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

Accessible summary: We are members of an arts organisation who support the creative talents of people with learning disabilities and autistic people.We have been working on a research project at "The Hub" at Wellcome Collection in a team consisting of academic and nonacademic professionals with diverse abilities.Because of coronavirus, we all had to stay home to stay safe. To carry on with our research project, we participated in 28 creative research meetings on Zoom.In this paper and accompanying video, we will tell you how we did it. We will also tell you how we felt about moving away from "The Hub" and trying to do research remotely from home.We hope our project has shown that people with learning disabilities can transition well to working online when there is trust and mutual respect. Background: As part of "The Hub" project at Wellcome Collection, a team of eight co‐researchers with learning disabilities along academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts‐based methods, co‐researchers remotely co‐analysed the survey results amid COVID‐19 lockdown challenges. Here, we explore our unexpected "transition" journey from the physical "Hub" to the digital space. Methods: We organised 20 sessions at The Hub and used audio/video/photo recordings to capture key moments. With the lockdown, we ensured that every co‐researcher had access to and support for digital technologies. Throughout 2020, we organised 28 Zoom meetings involving all co‐researchers. In June, Lilly (a multi‐media journalist and she lives by the motto striving for equal opportunities for people with disabilities and fairness throughout) and Sue (an independent Leadership Coach and Mentor) conducted Zoom interviews with the co‐research team to reflect on our transition journey. In this creative video‐form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process. Findings: We identify that trust and the social bonds established at The Hub are the key components of our transition to the digital environment. There is the tension between longing for in‐person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to "change the world" and strive for social justice. Having time and opportunity to improve, and co‐researchers' steady growth in confidence are equally important. Conclusions: The determination for maintaining friendships among co‐researchers and the motivation to "change the world" overcome COVID‐19‐related challenges in continuing co‐research. [ABSTRACT FROM AUTHOR]

Accessible summary The governments in the UK want people with learning disabilities to have a voice about what happens in their own life and also in policy., One way of doing this is through research. This paper looks at two inclusive research projects, which were about people using direct payments and personal assistants. The projects both employed people with learning disabilities., Each of these projects made a training pack from the research, so that they would help people with learning disabilities and their supporters. They also had some effects in ways that were not planned, because the government wanted to learn from them about inclusive research., All research seems to have most effect when there are many voices seeking change, including those of policy makers themselves., Inclusive research is a way of achieving 'choice and control'. But just like with direct payments and personal budgets, the best way in these projects was to have good support from other people who will listen to you, and help you decide things for yourself., Summary Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self-advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of 'choice and control', showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a 'bandwagon effect' of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and 'direct' user level and is often achieved by people with learning disabilities having a voice at the dissemination stage. [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 • There is now a statement from the United Nations that sets out rights for disabled people. One of their rights is to participate in their communities. • One way of participating is when people with intellectual disabilities do research on issues that are of concern to them. This is called inclusive research. • No Longer Researching About Us Without Us was a national project to support people with intellectual disabilities and support workers to do inclusive research. It went on for 18 months. • This paper tells about two of the projects that were done by getting people in some services together to talk about what they wanted to do. One of the projects was about a coffee shop and its place in a small town. The second was about how to stop bullying. • We found that doing the projects led some people with intellectual disabilities to become stronger self advocates. We also found that the projects raised important issues about their lives that other people had not thought of and that people began to work together in groups to do their own research and to make change happen. No Longer Researching About Us Without Us was an innovative national project which aimed to develop inclusive research with people with intellectual disabilities in the Republic of Ireland. This paper is my personal reflection as co-ordinator of this project on work undertaken by and with people with intellectual disabilities during its 18-month life. Using examples from the project, this paper explores links between the inclusive research aspect of project and the rights of people with intellectual disabilities to participate in their communities. As a result of the project we found that people with intellectual disabilities began to initiate and take action on some issues that were important to them and that this resulted in the development of longer term changes in their role within one service in Ireland. [ABSTRACT FROM AUTHOR]

This paper is about my job as a research supporter. I was part of a team, with three people with learning difficulties. They had paid jobs as researchers. The project was at a People First organisation, and it was about direct payments.These are the things I tried to do in my job:It is not always easy to do these things. The supporter needs to learn how to step back, and find ways for researchers with learning difficulties to do things for themselves.It is important that people with learning difficulties know how powerful they can be when they are doing research.People First organisations need to decide for themselves about the research they may want to do.Thank you to CHANGE for the use of pictures from their PictureBank. In a previous article [Brit J Learn Disabil27: 48–51], entitled‘Researching Together’, I described the process by which a team of People First researchers and myself worked together on a small-scale project in Bristol. The project was started by self advocates, and followed their own ideas, although they had support. Walmsley refers to it [Disabil Soc16: 198] as a‘team approach, rather than one where the people with learning disabilities are in charge’, admitting that the title‘Researching Together’ led her to this conclusion. My basic aim in writing this sequel, then, is to consider the notion of‘together’. Is the equation of togetherness about equal roles, or does it automatically imply that one partner is more powerful than the others? This is a practice paper, which offers some analysis of our own experiences in a large-scale, funded research project, in which the self advocates had paid employment as researchers. All members of the team can contribute to this kind of reflexivity. The article concludes that inclusive research is something new, with its own hallmarks and styles. The research supporter has to remain aware of the potential power in her own role, and to be prepared to divest herself of that power and to step back, so that People First members take control of the process of research. [ABSTRACT FROM AUTHOR]

