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This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users' understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older.

Background: The term "intellectual disability" is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term "intellectual disability" has been particularly pronounced in countries such as the USA. By contrast, this change has been relatively silent in England. Methods: In light of this, the paper explores the discussions of 12 focus groups conducted with professional and lay groups working in or influencing learning disability research and practice in England. Each focus group was asked the following two questions: Have you heard of the term "intellectual disability" and how do you feel about the term "intellectual disability?." Discussion and Conclusion: Thematic analysis of the discussions identified four dominant themes: dislike and disbelief; ambiguity; tautology; and fear. It is concluded that more explanation is required in order for researchers and practitioners in England to understand this semantic change.

Background: This paper describes the experience of conducting a co‐researched project with people with learning disabilities in Madrid, Spain, during the COVID pandemic and lockdown. I discuss the advantages and limitations of working online and challenges encountered while coordinating and facilitating the research. Methods: Our research project was on the impact of COVID on the lives of people with learning disabilities, which the eight co‐researchers chose. As part of my PhD, I offered my services as researcher to work together with persons with learning disabilities. Eight people took up my offer. We worked together from January 2021 to March 2022 virtually and I recorded this experience. I have written the paper, but as part of my co‐researcher agreement, I have shared my reflections and work with my co‐researchers, and we have co‐written a section to share our findings. Findings: In this paper, I discuss the advantages and limitations of working online, challenges I encountered while coordinating and facilitating the research and the work together. Remote work enabled the group to work on a biweekly basis and with members from different parts of Madrid. It saved people time and effort getting around town, yet we had to introduce express times and spaces to socialise and create a working relationship that is less natural than during in‐person interactions and breaks. During our fieldwork, we found that the pandemic had spurred the access to digital devices and programmes, but people may still be reliant on their environment, carers or supporters to facilitate it. I included a section written with my co‐researchers, in which we reflect together on the experience of working online and how we reached out to their peers during our fieldwork. We identified limitations due to our online research methodology such as lack of owning a digital device, the difficulties having access to a private space from which to connect online and the joy of meeting other people to exchange experiences. Conclusion: Human rights based participatory research can be done online. There are different ways of overcoming barriers to participation. However, there are people with no access to the internet or without digital skills that are being excluded and we must ensure that we reach out to them as well. Accessible summary: I did an online participatory research project with 8 people with learning disabilities from Spain using Zoom. Participatory research means taking part and being involved in the decisions on how the research is done.I discuss online way to make decisions, share power and control over the research, have some social connection in the group, and give information.I show that people with learning disabilities can work remotely but need more opportunities to learn digital skills. Digital skills are the skills to use technological devices, e.g., a smartphone, a tablet or a computer.Digital skills were very important during the pandemic and the lockdown, for example knowing how to find and use information and stay safe online and how to communicate with others over the internet.Participatory research projects need to support co‐researchers to learn new skills and apply them. The researchers need to be creative to make the online work engaging. [ABSTRACT FROM AUTHOR]

Background: Negative attitudes remain a major barrier to the equality of people with disability, especially when coupled with the lack of autonomy imposed on many people. This paper analyses how disability self‐advocacy groups seek to change community attitudes and work towards systemic change by mobilising knowledge from their lived experience. Methods: The paper applies a cycle of praxis community development approach (a cycle of experience, learning and reflection, synthesis and planning, and implementation and review) to conceptualise and analyse their activities. The methods were a desktop document search, focus groups and reflective analysis with members of two self‐advocacy groups. Findings: A synthesised data analysis found that applying the four‐part community development framework was useful to understand the practice and the purpose of work by self‐advocacy groups to change attitudes. The analysis also demonstrates the benefits for advocates and codesigned activities to intentionally apply the cycle of praxis model to guide their future efforts to change attitudes. Conclusions: The research provides evidence that self‐advocacy groups achieve sustained impacts on attitudes in the community, beyond the direct benefit to their members. Government investment in self‐advocacy has potential to leverage wider system change in attitudes to achieve policy goals for the rights of people with disability. Methodologically, the research also has implications for the benefit of inclusive roles in reflective analysis to understand the lived experience of how practices contribute to system change. The design is an opportunity for inclusive researchers to intentionally incorporate reflective analysis into research processes. Accessible summary: Bad attitudes towards people with disability are a hard problem to fix.People with disability are more involved in changing community attitudes than they used to be.This paper talks about how the work of self‐advocacy groups changes attitudes.By working with self‐advocates, we learned that they used their own experiences in an organised way to change community attitudes.It would be good to share this success more widely. [ABSTRACT FROM AUTHOR]

This paper presents two studies using focus groups with people with learning disabilities. One study was about "What is it like for people with learning disabilities who have a family or friend with cancer?" and other study was about "How to break bad news to people with learning disabilities?" Two of the researchers had learning disabilities themselves. This article reports how we worked together as a team. The focus groups involved various methods for data collection such as storytelling, role-playing and voting. Researchers with learning disabilities enable participants with learning disabilities to discuss difficult subjects. (Contains 1 table.)

