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Abstract Suicide is a significant leading cause of death among young people, particularly those struggling with mental disorders. The present study utilised data from 230 young people (aged 16–18 years) undergoing a transitional care process from Child and Adolescent Mental Health Services to Adult Mental Health Services within the MILESTONE European project (2014–2019), a longitudinal cluster randomised controlled trial. The objectives of this study were to monitor temporal patterns of general health and social functioning over two years, to detect sex differences, and to identify factors associated with Suicidal Thoughts and Behaviours (STB) at the first and last time points. The results demonstrate a decrease in STB over the two-year follow-up period among all participants. Females exhibited a higher prevalence of STB across all time points, whereas males only exhibited STB at the nine-month follow-up. The most influential factors associated with STB were previous suicide attempts and mood disorders at baseline, and mood disorders and relational problems at the end of follow-up. These findings emphasise the importance of monitoring STB and informing young people undergoing a transitional care period about its key risk factors. Moreover, sex differences in STB suggest the need for different preventive strategies for males and females.

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: 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.

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.

ABSTRACT 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.

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 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.

Background People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods Work package 1 rapid scoping reviews – three reviews focused on the health and social care needs of older people with learning disabilities and ‘behaviours that challenge others’, and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice – analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 – co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 – three stakeholder workshops co-produced service recommendations. Findings The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and ‘behaviours that challenge others’. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. ‘Planning Ahead’ cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers’ forum, a film, a podcast and academic papers. Conclusions There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. ‘Behaviours that challenge others’ was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families’ plans, and therefore change, may be frustrated by insufficient service resources. Future work Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the ‘Planning Ahead’ cards. Trial registration This trial is registered as ISRCTN74264887. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information. Plain language summary People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with ‘behaviours that challenge others’. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of ‘behaviours that challenge others’ is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age. Scientific summary Background While a significant age gap remains in mortality between people with learning disabilities (PWLD) and the general population, more PWLD are growing older. Research shows that parents of PWLD are dissatisfied with social care services and concerned about the future of their adult child. Various policies aim to enable PWLD to live independently with support; however, family carers often maintain long-term care. This can generate a crisis for the PWLD, who may be moved to an alternative home that may not be appropriate for them. Our research focuses on PWLD aged ≥ 40 years in line with evidence that people may experience early onset of long-term conditions such as neurological, cardiovascular, respiratory and gastrointestinal disorders. Aim The aim was to improve support for family carers, older PWLD (aged ≥ 40 years) and ‘behaviours that challenge others’ (‘BTCO’) by producing effective recommendations and resources to support planning ahead for a good older age. Objectives Develop an understanding of what is known about the health needs, service interventions and resources for older PWLD, with a focus on those labelled with ‘BTCO’, and family carers [work package 1 (WP1)]. Identify exemplars of good practice in services in the UK for older PWLD, and their family and professional carers towards the end of life (WP2). Explore service exemplars through ethnographic case studies (WP3). Evaluate support for older PWLD and their families through the co-production and testing of decision aid tools to support future planning (WP4). Co-produce recommendations with PWLD, carers, providers, social workers and commissioners, and resources for older PWLD, family and support workers and social workers (WP5). Methods Work package 1: systematic scoping reviews Three rapid scoping reviews (RRs) focused on the health and social care needs of older PWLD and ‘BTCO’ (RR1), the health and social care needs of family carers of older PWLD and ‘BTCO’ (RR2), and how care can be best co-ordinated for older PWLD and ‘BTCO’ (RR3). Literature including research articles, reports, policy and practice guidance was included. RR1 and RR2 included UK-related evidence from 2001, and RR3 had no date restriction and was international in scope. Older PWLD were defined as those aged ≥ 40 years. ‘Family carers’ included parents and siblings. Care contexts encompassed any community living. We focused our search strategy on ‘challenging behaviour’, ‘ageing’ and ‘learning disability’. Data were extracted into a form and considered alongside non-research information and guidance relevant to older PWLD and ‘BTCO’, and their family carers. A narrative approach was combined with insights from the research team and Project Advisory Groups. A three-stage inductive process was applied: development of a coding framework; development of descriptive themes and subthemes; and development of analytical themes and subthemes. Database searches yielded 261 returns, and a subsequent extended search for RR1 yielded 355 returns; 9 papers were included. RR2 searches yielded 157 returns; 7 items were included. RR3 searches yielded 1449 returns, with 9 included. Work package 2: scoping and mapping exemplars of good practice in living arrangements in the community for older people with learning disabilities and ‘behaviour that challenges others’ Published service standards and grey literature of WP1 were analysed into themes supporting criteria to judge the excellence of services. Data from the mapping of services were subject to rapid analysis to refine the criteria, and further criteria were generated about participants’ relationships with services. A mapping exercise aimed to identify if services