Accessible summary People with intellectual disability have often been involved in research, but not in the analysis of data., One reason might be that not many people with intellectual disability have received training in research., This paper describes a project in Austria. In this project, we have looked at the experiences of people with intellectual disability during transition from school to work and in working life., We have collected their life stories over a period of 2 years., To assist with the analysis, we have formed a reference group., In this group, twelve people with intellectual disability look and make sense of the life stories together with the non-disabled researchers., We think that this helps the project to become more aware of things that are important to people with intellectual disabilities., This is because researchers with disabilities have the insider perspective. They know how it is to live with an intellectual disability, In this paper, I show the life story of a woman who tries to hide her intellectual disability., I show how the reference group has worked with the life story and what they found out., Summary Despite considerable achievement in inclusive research, people with intellectual disabilities have been largely excluded from the critical area of data analysis and theory development. Next to the undoubted complexity of these tasks, this can partly be attributed to higher demands of representativeness that are used to judge the validity of disability research as well as missing training opportunities for people with intellectual disabilities. The paper presents data from the first core research project in German-speaking countries that was carried out within an inclusive framework. Within the FWF (Austrian Science Fund) financed project 'Experiences of participation in the (vocational) biography of people with intellectual disability' at the Department of Education at the University of Vienna, the research team aimed at involving people with intellectual disability in an accompanying reference group in the process of co-construction of theory through the shared analysis of the collected qualitative data: life stories and narratives of people with intellectual disability. This paper seeks out to show the added value of this approach both methodologically and practically. [ABSTRACT FROM AUTHOR]

Accessible summary • This paper is about how people get good support. This can happen when you have a direct payment, and you have your own personal assistant (PA). But you need to have a good PA, who knows how to communicate well. • Two people with learning disabilities worked in the research team on this project. The team made videos of people with learning disabilities working with their PAs. • It is important that the PA knows how to support you well. For instance, they should treat you with respect. This means that you can tell them what to do. They should talk to you like an adult, and listen to what you want. They should not rush you. • A good PA will remind you that you’ve got a choice. They will help you be in control of your choices, but they won’t force you to make a choice. • PAs sometimes have to give you advice. But that should be on your terms. It’s good to have a friendly relationship with your PA. It’s a bit like team work. • People with learning disabilities can help to train their own PAs. This project made a training pack, with a DVD. For people with learning disabilities to have control over their lives, the quality of their support staff matters. This paper reports on an inclusive research study, which used video analysis to study the communication skills of personal assistants (PAs) who worked with people with learning disabilities. The findings reveal some of the fine detail in the strategies these PAs used, to show respect, support choices, and give advice. They were able to step back, to listen and observe the person with learning disabilities, and to use good, open body language. They also gave people time, built up a close relationship based on shared interests and activities, and they talked with people in a friendly, adult way. It is difficult to support people to manage their lives, and team work is important. People with learning disabilities also have to play their role in the relationship. This research produced training materials that will help people with learning disabilities to train and support their own PAs. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning difficulties have been involved in research that asked them to tell their stories about how they support (help) each other., There were many times when people had helped each other in lots of different ways., People talked about times when they had listened to each other and helped each other when things were hard. They also spoke about working as a team and helping each other to learn., Supporting each other can make life better for people with learning difficulties and help to break down the barriers., Summary Mutual Support, a model of peer support by and for people with learning difficulties, was constructed through a participatory research process. The research focussed on individual narratives from people with learning difficulties. These narratives were then brought together to form a collective model of support. This paper outlines the detailed research process and positions the collective model of support within the self-advocacy and involvement movements. Direct quotes from people with learning difficulties illustrate the different aspects of the multifaceted model. The positive effects of Mutual Support, which form the basis of the implications for wider policy, theory and practice, are also outlined. These include people being able to participate more fully; ambitions being fulfilled; people who have been mentored becoming mentors themselves; and dignity and respect being reclaimed. The overall argument is that, as an example of empowerment through participation, peer support by and for people with learning difficulties has emancipatory potential. [ABSTRACT FROM AUTHOR]

