guide for supporters -- Guide for healthcare professionals -- Useful resources -- Related titles -- Authors -- Beyond Words publications and training -- Copyright information.

Research into the health of people with intellectual disabilities has increasingly focused on the occurrence of cancer in this population. Information on the incidence and prevalence of cancer is reviewed in both institutional and community settings. Examples of environmental causation are considered including Helicobacter pylori. Gender‐specific issues are considered with respect to both women and men, and screening services discussed. The overall issue of timely diagnosis of cancer in members of this population is reviewed with special reference to avoidable deaths. The need for methodologically sound studies to clarify the epidemiology of cancer in people with intellectual disabilities is discussed.

AbstractBackgroundPeople with intellectual disabilities are more likely to experience sleep problems. Sleep can impact on health and well‐being; therefore, evidence‐based interventions are required to improve sleep in this population.MethodAn integrative literature review was conducted on the impact of nutrition on sleep in people with intellectual disabilities. Following screening of papers (n = 289), 14 papers met the inclusion criteria.ResultsThemes related to nutrition and improved overall well‐being, use of nutritional supplements, specific foods, links to health comorbidities and food fussiness.ConclusionThis is the first comprehensive review completed on nutritional interventions to improve sleep in people with intellectual disabilities. Dietary patterns may be an important factor to improving the quality and quantity of sleep. However, the current literature regarding the benefit of improved nutrition on sleep in people with an intellectual disability needs to be interpreted with caution.

Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life‐limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care.Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included.Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs.Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development.

AbstractIn 2018, the authors published their analysis of nine online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary, they reflect further on the challenges of assessing "unbearable suffering without prospect of improvement," which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole.

Background: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician's opinion. 'Unbearable suffering' must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. Methods: The 416 case summaries available on the RTE website (2012-2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases. Results: Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient's perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Conclusions: Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients ...

BackgroundMany people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying.Method(i) Semi‐structured interviews with 20 staff in residential/supported living services to establish training needs; (ii) three‐one‐day courses were attended by 114 staff and evaluated through questionnaires. The course consisted of World Café sessions, presentations and feedback by people with intellectual disabilities, and an expert teaching session.ResultsStaff fear, cultural influences and inexperience with death‐related conversations were major communication barriers. Evaluation of the course was overwhelmingly positive.ConclusionsIntellectual disabilities services must have clear staff training strategies around death, dying and communication. More work is needed to assess the resource implications and impact on practice of different training methods and other support strategies.

AbstractBackgroundIncreasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death.MethodInterviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11) and siblings (N = 16) to understand their perspectives about living with parents and future planning. Data were analysed using framework analysis.ResultsFour themes were identified: 'What matters to me', 'When should we plan', 'What are the options' and 'Who will help'. Participants knew they needed to make plans but did not feel supported to do so. While they viewed moving as an opportunity for independence, they feared there were no viable alternatives.ConclusionPerson‐centred resources and support are needed for families to plan for transitions in care, including proactive approaches from social services and help to prepare for conversations with social care professionals.

AbstractBackgroundPeople with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well‐being.MethodsAn integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015.ResultsWithin intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability.ConclusionA wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep.

AbstractBackgroundChildren and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities.MethodInterviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England.ResultsNo standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about "flagging" patients might be a significant barrier.DiscussionWithout an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

BackgroundThere is insufficient evidence to guide decisions around (non‐)disclosure of bad news of life‐limiting illness and death to people with intellectual disabilities.AimThe aim of this study was to develop guidelines for decisions about (non‐)disclosure of bad news around life‐limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non‐disclosure.Materials and methodsFocus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals.ResultsPeople with intellectual disabilities had wide‐ranging views about disclosure. Reasons for non‐disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement.ConclusionDisclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice.

AbstractBackgroundIllness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement.MethodStaff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi‐squared statistics.Results52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement.ConclusionDeath affects many people with intellectual disability. Staff require training and support in communicating death.

AbstractBackgroundLittle is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision‐making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals.MethodsIn a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid.ResultsIn Round 1, components were rated as (very) relevant by 70–98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67–97% (M = 90%) and feasibility ratings 66–86% (M = 77%). The final version consists of four themes: who are you; illness/end‐of‐life; making decisions; and evaluating the decision.ConclusionThe consensus‐based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.