This paper evaluates a participatory action research (PAR) approach to conducting family research in Ireland. Drawing on PAR methodology it describes how parents of people with intellectual disabilities were recruited and trained to facilitate focus groups of parents in Ireland, in order to create an evidence base to support improved dialogue between parents and service providers. Its findings are that a PAR approach has considerable potential to contribute to improved understanding of the realities of family life with an adult with intellectual disabilities, particularly if plans to create a dialogue with service providers and to build sustainable networks of parents are included in the project.

Background: The COVID‐19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co‐designed tool, the COVID Check‐in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check‐in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty‐four percent of participants engaged in the Health Check‐in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check‐in, along with challenges using the COVID Check‐in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Accessible Summary: Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check‐in'.Then people from our team taught online health courses about how to use the COVID Check‐in Tool and other health topics.After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check‐in with their doctor and how it went, or what problems they had with it.Almost half of the people who took the courses had a Health Check‐in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it.We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools. [ABSTRACT FROM AUTHOR]

Accessible summary: A supported internship is a work placement for people with disabilities that includes spending some time at work and some time at school or college. It usually lasts for a year and people get extra support in the work placement.We wanted to find out how supported internships for people with learning disabilities helped them to feel like they belong in workplaces and society.We found that the supported internships we studied did help people with learning disabilities to feel like they belong. The interns developed self‐confidence, they were able to talk to people more easily, and they learned that they were good at things. This was because the people they worked with saw them as individuals who were able to do helpful things. It was also because of the feedback they got at work and how they worked in different departments.We think there should be more supported internships because they help people with learning disabilities to take the next step in life more confidently. Researchers need to find out more about how supported internships can help people to be socially included. Background: Obtaining employment for young people with learning disabilities remains challenging, and people may not be able to experience work that offers them the opportunity for broader and deeper social inclusion. Supported internships (SIs) offer a possible solution to this problem, providing a bespoke, structured study programme designed for students with disabilities. Methods: This paper explores, through an ecological systems approach, the experiences of three graduates, six interns, two job coaches and three colleagues, from a long running SI in a large private‐sector organisation that delivers utilities in the midlands in the UK. The organisation has many different departments and interns work in several of these, including the mailroom, reprographics, catering, health and safety, reception, and customer services. The researchers conducted small focus groups and interviews with the participants described above. Findings: Thematic analysis identified three core phenomena of relevance to understanding the relationship between the SI programme and interns' experience of deepened and broadened social inclusion. The first theme illustrated positive changes to interns' and graduates' self‐concept (e.g. self‐determination) and participation, the second captured accounts of reciprocity in relationships, and the third contained insights into the SI practices that were relevant to improved social inclusion. Conclusions: The SI did lead to the broadening and deepening of social inclusion for interns and graduates. The person‐centred ethos of the SI, personalised approaches to workplace adaption and feedback policies were practices that began to emerge as implicated in this impact. Positive developments to self‐concept emerged as important in building interns' and graduates' capacities for participation. The study also demonstrated that an ecological systems approach is useful as a basis for conceptualising and investigating changes to the amount and quality of social inclusion, as experienced by people with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary: Sleep hygiene education (SHE) is a "behavioural" intervention which helps parents create the best sleeping conditions for their child. It is often used to improve sleep problems that children with developmental disabilities have.SHE includes advice around creating bedtime routines, creating a calming bedroom environment and eating healthily. Lots of health and social care professionals use SHE, but there are not many research papers which show the best way to support parents to try out the advice.This research tells the story of nine parents and eleven professionals who have used SHE to help improve children's sleep problems.Their experiences are important in the research literature and will help services such as community children's learning disability teams improve the way SHE is used in the future. Background: Sleep hygiene education (SHE) is a familiar intervention for addressing behavioural sleep problems in children with developmental disabilities that involves advising parents on sleep‐promoting behaviours; however, it is supported by a limited evidence base. Materials and methods: This exploratory study aimed to enhance qualitative understanding and explore stakeholder perceptions about experience, current practice and ideas around the implementation of SHE. Parents of children with developmental disabilities and sleep problems (N = 9) and sleep practitioners (N = 11) took part in semi‐structured interviews and focus groups, and data were thematically analysed. Results and discussion: The analysis identified four parent themes: Beliefs about sleep problems; Getting professional help; Ways of knowing about sleep; and Visions of sleep support. Two practitioner themes were also identified: Sleep service accessibility and Inconsistent sleep support. Conclusion: The findings provide further insight into how parents of children with developmental disabilities experience sleep problems, and how SHE is currently implemented. These have implications for both policy and practice. [ABSTRACT FROM AUTHOR]

