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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]

Accessible summary: The COVID‐19 pandemic has forced everyone to live at a social distance from other people. This has changed the way people live and are included socially.This paper focuses on the unexpected ways schools have altered and deepened social inclusion for children with learning disabilities during the COVID‐19 pandemic.We interviewed six people: two people who work for a Local Authority, one Headteacher of a special school, one Special Educational Needs and Disability Consultant, one young person with a learning disability and her mother.The findings and conclusions show the "new normal" caused by COVID‐19 can help to deepen social inclusion for children with learning disabilities. For example, it can help children communicate in alternative ways with their teachers and friends. It can help families to understand more about their son/daughter's educational abilities; this means they can advocate better for them. It can help professionals to meet the needs of children with learning disabilities more quickly.We do not enjoy living at a social distance from everyone else, but we do want to make sure that lessons can be learnt from this moment in time. Background: To slow the spread of COVID‐19, on 20 March 2020, nurseries, schools and colleges across England were closed to all learners, apart from those who were children of key workers or were considered "vulnerable." As young people with learning disabilities, families, professionals and schools become acquainted with the Erfahrung of the new horizon brought about by COVID‐19, the negativity of altered social inclusion is becoming the "new normal." Capturing this transitory moment in time, this paper reflexively analyses the curiously productive variables of altered ecological pathways to social inclusion for people with learning disabilities. Methods: Taking a hermeneutic stance, this paper draws on Gadamer's construction of the nature of new experiences. Focussed on the experience of social inclusion during the COVID‐19 pandemic, semi‐structured interviews were conducted with six key stakeholders. As the phenomenon in question was new, an inductive approach to thematic analysis was applied. Findings: The critical tenet of this paper is that the Erfahrung of COVID‐19 has created the conditions for a "new normal" which have afforded children with learning disabilities altered opportunities for social inclusion, whether that be through increased power/agency for them and their families and/or new modes of connectedness leading to enhanced relationships. Conclusion: Whilst the impact of COVID‐19 has been a negative one for many aspects of society, application of Simplican and Gadamer's theories on social inclusion and the nature of new experiences has permitted the surfacing of new possibilities for the social inclusion of children with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary: Some parents with learning difficulties are supported by child welfare in raising their child. Many mothers and fathers with learning difficulties have their child removed.This paper is the first published research about being a mother and being father with learning difficulties in Austria. There is not enough good quality support for parents with learning difficulties in Austria.We interviewed six mothers and five fathers with learning difficulties and asked them about who supports them and how. We also asked them what it means to them to be a mother or a father.Most parents said that they get the wrong support and are being checked on by child welfare. One mother said that she gets very helpful support.Being a mother with learning difficulties is different to being a father with learning difficulties. Mothers who have lived with their child feel that they are the main caregivers, but fathers sometimes feel excluded from their child's life. Background: Many parents with learning difficulties face high rates of child welfare intervention and child removal. In contrast to other high‐income countries, there has not been any published research on the lives of mothers and fathers with learning difficulties from an Austrian perspective. After presenting an insight into the international literature and the Austrian context, original empirical findings relevant to providing professional support for parents with learning difficulties are introduced. Method: As part of a larger qualitative study, ten individual parents with learning difficulties (six mothers and four fathers) were interviewed to gain insight into their experience of motherhood and fatherhood. During the interviews, participants were asked to visualise their social networks through network maps that were then included into analyses. The current paper primarily engages with parents' experience of professional practice based on a hermeneutic analysis of latent and manifest meanings. Findings: The study results reinforce the relevance of social networks, including (a lack of) professional parenting support, and gendered parental self‐understandings in relation to barriers for parents with learning difficulties in Austria. Parents often experienced surveillance from child welfare professionals and referred to "being checked on" as well as receiving "the wrong support". Only one study participant experienced the (flexible and self‐determined) support provided to her family as helpful. Mothers and fathers with learning difficulties face, at times, quite different challenges in the parenting role. The findings highlight a maternal self‐understanding as being primarily responsible for their child, while fathers often felt excluded from their child's life. Conclusions: Support services need to acknowledge the relevance of gendered parenting roles and intersections of multidimensional disadvantages. The parenting support currently available to mothers and fathers with learning difficulties (if available at all) needs radical improvement and nationwide support structures need to be installed in collaboration with families. [ABSTRACT FROM AUTHOR]

Background: The terms idiot, imbecile, and moron are generally associated with notions of intelligence, having served both scientific and mundane roles across cultural‐historical contexts and in many different countries. This study seeks to explore the degree to which the use of these terms is an everyday part of our lives and to map out the meanings being attached to them. Methods: This study reports on their current usage in two arenas: within 29 academic papers published from 2016 to 2021, reporting on interviews or observations undertaken in educational contexts; and within 134 articles from four English language newspapers published in the first three months of 2021. Using a discursive and thematic approach to the analysis, it considers the degree to which these may be considered slur or taboo words, and whether they can be linked to discriminatory practices frequently experienced by groups with whom they are associated. Findings: It is evident is that people use the terms differently in different arenas. However, they see them as negative, associate them with stereotypical characteristics, are happy to apply them to others, but want to avoid having them applied to themselves. Conclusion: This study shows how widely these words are used across social contexts, and suggests that as with other historical terms for marginalized populations we need to regard them as slurs and treat them as taboo. Accessible summary: The study looked at the use of the words Idiot, Moron and Imbecile in 29 academic papers and 134 Newspaper articles.The terms were used by a many different people involved in education and in the news media.These three words are used to belittle others and people do not wish to have them used about themselves.Idiot, imbecile and moron are recognised as disapproving words, but they also act as slurs and so perhaps they ought to be forbidden. [ABSTRACT FROM AUTHOR]

Background: Policy, research, and people's own experience in the UK consistently highlight the central importance of a home of choice for people with learning disabilities. Yet attention is mainly focused on the development of specialist as opposed to generic housing options for people with learning disabilities. Methods: This article reviews the findings from a major research study looking at the rented housing sector for people with learning disabilities. The study comprised of a review of local authority learning disability strategies; a 'national conversation' with key stakeholders; and thirty‐five, qualitative interviews with people with learning disabilities who rent their own homes. Findings: The research found that local learning disability strategies are lacking in information on rented housing for people. A national consultation identified a range of challenges in accessing rented housing for people wishing to do so. Interviews with people with learning disabilities renting their own place confirmed some of these problems but also, crucially, highlighted the success for most who rented their own home. People liked renting and were managing their tenancies well with relatively modest support. Conclusions: The evidence points to the possible benefits of a greater focus on renting for people with learning disabilities. Accessible summary: People with learning disabilities want to live in a home they feel safe and comfortable in.Some—but not very many—people with learning disabilities rent their own homes from social housing organizations or private landlords. There is not much research about this.The research in this paper looked at local authority strategies about housing and people with learning disabilities and then talked to lots of different people about the issues including people with learning disabilities who do rent.Overall, people enjoy renting their own homes and feel happy and settled.But people did not always get enough support to rent their own homes. It could be a complicated process, and information was often not very accessible. [ABSTRACT FROM AUTHOR]