met the criteria for excellence. Multiple routes were used to identify the commissioning and provision of exemplar services and to find out key information about services using interviews (n = 30), an online survey (n = 9), websites and other documentary sources, including a search of Care Quality Commission (CQC) reports. Data generation produced descriptions of services and critiques of the criteria of excellence. Analysis involved coding and summarising information into a template including how the service met the criteria, the service model and who the services were provided to. The templates were presented to the research team and Advisory Groups for a final decision on the list of excellent services for WP3. Work package 3: ethnography of exemplar community living models Nine case studies of four models of provision: independent supported living (n = 4), residential nursing home (n = 2), living with family and using day activities (n = 1) and Shared Lives (n = 2). Shared Lives is a national scheme in which PWLD live as part of a family usually funded by the local authority (LA). Ethnographic fieldwork was conducted by academics and co-researchers with lived experience. Sites were dispersed across England. Researchers spent approximately 20 days within each model of care. Interviews were conducted with 95 PWLD including people who would be described by services as having severe learning disabilities and/or complex needs, family carers, support workers and managers, and commissioners. A thematic data analysis of observation notes, interview transcripts and policy documents was undertaken. Coding categories evolved iteratively. Mind maps and more conceptual analysis of meaning, action and process were used, capturing the micro-detail of participants’ lives. Co-researchers were involved in a section of analysis using audio and written extracts of data. The opening of a second residential nursing site selected during proposal development was delayed. Modified ethnographic data collection methods, including documentary analysis of planning meetings, interviews with the service development project manager, lead commissioner, a LA councillor, the chairperson of a parent carer group, and the co-design process, were considered in interviews and by observation. Work package 4: co-production and testing of resources for older people with learning disabilities and their families Co-design methods explored what approaches are considered appropriate by PWLD and family carers, and a set of resources for PWLD and families was co-produced. The team included a research assistant with learning disabilities. Thirty-six people (9 PWLD, 11 parents, 16 siblings) took part in interviews and focus groups using communication aids Books Beyond Words and Talking Mats™. Data were analysed using a Framework approach. An experience-based co-design approach was used to produce a decision-making resource. Twelve online sessions were held with 11 participants, including a core group of 4 PWLD and 4 parents, to develop the resources. A small-scale evaluation tested these with eight families across a 2-month period. This focused on the usefulness of the resource, the impact of planning actions and feedback for improvement. Data were collected twice using a questionnaire. Work package 5: methods This WP aimed to co-produce recommendations for commissioners and providers, resources for carers and PWLD, and online training materials for social workers and support staff. Participants in two co-design workshops (n = 45 and n = 30) shared initial findings and discussed developing recommendations. A third workshop (n = 22) focused on the developing recommendations, and research priority setting in the north of England. Participants included a wide range of stakeholders: PWLD and family carers, NHS England, NHS, the CQC, LA delegates, disability charity organisations, service providers, commissioners and academics. Findings Work package 1 Rapid review 1 generated four themes: transition over time, including proactive planning for circumstances in which PWLD are no longer able to remain in their home; avoiding the need for inappropriate transitions; making transition work; and an absence of targeted resources to support this. There is limited planning by ageing family carers and PWLD, and a need for professional involvement in supporting the family before ageing-related problems become manifest. Commissioners have a responsibility to proactively plan for the delivery of appropriate housing and support, requiring robust databases of ageing family carers and older PWLD. Rapid review 2 generated four themes: a lack of accessible advice, information and support for families to plan ahead; challenges facing family members with their own needs; the lack of availability of suitable housing and support; and lack of targeted resources to guide PWLD, family carers or professionals in planning ahead. Rapid review 3 identified three layers to co-ordinating care for older PWLD. For individuals this is communicating effectively and co-ordinating care to pre-empt the effects of ageing, delivered by skilled staff. At service level this is co-ordination across teams and services including housing, drawing on those with expertise in learning disabilities. At local/regional level, this is commissioning services taking account of current and future age-related needs. The reviews confirmed an inadequate evidence base concerning the experiences, needs and support of family carers of older PWLD, who are being supported when their family member’s preference is to remain at home and/or to achieve a potential move where appropriate and desired. WP1 also highlighted the conceptual limitations of the term ‘BTCO’. Work package 2 The final criteria of excellence were: personalisation, with goals, daily plans and activities shared and updated matching staff to people being supported personalised living space and choice around who this is shared with proactive, preventative health care involving primary care, and involvement of NHS multidisciplinary learning disability teams staff recruitment underpinned with the right values and skills high staff retention to provide continuity of care inclusive communication methods family involvement community engagement and inclusion trauma-informed services where appropriate good practices such as end-of-life care planning, dementia assessment and management embedded as routine commissioner endorsement of provider quality and resilience commissioners working with providers, PWLD and families in building capacity for future services. The mapping involved review of 330 potentially relevant locations, which was reduced to 74 after consideration of the relevance of the service to older PWLD. There was contact with around 260 people across England, which led to 89 contacts who provided information in formal interviews and informal discussions, via online meetings and by e-mail about at least one specific service, with around 