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What would you do if someone told you their life was so full of suffering that they preferred to die? What if they asked their doctor or even you for help to die? In the UK, assisted dying is not currently a legal possibility, so you may think this question is not relevant to you as a practising nurse. You may think that, even if assisted dying were legalised, surely this would not affect people with a learning disability? But it affects everyone and it is relevant to us all. [ABSTRACT FROM AUTHOR]

Introduction: There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co‐design of a toolkit for supporting end‐of‐life care planning with people with intellectual disabilities. To inform the co‐design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice. Methods: Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk‐based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third‐sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co‐design team. Results: The evidence review played a critical role in the co‐design of a new toolkit of end‐of‐life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes. Conclusions: The survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co‐design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co‐design activities in health and care research, particularly for studies involving people with intellectual disabilities. Patient or Public Contribution: This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co‐design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with intellectual disabilities via the Advisory Group and core research team. The findings from the evidence review were used by the co‐design team to inform the development of an end‐of‐life care planning toolkit for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Accessible Summary: We are eight people with learning disabilities. We did a training course at a university in London. It was called "Learning how to do research." We learned about the 10 steps in research, and we practised how to do research.Part of the course was doing our own research project. Then, we presented it to an audience.In this article, our tutors describe the course. We say what it was like for us. Most of us were nervous about doing the course, but we learnt a lot from it.There are not many opportunities for people with learning disabilities to learn about research. We think more people with learning disabilities should have the chance to do it. We hope this article helps other teachers to start a research course.We can be researchers! Being involved in research gives us a voice. Background: Within learning disability research, it is important to involve people with learning disabilities at all stages, but there are limited opportunities for them to learn about the research process or to gain research skills. Method: An eight‐session research training course for people with learning disabilities was developed and piloted at a university in London. The focus was on understanding the research process and gaining practical skills in collecting, analysing and presenting research data. Training methods were experimental, with an emphasis on learning by experience in a "fun" way. Results: Ten people with learning disabilities completed the course, showing great enthusiasm and commitment. During the final sessions, students developed and conducted their own research projects, choosing "Employment" as their research topic. The training methods were well received. Benefits included an increase in confidence and new work opportunities for several of the students. This paper was co‐authored by the tutors and most of the course graduates. Conclusion: It is possible for people with learning disabilities to become skilled researchers, but in order to do so, it is important that they have adequate training opportunities. Funding should be made available for more such courses. [ABSTRACT FROM AUTHOR]

Background: Illness 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. Method: Staff 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. Results: 52.6% 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. Conclusion: Death affects many people with intellectual disability. Staff require training and support in communicating death. [ABSTRACT FROM AUTHOR]

The author stresses the importance of trying and following people's wishes at the end of their life. She discusses how to have conversations with people who struggle with words and abstract concepts, the need of people for space and time to explore concepts and ideas, and lesson learned from people with intellectual disabilities about conversations.

In 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. [ABSTRACT FROM AUTHOR]

Background: People with an intellectual disability experience significant inequalities in end-of-life and palliative care provision. Aims: To identify the key characteristics of practice initiatives and case reports that have won a UK award for the outstanding provision of end-of-life care for people with ID (2008–2018). Methods: Thematic content analysis of the written nominations for award winners and those highly commended (n=25). Findings: Four themes were identified: (1) Good practice was dependent on 'champions' with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools. Conclusion: The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations. [ABSTRACT FROM AUTHOR]

Background Many 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. Results Staff fear, cultural influences and inexperience with death-related conversations were major communication barriers. Evaluation of the course was overwhelmingly positive. Conclusions Intellectual 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. [ABSTRACT FROM AUTHOR]