Backgroud: Despite the advancements in the rights of persons with disabilities in Western countries, the motherhood of women with intellectual disabilities remains scarcely visible. The approval of the Convention on the Rights of Persons with Disabilities (2006) and its subsequent ratification by the Spanish Government (2008) recalls the obligation to fulfil the rights of persons with disabilities to found a family (art. 23) and to choose who they want to live with (art. 19). While the importance of this legislation is undeniable, the personal experiences of women with intellectual disabilities still demand effective changes. Methods: This article reports the results of a study entitled Subjectivities and motherhood in women with intellectual disabilities. Reflections in dialogue through an inclusive research project. In this study, we delved into the stories of 13 women, aged between 24 and 72, to learn about their motherhood experiences (before, during and after making the decision of being mothers) and to identify the barriers and supports encountered. Methods for data collection included individual semi‐structured interviews, discussion groups and other narrative and visual resources (images and biograms). Findings: This study explores in depth the obstacles identified by the participating mothers, which have been organised around six themes: (1) information and guidance on sexuality and family planning, (2) assistance of health services, (3) employment and housing situation, (4) child custody, (5) raising children, and (6) informal support. The participants encountered difficulties in all the above fields related to contextual factors. In other words, these barriers do not derive from individual issues centred on their disability, but from factors that often do not depend on mothers with intellectual disabilities, such as deprivation of socio‐educational opportunities. Conclusions: Our results show the nuanced ways in which these mothers were immersed in a social system that questions them as 'good mothers' and violates their rights. As we discussed, the participants' desires and decisions to engage and/or continue with motherhood constitute an exercise of resistance to this system. Accessible summary: People with intellectual disabilities have the right to start a family and to choose who they want to live with.These rights need the support of society and institutions to be effective.This paper deals with interviews and discussion groups with thirteen women with intellectual disabilities.Women with intellectual disabilities shared their experiences of motherhood.The participating women and academic researchers found some of the barriers mothers with intellectual disabilities encountered.Women with intellectual disabilities defend their desire and ability to become mothers. [ABSTRACT FROM AUTHOR]

Background: Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities. Methods: Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set. Findings: The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future. Conclusions: The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child. Accessible summary: This paper is about the stories of three immigrant parents raising children with intellectual disabilities in Norway.Moving to a new country and having a disability can increase the risk of vulnerability.The parents in the study faced challenges accessing services and being isolated.Knowing about their experiences is important for making services better.Transition to adulthood is an important milestone in an individual's life. [ABSTRACT FROM AUTHOR]

Background: Documented inequalities in access to eye care for people with learning disabilities and/or autism are caused by poor uptake of primary eye care services, poor identification of eye problems, lack of signposting and reasonable adjustments of existing services, concerns about costs of care and the low priority historically given to these issues in eye care policy at a regional and national level. In 2019, the charity SeeAbility employed four eye care champions (ECCs) with lived experience of learning disability and/or autism to work in local communities in London and the Northwest of England. They provided peer‐to‐peer support on understanding the need for good eye health and engaged with policy makers, and learning disability, autism and eye care professionals at the local, regional and national levels to influence both the clinical practice of individual practitioners (within existing service/pathway models) and more widely to influence the commissioning of the Easy Eye Care pathway. This study explores the experiences of these ECCs. Methods: The study was conducted in April and May 2023. A case study approach was used to describe the experiences of the ECCs from March 2019 to March 2023. Data from structured interviews with the four ECCs and workload analysis were triangulated to provide a multifaceted understanding of this novel health promotion project. Findings: The ECCs found the role useful and reported that confidence in their practice and impact grew with time but they required ongoing support in the role. A good understanding of the promotional messages was reported. Developing a good network of contacts at an early stage, both people with learning disabilities and healthcare professionals, was key. Relationships with professionals were supportive and positive and a positive emotive response to their lived experience was reported in these interactions. Conclusions: From the perspective of the ECCs, the role is useful and beneficial. The work suggests some key recommendations for future development which include planning to build networks, support in presentation and communications skills and defining key messages and knowledge. Confidence of the ECCs builds with time in the role but also needs support the emotive impact of their lived experiences on audiences is highlighted. There is a need to evaluate how the programme is perceived by those who interact with it and how it changes behaviours which leads to better health outcomes. Accessible Summaries: People with learning disabilities are 10 times more likely than other people to have a problem with their eyes but less likely to get the eye care they need.This paper explains how people with a learning disability and/or autism are employed to tell other people with learning disabilities and/or autism, their supporters, health and care professionals and people who plan services about how important it is to get regular eye care. This job is an 'Eye Care Champion'.We share what the eye care champions did in their role, what worked well and what did not.We discuss how what we have learnt can help other people with learning disabilities and/or autism work as eye care champions and perhaps as champions for other areas of healthcare. [ABSTRACT FROM AUTHOR]

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: ●This paper reports the experiences of primary school students with intellectual disabilities in Yogyakarta, Indonesia, during transitions within various contexts such as from "regular school" to "inclusive school," from special class to regular class and from one year level to the next year level after experiencing year(s) of grade retention.●Students with intellectual disabilities together with their typically developing peers were involved as co‐researchers using drawings and photographs to research their educational and social experiences and report their views.●Educational transitions are rarely discussed or taken into account in the Indonesian context.●The views of the students with intellectual disability in this study are a significant contribution to the development of meaningful inclusive education in the Indonesian context, which at this time continues to represent exclusionary practices or divisions between "regular children" and "inclusion children." Background: Within the emergence of inclusive education in Indonesia, transitions take on various forms impacting the educational and social lives of students. This paper reports the experiences of primary school students with intellectual disabilities during transitions in various contexts. Methods: An initial period of research used arts‐informed methods to support the students to capture their journey in education. While the voice of students about inclusive education was captured through photographs, drawings and conversations, students were supported to undertake a personal research project. Results: Students shared a range of experiences and feelings in the interviews using the photographs and drawings as prompts. Some reported on being expelled from regular school as a result of failure to meet academic standards and transitioning to "inclusive school." These "inclusive schools" moved the students from special to the regular classroom, and back, based on their academic performance. While students valued the opportunity of having more friends in the regular class, they voiced a preference for the special classroom for social interactions. Some students reported their experiences of being retained at year level for lack of progress in a rigid curriculum. Students expressed their conflicting emotions of sadness when retained, of happiness when promoted and despair at the level of learning support provided to "survive" in the higher year level. The students also provided insight into the identity of students with intellectual disabilities as impacted by transition experiences. Conclusions: Transitions, and barriers to transitions, come in varying forms, and students with disabilities contextualise and report them in different ways. [ABSTRACT FROM AUTHOR]