Accessible summary This paper stems from a pilot project offering residential experiences for young people with Autism., The project aimed to offer residential experiences to the young people and help them to develop life skills that would aid their transition to adulthood., The primary purpose of this paper is to analyse the viewpoints of the young people, their parents/carers and the educational and care professionals involved in order to understand the potential impact of projects of this nature., Summary Laying the foundations for an effective transition into independent adulthood is widely perceived as a key priority for practice with children/young people who have Autistic Spectrum Conditions. However, theory and research indicate that, for those children affected, autism often prevents the acquisition, development and expression of key life-skills which might assist their inclusion in the wider community. In exploring these issues, the authors of this paper report on the Phenomenographic analysis of a Residential Project, involving 16 children per young people who had Autistic Spectrum Conditions, at a Special School in the North West of England. The primary conclusion from this study is that provision for many children and young people with Autistic Spectrum Conditions is most meaningful if it is enabled by practice which: supports the wider human rights and needs of their family; realistically prepares the individual for a life outside of school and the home; and also enriches the unique lifeworld of each young person. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning disabilities do not live as long as other people or as long as many should., Nationally, people with learning disabilities do not get as good help when they do get ill., This paper looks at work that was conducted in Lincolnshire to see how the health of people with learning disabilities compared to the rest of the population., The report recommended changes which could be made to make things better., Summary The NHS Constitution requires all NHS organisations to provide high-quality comprehensive services, based on clinical need, which do not discriminate between patients (DH 2010a). Together with its health and social care partners, the NHS also has a statutory duty of care to meet the needs of all patients with dignity and compassion. Recent evidence has revealed sharp failures in the NHS to meet these goals in relation to people with learning disabilities nationally. This article considers the well-established evidence that the latter group have worse health experiences and worse health outcomes than the population as a whole, which significantly contributes to marked inequalities both in morbidity and mortality. The public sector equality duty of the Equality Act 2010 imposes a statutory requirement on health and social care agencies to address such inequalities. This article draws on the first systematic health needs assessment ( HNA) of adults with learning disabilities in the county of Lincolnshire, established in 2011 to identify their health needs and make recommendations for improvement. [ABSTRACT FROM AUTHOR]

Accessible summary We are a team of four researchers, two of whom have learning disabilities., We did two studies using focus groups with people with learning disabilities. One study was about 'What is it like for people with learning disabilities to have someone in their family or a friend with cancer?' The other study was about 'How to break bad news to people with learning disabilities?', This article tells the story of how we did focus groups together. The researchers with learning disabilities helped to plan, to run the groups and to look at the results afterwards., We did different things in the focus groups. We talked together and also used storytelling, role-play and voting., Researchers with learning disabilities can really help the group to open up and talk about difficult subjects., Summary This paper presents two studies using focus groups with people with learning disabilities. One study was about 'What is it like for people with learning disabilities who have a family or friend with cancer?' and other study was about 'How to break bad news to people with learning disabilities?' Two of the researchers had learning disabilities themselves. This article reports how we worked together as a team. The focus groups involved various methods for data collection such as storytelling, role-playing and voting. Researchers with learning disabilities enable participants with learning disabilities to discuss difficult subjects. [ABSTRACT FROM AUTHOR]

Background: Narrative exposure therapy (NET) is a trauma‐focused cognitive behavioural therapy, recommended by the National Institute for Health and Care Excellence in 2018, to treat posttraumatic stress disorder in adults. There is a lack of research exploring the effectiveness of NET with adults with intellectual disabilities. The aim of this study is to develop an adapted version of the NET protocol (IDNET) for use with adults with mild intellectual disability. Methods: A qualitative research design was employed. Stage one involved systematically adapting the NET protocol for adults with mild intellectual disabilities in collaboration with a service user group comprising eight consultants. Stage two involved gaining professionals' views on the adapted protocol and on the use of NET in intellectual disability services. This comprised a focus group of eight clinical psychologists specialising in intellectual disabilities and an expert panel of three NET clinicians. The framework approach was conducted on the focus group data only following guidance from a previous study. Findings: An adapted NET protocol and collection of 'easy read' therapy materials were developed (IDNET), which incorporated feedback from the three stakeholder groups. Key concepts of 'Optimism and motivation to adapt NET for people with mild intellectual disabilities' and 'Factors related to NET in practice' were developed to describe the views of clinical psychologists. A number of issues were raised by professionals regarding the delivery of IDNET. Conclusions: Professionals were optimistic about IDNET; however, issues raised regarding the delivery of IDNET require exploration when IDNET is trialled in practice. Specific implications for clinical practice and future research are discussed. Accessible summary: A traumatic experience is something that happens to us that is very scary. It is also scary when we think about it afterwards.Narrative exposure therapy is a talking therapy. It helps people who have had more than one traumatic experience.We do not know if this therapy can help people with intellectual disabilities. Here, we talk to people with intellectual disabilities and those who work with them. We ask them how we can make this therapy suitable for people with mild intellectual disabilities.This is important because people with intellectual disabilities are more likely to have traumatic experiences than others.We hope that people will try using this therapy with people with mild intellectual disabilities. This will help us find out whether it is useful. [ABSTRACT FROM AUTHOR]

