The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

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, 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.

What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.

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.

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

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.

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.

Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.

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.

Being a child with intellectual disabilities in hospital: The need for an individualised approach to care.

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.

'There's a timebomb': Planning for parental death and transitions in care for older people with intellectual disabilities and their families.

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.

Behavioural sleep problems in children and adults with intellectual disabilities: An integrative literature review.

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.

Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021).

BACKGROUND: Euthanasia review committees (Regionale Toetsingscommissies Euthanasie, RTE) scrutinise all Dutch cases of euthanasia and physician-assisted suicide (EAS) to review whether six legal 'due care' criteria are met, including 'unbearable suffering without prospect of improvement'. There are significant complexities and ethical dilemmas if EAS requests are made by people with intellectual disabilities or autism spectrum disorders (ASD). AIMS: To describe the characteristics and circumstances of people with intellectual disabilities and/or ASD who were granted their EAS request; investigate the main causes of suffering that led to the EAS request; and examine physicians' response to the request. METHOD: The online RTE database of 927 EAS case reports (2012-2021) was searched for patients with intellectual disabilities and/or ASD (n = 39). Inductive thematic content analysis was performed on these case reports, using the framework method. RESULTS: Factors directly associated with intellectual disability and/or ASD were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases. Reasons for the EAS request included social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was 'no prospect of improvement' as ASD and intellectual disability are not treatable. CONCLUSIONS: Examination of societal support for suffering associated with lifelong disability, and debates around the acceptability of these factors as reasons for granting EAS, are of international importance.

Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: A descriptive ethnographic study.

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.

Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities.

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

The impact of nutrition on sleep in people with an intellectual disability: An integrative literature review.

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.

Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.

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.

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.

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.

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.

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

Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff.

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.

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference.

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).

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

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.

Excellence in palliative and end-of-life care provision for people with intellectual disability.

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