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Background: Young people with learning disabilities use many digital technologies to undertake meaningful and social activities in their everyday lives. Understanding these digital activities is essential for supporting their digital participation. Including them in exploring their digital activities can be challenging with conventional qualitative research methods, because digital activities are a complex and abstract topic to discuss, particularly for people with learning disabilities. In this paper, we present the rationale for developing and using visual tangible artefacts (VTAs) to include young people with learning disabilities in exploring their digital activities. Methods: We devised a suite of VTAs to engage young people (aged 14–27 years) with learning disabilities in exploring their digital activities via interviews, diaries, and workshops. The VTAs comprised Talking Mats (TMs), probing with technology, digital snapshots and inspiration cards. Findings: Our significant methodological findings were that VTAs are useful for exploring digital activities with young people with learning disabilities. TMs and probing with technology can engage participants to map, recall and explain their digital activities. Digital snapshots are valuable for validating findings with participants, and inspiration cards aid perspectives about digital aims. Although communication and abstract representations can be challenging for people with learning disabilities, VTAs that combine familiar, simple, intuitive, individualised, rewarding elements and collaboration with participants proved valuable for exploring their digital activities. Conclusion: We concluded that VTAs are inclusive tools for exploring the digital activities of and with young people with learning disabilities. The VTAs allowed access to conversations, information and insights that are not obtainable otherwise. As such, the VTAs may be regarded as a new model for inclusive research in the field of disability and technology studies. Accessible summary: Digital technologies are widely used by young people with learning disabilities to talk to their friends and family, meet new friends and entertain themselves.These digital activities are complex and can be difficult to talk about.We developed methods to support conversations about digital activities with young people with learning disabilities.The paper gives examples of how the methods are used, why they are necessary and how they promote discussion of digital activities. [ABSTRACT FROM AUTHOR]

The Camphill Movement is one of the largest independent providers of social care for people with a learning disability: there are 119 communities located throughout the world. From the start, the principal aim of the Movement—co‐founded by Dr. Karl König and his wife Tilla (née Maasberg) in Aberdeen—was to build communities in which children and adults with a learning disability could live, learn, and work with others in healthy social relationships. Karl König was born in Leopoldstadt, Vienna on the 25 September 1902 and died on the 27 March 1966 in a Camphill community in Brachenreuthe, Germany. Mathilde Maasberg was born in Gnadenfrei, Silesia, on the 9 March 1902 and died on the 17 September 1983 in the Camphill community of Fairways in South Africa. The paper focuses primarily on the lives of Karl and Tilla König and highlights the key points in their respective biographies. Whilst it is usually the name of Dr. Karl König that is associated with the Camphill Movement, a case is presented here that his wife significantly shaped the essential character of the Camphill way of life. She had been born into a Moravian Brethren settlement and latterly wove a strong, discernible and enduring element of Moravian practice into the fabric of Camphill life and work. Since the deaths of Karl and Tilla König Camphill communities have continued to seek the creation of environments where the economic, social and spiritual aspects of the community life complement one another. The paper identifies six key constituents that it is argued are central to the essence of Camphillness: mutuality, rhythmicity, spirituality, tranquillity, ecological sensitivity and economic sustainability. The paper ends with reflections on the 21st Century relevance of Camphill communities. Accessible summary: This paper is about the life of Karl and Tilla König.It discusses the influence of the Moravian Brethren.The characteristics of Camphill communities.I conclude by reflecting on the 21st Century relevance of Camphill communities. [ABSTRACT FROM AUTHOR]

Background: The Circle of Security Parenting programme is a manualised parenting intervention that aims to enhance secure attachment and improve relationships between children and their caregivers. It is gaining global popularity and acquiring emerging support. Researchers are increasingly interested in its effectiveness in enhancing parent–child attachment, improving parent psychological flexibility and reducing parental stress. However, research to date has predominantly focused on parents of typically developing children, despite the Circle of Security Parenting intervention being used as a parenting programme in specialist services for children with learning disabilities. There is, however, no clear evidence that this programme meets the diverse needs of parents who encounter additional challenges that may impact on the development of secure parent–child attachment relationships. This case study aims to pilot a seven‐session Circle of Security Parenting programme for parents of children with learning disabilities. Methods: Four participants completed pre‐ and post‐intervention outcome measures specified by Circle of Security Parenting, including: the Parental Stress Scale, Parental Acceptance Questionnaire, Acceptance and Action Questionnaire II and the Caregiver Helplessness Questionnaire. Findings: Quantitative results are mixed, and did not demonstrate the improvements in parental stress or psychological flexibility that might be expected. Qualitative accounts of participants' experiences offer potential explanations for the findings that may be unique to parents of children with learning disabilities. Conclusion: This paper recognises that further research is needed to identify evidence‐based programmes that meet the needs of this population. Accessible summary: The Circle of Security Parenting (COS‐P) programme is a group for parents. It helps them to think about their child's needs and behaviour.COS‐P tries to help parents improve their relationship with their child.We do not know if it helps parents of children with learning disabilities, who often have different challenges.We used questionnaires to see if COS‐P helps parents of children with learning disabilities. The questionnaires showed that COS‐P did not help parents as much as we expected.We found that it is important to listen to what parents say about their experiences of the COS‐P programme. This helps us understand if it is useful for them. [ABSTRACT FROM AUTHOR]