Accessible summary: This paper is about how parents adjust to parenting their child who has a developmental disability.We spoke to parents about their experiences and developed a theory to help explain how parents adjust when their child has a developmental challenge.As well as describing the stress, that parents experience, this theory also captures the fulfilment and sense of purpose that parents experience as they parent their child.This research is important because it helps explain what happens for parents after their child's diagnosis and provides suggestions on how services can improve to help families. This paper describes a study exploring the parental response to the diagnosis of their child's developmental disability. A classic grounded theory methodology was used to analyse data comprising 19 interviews and 11 memoirs written by parents. The theory explains how parents adjust to champion their child, who has been identified as having a developmental challenge. At the heart of becoming a champion is a psychological process in which parents refine their perspectives on disability awareness, their aspirations and parenting capacity as they develop their championing skills. Refining perspectives and championing are influenced by two factors: the nature of the child's challenges and service factors. The theory of Confident Championing offers a multivariant model that explains the dynamic nature of the adjustment process, capturing both the stress and the fulfilment and sense of purpose that parents experience. [ABSTRACT FROM AUTHOR]

Background: All children have the right to express their views about matters affecting them and participate in decision‐making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal communication system and require adults to speak on their behalf. Methods: The study employs a qualitative multiple case study design involving three children with profound and multiple learning difficulties attending one special school. Social constructivist grounded theory approaches inform data gathering and analysis. Eight interviews are conducted with parents and professionals to explore how they understand the children's views and how this understanding informs person‐centred planning, combined with observations of the children in school and observations of their person‐centred planning meetings. Findings: Adult participants consider the children in the study to have agency and ability to affect the world around them. They believe the children can express their likes, dislikes and what they want but they think the children would have difficulty communicating their views about their health, medical needs and disability. They describe a range of observable actions made by a child to which they give meaning when interpreting the child's views. The actions a person takes as a child's communication partner can enable the child to develop and communicate their views. A process of observation and comparison allows adults to explore different interpretations of a child's views. Perspectives offered by professionals from different fields enable a child's views to be understood in different ways. Conclusions: Adults develop their understanding of the children's views over time in relational and social contexts. Different interpretations of a child's communication are considered when adults collaborate, leading to socially constructed understandings of a child's views. Adults infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views in the present, which informs person‐centred planning. Accessible summary: All children have the right to take part in decision‐making for their future. This includes children with profound and multiple learning difficulties who do not use speech, pictures or signs to communicate and need adults to speak on their behalf.This paper describes eight interviews with parents and people who work with children with profound and multiple learning difficulties to ask how they find out about the children's views. We observed the children in school to check what the adults told us. We also observed a person‐centred planning meeting for each child to see how the adults talk to each other about the child's views and make decisions in a group.The adults told us that watching the children's responses carefully over time in different situations helps them to find out about the children's likes, dislikes and what they want. The adults find it helpful to talk to each other about different possibilities for what the children might be telling them. This helps them to think about what the children might want to do in the future. [ABSTRACT FROM AUTHOR]

Accessible Summary: Sometimes people find it hard to notice what is going on in their mind, body and feelings. Mindfulness can help us with this. Some studies show that mindfulness might help people with intellectual disabilities.We asked people to play a mindfulness computer game to see whether it helped them to notice their mind, bodies and feelings more easily. People who work with people with intellectual disabilities helped to play the game too.We asked people what they thought about the game.People seem to enjoy playing the game and said it helped them be more mindful.We think that learning mindfulness in a computer game might be helpful for people with intellectual disabilities. Background: This paper evaluates the user experience of a newly developed mindfulness and relaxation game designed to teach mindfulness skills to people with intellectual disabilities. Computer‐assisted mindfulness programs have gained considerable attention among researchers in both adult and child populations. However, less is known about the experiences of people with intellectual disabilities who engage in computerised mindfulness programs. The present study aimed to explore the experiences of adults with intellectual disabilities and clinicians in using a computerised mindfulness and relaxation game. Method: Twelve adults (with a mild or moderate intellectual disability) and sixteen clinicians were individually interviewed. Thematic analysis was used to analyse and generate themes within the data. Findings: Three main themes with a number of subthemes were generated for people with intellectual disabilities including the following: (1) The Process of Mindful Island; (2) Fostering Relationships Through the Computer; and (3) The Impact of the Game. Three themes from clinician interviews were also generated including the following: (1) A Good Concept but More to Do; (2) Uncertainties Around Players' Understanding of Mindfulness; and (3) The Computer as a Tool to Build Relationships. The findings indicated that participants found the game an enjoyable experience and saw a number of benefits to engaging in it including perceived improved confidence and perceived reduction of worries. Conclusions: Mindfulness can be adapted to computer‐assisted technology for use among people with intellectual disabilities and may foster a number of benefits. [ABSTRACT FROM AUTHOR]

Accessible Summary: People with disabilities often do research. Sometimes, they work together with people with academic training. Sometimes, working together can be challenging.A researcher with academic training and a co‐researcher with a disability worked together to do interviews.This paper is about how we worked together. We talk about how the co‐researcher with a disability got hired, did ethics training and dealt with transportation and his schedule. We also talk about how we worked together to make sure it was easy for him to do the interviews.This paper might help other research teams figure out how to do interviews together. Background: People with disabilities are increasingly involved in research. Our understanding of how to support co‐researchers with disabilities has grown since the 1990s. However, research teams have reported challenges in ensuring authentic collaboration. We report on the collaboration between an academic researcher and a co‐researcher with a disability to conduct interviews with other co‐researchers about their experiences in inclusive research. Methods: The academic researcher took fieldnotes throughout the research. Together, she and the co‐researcher audio‐recorded "debriefs" after each interview. The academic researcher reviewed all fieldnotes and transcribed "debriefs." Together, the academic researcher and co‐researcher listened to and reflected on the audio‐recorded debriefs. Results: In this reflective manuscript, we discuss the hiring process, ethics training, logistical challenges and tools we developed to support the co‐researcher in his role. We also discuss challenges, including the academic researcher's difficulty eliciting critical feedback from the co‐researcher. This manuscript includes both the voice of the academic researcher and the co‐researcher. Conclusion: Our research process was supported by our prior relationship, accessible processes, and time for training and reflective practice. We call attention to the importance of establishing trust and methods to elicit critical feedback from co‐researchers. We also discuss logistical challenges and the impact of methodological choices on research collaborations. [ABSTRACT FROM AUTHOR]