3–6 provider and commissioner perspectives on the same services. A shortlist of 15 services was agreed for consideration in WP3. Work package 3 Findings were organised around environmental, organisational and social factors. Environmental factors supporting independence, and choice over who people interact with, were maximised for those living on their own or with people they chose to live with. Organisational factors related to systems that support good and consistent relationships with support staff, staff matching, aspirational support and adapting to changing needs as people age. Commissioners that actively plan for adapting care packages and contingency provision were seen to avoid crises. Planning for end-of-life care was not well supported by policies and practices except in the nursing home and one supported living provider. Shared Lives provision actively supported people who were developing dementia. Social factors included maintaining family and community relationships and being supported to do a range of activities. The label of ‘BTCO’ could be removed with consistently good support and environment. Poor practices of institutionalisation were observed, where staff schedules over-rode choice and/or duration of activities. Small providers that had strong values and management engagement with support workers were more able to offer consistently good support than larger organisations where excellent support can exist alongside examples of poor support. Observation of planning for a new nursing home offered useful insights into the challenges involved in growing capacity for local services for PWLD as they age, while adhering to models of excellent care. The research showed the extent to which independence, choice in relationships, support for healthy ageing, and meaningful activity including work was evidenced in different ways across providers, with some failing to achieve this despite the rhetoric and aspirations of providers and commissioners. Work package 4 Families were acutely aware of the need to plan ahead and were worried about the future, unaware of and unsupported to explore options. Co-design sessions stimulated ideas and discussion and the content and format of a decision-making resource was produced based on what worked for family carers and PWLD. This comprised a set of 102 ‘Planning Ahead’ cards and a ‘Me and my plans’ booklet in which families could record their discussions and plans. What participants wanted in their home reflected WP3 findings about the factors that enable excellence in care. They wanted to choose who they lived with; to be supported by people who know them well and care for them; to live in a location that suits their lives; and to have control over what they do and when. The lack of awareness of alternatives and absence of social work support was striking. In some cases, the lack of options led to parents ignoring the future, denying PWLD the opportunities to have lives that their peers without learning disabilities can have. Work package 5 Formative discussion across three stakeholder workshops informed the development of recommendations about how to raise awareness and improve access to information about planning and options. The workshops involved a range of stakeholders, and short films were used to present developing project analysis and raise key questions. Discussion focused on improved needs assessment data including for those not known to services; improved peer learning by providers and commissioners, and funding of self-advocacy groups to support people’s local decision-making; and improved individual support by matching staff to people and enabling staff to celebrate their successes. To support dissemination, a session plan was created in standard and Easy Read versions to enable self-advocacy groups to contribute to the development of practical recommendations for providers and commissioners. Resources Project outputs include two OpenLearn courses, one for practitioners and one for family carers; a training resource to support researchers, PWLD and family carers to work together as ethnographers; a resource for social workers hosted by the British Association of Social Workers; a carers’ forum hosted on Facebook; a short film; a podcast about the experience of taking part in the project; blogs; and a range of publications for non-academic audiences and academic papers. Limitations While a systematic approach was taken to reviews and mapping services, it is possible that some evidence was missed in WP1 and WP2. The COVID-19 pandemic created challenges for participant recruitment, and workarounds were needed. One ‘excellent’ site withdrew early in WP3 due to staffing issues caused by the pandemic. Reliance on providers for recruitment in WP3 resulted in a sample limited to White British participants. Participation may have influenced providers to present excellence and hide less good practice, but, given the mix of provision observed, this was a low risk. The discussion cards produced in WP4 may be in formats and have content that exclude some people. This needs to be tested further. Attempts to plan by families may be frustrated by insufficient resources and options to achieve what people want, raising expectations that cannot be met. Conclusions There is little research on older PWLD and family carers. Some participants were leading good lives in their own homes with excellent support from staff who knew them well. Even largely excellent services vary in their proactive approach to planning for older age support and end-of-life care. Families are often unsupported to plan ahead, and PWLD are by default left without choices about their future lives. The label ‘BCTO’ was found to be an unhelpful term that did not stimulate discussion of personalised care and rights to autonomy. It had little practical utility in the ethnographic research and was absent in the reviews. Research recommendations The over-riding recommendation is the urgent need for a new strategy for older PWLD and family carers that encompasses commissioning practices (including the sharing of best practice); professional input (roles and responsibilities, the role of social workers, support staff skills and training); proactive support to live and age well; and excellent service design (appropriate, sustainable, local and adaptable housing that enables people to age and die in place). Recommendations are made for improved proactive health care, organisational learning, matching and support for staff, and ‘try before you buy’ options to support choice and personalisation. Future work Given the lack of focus in this area, there is a range of future work to consider: experiences of older PWLD from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature and pet ownership; access to mainstream support; and evaluation of the ‘Planning Ahead’ cards. Trial registration This trial is registered as ISRCTN74264887. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