Background: In 2006, the United Nations agreed the Convention On the Rights Of Persons With Disabilities. Article 19, 'Living independently and being included in the community' sets out the 'equal rights of all persons with disabilities to live in the community, with choices equal to others...' A generation earlier, a small group of activists had come together at the invitation of the King's Fund—a major United Kingdom charity—to produce (in February 1980) the first pamphlet in an extensive series of contributions to improving the lives of people with learning disabilities. This became the An Ordinary Life initiative. I choose the generic word 'initiative'. This was not a government policy change—in England we had to wait until 2001 for the White Paper Valuing People to catch up with progressive practice. It was not a project as usually understood, although it inspired many local projects across the country. Rather this first pamphlet became the common currency for the emergence of a social movement aspiring to end the institutionalisation of disabled people (in 1980 there were still more than 50,000 people with learning disabilities living their lives in British institutions and many more at risk of this when no longer able to rely on parental support) and ensure their right to live like others in the community. The Narrative: My narrative here, writing as a participant, focuses on the period 1980–2001. It tells the story of how these activists—energised by scandal, international innovation and most importantly by personal experience—created a compelling vision of this better future, communicated this vision and helped to mobilise widespread action to deliver progress. It describes how good people were inventive in finding better ways of listening to people with learning disabilities and arranging ordinary housing and support to meet their aspirations. It considers how regional and national agencies created mutually‐reinforcing elements in the infrastructure necessary to strengthen the local capacities required for success. Lessons: My account also offers an interpretive commentary on how transformative change was achieved. There was no grand plan. Emerging leaders, who appreciated the urgent need for change, inspired and learned from each other in ever‐expanding networks. Serendipity often played a part, strategy developed through experience and change proceeded by what has been called 'scaling across'. Effectively the King's Fund and its allies created a system for continuous learning to support vision‐driven innovation. There are lessons here for meeting the unfinished business of achieving An Ordinary Life in the 2020s. Accessible summary: When this Journal started 50 years ago, very many people still lived in large and isolated places called institutions. My sister was one of these people.In 1980, a major British charity said that everyone has the right to live An Ordinary Life.This article tells the story of how this idea made a big difference in many people's lives.The story suggests lessons for how more people can get the lives they want in the years to come. [ABSTRACT FROM AUTHOR]

Accessible Summary This paper attempts to find out why it is that many adults with a learning disability and their older parents and carers do not make plans for their future., The author takes a look at other research to try and find the reasons for why this is., The author finds that this may be to do with the type of relationship families have with professionals and if they feel able to trust them., The author suggests ways to improve these relationships., Summary This paper reports on the key findings from a review of the literature on future planning for adults with a learning disability who live with older parents and carers. This area has gained attention in recent years, owing to the improved life expectancy of people with a learning disability and the increasing number who now outlive their parents. For those currently living with older parents and carers, this has major implications for the future, with the likelihood that formal services will eventually take over the care role. It is suggested that the presence of a plan for the future, formulated at a time of stability and in advance of any crisis, may lead to improved outcomes for this next phase of life. However, regardless of several policy initiatives to encourage active planning for the future, the take-up rate remains poor. This review of the literature seeks to offer an explanation for this through identifying the barriers to future planning as experienced by people with a learning disability and their older carers. The evidence suggests that there are ten key barriers to engagement in future planning. Consideration is given to each of these in turn, and a common thread is identified, that of the quality of the relationships between the families and the professionals who they come into contact with. Gaps in the research are considered, and the need for further work identified to reflect the views of black and minority ethnic families and so-called hidden families who are not known to statutory services. Also highlighted is the lack of participation in the research of those people with more severe disabilities who use alternative methods of communication. [ABSTRACT FROM AUTHOR]

Accessible Summary: This paper shows what people with learning disabilities can get out of enjoying books and reading even when they cannot read words easily.The writers think about how people with learning disabilities can be helped to enjoy books. They say that this can happen through reading with other people, enjoying lots of activities about books and making books part of their daily routine.The writers also think about the way that books and stories help us to learn about the world and the people in it.The writers are annoyed about the way that enjoyment of books by people with learning disabilities has been ignored by people.This matters to people with learning difficulties because enjoying books, even when we cannot read words easily, can give us good feelings and help us to learn and develop. This paper presents the findings of an original research project commissioned by BookTrust, a respected UK charity that gifts books to children, young people (CYP) and their families. It explored the impact and modus of pleasurable engagement with books among CYP with severe and profound learning disabilities and applied a critical, phenomenological stance on what it means to read through drawing on "inclusive literacy" as a conceptual framework. Data were collected from four local areas in England and included 43 CYP aged 4–14. In keeping with a phenomenological stance, it employed interpretivist methods involving 13 deep‐level interviews with families to include observations and structured play; 13 observations of CYP sharing books with others in home, play or school settings, and interviews with 27 practitioners working in a range of organisations (e.g., Portage service and advisory teams). Findings were that books had a positive impact on well‐being, social inclusion and development. CYP were engaged in enjoying the content of books through personalisation, sensory stimulation, social stimulation and repetition. This affirmed the theoretical and practical approaches espoused by "inclusive literacy" but made a critical and original contribution to our understanding of the special place that books occupy as ordinary artefacts of literary citizenship among this cohort. The benefits of volitional reading among CYP who do not have learning disabilities are well known, but the authors urge publishers and policymakers to recognise CYP with severe and profound learning disabilities as equally important, active consumers of books who have much to gain from reading for pleasure. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper is about a partnership between a self-advocate with learning disabilities and a university student. • We think it is important for people with learning disabilities to be involved in research as partners with university researchers. • We think it is important for people with learning disabilities to have the opportunity to tell their story. We believe it can help others; both people with learning disabilities, carers and researchers. • We think that people with learning disabilities are not taken seriously as researchers by university researchers. The aim of this paper is to reflect on research collaboration between a research participant with learning disability and a nondisabled doctoral student. In the paper we explore the inclusiveness of our research partnership and how collaborative life histories can be empowering both for participants and researchers. We suggest that it is possible to make any kind of research inclusive, although doctoral projects can perhaps not be fully inclusive because of academic requirements. We argue that people with learning disabilities should have the opportunity to be involved in research and that collaborative writing between nondisabled researchers and people with learning disabilities is no less valuable than other disability research and should be taken seriously by policy makers and academia. A second aim of the paper is to reflect on our position, as a nondisabled researcher and a researcher with learning disabilities, in the field of disability studies. We state that as researchers we have little power in the field of disability studies because researchers with learning disabilities are not taken seriously and nondisabled researchers tend to be met with scepticism. [ABSTRACT FROM AUTHOR]