Accessible summary: Music is often part of our lives.We asked parents what music is like for children and young people with profound learning disabilities at home.People listened to music more than they made music at home.Music is used for different reasons.Music can help families feel more connected. ​ Background: Music is weaved within our cultures; it is ever‐present within daily‐life and can considerably influence our mood, well‐being and relationships. This study explores parental perceptions of the role of music in the home‐lives of children and young people with profound and multiple learning disabilities in the UK. It considers parental views of how listening to and making music can shape the mood and behaviours of their child and their relationship. Methods: Using a mixed‐method explanatory sequential design and cross‐sectional survey methodology, the study collected data from parents and carers of children and young people with profound and multiple learning disabilities. Data were collected from an online questionnaire (n = 48) followed by online one‐to‐one interviews (n = 10). Findings: Parents reported that children and young people with profound and multiple learning disabilities more frequently listen to music than make music within the home. They also stated that music is used for enjoyment, to support mood‐regulation and to add structure to the lives of young people with profound and multiple learning disabilities. Parents finally reported that listening to music together helps families feel more connected and strengthened their relationships. Conclusion: This paper outlines the positive role music may have in the home lives of people with profound and multiple learning disabilities and their families. [ABSTRACT FROM AUTHOR]

Accessible Summary: The Circle of Security Parenting (COS‐P) programme can be helpful for some parents of children with learning disabilities to think about their relationship with their child.Parenting a child with learning disabilities is different, and COS‐P can highlight this difference.This can feel painful for parents and may stop them engaging with the programme. Background: Background: The promotion of secure attachment relationships in childhood leads to better outcomes in later life (British Psychological Society 2017, Incorporating Attachment Theory into Practice: Clinical Practice Guideline for Clinical Psychologists Working with People who have Intellectual Disabilities). The Circle of Security Parenting Programme (COS‐P) provides a clear framework for reflecting on attachment relationships (Cooper et al 2009, Zero to Three, 37, 27). Methods: Methods: Semi‐structured interviews were conducted with parents of children with learning disabilities who attended a COS‐P programme to find out about their experiences of the course and how applicable it was to them. The data were analysed using thematic analysis. Findings: Findings: Four key themes were identified: these related to (1) COS‐P concepts are relevant to all children but (2) parenting a child with a learning disability is different and (3) COS‐P can create a focus on their child as different, which can be painful, and (4) changes recommended to make COS‐P suitable for parents of children with learning disabilities. Conclusions: Conclusions: This paper outlines the benefits and challenges of COS‐P in sharing concepts related to attachment, whilst highlighting differences for parents of children and young people with learning disabilities, which can be painful. [ABSTRACT FROM AUTHOR]

Accessible Summary Staff who care for people with autism were shown video of themselves at work., Only good bits of video were shown to staff. Good bits were chosen because the video showed that the staff and the people with autism were enjoying being with each other., We asked four members of staff how watching the good bits of video made them think and feel., In this paper, we report what the staff said. We grouped their ideas into sets. In this paper, we report exactly what the staff said., We found that all staff felt more confident after watching the videos. They could see more ways that the people with autism were communicating with them. They could imagine being better at making relationships with people with autism., We think that finding positive moments of enjoyment using video is a good way to make things work better for staff and for the people with autism., Summary This paper provides preliminary findings of the impact of a workforce coaching intervention that used video feedback in a service for children and adults with autism. The proposed mechanism for change in the intervention was the way that video footage was highlighted through editing on the part of the practitioner and the positive coaching conversation that was used to review the video edits. Four participants who had received the intervention were interviewed after the intervention. Thematic analysis of the participants' responses during the narrative style interview was conducted. The results suggest that the participants found the intervention a positive experience that raised their confidence in their work role. They reported heightened awareness of the individual needs of the people they worked with and a new appreciation of the potential for relationship between themselves and the services' users. [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: 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 looks back at the education of people with learning difficulties from 1900 to 1970 who are blind or have very little sight. • The information was taken from printed documents and from six detailed interviews with people with learning difficulties who are blind or have very little sight. • The paper shows that people with learning difficulties who were blind or had very little sight often had no education at all and that the education they did receive did not usually meet their needs. • People with learning difficulties were sometimes placed in schools for children who were blind or had very little sight where they were bullied and abused. • It is hoped that this paper will add to the growing history of people with learning difficulties which is based on their own experiences. • The information in this paper is taken from a large study on the history of education of people who are blind or have very little sight in Britain. [ABSTRACT FROM AUTHOR]

Accessible summary: I asked mothers to speak to me about their experience of giving medicines to their child with severe and profound intellectual disabilities.Mothers told me their instincts often tell them how their child is and they also talked about the challenges in giving medicines every day.The findings from this study show how important it is that professionals understand how difficult it can be.It is essential that we support mothers to "give medicines." Background: Children with severe and profound intellectual disabilities experience multiple chronic health conditions requiring a variety of medications. The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. Materials and Methods: A hermeneutic phenomenological approach was adopted with a purposeful sample of 15 mothers adopted. Face‐to‐face interviews and participant diaries were utilised for data collection. Results: Themes were identified with one being that of "lived body" exploring how mothers "just know" or use their instincts and also the challenges they encountered in daily life when giving medicines. Conclusions: This paper provides insight into the complexity of giving medicines to children with severe and profound intellectual disabilities and the level of support required by mothers. [ABSTRACT FROM AUTHOR]

Accessible summary: When people with learning disabilities have children and become parents, they sometimes need good support to help them.Research about parents with learning disabilities and the support they get is usually about mothers and not fathers. There is not very much written about dads with learning disabilities.This paper is about interviews with eight dads with learning disabilities who told us about what it was like to be a dad and about the kind of support they had got.We think more support needs to be given to parents with learning disabilities and that dads should be included in this. Background: This article reports on the perspectives of fathers with a learning disability in England about being fathers and the support they have received. Although there is an established literature that considers parenting with a learning disability, few studies have focused on the perspectives of fathers. Method: We adopted a qualitative approach for this study, using semi‐structured interviews with eight fathers with learning disabilities, recruited through learning disability organisations and social media. The data were analysed using thematic analysis. Results: Being a father was important to participants and the findings are presented in three themes: descriptions of fatherhood; challenges of fatherhood; and support with fatherhood. Conclusion: We discuss how fathers' perspectives on fatherhood relate to wider transformations of fatherhood in society, the impact of these on fathering with a learning disability and the implications for services. [ABSTRACT FROM AUTHOR]