Background: COVID‐19 is a life‐threatening virus which has circulated the globe resulting in unprecedented effects on the daily lives of people across the world. Countries across the globe have advocated measures, including self‐isolation and maintaining social distance to reduce the spread of COVID‐19. The pandemic has seen an increase in the use of information and communication technology (ICT) for many aspects of life. This study aimed to find out from people with intellectual disabilities what it was like using ICT during COVID‐19 and how this affected their lives. Method: Interviews and focus groups were conducted with 19 people with learning disabilities throughout the COVID pandemic. The qu/alitative data gathered was analysed using longitudinal thematic framework analysis to identify the main ways technology use had impacted on people's lives and the challenges and facilitators of technology use during this time. Findings: Technology played an important role in the lives of the people with learning disabilities who took part in the study. Technology facilitated continuation and maintenance of important daily activities and roles in people's lives (e.g., jobs, getting support and leisure), keeping people meaningfully occupied and maintaining social contact which reduced feelings of loneliness and isolation. People adapted and learned new skills, with help from friends, family and support staff, which boosted self‐confidence. Despite some identified barriers, prior technology use, tenacity and a positive attitude towards ICT supported learning new skills and adaptation to increased ICT use. Conclusions: Supporting the development of digital competence, confidence and persistence in people with learning disabilities was important during this international crisis and has had a fundamental positive effect on wellbeing. Accessible summary: COVID‐19 restrictions means that things that used to happen face‐to‐face now happen using technology online.We talked to 19 people to find out their experiences of using technology during COVID‐19.They told us that though they would be lost without it. It helped people to keep doing things but keeping in touch using technology was not the same.Experience, education, support from other people, being positive and not giving up helped people use technology during COVID‐19. [ABSTRACT FROM AUTHOR]

Accessible Summary: A lot of people with learning disabilities enjoy using the Internet every day and use social media on their mobile phones. Staying safe online is important.This research used interviews and focus groups to find out what children, young people, their parents and teachers thought about Internet safety, extremism and online radicalisation.Extremism is when people have strong and dangerous views about laws or religion. Radicalisation is when people support extremism in a dangerous way. People can be targeted on the Internet to talk them into supporting extremism.The young people said they knew a lot about staying safe online, but parents were concerned about risks.When people with learning disabilities learn about staying safe online, they should be given information about online radicalisation and grooming for terrorism. Background: Young people with learning disabilities are increasingly using the Internet but can be vulnerable to being victimised online. As learning disability services develop guidance on how to support Internet use, it is important to explore what support is necessary. Methods: This research used interviews and focus groups to explore what children, young people, their parents and teachers thought about Internet safety, extremism and online radicalisation. Results: Results showed that the students were active Internet users and were confident about online safety but parents were concerned about the risks associated with Internet use. Following taking part in a peer education project that focussed on Internet safety and specifically about risks of online radicalisation and extremism, the students understood possible links between grooming and online radicalisation and their teachers increased their understanding of the importance of digital engagement for their students. [ABSTRACT FROM AUTHOR]

Accessible summary: Barriers make it hard for pupils to learn. We wanted to assess barriers to learning. We made an assessment called the Assessment of Barriers to Learning in Education‐Autism (ABLE‐Autism).We asked teachers to tell us about the barriers to learning. They told us about lots of barriers. We wanted to include the most important barriers.We used the Delphi method with teachers. The Delphi method helps people to agree what is important.Teachers told us about the most important barriers to learning. We included the most important barriers to learning in our assessment. Background: This study outlines how a modified Delphi procedure was used with special educational needs teachers to select skills and behaviours for inclusion in the Assessment of Barriers to Learning in Education‐Autism (ABLE‐Autism). The ABLE‐Autism is a new teacher assessment to show progress in barriers to learning for pupils on the autism spectrum with coexisting intellectual disabilities in special schools. The research aim was to select items for inclusion in the assessment based on teacher ratings of relevance, comprehensibility and comprehensiveness. Method: Following a review of the literature and teacher focus groups, a list of 86 items was developed and a modified two‐round Delphi exercise was conducted with special needs teachers. Items were selected for inclusion if at least 80% of teachers agreed that the item was (a) able to be understood, (b) important to assess and (c) the median score associated with whether the item was able to be understood and important to assess was 1 (the highest score possible). Results: In the first round, 56 items met the criteria for inclusion and were retained. Thirty items were amended, and, after three items were amalgamated with other items, 27 amended items were included in the second round. After the second round, 14 additional items met the threshold to be included in the final assessment. Conclusions: After both rounds, 70 items were endorsed by teachers and included in the ABLE‐Autism. The input of special needs teachers provided initial face and content validity for the new outcome measure. [ABSTRACT FROM AUTHOR]