Objective Gastro-oesophageal reflux disease (GORD) is a common condition affecting children, characterised by the passage of gastric contents into the oesophagus causing pain, vomiting and regurgitation. Children with neurodisability (such as cerebral palsy; CP) are predisposed to more severe GORD due to coexisting gut dysmotility and exclusive/supplementary liquid diet; however, there are no existing tools or outcome measures to assess the severity of GORD in this patient group. For children without CP, the ‘Paediatric Gastro-oesophageal Symptom and Quality of Life Questionnaire’ (PGSQ) assesses symptoms and response to treatment, but the questions are not suitable for children with significant cognitive impairment. We aimed to adapt the existing PGSQ assessment tool to enable use in evaluating children with CP and GORD.Patients/interventions Cognitive interviews were conducted by the research team with six parents/carers of children (aged 3–15) with CP (Gross Motor Function Classification System level V) who have current or past symptoms of reflux. They were asked to interpret the questionnaire using a ‘think-aloud technique,’ and offer suggestions on alterations to questions. Reasons for changing questions included confusing/difficult to understand questions, differing interpretations of questions and response choices not applying to the patient group.Results The PGSQ was modified iteratively following each interview. Overall, parents/carers reported that it was acceptable to recall information over the past 7 days. In the final version, it was felt the questions were relevant, useful and related to symptoms that they observed. It was easy to comprehend with no uncomfortable questions. Suggestions for future work included a section specifically focusing on the school day answered by school staff and home life answered by carers who assist them in the home.Conclusions We have adapted the PGSQ to improve relevance and acceptability for families/carers of children with symptoms of GORD and neurodisability. Further work is needed to validate the questionnaire for this patient group.