Accessible summary: This article presents part of the research project we carried out on the importance of social relationships and loneliness in young people with and without intellectual disabilities.We interviewed 23 young people during our research which was developed over more than a year and a half.Social relationships are important for young people both with and without learning disabilities. A person may want or need to be alone, but nobody wants to feel lonely.We wrote this article collaboratively. People with a intellectual disabilities do not often contribute to written papers. This article presents the results of a project carried out by a group of researchers with and without intellectual disabilities on the importance of social relationships and loneliness. We wanted to find out about the experience of loneliness in young people with and without intellectual disabilities and know whether this was an important issue for them too. We interviewed a total of 23 young people during our research which was developed over more than a year and a half. This article has been organised into three parts. In the first part, the two academic researchers outline the concept of inclusive research highlighting the value of recognising and making the experiences of people with intellectual disabilities visible. Following this, the four authors describe how the research group was formed and the methodological decisions that were made. Finally, we report the results of the research and the main conclusions. The young people with and without disabilities we interviewed told us that nobody wants to feel lonely. We believe that it is important for other researchers at the university to recognise our work and be encouraged to implement inclusive research processes. [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: 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]

This paper explores the use of disposable cameras and Talking Mats as research tools to access the views of young people with learning disabilities about their social activities. A pilot study was carried out with nine 16-year-old young people in a special school. They were given a single-use motorized camera. This was used to record the out-of-school activities they participated in, both in the home and community, for 1 week. The young people were asked to sort their photographs using Talking Mats symbols. This was followed by parental interviews to check for validity and reliability. The paper reports on the potential use of photography and Talking Mats as research tools with young people with learning disabilities, and how their use may break down some of the language barriers inherent in traditional interview methods. The author discusses some of the practical and methodological issues arising from the study. [ABSTRACT FROM AUTHOR]

Accessible summary Relationships and sexuality are important for disabled people., Through the voices of 16 intellectually disabled adults, this paper shows what they consider to be important in areas such as education or personal relationships., Most of the people interviewed would like to have a partner and live together as a couple., Intellectually disabled people encounter many barriers to obtain certain basic rights., Summary This study starts from the premise that we are sexual beings, and therefore, sexuality is part of our lives and defines us as human beings. This is also true with regard to intellectually disabled people. Within the framework of broader qualitative research carried out in Spain, some partial results of an ongoing study aimed at finding out what a group of adults see as important in different areas of their lives are presented here. Through the personal narratives of 16 intellectually disabled people, this paper explores some of their ideas and demands about sexuality and their sexual lives. Most of the people interviewed expressed their desire to have a partner and to live as a couple. There is no doubt that many intellectually disabled people have greater control over their lives and the decisions that affect them, but as they tell us, the presence of old ideas can hinder them from securing their fundamental rights. [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: Dialectical Behaviour Therapy (DBT) is a therapy to help people manage their feelings.We ran a DBT group for people with an intellectual disability. The group seemed to help people feel better and manage their feelings, even after the group ended.The group was 2 years ago. We talked to three people who went to the group to see what people still remembered from the group and if DBT was still helping them.We think having a top‐up session might help people to remember and practise ideas from the group. Background: This paper reports quantitative and qualitative follow‐up data from three participants who attended a Dialectical Behaviour Therapy (DBT) group for people with an intellectual disability. Materials and Methods: Quantitative data regarding psychological well‐being, psychological distress (measured using the Psychological Therapies Outcome Scales; PTOS) and quality of life (measured using the Health of the Nation Outcome Scales—Learning Disability; HONOS‐LD) are reported for pre‐group, post‐group and at 6‐month and 2‐year follow‐up. Interviews were conducted with participants post‐group and at 2‐year follow‐up. Data were analysed using thematic analysis. Results: Improvements in scores on measures of psychological well‐being, psychological distress and quality of life appear to be maintained at 6‐month follow‐up, but scores at 2‐year follow‐up suggest a return to baseline. Qualitative self‐report data suggest a number of interesting ways participants adapted and individualised techniques from the group, as well as suggesting possible barriers to maintaining change in the longer term. Conclusions: Clinical implications are considered to improve effectiveness of similar interventions, as well research implications in order to improve knowledge about the longer term impact of group DBT interventions. [ABSTRACT FROM AUTHOR]

Accessible Summary: The Inclusive Research Network (IRN) is a group of researchers who do projects that matter to people with intellectual disabilities in Ireland.This paper is about a project we did to learn what it is like for people with intellectual disabilities in Ireland to move from one house to another.We talked to 35 people who moved house.Some people chose where to move but others had no choice.Feeling safe made them happier in their new home.One third of the people we spoke to had no choice about where they live and who they live with.Having these choices is their right under the United Nations Convention on the Rights of Persons with Disabilities.People with intellectual disabilities need supporters who listen and respect them. Background: Supporting people with intellectual disabilities to live well in communities they choose is deinstitutionalisation's central aim and endorsed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006). This study focused on the experiences of people with intellectual disabilities in Ireland when moving home using an inclusive research approach. Method: This inclusive research project employed a qualitative approach. Participants included 19 men and 16 women (total n = 35) with ages ranging from 22 to 77 years. Structured interviews attended to the experience of moving home and the supports accessed during and after the transition to community living. Results: Thematic analysis yielded four themes: "expressing choice" in the moving process; "feeling connected or isolated when moving"; "accessing supports during and after the move"; and finally, participants' reflections on "experiencing vulnerability and feeling safe" while resettling. Conclusions: This is the first study about people with intellectual disabilities moving home to be collaboratively designed and completed by an inclusive research team. Although much is understood about the long‐term benefits of engaging in meaningful choices about housing and supports, concerns remain about the extent to which the will and preferences of people with intellectual disabilities in Ireland are respected when moving home. [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]

The study examined the effects of transition employment support to two cohorts of young people who were in their last year in school or college in 2005/2006 and 2006/ 2007. This paper reports the views of carers, teachers and support workers of the impact this additional support made to the young people. Analysis of the data reveals a difference between the views of carers and those of professionals. The paper argues that these differences may reflect different understandings of the aim and purpose of transition support and which may make it difficult to achieve a smooth transition for all stakeholders when not taken into account. This may have implications for how to structure and deliver transition support, some of which are being outlined in the discussion. [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 This paper looks at the views of paid- and family-carers about discussing health matters with people with learning disabilities., The author found that the roles of paid- and family-carers in monitoring health were not clearly defined., Explaining health problems and different medical tests to people with learning disabilities proved difficult., Nevertheless, carers possessed good skills in helping people with learning disabilities understand more about their health., Summary Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. Thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid-carers claiming that health was outwith their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid-and family-carers and with the integration of health and social services. [ABSTRACT FROM AUTHOR]