Accessible Summary: Learning a second language can provide people with more opportunities to be included in society. For example, they could have more opportunities for employment, social activities and travel.However, people with intellectual disabilities are typically not given the opportunity to learn a second language because people think they do not have the ability to learn more than one language.This study looked at the experiences of university students with intellectual disabilities who took part in an Irish Sign Language course.The study used a focus group (a group interview) to speak to six university students with intellectual disabilities and found that students spoke about their experience with learning Irish Sign Language, the class design and the importance of learning Irish Sign Language.This study showed that people with intellectual disabilities critically reflected on their experience of learning a second language. More research is needed to see if this finding is common amongst individuals with intellectual disabilities. Background: Opportunities for people with intellectual disabilities to become bi/multilingual tend not to be widely available despite demonstrated linguistic and extralinguistic advantages associated with an ability to use more than one language. This article focuses on the learning experiences of students with intellectual disabilities in learning Irish Sign Language (ISL) as part of a university course tailored for students with intellectual disabilities. Methods: The sample consisted of six adults with intellectual disabilities who were enrolled in a full‐time university programme in Ireland. Students were required to take a 12‐week course entitled Language and Society, which included ISL lab sessions. A focus group was conducted asking questions that focused on the students' experience of taking part in a formalided ISL class. Findings: Three themes were generated in the analysis of the data: learning ISL, class design and implications of taking an ISL course. Findings showed that participants reflected critically on their learning experiences, their expectations of learning ISL, class content and social implications of learning ISL. Conclusion: This study demonstrates the potential of people with intellectual disabilities to be able to critically engage in second language learning. [ABSTRACT FROM AUTHOR]

Accessible Summary: This study looks at the experiences of adults with intellectual disabilities using respite services in Ireland. Some adults stayed overnight in a respite house, and others were part of evening and weekend groups.Overall, the adults were happy with their respite supports.They suggested nine important ways that respite services can meet a person's needs and support them to do the things they want to do.The adults said it was important to have fun, time and space, choice, and to be independent at respite. They should have a chance to build friendships and be in groups that work well together. It is important to get on well with staff too. Respite supports must meet different needs. Persons with disabilities should take part in the design and management of respite supports.A national policy for respite in disability services is needed in Ireland. The views and suggestions of persons with disabilities should be considered if a policy is developed. Background: Respite supports are highly valued by persons with disabilities and their families/carers. In Ireland, there has been regular commentary in relation to a lack of respite services, with users and other stakeholders reporting limited access, inequity of provision, and long waiting lists for support. Materials and Methods: Much of the research on respite focuses on the views of carers, with little account of the experiences of persons with disabilities. This study examines the perspectives of twenty‐eight adults with intellectual disabilities; most are regular users of traditional and/or alternative respite services. Information was gathered through individual interviews and focus groups. Findings: Participants identified nine key elements of a person‐centred respite service; fun, time and space, choice, independence, friendships, compatible groupings, positive relationships with staff, flexible supports, and user involvement in service design and delivery. Conclusions: Person‐centred supports should enable individuals to achieve maximum well‐being and flourish in all aspects of their lives. This study found that at a personal level, respite services and the interactions that occur within them are person‐centred in that they support the individual to do the things they want to do, make everyday choices, try new activities, develop positive relationships, and have a good quality of life. However, at the level of service planning and decision‐making, there is less evidence of a person‐centred approach. Participants reported having little involvement in the design and delivery of respite services at local or national level. The development of a respite policy in Ireland, that considers the views of respite service users, would be welcome. [ABSTRACT FROM AUTHOR]

Accessible Summary: Support staff play an important role in helping people with learning disabilities to meet a partner and have a relationship.Not getting good support can make it difficult for people to have a relationship.Many support staff want to help people to have a relationship, but are worried about people being abused. This is especially true for those who do not have a lot of staff support.Support staff do not always get good support themselves to help people with learning disabilities to have relationships, such as training and a policy to follow. This makes it hard for them to know what they are allowed to help with. Background: People with intellectual and developmental disabilities face challenges in developing and maintaining intimate relationships, frequently requiring support from staff. Method: Focus groups were conducted with 26 social care staff members to explore the support they provided to people with intellectual and developmental disabilities to find a potential partner and/or develop an existing relationship. Results: Staff reported that many people with intellectual and developmental disabilities wanted to be in a relationship and that they did what they could to facilitate this, sometimes providing substantial support. Some staff had to address complex issues relating to sexuality, often with no training and with a lack of clear organisational policies. Conclusion: The need for external inspection and regulatory bodies to prioritise relationship support is emphasised. [ABSTRACT FROM AUTHOR]

