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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.

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.

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.

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.

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.

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.

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.

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.

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: 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.

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.

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.

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]