Abstract 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.

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: 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]

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: To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature. Aims: To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts. Design: A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff. Methods: Phase 1 comprised interviews with senior managers (n = 65), content analysis of hospital documents and a staff survey (n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents (n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews (n = 98) and community staff survey (n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children (n = 803) and parents (n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings. Data analysis: A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics. Results: Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set. Conclusions: Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being. Future work: The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital. Limitations: We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability. Study registration: The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4). Funding: This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.

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.

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]

Abstract Background In northern Nigeria, UNICEF has supported introduction of a short message service (SMS) system for data transmission in the Community-based Management of Acute Malnutrition (CMAM) programme. The SMS system operates in parallel to the traditional paper-based system, and weekly data are transmitted directly from the health facilities to the federal level. For the paper system, monthly data summaries are passed through all levels of government. We assessed the data quality and performance of both CMAM information systems. Methods We undertook a contextualised study in one state in north-west Nigeria, with additional analysis of secondary data from five states. Fieldwork methods included: observation of the data system in nine selected facilities in three local government areas; recounting of data for admissions, exits, and ready-to-use therapeutic food (RUTF) utilisation; and interviews with health workers and government officials. Results While the small number of facilities does not enable robust generalisation of the quantitative findings, the strengths and weaknesses detected pertain to the whole programme, as they relate to how the system was designed and is operated. We found that the accuracy and reliability of CMAM data were deficient to a similar extent in the paper-based and SMS systems. For the audited month, we found large discrepancies between recounted data and paper records in regard to admissions, exits and RUTF cartons consumed in the majority of facilities visited. There was also a large discrepancy in the reported percentage of “deaths or defaulters” (6.5%) compared to 22% based on a recount of outpatient cards. Errors are mainly introduced during data collection and when completing tallies at facility level. Conclusion Our findings indicate the need for improvements in the design of the monitoring system, training and supervision of data management, and communication of results; as well as clear evidence on how measures to improve data quality may affect performance of individual CMAM clinics. The CMAM default and death rates currently reported in Nigeria are likely to be under-estimates, and therefore provide a misleadingly good impression of CMAM programme performance.

This study aims to analyse the potential environmental impact of natural rubber (NR) condoms over its entire life cycle. The environmental performance of the production process of NR condoms is also compared to that of synthetic polyisoprene (PI) condoms. Options to reduce the environmental impact of condom production are proposed and evaluated. The potential environmental impacts are quantified by life cycle assessment (LCA). The study takes a cradle-to-grave approach, and considers six phases: 1) fresh latex production, 2) concentrated latex production, 3) condom production, 4) condom use, 5) condom transportation, and 6) condom disposal. The comparative analysis of NR and PI condom production takes a gate-to-gate scope. The functional unit is one gross condom. The results indicate that the condom production phase has the largest share (34–73%) in the environmental impact during the life cycle of NR condoms, followed by the disposal phase (20–60%). Comparing the production of NR and PI condoms reveals that the production of PI condoms results in a 1.5–2.5 times higher environmental impacts than the NR condom production, due to higher electricity consumption, especially for the compounding, dipping, and leaching processes. Reduction of electricity use is a key measure to reduce the environmental impact. Combining natural gas with electricity for the dipping process is a promising option to reduce the electricity use; it results in ~10–17% reduction in environmental impacts.

IMPORTANCE:. A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 is hypothesized to play a role in the pathogenesis of invasive infection, but studies in sepsis are lacking. OBJECTIVES:. To study A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 protein level in pediatric sepsis and to study the association with outcome. DESIGN:. Data from two prospective cohort studies. SETTING AND PARTICIPANTS:. Cohort 1 is from a single-center study involving children admitted to PICU with meningococcal sepsis (samples obtained at three time points). Cohort 2 includes patients from a multicenter study involving children admitted to the hospital with invasive bacterial infections of differing etiologies (samples obtained within 48 hr after hospital admission). MAIN OUTCOMES AND MEASURES:. Primary outcome measure was mortality. Secondary outcome measures were PICU-free days at day 28 and hospital length of stay. RESULTS:. In cohort 1 (n = 59), nonsurvivors more frequently had A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels above the detection limit than survivors at admission to PICU (8/11 [73%] and 6/23 [26%], respectively; p = 0.02) and at t = 24 hours (2/3 [67%] and 3/37 [8%], respectively; p = 0.04). In cohort 2 (n = 240), A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels in patients within 48 hours after hospital admission were more frequently above the detection limit than in healthy controls (110/240 [46%] and 14/64 [22%], respectively; p = 0.001). Nonsurvivors more often had detectable A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels than survivors (16/21 [76%] and 94/219 [43%], respectively; p = 0.003), which was mostly attributable to patients with Neisseria meningitidis. CONCLUSIONS AND RELEVANCE:. In children with bacterial infection, detection of A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 within 48 hours after hospital admission is associated with death, particularly in meningococcal sepsis. Future studies should confirm the prognostic value of A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 and should study pathophysiologic mechanisms.

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]

Abstract Background In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children’s units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children’s hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children’s hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. Methods Semi-structured interviews were conducted with senior staff across 15 children’s hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. Results Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. Conclusion Further consideration must be given to how learning disability nurse roles within children’s hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. Trial registration The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2–4).