Accessible summary: Ten people with learning disabilities were trained to work with a university to carry out research about people with learning disabilities, arts and culture.They spoke to 82 people with learning disabilities to find out what gets in the way of attending arts and culture activities.The research found that transport, cost and needing support often got in the way of people being able to go to activities and people needed to feel safe and welcomed when they attend an arts and culture activity.It was found that including more people with learning disabilities in making decisions about art and culture could help more people attend activities. It was also found that involving more people with learning disabilities in training people who work in arts and culture could help people feel safe when they go to activities. Background: Arts and culture have proven benefits. However, access to arts and culture is not consistent. For people with learning disabilities, arts and culture are often considered therapeutic activities, and therefore, the needs of people with learning disabilities in accessing mainstream arts and culture are often overlooked. This research explores how people with learning disabilities experience culture, the barriers they experience in accessing it and how cultural sector organisations can improve access to their activities and events. Methods: A participatory action research approach was adopted for the study. Interviews and focus groups were conducted. The findings were analysed and resulting themes discussed with the peer research team. The group codelivered a workshop aimed at representatives from the cultural sector to share their findings. Results: The results from the focus groups and interviews indicated that for people with learning disabilities, community is central to their experience of arts and culture. The study found that transport, cost and needing support to attend cultural activities were barriers to access, whereas consideration of physical access and "emotional access" needs improved access for people with learning disabilities. Recommendations include improved consultation with people with learning disabilities about cultural opportunities and the formation of cocreated training delivered with people with learning disabilities to support cultural sector staff to offer a warm and safe environment. Conclusions: The findings from the study provided useful learning for cultural sector organisations. However, both the findings of the research and the process of participatory action research were noted as being significant for how the cultural sector can build an ethos of inclusivity to ensure their offer is relevant and accessible to people with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary: Dramatherapy groups are being used to help people with learning disabilities move from hospital back to their homes.The staff who support people to attend the groups talked about their experiences.The staff felt the groups help people stay well, build friendships and get support quickly if needed.The staff felt that the groups were helpful for themselves too as they felt supported and learned new skills. Background: The UK Government's Transforming Care Agenda for people with learning disabilities has struggled to meet its goals of reducing inpatient beds and building community‐based support. This article reports on the experiences of support staff who attended dramatherapy groups developed to assist transitions from an inpatient hospital and to prevent re‐admissions through post‐discharge support. The groups provide ongoing support and a place where relationships can be developed between supporter and those supported. Materials and Methods: A focus group with a purposive sample of paid support staff. The data was synthesised using a thematic framework approach. Results: Themes include: (a) new way of supporting and (b) hospital connection. The groups helped improve social interaction, friendship building, communication and self‐confidence. Additional benefits include the pooling of support and a connection with professionals that enables difficulties to be caught early. Conclusions: Support workers valued these dramatherapy groups, recognising how the intervention enabled people with learning disabilities to develop relationships and provide easy access to mental health professionals. Support staff also found benefits for themselves which included shared support and an increased understanding and insight into the people they support. [ABSTRACT FROM AUTHOR]

Accessible Summary: We talked to 14 people about what it is like to do inclusive research in the Republic of Ireland.People said that more time is needed to do inclusive research well. They also told us about how hard it can be for all members of the research team to be equally involved in all research stages.Learning to speak up for themselves was something people with learning disabilities said they liked about being an inclusive researcher.Inclusive research teams need to write more about how they work on projects together, to give others ideas about how to do good research that matters to people with learning disabilities. Background: The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations,) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change. Method: This study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland. Results: Thematic analysis using Atlas.ti software yielded three themes: "Continuum of inclusive research," "Value of inclusive research" and "Power relations within inclusive research." Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors. Conclusions: This study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted. [ABSTRACT FROM AUTHOR]