Accessible summary Self-Directed Support is the latest system of social care giving vulnerable people in the UK a budget instead of a service provided by local authorities., There is a lack of evidence to demonstrate how people with intellectual disabilities access information and make choices about Self- Directed Support., Self- Directed Support is not yet available to all individuals with an intellectual disability., There is a need for further education and training for professionals and support staff to ensure that people who have intellectual disabilities are assisted to make informed choices about care provision., Summary A systematic literature review was conducted between September 2010 and April 2011 and published earlier in this journal, paper 1. The findings indicated that few studies of Self- Directed Support focused specifically on people with intellectual disabilities. The range of individuals' ability and distinction between adults with or without legal capacity have not been addressed. It is clear that Self- Directed Support is not, as yet, a viable option for all individuals with an intellectual disability. However, some who have accessed it reported an improvement in their quality of life. For Self- Directed Support to succeed for people with a wide range of intellectual disabilities, the level of awareness of its existence, and the potential barriers in relation to uptake, must be identified and addressed. This paper suggests possible strategies to maximise access to Self- Directed Support and identifies areas in which further research is required. [ABSTRACT FROM AUTHOR]

Accessible summary Self Directed Support is the latest system of social care providing vulnerable people in the United Kingdom with a budget instead of direct service provision., There is a lack of evidence underpinning the strategy of Self Directed Support., There is a need to learn more about how well the policies are working., Barriers need to be identified and overcome to ensure that people who are eligible can access Self Directed Support., Summary A systematic literature review was undertaken to determine the evidence base underpinning the strategy of Self Directed Support and whether evidence demonstrates that this policy is accessible to everyone with a learning disability. It also sought to identify whether there were any barriers to Self Directed Support for people with severe or profound learning disabilities and, if so, how these barriers could be overcome. Four mixed-method research papers, two quantitative studies, seven qualitative studies and four literature reviews were identified. The findings indicated that very few studies pertain specifically to people with learning disabilities, and little account has been taken of their range of ability or the distinction between adults with legal capacity and those without. It is evident from the literature that Self Directed Support is not, as yet, attainable for everyone with a learning disability but those able to access it have reported an improvement in their quality of life. There is a need for further research to determine the extent of awareness and understanding of the policy of Self Directed Support, and the implications it will have on the future care of people with a wide range of learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary: We are a group of 17 inclusive researchers. Some have a disability, some work in the university, and some are support workers.In this paper, we interviewed 11 people who wrote inclusive research to find out what they thought.We asked how do you write inclusive research?Then, we asked two more questions: how were people with intellectual disabilities included in writing inclusive research? And, what got in the way of people with intellectual disabilities being included in writing inclusive research?We found that inclusive research is a process of learning together: listening and including people's experience of disability.The main finding was that writing and publishing inclusively in peer‐reviewed literature was hard.Few researchers knew how to write or publish with people with intellectual disabilities.It will need more research to figure out how best to include people with intellectual disabilities in writing up studies. Background: This study aimed to explore how researchers with intellectual disabilities were involved in writing up and publishing inclusive research, particularly in peer‐reviewed journals. It was conducted over a year by members of the Centre for Disability Studies Inclusive Research Network representing 17 co‐researchers (with intellectual disabilities, university and support agency staff) doing research together. Materials and Methods: The research focused on facilitators/barriers to inclusive research. The main research question was as follows: "how do you write inclusive research?" As in, what did authors who had written inclusive research articles find helped people with intellectual disabilities get involved in the publication process? Also, what, if anything, got in the way of people with intellectual disabilities being involved? The group interviewed 11 university scholars with varied experience publishing collaboratively with people with intellectual disabilities (one self‐identifying as disabled). Content analysis identified common themes. Results: For the participants, inclusive research meant listening to and supporting people with the lived experience of disability. Researchers encountered numerous challenges in publishing, linked to what they perceived as "complex" and "unfair" universities, systems which governed funding. Instead of peer‐reviewed articles, inclusive teams created many other outputs and focused on outcomes. Conclusions: The main finding was that writing and publishing inclusive peer‐reviewed literature was prohibitive. It would appear that those working in inclusive research are only at the start of devising ways to include their co‐researchers with intellectual disabilities; it will need more research to articulate common strategies to include teams of people with intellectual disabilities in joint publications. [ABSTRACT FROM AUTHOR]