Aims To understand issues around carer roles that affect carer involvement for people with intellectual disabilities in acute hospitals. Background There is evidence that a lack of effective carer involvement can lead to poorer health outcomes for people with intellectual disabilities, but there is a lack of insight into the reasons for poor carer involvement in acute hospitals. Design Mixed methods in six acute hospital trusts in England (2011-2013). Methods Electronic hospital staff survey ( n = 990), carer questionnaires ( n = 88), semi-structured interviews with hospital staff ( n = 68) and carers ( n = 37). Data were triangulated and analysed using a conceptual framework. Results There was strong support for carer involvement among hospital staff, and most carers indicated that they felt welcomed and supported. However, an investigation of negative experiences showed that there were discrepancies in the perspectives of hospital staff and carers on the scope of 'carer involvement'. An important contributory factor to the effectiveness of carer involvement was the degree to which staff understood the importance of carer expertise (rather than simply carer work) and welcomed it. Carers' contributions to basic nursing care tasks could be taken for granted by hospital staff, sometimes erroneously. Conclusion The roles and contributions of carers should be clarified on an individual basis by hospital staff. The authors propose a new model to support this clarification. Further research is needed to assess the suitability of the model for patients with intellectual disabilities and other vulnerable patient groups. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice. [ABSTRACT FROM AUTHOR]

People with learning disabilities are now enjoying a longer life expectancy than ever before as a result of enhanced medical and social interventions and improved quality of life. Some, particularly individuals with Down's syndrome, are susceptible to dementia at a significantly younger age than the average age of onset in the rest of the population. Currently, there is limited guidance on how to talk to people with learning disabilities about dementia and, until such information is shared, individuals cannot be positioned as an authority on their own condition. The new model presented here suggests a way of supporting staff and families to have enabling conversations about dementia that centre on the person's current situation, level of understanding and capacity. [ABSTRACT FROM AUTHOR]

Background: There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors. Methods: This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities. Results: Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult. The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. Conclusions: The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored. [ABSTRACT FROM AUTHOR]

Background There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim The 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 methods Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. Results People 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. Conclusion Disclosure 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. [ABSTRACT FROM AUTHOR]

The article discusses development of a model for breaking bad news to people with intellectual disabilities(IDs). The findings based on survey feedback for preliminary model was collected from 60 out of 109 participants including people with IDs, family carers, ID professionals, general health professionals and other stakeholders recommends to consider aspects of capacity, people and support to derive robust outcome measures for developing new model for breaking bad news to people with ID.

Background People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. Aims To examine the potential contribution of people with learning disabilities to data analysis in qualitative research. Methods This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross-compared with the analysis of other members of the research team. Results The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers. Conclusion It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for. [ABSTRACT FROM AUTHOR]

The author discusses the development in research and practice in palliative care for people with intellectual disabilities. Topics discussed include unique care needed by people with intellectual disabilities when they reach end of life, lack of knowledge and experience among palliative care staff, reasonable adjustments in regular service delivery for care of these people.

The article looks at the factors which influence where people with learning disabilities receive care at the end of their lives. The author discusses the aspects which contribute to a good place of care, including safe surroundings and the absence of pain or anxiety. The importance of honoring a patient's wishes for their palliative care is reviewed.

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. [ABSTRACT FROM AUTHOR]

Accessible summary • We have done research about cancer, death and dying. People with learning disabilities who had cancer were in our studies. This paper is about making sure that our research is ethical. This means that we don’t want to cause any harm (or make people upset) when we do the research. We ask: • How do we find people to be in our studies? • What should we do if people cannot understand the research they are in? • What should we do if people do not want us to use a made-up name in our writing? • What should we do if, during the research, we see that people with learning disabilities are not treated right? • What is the relationship with the researcher? Is the researcher a nurse, a helper or a friend? There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors’ own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants’ requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician. [ABSTRACT FROM AUTHOR]