Accessible Summary Pupils with autism were interviewed about their participation in drama classes., Interview approaches were devised so that the pupils could give their views., These approaches used different ways to engage the pupils including widgit symbols, photographs and video., The information the pupils gave was important in building an understanding of what they take away from drama sessions., Summary Pupils with autism (aged 16-18) were interviewed as part of a study examining the participation of individuals with autism in drama education. This paper reflects on the approaches devised to gain views from ten pupils with autism who communicated in different ways. The procedure for gaining views from the pupils is explained, and the views they give are outlined. The pupils were able to identify aspects of drama education that they liked and did not like; share goals of drama education and communicate feelings about drama education. The views are discussed in terms of how they inform understandings of individuals with autism as well as their participation in drama education. Challenges specific to gaining views from a group of pupils with autism are considered and implications for future research presented. [ABSTRACT FROM AUTHOR]

Accessible Summary In the UK, more people with learning disabilities have the chance to have more choice and control over their lives., One big issue for many people with learning disabilities is that they should have control over their own money., There can be quite a lot of problems for people with learning disabilities around managing money. Staff do not always know how best to help. Banks and building societies are not always helpful or accessible., Giving people more choice or control over their money does not always mean that things will be better for people with learning disabilities., People with learning difficulties need better kinds of support to have choice and control over their money., Summary In the UK, policy on adult social care places an emphasis on maximising choice and control for service users, including people with learning disabilities. The shift from the provision of organised services for groups of people to offering individual and personal budgets and pots of money for people to buy their own services has major implications for the way in which people with learning disabilities are offered the opportunity to be much more 'hands-on' with managing their own financial affairs. Some of the financial implications of personalisation are arguably quite complex, and it is not clear how well people with learning disabilities are being supported with this. This paper highlights some key and emerging issues on the topic of money and personalisation and draws on interviews with a range of staff in learning disability services and highlights their views, hopes and concerns about the best ways to support people with money matters. The response of mainstream financial institutions to the needs of people with learning disabilities and the political and economic context in which the personalisation agenda is developing are also discussed. [ABSTRACT FROM AUTHOR]

This paper deals with the initial steps of the judicial process for persons with intellectual disabilities who are suspected of a minor offense; a stage where plaintiffs, police officers, and crown attorneys make a series of decisions that will have a significant impact on the course of the judicial process. The objective of this study was twofold: (i) to document the criteria that influence dispositions by police officers and crown attorneys about persons with intellectual disabilities in the criminal justice system (CJS), (ii) to report suggested improvements to better support them throughout the judicial process. Fourteen semi-structured interviews were conducted with key informants from the CJS and from service and community organisations working in the field of intellectual disabilities. The results of this qualitative study indicate that decisions made and dispositions taken rely on a series of implicit criteria that influence the course of the subsequent judicial procedures against persons with an intellectual disability. Suggestions for improvement pertain to developing the screening of intellectual disability procedures, the provision of information to key actors about intellectual disabilities, a preference for the use of summons to appear over other types of procedures, and drafting memorandums of understanding between various organisations and police services regarding persons with intellectual disabilities. In conclusion, an emphasis must be put on screening and diversion procedures for persons with intellectual disabilities when appropriate. [ABSTRACT FROM AUTHOR]

Accessible summary • This study is about the life stories of six older people with Down’s syndrome who spent some part of their childhoods in institutionalised settings. • They have interesting and moving stories to tell about their lives. They talked about their childhood and current lives, their likes and dislikes, their strengths and difficulties and their hopes and dreams. They also spoke about the important people in their lives. • The participants did not talk about themselves as being ‘old’, ‘disabled’ or as having ‘Down’s syndrome’. They talked about themselves in other ways, such as being ‘normal’, being a ‘man’ or a ‘beautiful lady’. • The researcher learnt about herself whilst doing this study. She learned about the value of taking time to listen to people and she reflected on her own life story. This paper is a narrative analysis of the accounts of six older people with Down’s syndrome who spent part of their childhood in institutional environments. The study aimed to find out how the participants talked about themselves. Different types of narrative analysis were used, including those of Murray ( Qualitative psychology: a practical guide to research methods, London, UK, Sage, 2003), Gergen & Gergen ( Hist Social Psychol, Hillsdale, NJ, Erlbaum, 1984) and Labov & Waletsky ( Essays on the verbal and visual arts, Seattle, University of Washington Press, 1967). All of the participants spoke about their childhood, current and future lives. Most participants were able to reflect upon their strengths, limitations and hopes. The analysis highlighted the commonalities across the accounts: loss, abuse, health, significant others, transition, resilience and identity. Significantly, none of the participants identified themselves as having ‘Down’s syndrome’ or a ‘learning disability,’ nor did they identify with being ‘older’. Instead, individuals identified themselves in relation to gender and social roles. The accounts varied in terms of their form, structure, coherence and reflexive capacity. Clinical implications are discussed. [ABSTRACT FROM AUTHOR]

Gathering reliable and valid information is the cornerstone of applicable research. Interviews provide a basis for collecting information about an individual's experiences, attitudes and beliefs. Yet interviews place significant demands on an individual's cognitive and linguistic skills. Such demands have implications for interviews with children and people with specific and general learning disabilities. In order to provide a range of views in research and practice specific attention must be paid to the mechanisms that limit participation or result in unreliable reports. This paper examines the ways in which studies of memory and language can provide relevant data to help interpret interviews and support the development of techniques to enhance the reliability and validity of the information provided. [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]

Background: A digital lag has been reported on access to the internet and performing internet activities for young people with learning disabilities in everyday life. Aim: The aim of this study is to explore environmental opportunities and challenges when performing internet activities and how internet use influences social and community participation for young people with learning disabilities from the perspectives of the target group. Methods: An inductive design was applied, with focused observations and follow‐up interviews of 15 internet‐using young persons with learning disabilities in their everyday settings. The data was analysed interpretatively using open coding. Findings: The environment offered both opportunities and challenges in terms of the design of digital devices and digital support. Support from peers was often preferred. All participants performed internet activities related to social participation although not all used social media. Searching for information was performed, however, finding the information or understanding it was challenging and led to restricted participation in the community. Conclusion: More examples of internet use positively influencing social participation were found, contrary to community participation. It is indicated that concrete learning situations when using the internet for social participation were more adapted to the participants and promoted this type of participation, contrary to situations of internet use influencing community participation. Accessible summary: Doing activities online is part of everyday life.We explored opportunities and challenges in the environment when performing internet activities and how internet use influence participation for young people with learning disabilities.We observed and interviewed people in their everyday settings of school or activity service and home about their internet use.Young people prefer digital support from peers rather than staff when using the internet.People do internet activities to have contact with others, but it was a challenge to find and understand information online and to take part in activities in the community. [ABSTRACT FROM AUTHOR]