Accessible summary • Using drama in research means people who communicate in different ways can take part in research. Drama was used to find out what students do in school PE and their free-time. • Students from a special school agreed to take part in the drama session. Two drama workers ran the session. • A video recorder was used to help remember what happened during the drama session. • A report was written about the drama session and presentations made to people working in schools, social services and sport. In this paper I continue to develop the growing interest in working with research approaches that enable people experiencing severe learning disabilities to participate in research activities. In particular, I discuss a research project that adopted a number of data generation strategies, including a drama pilot project. In this paper I focus on the drama pilot project by reviewing the processes involved in working with drama as a research approach. In reflecting upon the use of drama I explore a number of issues concerning the process of transcription and the competing discourses of research and engaging in a creative performance. Although I identify a number of challenges encountered in this drama pilot I would argue that this technique remains a worthwhile and relevant strategy for engaging with many students, including those experiencing severe learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary Choice is important to people with learning disabilities., The people who make laws want people with learning disabilities to make more choices., People in different countries make their own laws., Some people make decisions themselves or get help to make decisions., Sometimes other people make decisions for people with learning disabilities., It is important that the laws people make support people with learning disabilities to do what they want to do., Summary This paper reflects the impact of policy and legislation in the context of how adults with learning disabilities make choices. Following an overview of policies which have improved choice for people with learning disability in the United Kingdom, this paper reviews 'choice' in current Irish policy and legislation. This paper, while making comparisons with capacity legislation in the United Kingdom, presents a discussion on the perceived impact of the Assisted Decision-Making (Capacity) Bill (2013) based on submissions from the Citizens Information Board (2013a), Mental Health Reform (2014), and Quinn (2013). Further choice making challenges such as direct payments and information sharing which confront adults with learning disabilities are highlighted and overall conclusions are drawn. [ABSTRACT FROM AUTHOR]

Accessible summary: Persons with learning disability who live in Malta, especially women, feel they do not have as many opportunities to make friends and form relationships as other persons who do not have a learning disability.Persons with learning disability feel lonely but wish they had the opportunity to do the things non‐disabled people do, such as have relationships, get married, live on their own and have children.At times, their parents and people who work with them do not help them with this.It is important that persons with learning disability from a young age are supported and empowered so that they can exercise their sexual rights. Background: This paper explores the sexuality of young persons with learning disability in Malta with respect to their opportunities and the constraints they experience. Materials and Methods: Interpretative phenomenological analysis was used to decode qualitative data collected from persons with learning disability. Results: Findings reveal a context of disabling social attitudes, stereotypical gender imagery and exclusionary social practices. In addition, youth with learning disability experience a lack of community support and social networking, thus calling for platforms and spheres where they can form and maintain friendships and relationships. Conclusions: It is concluded that Malta lacks the fundamental social acceptance that persons with learning disability are sexual beings, with the right to express their sexuality and to form relationships. Overcoming such cultural hurdles will empower persons with learning disability to establish and express their sexual identities. [ABSTRACT FROM AUTHOR]

The history of self‐advocacy in England has not been recorded, other than the stories of individuals and of some individual groups. We, therefore, decided to interview some leaders of the self‐advocacy movement and some people who were allies and supporters. Three researchers, two self‐advocates and one academic, interviewed 11 self‐advocate leaders on Zoom as the COVID lockdowns made it impossible to meet. Four allies and supporters wrote their answers to our questions, and we interviewed three others. We used the information people gave us to start writing the story of self‐advocacy from 1972 to 2002. There is a lot more to do. Accessible summary: The first speaking up event in England was in 1972.This means self‐advocacy is 50 years old in 2022.This decided us to find some people who were leaders of self‐advocacy when it started.We interviewed 11 self‐advocates on zoom.We interviewed three allies and supporters and four people sent written answers to our questions.We used the information people gave us to write this story of self‐advocacy from 1972 to 2002.There is a lot more to do if we are to have a really good record of how self‐advocacy grew and developed in England, and lots more people to talk to. [ABSTRACT FROM AUTHOR]

Accessible summary: Sometimes people with a learning disability find things hard which changes how they think, feel and what they do. The psychology team supports people with feelings, thoughts, relationships and behaviours. Narrative therapy is a way of helping people to understand things in a different way. Narrative therapy assumes that people have many skills and are good at lots of things which can help them to reduce the impact of what they find hard. This is the story of how I helped a woman with a learning disability using narrative therapy. It is important to share this story so that narrative therapy can be used to help other people. Abstract: Background: The main assumption of narrative therapy is that people are the “experts” on their own lives. When working with people with a learning disability, it can often be the case that the client’s voice is not the primary voice. This is due to the fact that others “hold” the story for the client. When the story is, therefore, told, it is done so from the perspective of that person. Narrative therapy has been found to provide an opportunity to access the perspective and experience of those whose voice may otherwise be excluded. Materials and Methods: This paper details a case study which explains how a woman with a mild learning disability was helped to confront overwhelming anxiety which she referred to as “the gremlin.” The client described how “the gremlin” was having an influence over her ability to manage in stressful situations and cope with change. A narrative approach was utilised which focussed on reducing the influence of “the gremlin.” Results: The client’s evaluation of the therapy using self‐report and scaling measures showed that it had been a success. The client identified times where stories other than the dominant were lived and she became the primary author of preferred stories of her life, reducing the influence of “the gremlin.” Conclusions: This study described how narrative therapy helped a woman with a learning disability and provides an example for use with other clients in the future. [ABSTRACT FROM AUTHOR]