Accessible summary • I had cancer, but I got better. This story is about what happened in my life, and about having cancer. • I was born with cerebral palsy and learning disabilities. My mum died of cancer when I was 14. It was difficult because she never told me that she was ill. It would have been better to know. • I went to my GP when my cancer started, but he kept saying there was nothing wrong. In the end, I was taken to hospital because I collapsed. • The first hospital never explained anything to me. I didn’t know what was going on, and I was very scared. • My doctor in the second hospital told me I had cancer. He explained everything. My doctor and carers helped me to decide what to do. I had chemotherapy (strong cancer medicine in a drip) and radiotherapy (a cancer treatment which is a bit like having an X-ray). It was hard but I knew I didn’t want to die. • My life is wonderful now. Having cancer made me stronger. • Doctors and nurses should know that it is really important people are told about their cancer. They should tell people in a way that they can understand. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Accessible summary • This is the story of John Davies. John has learning disabilities. He has cancer. He tells his story in his own words. • John found a lump on his penis (willie). It was cancer. He didn't go to the doctor. He left it too late. Now he is very ill with cancer. Maybe he will die of it. If he had gone to the doctor sooner, he could have got better. • This is what John is telling you: If you find something wrong with you, you should tell someone. You should go to the doctor. • We are doing a study. We want to find out what it is like to have cancer. We want to find out what helps people who have cancer. We are listening to their stories. There will be 20 people in our study. John is one of them. His story helps us to look after people with cancer better. As people with learning disabilities live longer, and the incidence of cancer is rising, it is of increasing importance to understand the lived cancer experience of this group. Consideration of the viewpoints of people with learning disabilities themselves will facilitate the development of cancer support services that are appropriate and sensitive to their needs. This paper presents preliminary findings of an ethnographic study into the experiences of people with learning disabilities who have cancer. One of the study participants, John Davies (who has mild learning disabilities), relates his cancer experience in his own words. Having ignored his symptoms until it was too late, he now urges others to go to the doctor as soon as possible. The study is ongoing, but findings to date highlight the importance of listening to the story of people's lives and illness. [ABSTRACT FROM AUTHOR]

Accessible summary What we did: We made a picture book about cancer for people with learning disabilities. The book explains about cancer. It also explains about the treatments for cancer. We wanted to find out if the book is useful for people with learning disabilities. We met five people with learning disabilities who wanted to find out about cancer. Most of these people had a mum or dad who died of cancer. We watched them when they read the cancer book. We talked to them after they read the cancer book. We also met their supporter. They were professionals. What we found out: • The doctors didn't tell people with learning disabilities about cancer. The supporters had to do it. Sometimes the supporters decided not to tell the person with learning disabilities about cancer. • The supporters found it difficult to talk about cancer and dying. They didn't know enough about cancer themselves. What we want to say to everyone now: It is important that people with learning disabilities are told about cancer. But the supporters need to be helped too. Learning disability staff and cancer staff need to work together. Learning disability staff need training to be health facilitators. Together they can help people with learning disabilities to find out about cancer. This paper reports on one of the findings of a small study that aimed to explore how people with learning disabilities accessed and were supported to use a pictorial cancer information book. Five people with learning disabilities who were affected by cancer and their paid carers participated in the study. Support staff in the study were the people who provided cancer information for people with learning disabilities. They struggled with this task, particularly when the person needed information about cancer that exceeded the staff's own knowledge and experience. Most were also inexperienced in dealing with the emotions around cancer. There was little evidence that the support staff received any support themselves, either from cancer professionals or from within their own organizations. The authors conclude that although the findings of this study are based on a small number of people, collaboration is required between health and learning disability services. Further more, in aid of collaboration, staff in learning disability services require education programmes to enhance their skills in facilitating the health needs of people with learning disabilities. [ABSTRACT FROM AUTHOR]

Aims This article reports on a small exploratory survey aimed at establishing the perceived training needs of palliative care staff related to supporting people with intellectual disabilities. Methods Questionnaires were collected from a sample of 46 palliative care staff. Respondents were asked to describe 'worrying issues' about supporting a person with intellectual disabilities. Answers were analysed using content analysis. Results Most respondents (37, 80%) highlighted communication as a concern. Other major issues included assessment and symptom control, patient comprehension, empowerment and ethical issues/consent. Discussion Communication and symptom assessment can be challenging, particularly in people with limited verbal communication skills. Palliative care staff need to be aware of the range of communication methods used by people with intellectual disabilities. Conclusion There is a lack of information and training materials around intellectual disabilities for palliative care staff. This needs to be addressed. More work is needed to develop appropriate training in this area. [ABSTRACT FROM AUTHOR]