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: Evidence reviews recommend consistent and structured support for children with neurodisability and their caregivers in care pathways in which professionals recommend a gastrostomy feeding tube. To date, and to our knowledge, no research has shown how these recommendations have been implemented. Objectives: The objectives were to describe different exemplar models of psychosocial support and provide an estimate of their resources and costs. Design: This was a mixed-methods study involving (1) a web-based survey, (2) a qualitative, collective case study of psychosocial support provision in four services and (3) an estimate of costs and preference through a willingness-to-pay study. Setting: Four service configurations in different locations in England and Scotland. Participants: Participants were staff who responded to a survey (n = 67) and interviewees (staff, n = 58; parents/children, n = 29). Findings: Psychosocial support was rarely formalised or documented; it was delivered by different members of the multidisciplinary team, rather than by designated staff, and it was often integrated into appointments dominated by clinical care. Parents expressed different needs for support but reported little opportunity to discuss emotional aspects. Psychologists were not routinely involved and, in general, families were underserved by psychosocial services. Professionals constructed families’ need for psychosocial support in terms of their own roles and the management of risk. Mechanisms for integrating and delivering support were identified, including models of care that linked community and tertiary health services and integrated health and education through pooled budgets. Although generally valued by both staff and parents, peer-to-peer parent support was not consistently offered. Barriers included concerns about confidentiality and appropriately matching parents. Parents participated as members of a feeding committee at one site. Three analytical constructs described the provision of psychosocial support: ‘hidden work’, expressing emotional vulnerability and negotiations around risks and values. The cost-of-support study found that there was a mean of 2.25 appointments (n = 8 parents or carers) over the previous 12 months. The cost of health-care professionals’ time spent on providing psychosocial support ranged from £0.00 to £317.37 per child per year, with an average cost of £76.42, at 2017 prices. In the willingness-to-pay study the median rank of enhanced support, involving the opportunity to see a psychologist and parental peers, was significantly higher than that of usual care (n = 96 respondents, both carers and professionals, who completed rating of the service; p

Objective Young people moving from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) are faced with significant challenges. To improve this state of affairs, there needs to be a recognition of the problem and initiatives and an urgent requirement for appropriate tools for measuring readiness and outcomes at the transfer boundary (16–18 years of age in Europe). The objective of this study was to develop and validate the Transition Readiness and Appropriateness Measure (TRAM) for assessing a young person’s readiness for transition, and their outcomes at the transfer boundary.Design MILESTONE prospective study.Setting Eight European Union (EU) countries participating in the EU-funded MILESTONE study.Participants The first phase (MILESTONE validation study) involved 100 adolescents (pre-transition), young adults (post-transition), parents/carers and both CAMHS and AMHS clinicians. The second phase (MILESTONE cohort study and nested cluster randomised trial) involved over 1000 young people.Results The development of the TRAM began with a literature review on transitioning and a review of important items regarding transition by a panel of 34 mental health experts. A list of 64 items of potential importance were identified, which together comprised the TRAM. The psychometric properties of the different versions of the TRAM were evaluated and showed that the TRAM had good reliability for all versions and low-to-moderate correlations when compared with other established instruments and a well-defined factor structure. The main results of the cohort study with the nested cluster randomised trial are not reported.Conclusion The TRAM is a reliable instrument for assessing transition readiness and appropriateness. It highlighted the barriers to a successful transition and informed clinicians, identifying areas which clinicians on both sides of the transfer boundary can work on to ease the transition for the young person.Trial registration number ISRCTN83240263 (Registered 23 July 2015), NCT03013595 (Registered 6 January 2017); Pre-results.