Accessible summary:: “Learning disability” replaced the outdated term, “mentally handicapped” in the UK over 20 years ago. Recently, some services and professionals have been using the term “intellectual disability” instead. In America, “intellectual disability” has been chosen to replace the old term, “mental retardation.” There has been lots of explanation why this has happened. In the UK, there has not been much explanation. It is important to know what terms mean and why they are being used because their use affects the lives of people with learning disabilities. This article looks at what different people in the UK think about term “intellectual disability.” Abstract: 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. [ABSTRACT FROM AUTHOR]

Accessible summary When people report being sexually assaulted they can be examined by a specially trained doctor to see how the assault might have affected them. They may also ask for help from a counsellor or other specially trained support workers. These staff might belong to a sexual assault referral centre ( SARC)., This study reports findings from work that staff from St Mary's SARC in Manchester did so that they could improve the services they offer to people with learning disabilities who have been sexually assaulted., A staff survey showed that staff thought they might not always recognise if a person had learning disabilities or another learning difficulty like dyslexia. We wonder if knowing the difference is as important as knowing how to support people well. Looking at patient notes showed that patients with learning disabilities received less follow-up care than patients without learning disabilities., This study describes the first step that the SARC team took to improve their service. Improvements have been made based on these first findings, including some of those recommended by staff in their surveys. These will be reported in another paper to see if they have made a difference to people with learning disabilities., Abstract Background People with learning disabilities are more likely to experience sexual abuse and less likely to access support than the general population, this is due to a range of variables at the individual, societal and service-delivery level. This study presents a service evaluation of St Mary's Sexual Assault Referral Centre, Manchester to explore its ability to provide meaningful support to people with learning disabilities and to identify ways to improve its responses. Materials and Methods The service evaluation had two components: (i) A staff survey to elicit self-perception of the knowledge and skills required to meaningfully support people with learning disabilities who attended the centre following an allegation of rape or sexual assault (ii) An audit of patient notes to compare service delivered to patients with a learning disability to those without. Results Forty-two members of staff (over 75% response rate) completed the survey which found a lack of differentiation between learning disabilities and other types of neurodiversity. The majority of responders reported having enough knowledge about learning disabilities to do their job and feeling confident in their abilities. Nonetheless, all the staff reported that they would like more learning disability training. An audit of the patients' notes found people with learning disabilities accessed fewer follow-up care services than people without learning disabilities. Conclusions The results identify areas for staff training to improve meaningful support for people with learning disabilities alongside a note of caution against a focus on labelling. By introducing more accessible support a diverse group of people can benefit. [ABSTRACT FROM AUTHOR]

Accessible summary This paper looks at what has been written about breast screening in women with learning disabilities. Breast screening checks for lumps in your breast that might be cancer. Breast screening is done in a special clinic and machines are used to take a picture (like an X-ray) of the breast. The researchers read all the work they could find that had been written on breast screening in women with learning disabilities. They found that: • Fewer women with learning disabilities have breast cancer than other women; • Women with learning disabilities do not go for breast screening as often as other women; • Doctors and other health professionals need to know women with learning disabilities can get breast cancer. As people with learning disabilities now live longer, they will experience the same age-related illnesses as the general population and cancer is a prime example of this. In women, cancer screening is used to detect early on-set of cancer of the breast and abnormalities of the cervix which might, if left untreated, develop into cancer. Disappointingly, the literature on cancer screening in women with learning disabilities consistently reports that cancer screening up-take is lower in this population compared to women in the general population. This paper presents a review of 35 articles relating to breast cancer, breast cancer screening and breast awareness in women with learning disabilities. Relevant papers and book chapters were located by searching a number of databases and undertaking hand searches, and includes publications from 1997 to 2007. The studies located ranged from localised health initiatives to improve breast awareness and breast screening up-take, to population studies. Although more is being published on cancer in people with learning disabilities there is still a paucity of literature on breast screening amongst women with learning disabilities. This review therefore, up-dates current knowledge on breast cancer incidence and breast awareness whilst critically reviewing studies specifically focusing on breast screening in women with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary •The number of people training to be learning disability nurses has gone down over the last few years. •This study looks at why people decide to train as learning disability nurses and the reasons for carrying on with their training or to leave the course. •We found that students who decided to leave their training had been influenced by the negative views of their tutors and the staff in their practice placements. •This study matters to people with learning disabilities as it could mean that there will be fewer trained nurses to work with them in the future. Recruitment onto pre-registration learning disability nursing courses has decreased considerably over the last decade. This paper reports the findings of the first stage of a longitudinal study that investigated the factors that influence students to train as learning disability nurses, and those that influence their decision to continue or leave the course. Semi-structured interviews were conducted with one cohort of learning disability student nurses ( n = 19) within the first 6 months of their starting the Common Foundation Programme. A number of unexpected issues emerged. These revolved around the negativity displayed by some practitioners and tutors about learning disability nursing and how this in turn was impacting on the decision made by four of the students in particular to transfer to other branches of nursing. The paper concludes with some recommendations for Schools of Nursing to ensure that the speciality is seen as an attractive and worthwhile career option. [ABSTRACT FROM AUTHOR]