Describes the development of the book 'Getting on With Cancer,' which aims to help people with learning disabilities deal with this condition. Background on the project developed by the Saint George's Hospital Medical School in London, England which would document how a patient with learning disability can be prepared for treatment; Important details which were included in the book.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Introduction: Support staff within social care settings have expressed a need for resources to facilitate end‐of‐life care planning with people with intellectual disabilities. This study aimed to co‐design a preliminary toolkit of end‐of‐life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. Methods: An adapted Experience‐Based Co‐Design process was applied to develop a toolkit for end‐of‐life care planning with people with intellectual disabilities. A co‐design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co‐facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers, and five healthcare professionals. Results: The All Together Group tested resources for and approaches to end‐of‐life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy‐read end‐of‐life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation‐starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end‐of‐life care planning with people with intellectual disabilities. Conclusion: Through an iterative, flexible, inclusive, and comprehensive co‐design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end‐of‐life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. Patient or Public Contribution: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.‐B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co‐design group as well. Two of these representatives were also co‐applicants in the overall project (N.P. and S.S.). The co‐design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers. Practitioner Points: To facilitate proper and timely end‐of‐life care planning, resources and approaches should be developed together with people with intellectual disabilities and support staff to make sure they are relevant, accessible, and workable in social care practice.People with intellectual disabilities prefer visual and creative approaches to end‐of‐life care planning rather than easy‐read plans and forms.Co‐producing an end‐of‐life care planning toolkit is an iterative, time‐consuming, and complex process, which requires a flexible approach, adapting to the feedback from and needs of co‐design group members. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: People 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. Method: An 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. Results: Themes related to nutrition and improved overall well‐being, use of nutritional supplements, specific foods, links to health comorbidities and food fussiness. Conclusion: This 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. [ABSTRACT FROM AUTHOR]

Background: Little 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. Methods: In 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. Results: In 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. Conclusion: The consensus‐based conversation aid is considered sufficiently relevant and feasible to be implemented in practice. [ABSTRACT FROM AUTHOR]

Background: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co‐designing resources to support older people with intellectual disabilities and their families to plan for the future. Methods: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience‐based co‐design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co‐design workshops and a user feedback phase. Results: The co‐design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co‐design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. Conclusion: The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co‐design approach was key to ensuring that the resources were useful and accessible for families. Patient or Public Contribution: People with intellectual disabilities and their families contributed to the design of the resources through the co‐design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co‐facilitated co‐design workshops and co‐authored this article. [ABSTRACT FROM AUTHOR]

Background: Increasing 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. Method: Interviews 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. Results: Four 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. Conclusion: Person‐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. [ABSTRACT FROM AUTHOR]

Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence‐base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. Methods: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in‐depth interviews, hospital diaries and photography with their parents. Results and Conclusions: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed. [ABSTRACT FROM AUTHOR]

The article discusses palliative care for people with intellectual disabilities. Areas of concern include pain assessment and becoming familiarized with the needs of the patient. The Palliative Care for People with Learning Disabilities (PCPLD) Network; and a new European Association of Palliative Care (EAPC) Taskforce address the needs of these individuals.