Study ObjectivesObstructive sleep apnea (OSA) is common in children with Down syndrome (DS) and is associated with adverse health and cognitive outcomes. Daytime clinical assessment is poorly predictive of OSA, so regular screening with sleep studies is recommended. However, sleep studies are costly and not available to all children worldwide. We aimed to evaluate the psychometric properties and predictive value of a newly developed screening questionnaire for OSA in this population.Methods202 children aged 6 months to 6th birthday with DS were recruited, of whom 188 completed cardio-respiratory sleep studies to generate an obstructive apnea hypopnea index (OAHI). Parents completed the 14-item Down syndrome OSA screening questionnaire. Responses were screened, a factor analysis undertaken, internal consistency calculated and receiver operator characteristic (ROC) curves drawn to generate an area under the curve (AUC) to assess criterion related validity.ResultsOf 188 children who completed cardiorespiratory sleep studies; parents completed the screening questionnaire for 186. Of this study population 15.4% had moderate to severe OSA defined by an OAHI of ≥5/h. Sixty-three (33.9%) participants were excluded due to “unsure” responses or where questions were not answered. Using the remaining 123 questionnaires a four-factor solution was found, with the 1st factor representing breathing related symptoms, explaining a high proportion of the variance. Internal consistency was acceptable with a Cronbach alpha of 0.87. ROC curves for the total score generated an AUC statistic of 0.497 and for the breathing subscale an AUC of 0.603 for moderate to severe OSA.ConclusionA well designed questionnaire with good psychometric properties had limited predictive value to screen for moderate to severe OSA in young children with DS. The use of a screening questionnaire is not recommended. Screening for OSA in this population requires objective sleep study measures.

Abstract 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 who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.

Abstract Background Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. Methods Individual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants. Results The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. Conclusion Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families. Trial registration The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

Abstract Background People with HIV with access to treatment are growing older and living healthier lives than in the past, and while health improvements and increased survival rates are welcome, the psychological and social consequences and quality of life of ageing are complex for this group. Understanding how ageing, HIV and quality of life intersect is key to developing effective interventions to improve QoL. Methods One hundred people with HIV over the age of 50 (range 50–87, mean 58), were recruited through HIV community organizations, and clinics, and included men who have sex with men (MSM), and Black African and White heterosexual men and women. The WHOQOL-HIV BREF was used, as well as the Every Day Memory Questionnaire, and additional questions on anxiety and depression to supplement the WHOQOL. Results While most rated their quality of life (QoL) positively, bivariate analysis showed that better QoL (total score and most domains) was strongly associated with being a man; in a relationship; in paid employment; having higher level of income; not on benefits, and to a lesser degree with being MSM, having higher level of education, and diagnosed after the age of 40. Multivariate analysis showed that not being on benefits was the variable most consistently associated with better quality of life, as was being partnered. Concerns about everyday memory difficulties, and anxiety and depression scores were strong predictors of poorer quality of life. Conclusion While the cross-sectional nature of the investigation could not establish that the associations were causal, the findings indicate that concerns about memory difficulties, anxiety and depression, as well as gender, ethnicity, financial factors, and relationship status, are important contributors to QoL in this group. These findings point towards the need for further research to clarify the mechanisms through which the factors identified here affect QoL, and to identify possible interventions to improve the QoL of older people living with HIV.

Abstract Background In 1974 a joint FAO/UNICEF/WHO Expert Committee met to develop methods for nutrition surveillance. There has been much interest and activity in this topic since then, however there is a lack of guidance for practitioners and confusion exists around the terminology of nutrition surveillance. In this paper we propose a classification of data collection activities, consider the technical issues for each category, and examine the potential applications and challenges related to information and communication technology. Analysis There are three major approaches used to collect primary data for nutrition surveillance: repeated cross-sectional surveys; community-based sentinel monitoring; and the collection of data in schools. There are three major sources of secondary data for surveillance: from feeding centres, health facilities, and community-based data collection, including mass screening for malnutrition in children. Surveillance systems involving repeated surveys are suitable for monitoring and comparing national trends and for planning and policy development. To plan at a local level, surveys at district level or in programme implementation areas are ideal, but given the usually high cost of primary data collection, data obtained from health systems are more appropriate provided they are interpreted with caution and with contextual information. For early warning, data from health systems and sentinel site assessments may be valuable, if consistent in their methods of collection and any systematic bias is deemed to be steady. For evaluation purposes, surveillance systems can only give plausible evidence of whether a programme is effective. However the implementation of programmes can be monitored as long as data are collected on process indicators such as access to, and use of, services. Surveillance systems also have an important role to provide information that can be used for advocacy and for promoting accountability for actions or lack of actions, including service delivery. Conclusion This paper identifies issues that affect the collection of nutrition surveillance data, and proposes definitions of terms to differentiate between diverse sources of data of variable accuracy and validity. Increased interest in nutrition globally has resulted in high level commitments to reduce and prevent undernutrition. This review helps to address the need for accurate and regular data to convert these commitments into practice.

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. (Contains 4 figures.)