Accessible summary: Dementia is an illness caused by damage to a person's brain. People with learning disabilities, especially people with Down's Syndrome, are more likely to get dementia, and when they are younger. We talked to people working in community learning disability teams to find out what they thought about services and support for people with learning disabilities and dementia and carers. Screening and assessments mean that people get diagnosis and support more quickly and other problems are picked up. More appropriate housing and support is needed so people can stay at home for longer. Research needs to look at the best ways to support people with learning disabilities and dementia. It is important to find ways to involve people with learning disabilities and dementia and carers in meetings about their support and future research. Abstract: Background: Dementia prevalence rates are higher amongst people with learning disabilities than the general population. People with Down's syndrome are at even greater risk of developing dementia and of developing dementia at an earlier age. This study, conducted as part of a wider service evaluation, explored community learning disability team perspectives on screening, pathways, training, information and supports developed to improve services for people with learning disabilities and dementia. Methods: A focus group was held with health and social care professionals working in community learning disability services. Thematic analysis was used to analyse the data. Results: The dementia screening, pathways and processes had become embedded in practice, leading to a common framework, an efficient, multidisciplinary, proactive approach, earlier detection and diagnosis of dementia and identification of other health needs and issues. This avoided crisis situations supporting people to remain at home longer. Training and information were felt to improve care quality and reduce caregiver anxiety. People with learning disabilities and caregivers were involved to varying extents. External influences impacting on support included the availability, appropriateness, cost and effectiveness of different models of service provision. Conclusions: Service developments have been made as a result of the findings which suggest that dementia pathways and supports improve service provision and outcomes for people with learning disabilities. It is important to develop the evidence base on the effectiveness of different service models for people with learning disabilities and dementia. Future studies need to gather views of people with learning disabilities and carers. [ABSTRACT FROM AUTHOR]

Accessible summary We wanted to find out what adults with learning disabilities who receive challenging behaviour services thought about challenging behaviour and the services they receive., We met with people in small groups and talked with them about challenging behaviour., There were barriers to attending the groups like services not having enough staff or transport., People in the groups told us what they thought of words like challenging behaviour, what they understood about challenging behaviour services, and what it was like meeting with them., Abstract Background Following scandals such as Winterbourne view, Department of Health, (A national response to Winterbourne View Hospital, 2012) seeks changes in challenging behaviour services. A key part of this change is ensuring people with learning disabilities who use challenging behaviour services have more personalised support and their voices are heard. Materials and Methods This article describes a study that used focus groups to explore challenging behaviour and challenging behaviour services with people with learning disabilities who used community-based challenging behaviour services. We analysed the focus groups using thematic analysis. Results We found three main themes: Engaging with service terminology: the language of Challenging Behaviour; Locating and Framing behaviour; and Engaging with Professionals. Conclusion People with learning disabilities who receive challenging behaviour services are able to participate in focus groups and tell us about their experiences. Further consideration is required concerning how people with learning disabilities experience their engagement with challenging behaviour services. This study has led to a larger study currently in progress. [ABSTRACT FROM AUTHOR]

Accessible summary Many people who commit crimes in the UK have learning difficulties or disabilities., The police give people information to read in custody, but this information can be confusing., This project presented this information in an easier-to-read way using symbols and simple words., We asked different people what they thought of the information and most views were very positive., Summary At least 20-30% of offenders within the criminal justice system ( CJS) have learning disabilities or difficulties. This creates significant challenges in relation to meeting their information needs about rights, entitlements, processes and procedures. We report a pilot project where widgit Symbols were used to create more accessible information about rights and entitlements for people entering custody. The widgit Symbol custody sheets were used in two Hampshire Constabulary custody centres for a 4-week period and feedback gathered from 14 custody officers and inspectors. The views of 27 other important stakeholders, including young people with autism and their families, appropriate adults, and senior personnel within the CJS, were gathered about the sheets through interviews and focus groups. The reaction to the sheets was overwhelmingly positive with many participants suggesting that symbol-based information in custody could be rolled out nationally and also extended more widely to include other parts of the CJS. [ABSTRACT FROM AUTHOR]

Accessible summary The government and NHS say it is important for people with learning disabilities to be able to take part in research if they want to., We asked five people with learning disabilities about participating in research. They said they wanted to participate in research to help make things better for other people with learning disabilities. They also said if research is not easy to understand, it can be hard for people with learning disabilities to take part., We also sent a questionnaire to clinicians working in a learning disabilities service. Thirty-four clinicians replied. They said research with people with learning disabilities was important to help improve services. They said, sometimes it is difficult to find the time, money and support to do research., Summary The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning disabilities participated in a focus group ( n = 5), and clinicians completed a questionnaire ( n = 34), to explore each groups' experience of research, and identify barriers that may prevent people with learning disabilities from participating. People with learning disabilities engaging in research was seen as essential to increase knowledge of learning disabilities, as well as promote development of appropriate services. Barriers to participation included ability, ethical considerations, practicalities and restriction by 'gatekeepers'. Clinicians also felt a lack of resources and support prevented them from fulfilling their roles within research. Implications and recommendations are discussed. [ABSTRACT FROM AUTHOR]

Accessible summary [ABSTRACT FROM AUTHOR]