Background: The coronavirus disease 2019 pandemic changed the way we live, work, interact and do research. Many activities moved online, and digital inclusion became an urgent issue for researchers working with people with learning disabilities and other groups at risk of exclusion. This has generated new questions about how we conduct research and what it means to go into 'the field'. Methods: We discuss our experience working across four qualitative research projects involving 867 participants with learning disabilities, conducted during the coronavirus disease 2019 pandemic. Findings: Moving research online resulted in often‐swift adaptations to research designs and practice, bringing new insights and benefits to our studies. The changing circumstances fostered innovation and greater flexibility and contributed to research becoming more accessible to many. However, doing research online also posed new challenges as well as amplified existing ones. Conclusions: The pandemic has made it easier for some people with learning disabilities to participate in research, but more needs to be done to improve the reach and quality of that participation. Researchers should make the process of participation as accessible as possible. It is also their job to question and challenge the conditions that create barriers to participation in research and to look for ways to change these. We make some recommendations on how this can be achieved. Accessible summary: During the coronavirus disease 2019 (COVID‐19) pandemic, a lot of activities including research moved online. Access to the internet became even more important for people to be able to take part in the research.People with learning disabilities do not always have internet access or skills and support to use the internet. Devices and internet access can also be expensive. This means people with learning disabilities can be excluded from online activities and from research.In this article, we talk about four research projects with people with learning disabilities which we did during COVID‐19. We talk about what we did and about the changes we made to the projects because of the pandemic. We also talk about the things that worked well and the things that were difficult when we did research online.We think research should be accessible and we share some advice about how researchers can make it easier for people with learning disabilities to take part in research at a time when a lot of research happens online. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to examine whether and how people with learning disabilities were being supported to use technologies to keep connected and stay well during the pandemic. Methods: Thirty‐eight people in a range of support roles were interviewed about their experiences of trying to support people with learning disabilities to use technologies during the pandemic with a particular focus on the difficulties experienced by learning disabilities and the practices that supporters developed to try to overcome these difficulties. Findings: Findings revealed examples of digital exclusion, where people with learning disabilities were not able to use technology. The three main barriers to digital inclusion were cost, access and environment. The findings also revealed examples of digital inclusion, where those in support roles worked to overcome these barriers. These digitally inclusive support practices can be characterised as 'possibility focused'. Possibility focused support has four key components: creativity, resilience, risk‐management and shared decision‐making. Conclusion: The pandemic has shown us that it is important to support people with learning disabilities to use technologies. It is important that we learn from the experiences of those supporters who helped people with learning disabilities access and use technologies during the pandemic, so that digitally inclusive support practice is shared more widely and more people with learning disabilities are supported to be digitally included beyond the pandemic. Accessible summary: During the pandemic when we had to stay at home, being able to use technology to keep connected with friends and family was very important.I wanted to find out if people with learning disabilities were getting the support they needed to use technology during the pandemic.I asked 38 'supporters' about their experiences of trying to help people with learning disabilities use technology during the pandemic.I found that there were three main barriers to using technology: cost, access and environment.I also found examples where 'supporters' had been able to help people with learning disabilities overcome these barriers and use technologies. [ABSTRACT FROM AUTHOR]

Background: The Child Development Advisor (CDA) (Portage) service provides developmental support to children with significant developmental delays and emotional support for their families through fortnightly home visits. However, the onset of the COVID‐19 pandemic and subsequent restrictions imposed to control its spread prevented services from providing face‐to‐face sessions with families and caregivers, thus removing the CDA (Portage) service's primary means of supporting children and their families. This article aims to explore the impact of those changes on a team of CDAs. Methods: Semi‐structured interviews were conducted with six CDAs representing the CDA (Portage) service within one NHS Health Board. Findings: The CDAs expressed feeling an initial negative impact of the COVID‐19 restrictions on the service, but in the longer term they noticed a number of positive impacts, including caregiver empowerment and improved working with other professionals. Conclusion: Despite having their primary means of providing support removed as part of the COVID‐19 restrictions, the service has been able to adapt to continuously support families and promote child development throughout the pandemic and inadvertently developed a service offer that may be more beneficial for both families and professionals in the future. Accessible summary: The Child Development Advisor (CDA) (Portage) Service helps children with developmental delays to learn through play.The COVID‐19 pandemic and restrictions on life that came with it have really affected families of children with developmental delay and the people who support them.We interviewed six CDAs about the COVID‐19 restrictions and their work and found that the CDAs had used other ways to promote child development and support families when they could not see them in person.Going forward, the team will use these new ways of working to improve the support provided by the CDA (Portage) service. [ABSTRACT FROM AUTHOR]

Background: This qualitative study explored the attitudes and experiences of Hong Kong Chinese parents/carers relating to the sexual needs of their child with intellectual disabilities. Methods: Semi‐structured interviews were conducted in Hong Kong with seven parents/carers applying Interpretative Phenomenological Analysis to explore their experiences of and attitudes towards the sexual needs of their adult child with intellectual disabilities. Findings: Data revealed three salient variations in participants' attitudes towards the child's sexual needs: concern, reluctance and prohibition. Participants' anxiety about discussing sexuality was evident. Most participants further displayed a layer of feeling that combined 'love' and 'grief'. Based on Goffman's dramaturgical perspective, participants exhibited front stage and back stage behaviours that are believed to be strongly influenced by stigmatisation and collectivist culture. Conclusion: Various levels of intervention to reduce stigma are identified and discussed. This study also highlighted the role of caring professionals in generating awareness of the cultural impact on the family and the need to carefully address the subtle feelings experienced by family members with intellectual disabilities. Accessible summary: People with intellectual disabilities experience physical changes and wide‐ranging sexual expression. Their parents are among the most important influences on the development of their sexuality.This study investigated the experiences and attitudes in Hong Kong of parents/carers with an adult child with intellectual disabilities regarding their child's sexuality.We considered what mattered most to parents/carers in three areas: They have had less concern with sexuality, they were hesitant to talk about sex, and were not allowing their adult child with intellectual disabilities to have sex or romantic relationships. Parents/carers were also anxious about discussing sexuality and displayed feelings that combined 'love' and 'grief'.Stigma should be reduced. Caring professionals should also be aware of the cultural factors that impact the feelings of people with intellectual disabilities and their parents. [ABSTRACT FROM AUTHOR]