Accessible summary • Young people with learning disabilities are more likely to be abused than other young people. Some young people who have been abused go on to sexually abuse other people. • Young people with sexual behavior problems do not get help until after they have sexually abused someone else and the police are involved. • If a young person is convicted of a sex crime it has a very bad effect on their future. • There needs to be more help for young people with learning disabilities so that they do not sexually abuse others. This paper outlines the key findings from a recent study of statutory service responses to young people with learning disabilities who show sexually inappropriate or abusive behaviours, with a particular focus on the involvement of criminal justice agencies. The study found that although inappropriate sexual behaviours were commonplace in special schools, and that serious acts of abuse including rape had sometimes occurred, education, welfare and criminal justice agencies struggled to work together effectively. In particular, staff often had difficulty in determining the point at which a sexually inappropriate behaviour warranted intervention. This problem was frequently compounded by a lack of appropriate therapeutic services. In many cases this meant that no intervention was made until the young person committed a sexual offence and the victim reported this to the police. As a consequence, young people with learning disabilities are being registered as sex offenders. The paper concludes by addressing some of the policy and practice implications of the study’s findings, particularly those which relate to criminal justice. [ABSTRACT FROM AUTHOR]

In this paper the small body of research which looks at how people labelled as having learning disabilities view this social identity is considered. The author argues that this research has implications for our assumptions about self-advocacy groups for people with learning disabilities. [ABSTRACT FROM AUTHOR]

This article reports the interim findings of the ‘Strategies for Change’ research project, which has focused on the need for effective strategic planning in order to make a reality of the 2001 White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century. It draws attention in particular to the roles that both commissioners of learning disability services and the new Learning Disability Partnership Boards must play in developing and implementing local plans. It is argued that effective strategic planning at national and local levels is required in order to create innovative, individualized services for people with learning disabilities, which can promote the Valuing People agenda of rights, independence, choice and inclusion. [ABSTRACT FROM AUTHOR]

Accessible summary Dialectical behaviour therapy is a 'talking' therapy developed by Marsha Linehan. It helps people who are living in the community and also living in hospitals and people who may have problems managing their emotions., In recent years, dialectical behaviour therapy has been used to help people with learning disabilities cope with feelings of anxiety, trauma-related disorders and mood disorders, but there are not many research papers showing how it is used in forensic learning disability services., This research tells the story of seven women with learning disabilities who took part in dialectical behaviour therapy whilst living in a forensic service., Their story and experiences are important in research literature and will help other services to think about what is needed when they introduce a new type of therapy such as dialectical behaviour therapy, . Abstract Background This research aimed to capture the experiences of women with learning disabilities living in secure services who undertook dialectical behaviour therapy (DBT); they were the first people to do this in the trust. It is hoped their experiences may guide and inform other services undertaking the same process. Materials and Methods Interpretative phenomenological analysis (IPA) was used to provide a flexible framework to make sense of the way the women interpreted their experiences. Results and Discussion The analysis identified three main themes: How you do DBT, What we think about DBT, Using DBT. The qualitative approach adds a valuable contribution to the wider literature, highlighting the importance of capturing the women's voices. Conclusion As most published literature regarding the effectiveness of DBT is not written from first hand service user experiences, it is hoped this research offers a unique insight into these women's experience. [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]

This paper is about older people with learning disabilities who live in the country in Australia. We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder. These people said that they were well supported by the local community and particularly their doctors. However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like. Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia. This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas. It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation. An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs. [ABSTRACT FROM AUTHOR]

Accessible summary This paper looks at the friendships of Ben, (not his real name), a 10-year-old boy with autism and learning disabilities, in his mainstream school., Ben was able to name his friends and showed that he understood some important things about friendship., Adults in the school said that Ben was very keen to have friends and that some of his friendships had lasted for over a year., The study focused on the importance of listening to children with autism and learning disabilities and on the need to highlight their social strengths., Summary Whilst progress has been made in understanding the friendships of children with autism, research on the friendships of children with additional learning disabilities remains extremely limited. In this research, a qualitative case study approach provided a rich description of the friendship concepts and capabilities of Ben, a 10-year-old boy with autism and severe learning disabilities within the context of a mainstream primary classroom in the United Kingdom. An innovative activity-based strategy was used to gain Ben's own perspectives in relation to friendship. Findings revealed that Ben exhibited a strong desire to have friends, believed himself to have some, demonstrated some understanding in respect of degrees of friendship and displayed a commitment to friendships over relatively long periods of time. Methodological, developmental and capacity perspectives informed the discussion, with a case being made both for a greater focus on the friendship capabilities of children with autism and learning disabilities and their more direct inclusion in the research process. [ABSTRACT FROM AUTHOR]