Background: People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well‐being. Methods: An 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. Results: Within 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. Conclusion: A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep. [ABSTRACT FROM AUTHOR]

Background: The advantages of including people with learning disabilities in research teams have been well described, but it is rare for researchers with learning disabilities to be employed at a university. This paper explores the extent to which university recruitment procedures are accessible to job applicants with learning disabilities. Methods: We present reflections on the process of recruiting a Research Assistant with a learning disability onto a university research team. The recruitment process is described from the perspectives of the employee, line manager and Human Resources representative. Findings: The recruiting manager and Human Resources representative had to make adjustments to a wide range of standard processes, including centralised online recruitment systems that were difficult to navigate, inaccessible job descriptions and difficult application forms. Finding workarounds to ensure reasonable adjustments were made was time‐consuming. The employee needed significant support from within his own networks to cope with the application process and had concerns about the potential impact of fixed‐term job contracts on future benefits. Despite our efforts, procedures remained difficult for the applicants to navigate. Conclusions: Employing researchers with learning disabilities is important. Fundamental changes to job application systems are required, including easy‐to‐understand information, alternative formats of application forms, and support available where needed. Flexibility from the Human Resources departments is key. They will need support from teams with experience working with people with learning disabilities. Accessible summary: It is important that people with learning disabilities are involved in research, but not many people with learning disabilities have a job at a university as part of the research team.We can learn from examples where people with learning disabilities applied for a university job. One example is Richard Keagan‐Bull, who got a job as a Research Assistant at Kingston and St George's University of London.What was it like to advertise for the job, apply for the job, and get the job? In this article, three people talk about this: Richard (who got the job), Irene (his manager) and Maria (who sorts out the paperwork and computer systems at the university).They found that the university's systems for finding and employing new staff were too complicated for people with learning disabilities. They had to make many changes to it, such as writing an easy‐read job advert and asking easier questions on the application form.This all took a lot of time. Irene and Maria made things easier but didn't always get it right. Richard still found it all quite complicated. They wrote this article because they want other universities to learn from their mistakes. They hope that more universities will employ researchers with learning disabilities.People might lose their benefits when they start a job. Research jobs at universities are usually only for a short time (1 or 2 years). It can be hard and stressful to get back onto benefits. This may put people off doing these jobs.You can see an easy‐read version of this paper in Supporting Information Appendix 4. [ABSTRACT FROM AUTHOR]

Background: There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors.Methods: This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities.Results: Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders.Conclusions: The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored. [ABSTRACT FROM AUTHOR]

Background: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. Methods: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54–89 years, with mild to moderate intellectual disabilities (IQ <70) and low social–emotional development levels. We combined participant observations and qualitative interviews. Results: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. Conclusion: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited. [ABSTRACT FROM AUTHOR]

The author reflects on the fulfillment of the learning disabilities patients requirements. She states that a recent study has identified the factors affecting implementation of measures which helps to improve the learning disabaled people's safety with in the National Health Services (NHS) hospitals. She mentions that strong informed advocacy is required to maintain the needs of learning disables for which clinical leadership and commitment are required at policy level.

The article presents an obituary for penile cancer patient John Anthony Davies.

As many people with intellectual disabilities (ID) live longer, the need for access to quality palliative care (PC) rises. People with ID realize significant barriers and inequities in accessing health care and PC. The need for integrated disability and PC services with extensive collaboration is great. The following tips are for PC clinicians caring for people with ID, their families, caregivers, and the community. While patient-centered care is difficult to distill into "tips," this article, written by an interdisciplinary team of PC and ID specialists, offers resources and references to improve the care provided to people with ID and serious illnesses. [ABSTRACT FROM AUTHOR]

Aim: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers.Method: The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement.Results: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability.Conclusions: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research. [ABSTRACT FROM AUTHOR]

Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families. [ABSTRACT FROM AUTHOR]

Background: Children 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. Method: Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. Results: No 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. Discussion: Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified. [ABSTRACT FROM AUTHOR]

The article discusses the process of end-of-life decision-making for people with intellectual disabilities. An interview with patient representatives was conducted. It was found that the end-of-life decision making could be improved by responsibilities of patients, doctors or by the support system. It mentions that regular discussion between everyone involved including people with intellectual disabilities themselves could improve knowledge about each other's motives for end-of-decision.