People with learning disabilities have fewer choice opportunities than the general population. Existing research provides some insight, but the choice-making experiences of those who do not always utilise available healthcare remains under-explored. This research explored the choice-making experiences of two groups of individuals with a learning disability: (Group 1 – Irregular attenders) those who had opted out of healthcare appointments for avoidable reasons; and (Group 2 – Regular attenders) those who had attended all appointments or not attended for unavoidable reasons. Interviews were carried out with people with learning disabilities (N = 4) and/or their primary carer (N = 13). In addition to these interviews, Physiotherapy staff participated in a focus group (Group 3). The interviewed individuals with learning disabilities described experiences of and opportunities for making everyday choices but generally identified ‘others’ as being responsible for making their healthcare choices. Greater understanding of the healthcare expectations and experiences of individuals with learning disabilities, carers and healthcare staff is required to support people with learning disabilities as active healthcare decision-makers. [ABSTRACT FROM AUTHOR]

Promotion of service-user and carer involvement is part of the mainstream policy agenda in health and social care [Crit Soc Policy 25 (2005) 164]. Much effort has been invested into involving people with learning disabilities in decisions regarding aspects of their lives through advocacy projects and the utilisation of person-centred planning approaches. However, people with learning disabilities continue to be a group of people who are the ‘most excluded, least independent and most likely to lack control in every day life’ [Sociology of Health and lllness 30 (2008) 532]. This article describes a focus group that was conducted to explore the lived experiences of people with learning disabilities as users of services. Thematic analysis revealed three key themes: feelings of unfairness and inequality; experiences of inclusion and power; and future visions. Implications for practice are discussed. [ABSTRACT FROM AUTHOR]

Accessible summary: • Support staff were asked what were the important things they did to support people with learning/intellectual disabilities, and what training and support they needed to do their job.• Support staff said they had difficulties in communicating with each other, and feel stressed when asked to do things which did not make the people they support happy.• Support staff also stated that there should be more training and support for new staff.• Support staff need more help to learn: how to give each other advice and how to cope with being stressed. Summary: This study explores the perceptions of support workers working with adults with learning/intellectual disabilities, training and support needs. Data was collected by focus group (n = 3) and semi‐structured interviews (n = 5). Participants saw their key role as maximising quality of life, identified 'Trial and error' as the main mode of skill development for new staff and experienced stress as a result of conflict between their beliefs and demands of the service. Participants recognised their responsibility to model good and challenge poor practice; however, poor communication and assertiveness skills affected their ability to do this. A preference for more on site supervision to provide leadership was indicated. Training by the community learning disability team was highly regarded; however, there were indications that carers found this difficult to put into practice. It is suggested that development of personal skills and relating training to human rights and person‐centred planning perspectives would best enable staff to carry out their roles. [ABSTRACT FROM AUTHOR]

Despite evidence of poor service provision for people with learning disabilities in the UK (e.g. DRC, Code of practice. Rights of access: services to the public, public authority functions, private clubs and premises. London: The Stationery Office, 2006; Sloan, J Inform Law Tech [electronic journal], 2001), very little use has been made of Part III (Goods, Facilities and Services) of the Disability Discrimination Act 1995 by people with learning disabilities (personal communication, Disability Rights Commission Conciliation Management Unit). Difficulties faced by individuals who might consider pursuing a claim against a service provider are well-documented and include stress, time and financial constraints (Crit Soc Policy, 20: 533–549, 2000). Once a complaint has been made or a claim lodged other legislative barriers can make it difficult to pursue a case (Industr Law J, 32: 164–184, 2003). The aim of this article is to investigate the effectiveness of legislative use of Part III of the Disability Discrimination Act 1995 in promoting equality for people with learning disabilities. Effectiveness will be gauged through analysis of the legal process engaged in by two people with learning disabilities who made claims against service providers under Part III of this Act. [ABSTRACT FROM AUTHOR]

Accessible summary • We did a study to look at the way research questions were developed by people with learning disabilities, their carers and care-workers. • Everyone thought of questions for helping people with learning disabilities be healthy. • There were six main research questions. Everyone voted for their top question. • The study showed that people with learning disabilities and carers can describe research questions that they feel are important. Also they can decide which ones are the most important to study. Here we describe the process by which research questions were developed for reducing health risks for people with learning disabilities. A participatory approach was used to give service users and carers a clear voice in deciding questions, thereby setting the research agenda. Audio-taped interviews and focus groups were used. Forty people (20 service users, 10 carers, 10 care-workers) were recruited and gave consent for interview. Interviews incorporated scenarios and these were used to describe two different types of health risks (i) those relating to lifestyle, and (ii) those associated with unrecognized illness. Participants were invited to specify a research question for each scenario. A total of 78 questions were identified, and from these, six key themes emerged. The themes were validated using three separate focus groups (service users, carers, care-workers). From this process six final questions encompassing participants’ key research concerns were produced. Questions were resubmitted to participants for prioritizing, using a postal voting system (75% response rate). The research clearly demonstrates that people with learning disabilities and carers can identify and prioritize research questions they consider significant for improving health. [ABSTRACT FROM AUTHOR]