Accessible Summary: A literature review was undertaken to explore reasons why relatives, staff and healthcare professionals choose to tell or not tell people with learning disabilities bad news.People with learning disabilities' views on being told bad news are discussed.The author looks at who should tell people with learning disabilities bad news.The author found that relatives, staff and healthcare professionals have different reasons for telling and not telling people with learning disabilities bad news.The author suggests talking about bad news is important. Background: This article provides a literature review exploring reasons for disclosure and nondisclosure of bad news to people with learning disabilities. Connections are made to current policy, law and ethics to highlight the complexity of this issue. Methods: This review examines literature on disclosing bad news to people with learning disabilities from 2007 to 2017. A total of 13 articles were found with nine articles having a direct focus on breaking bad news. Results: The main themes identified from this review are maintaining rights and dignity, upholding duty of care, underestimating resilience, protection from harm and capacity to understand. Exploration of who should disclose is examined in reference to relatives, staff and healthcare professionals. Conclusions: Trends surrounding disclosure of diagnosis and prognosis to people with learning disabilities have not kept pace with the trend to disclose with the general population. People with learning disabilities are frequently not informed of their terminal diagnosis and often die without this knowledge. Equally, bad news concerning a friend or relative may also be withheld. [ABSTRACT FROM AUTHOR]

Research has indicated that challenging behaviour leads to placement breakdown and poor quality of life for people with learning disabilities. This paper provides a case study example of successful intervention with an individual with learning disabilities and challenging behaviour, using a Multi-element model of support, including functional assessment, behaviour support plans and use of a monitoring system (Periodic Service Review). Outcomes of this intervention are presented and their possible implications considered. [ABSTRACT FROM AUTHOR]

Accessible summary • Staff often influence people with learning disabilities when they talk to them and when they answer them. • For example, they might talk too quickly or they might use sentences that are too difficult. They might also miss what a person with learning disabilities is trying to say. • We think residential services should make video recordings of staff and people with learning disabilities talking to each other so they can see how this happens. • Videos could make staff better at offering choices and understanding what people think about things. • Making video recordings needs to be done carefully; staff and people with learning disabilities should be able to say they don’t want to be recorded. In this paper we argue that video recording of actual practice should be a central tool for organisations attempting to improve services for people with learning disabilities. Since an important site for the disempowerment of service-users is in everyday, mundane interactions with service staff, an approach to staff development is needed which allows workers to see what they actually do and how they might do it differently. Research illustrates that retrospective self-reports of what people habitually do cannot capture much of the important details of communicative interaction. We argue that video recordings are the best way of doing this, and provide examples from our own work of the type of benefits that can arise. Finally, we set out a set of guidelines for the use of video recording in reflective practice in services. [ABSTRACT FROM AUTHOR]

Easy summary • Sometimes people with learning disabilities get into trouble with the law. • They may be sent to prison. Or the judge may say they must do some special work in the community instead as punishment. • Sometimes people with learning disabilities who break the law do not go to court. They may be placed in a special hospital or unit instead. • We need more information about people with learning disabilities who break the law, so that they get the treatment they need. • Police, magistrates, judges, lawyers, probation officers and prison staff need better training. Then they will know how to help people with learning disabilities who get into trouble with the law. • Prison is not a very good place for people with learning disabilities. We need services which can help them near where they live, so they can stay out of trouble in the future. Whilst there has been an increase in research and clinical attention relating to the accused person or offender with a learning disability in the criminal justice system, some major areas require further inter-agency effort. These areas include: better identification of this group, increased education and training for criminal justice personnel, more opportunities for diversion from the criminal justice system, and better services in the community and secure units or prisons, to meet their needs. This paper reviews the current situation and literature in each of these important areas. It also refers to systems for improving recognition of the individual with a learning disability in the criminal justice system, better coordination between agencies and sharing of information and more education for police and other criminal justice agencies. The advantages and disadvantages of diversionary options are reviewed, along with other areas of need which must be addressed, including the individual’s physical and mental health, therapeutic interventions, specialist programmes, education and welfare services. [ABSTRACT FROM AUTHOR]

This paper describes how a group of five older adults with Down's syndrome decided what they wanted from their doctor. The group worked out what they meant by health. The group also looked at what it was OK for a doctor to ask or do. They made lists of these. The group decided that being healthy means being able to do things. Feelings, of being scared for example, are an important part of being ill. Older adults with Down's syndrome are able to say what they want from their doctor. They can be helped to do this by working together in a small group. [ABSTRACT FROM AUTHOR]

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

Cognitive-behaviour therapy (CBT) is increasingly being used with people with learning disabilities. One of the challenges in working this way is effectively sharing and understanding the formulation of the client's problem. One could argue that only with a shared understanding can there be collaboration between the therapist and the client. By utilizing current theory around CBT for psychosis and CBT for people with learning disabilities a diagram that was understandable to the client was developed to illustrate each formulation. The aim of the paper is to describe a method for engaging in a collaborative approach with three men with psychosis utilizing current thinking in CBT for people with learning disabilities and CBT for psychosis. [ABSTRACT FROM AUTHOR]

Although predisposing and facilitating factors for delirium are common in learning disabled patients, little is known about the occurrence of delirium in these patients. This paper presents three case reports and results of a manual and computer (Medline, Embase Psychiatry) search. In the literature only two case reports of delirium in learning disabled patients were found. These data were added to those of our three cases. The respective age of the patients was 16, 17, 51, 55 and 78 years. Delirium was associated with eye surgery, anticholinergic overdose, urinary infection, Alzheimer's disease and pulmonary infection, respectively. All patients had predisposing factors for delirium. The literature on delirium in learning disability is scarce. A reason for this may be that the diagnosis is often missed. Delirium is very distressing and raises morbidity and mortality. However, it is treatable, so more attention should be given to diagnosis and treatment, especially in these vulnerable patients. A practice guideline for the assessment and treatment of delirium in learning disability is given. [ABSTRACT FROM AUTHOR]