Background: This study is inclusive research. Inclusive research is when people with disability are involved as researchers. The aim of this project was to focus on relationships that people with intellectual disability have and to find what makes these relationships work. Another aim of this project was to share stories about these relationships at a big event. Methods: People with intellectual disability that were interested in participating were asked to pick a person whose relationship was important to them. Overall, seven pairs took part in the project. We interviewed the pairs together and asked them: How did the relationship start?What makes the relationship strong?Why is the relationship important to each person? Later, participants were invited to turn their interview responses into a relationship story that was displayed as part of the 20th anniversary celebrations for the Centre for Disability Studies (CDS). Findings: We looked through the transcripts to find out how the relationships work. We found four major themes—relationships change over time, important parts of the relationship, relationship challenges, and what makes the relationship work. Conclusions: There were many successes in this project. It was the first time that Jack and Seren had done inclusive research together and we learnt a lot about how to work well together. The banners shown at CDS's 20th anniversary event celebrated relationships and showed members of the public a range of relationships involving people with intellectual disability. Accessible Summary: Our names are Jack and Seren and we are inclusive researchers.We asked seven people with intellectual disability to choose a person that is important to them.We interviewed each pair together and asked them what makes their relationship work.We turned people's interviews into stories which we displayed as banners at a special event.We found out some information about how relationships change over time, important parts of relationships, relationship challenges and how relationships work. [ABSTRACT FROM AUTHOR]

Background: Health research is increasingly conducted with the active involvement of the people who are the focus of the research. People with intellectual disabilities also participate actively in research; this is called inclusive research. Collaboration in inclusive research teams requires shared decision‐making (SDM). Although inclusive studies frequently refer to decision‐making as something the research team does together, the decision‐making process is still a black box. This study aims to provide more insight into SDM in inclusive research by reflecting on a 3‐year collaboration in an inclusive research team. The research questions are: (1) What kinds of decisions were made by the inclusive research team? (2) How were decisions made by the inclusive research team? (3) What impact did the decisions have on the research project? Methods: To answer the research questions, the inclusive research team members reflected on SDM in their project by looking at the documentation of the inclusive research process and by conducting semi‐structured interviews with the team members. Findings: In all research steps, the inclusive research team decided together on the content and procedures of the studies and on role division. Reflecting on SDM resulted in an overview of the types of decisions made, the information needed and the processes involved in making shared decisions. Furthermore, the team provided an account of how SDM positively impacted the quality of the studies and empowered people with intellectual disabilities. Conclusions: This study provides insights into types of decisions, SDM processes and their impact on research. The insights give an overview of opportunities and key components of SDM that can foster conceptual clarity of SDM in inclusive research. In practice, inclusive research teams can use these insights to advance successful ways of sharing power in decision making, having an impact on the quality of research and empowering people with intellectual disabilities. Accessible summary: This study is about an inclusive research team making decisions together.An inclusive research team includes researchers with and without intellectual disabilities.This study describes the kinds of decisions that were made together and how joint decision making influenced the research project.The study also describes how the team made decisions together: the information used and the steps taken.Making decisions together helped to improve the research. [ABSTRACT FROM AUTHOR]

Background: This feeding clinic engaged parents as active participants in a group intervention. Parents' participated behind a two‐way mirror. This novel approach to practice in this domain largely evolved from an integration of theory, service user feedback, service development and the local context. This review sought to understand how parents experienced being part of a reflecting team in this way. Methods: Semi‐structured interviews were completed and analysed using thematic analysis. The researchers took a critical realist approach to the research, data analysis and report writing. Findings: Parents talked about benefiting from perspective taking that enabled them to see the child in context, which in part supported novel understandings of their child's feeding and their relationship to it. Three themes were identified: 1."Connection and Distance" explored parents' experience of being behind the screen in terms of the dialectic potential that was created by being simultaneously close to and distanced from their children and the other parents.2."Playing with Techniques" describes the way parents valued learning in the group through discussion and working on techniques between sessions. In particular, they moved from looking for techniques to thinking about how and when to use "techniques" that is, second‐order change.3."Unexpected Gains" describes how parents came to new and unexpected insights about their understanding of their children, the presenting issues and their relationships to these issues. Conclusion: Parents' experiences suggest that there is merit in engaging parents in a reflecting team in a feeding clinic. This way of working with parents supports their engagement in change and positions them as active agents of this change. Parents taking up this position has the advantage of moving from passive consumers of health care to active and critical collaborators. Accessible summary: Children with disabilities can present with eating difficulties that can be a significant stressor on families and the health care teams trying to support them.Integrating behavioural and family therapy models offers a novel way to work with families in this context.Parents working as a reflecting team can facilitate sharing and comparing of ideas and learning over time.Supporting families to move from consumers of health care to co‐producers enables them to not only learn new techniques but also, and more importantly, to critically think about the techniques being offered and how to adapt these to their family preferences, culture, and context. [ABSTRACT FROM AUTHOR]

Accessible summary: Sepsis is a very serious illness. It is a common cause of death in people with learning disabilities.We wanted to understand what it is like for people with a learning disability to have sepsis.We asked three people with a learning disability and five of their carers what it was like when they had sepsis. We asked about their health before sepsis, how their sepsis was treated and what health services could have done better.Carers often felt that people's mental health was worse after sepsis. They thought that even when people were physically better, their mood and behaviour was still affected.After sepsis, people were more worried about their physical health, and carers were careful to follow up on every health concern. Background: Sepsis is a common cause of death within the general population and the third most common cause of death for people with a learning disability, suggesting an increased vulnerability or different trajectory within this population. Despite this, there is currently no research into the direct lived experiences of people with a learning disability who develop and recover from sepsis. Methods: Semi‐structured interviews were conducted with 3 people with a learning disability (average age of 44.7, range of age 33 to 68) who experienced sepsis and 5 carers (1 familial and 4 professional carers) (average age of 48.8, range of age 43 to 58) who had supported an individual with a learning disability while they had sepsis. Sepsis was caused by a range of physical health problems. Face‐to‐face semi‐structured interviews were conducted, transcribed and analysed using thematic analysis. Findings: Six main themes were identified: chronic and acute pre‐existing health conditions, experiences within the hospital setting, physical recovery, mental recovery, returning to a normal life and the implications of sepsis. The findings highlighted some of the ongoing difficulties for people with intellectual disabilities in accessing timely healthcare provision and the ongoing mental health problems, even after physically recovering from sepsis. People with a learning disability have more comorbid health conditions which may compound the longer‐term effects of sepsis. Conclusion: Future research should be conducted with people with learning disabilities about their experiences shortly after recovery from sepsis, to mitigate the effects of memory difficulties in recalling experiences. [ABSTRACT FROM AUTHOR]