Search

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

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

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

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

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

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

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

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

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