Learning disability nursing has had an interesting history over recent decades. Despite many predictions of it being replaced it has survived to engage in a variety of roles in contemporary learning disability services. This paper acknowledges the anomalous position of the profession and discusses its current position within nursing, and within learning disability services. [ABSTRACT FROM AUTHOR]

In this paper, the role of the nondisabled researcher who supports inclusive research in learning disability is explored. The author argues for more transparency about the role in order to highlight the challenges of working inclusively on research projects, the real contribution of people with learning difficulties to research, and the training/support implications of working inclusively. [ABSTRACT FROM AUTHOR]

This paper outlines the findings from interviews exploring the perceptions of people with learning difficulties in relation to work and employment support. We look at what people told us about their experiences in seeking employment, getting a job, being in work and about the support they received. We also make inferences from the data about the nature and extent of social inclusion associated with being in work. The varying experiences of our sample illustrate the scope of the task in hand to achieve the vision of social inclusion expressed in Valuing People. [ABSTRACT FROM AUTHOR]

There has been considerable debate regarding whether people with a learning disability should be encouraged to develop friendships with disabled or nandisabled people and what influence this might have on their sense of identity. It is also increasingly recognized that the Personal Home Page is a useful tool for making contact with potential friends and for managing identity. This paper explores the extent to which people with Dawn's syndrome are using Personal Home Pages to make and maintain friendships and, thus, say something about the self-image they wish to portray. The Personal Home Pages of five Internet Service Providers were sampled and 16 Personal Home Pages of adults with Dawn's syndrome were found that referred in some way to friendships. A thematic analysis of these pages indicated that the authors could be attempting to present an image of themselves as someone who is capable of having friends. Analysis of the guest-book messages also revealed that the readers of the Home Pages were responding to these attempts at initiating a relationship. Further work needs to be done to develop the sampling methodology in order to enable further exploration of what influences the publication of these Home Pages. [ABSTRACT FROM AUTHOR]

Abstract The present paper outlines the impact of group training on the emotion recognition of six individuals with a moderate learning disability. The accuracy of identifying emotions depicted by line drawings and photographs with and without an emotional context was examined before and after group training. The results indicated that there was a significant overall increase in accuracy in identifying emotions following group training. In addition, a significant increase was found in the ability to correctly label emotions depicted by line drawings typically used in symbol-based communication systems. The implications of the results are discussed. [ABSTRACT FROM AUTHOR]

Background: Previous research indicated a high prevalence of disordered sleep among adults with learning disabilities, however issues with design impacted findings. The current systematic review aims to: (a) present how disordered sleep and sleep disorders amongst adults with learning disabilities are described in the literature, and (b) report on the prevalence of disordered sleep and sleep disorders among adults with learning disabilities. Methods: Five databases (EMBASE, MEDLINE, PsycARTICLES, PsycINFO and PubMed) were searched for articles published from 1900 to October 2021 that examined the prevalence of disordered sleep and/or sleep disorders in adults aged 18 or older with learning disabilities. The Joanna Briggs Institute critical appraisal checklist for prevalence studies was used to assess study quality and prevalence is described and reported as ranges. The study was registered on PROSPERO (ID: CRD42019134550). Findings: A total of 27 studies were selected. Twenty studies (n = 8043 participants) examined the prevalence of disordered sleep and identified prevalence ranging from 6.1% to 74.2% across a range of sleep parameters. Twelve studies examined sleep‐related breathing disorders (n = 2558 participants) and identified prevalence which ranged from 0.5% to 100%. There was notable heterogeneity between studies in terms of quality, definition of disordered sleep, measurement of sleep, and study design. Conclusion: There was a variable prevalence of disordered sleep among people living with learning disabilities. There were problems in meaningfully synthesising results due to heterogeneity in measurement, diagnosis, study design and study quality. Based on these limitations, we suggest that future studies should seek to utilise objective, replicable and consistent measures of sleep in this population and control for physical health factors which could influence prevalence such as epilepsy and iatrogenic effects. Accessible summary: Good studies have found that more than 1 in 13 people with learning disabilities find it hard to sleep, for example find it difficult to fall asleep at night.Over 1 in 3 people with certain types of learning disability have breathing difficulties during sleep. We need to find out how much this is affecting their life.Better ways to measure sleep should be used when doing future research and helping people who find it hard to sleep. For example, using activity watches. [ABSTRACT FROM AUTHOR]

Summary This paper arose as a consequence of joint working between therapists of two different disciplines – clinical psychology and speech and language therapy – on a case involving a young woman who required an assessment of her sexual knowledge and attitudes. It explains how the recent development of a method of communication for those with a severe communication disorder (Talking Mats) has meant that it has become possible to work with those who have a severe learning disability and poor communication. In the past, clients with both severe learning disability with poor communication may have been excluded from traditional and cognitive therapy, which was dependent to a large extent on verbal communication. This paper, therefore, is of value in extending the range of methods for assessment and intervention that may be used by a range of disciplines with people showing severe learning disabilities and severe communication disorder. [ABSTRACT FROM AUTHOR]