Accessible summary • This article is about cooperation between Eygló Ebba Hreinsdóttir and Gudrun Stefánsdóttir in an inclusive life history research project. • The article is also about the time they spent together in an institution in Iceland, Gudrun as a staff member and Ebba as one who lived there for many years. • Ebba has good and bad memories from the institution. The bad memories are mostly connected to the label ′mentally retarded′ and memories of being lonely, isolated, angry and sad. • Ebba had mixed feelings about finding some good memories from the institution but through participating in a life history project, looking at old photos and writing this paper, she has found out it is important to remember the good times also. • The good memories from the institution are connected to events like friendship, looking after children, the Icelandic Independence day, Christmas, rewards for swimming and many other events. This article was first written as a presentation to the International Seminar held at the Open University in July 2008. It is based on cooperation between two women, Eygló Ebba Hreinsdóttir and Gudrun Stefansdottir, one who lived at an institution and another who worked there. Ebba moved to an institution in 1969 when she was 19 years old. Gudrun started to work at the same institution a few years later when she was 16 years old as a summer girl as we were called in those days. After Ebba moved from the institution, they did not have contact for many years, but since 2003 they have worked closely together on an inclusive life history project. They use life history materials to talk about their different experiences of spending time in an institution in Iceland in the 1970s. It is based on tape-recorded conversations between them and work in the Icelandic women’s history group which they both participated in for 3 years. They also used old photographs from the institution that helped them to recall their memories from the institution. The article has two main objectives. The first objective is to reflect on the research cooperation between Ebba and Gudrun; how it started and how it has influenced them. The second objective is to reflect on their different experiences from spending time in an institution in Iceland in the 1970s. [ABSTRACT FROM AUTHOR]

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

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]

My name is Paul Christian. I am a Black British man with learning disabilities. The lives and experiences of Black people with learning disabilities are under ‐ represented in the UK history of learning disability. This article explains my involvement in activism to change this and shares the learning from these projects. It discusses the process of co‐writing and why research is needed to record and share the experiences of Black people admitted to the former institutions and the importance of accessible information about Black history, race and racism. Accessible summary: My name is Paul Christian. I am a Black British man with learning disabilities.We do not know much about the lives of Black British people with learning disabilities in the past. This article explains work I have begun to change this.It describes three pieces of activism in support of the Black Lives Matter movement. It shares learning from these projects and ideas for next steps. It tells the story of how I met Sue my co‐author and explains how we wrote this article together.This study is important because it shows more research is needed to understand the experiences of Black people admitted to long stay institutions. It demonstrates how people with learning disabilities are coming together to learn and talk about Black British history, discrimination and race, and to take action to stop racism. It encourages people interested in co‐writing to try it out. [ABSTRACT FROM AUTHOR]

Accessible Summary: We are a team of academic researchers, people with learning disabilities and carers. We worked together to design training materials for people with learning disabilities and carers to work as co‐researchers on research projects.The training was for doing a type of research called ethnography. When you do ethnography, you spend time with people to learn about their lives.In this article, we describe what we did and what we learnt.We think more people with learning disabilities and carers should be involved in research but many do not have the confidence to do it. Training can help with that.We also think that ethnography is a type of research that can be easier to do than other types of research. This is because ethnography uses the skills lots of us already have the following: watching, listening and talking to people. Background: There is a strong ethical case and an urgent need for more participatory research practices in disability research but a lack of resources to support this. It is important to involve people with learning disabilities and carers at all stages, including when designing training for co‐research. Methods: We co‐developed training materials to support people with learning disabilities and carers to work as ethnographic co‐researchers and for academic researchers to facilitate co‐research. We focused on what people with learning disabilities and carers thought was important to learn. Findings: Whilst not all types of research methods are easy to democratise, ethnographic observation is a research method that lends itself well to participatory co‐research. Conclusions: For people to be able to meaningfully participate, research processes need to become more accessible and transparent. Training that considers the needs and priorities of people with learning disabilities and carers and addresses the confidence gap is key for meaningful co‐research. [ABSTRACT FROM AUTHOR]

Accessible Summary: ●Lisa Scott became an artist after she joined a supported studio in Sydney, Australia.●The studio is like her second family, and the staff have always told her 'you can do this'.●Lisa is proud that she is an artist and likes being able to share her work.●Lisa made an artwork about her life story and some big changes she has experienced. Background: Over 10 years ago, Lisa Scott first began making art at a studio in Sydney that supports people with intellectual disability to realise their creative ambitions. In this article, we consider what it has meant for Lisa to become an artist and, in the process, share the story of other big changes in her life. Methods: During audio‐recorded conversations, we discussed Lisa's life story and the role of her creative practice within it. We worked together to write about some of the things we discussed. Findings: Becoming an artist has been an important transition for Lisa. With the support of staff at the studio, she has realised what she is capable of, and so have other people—from her family to complete strangers—who all value her work. Through her art, Lisa has been able to find personal relief and reflect on big changes in her life, including the loss of her mum. In a dress hand‐stitched with words from her journals, she has explored another way of sharing her story. Conclusions: Art at its best forges connections between people. Lisa's art and life are evidence of this. [ABSTRACT FROM AUTHOR]

Accessible Summary: People with disabilities have the right to use patient‐reported outcome measures (PROMs) to tell their doctors and therapists what they think and feel. Therefore, PROMs need to be accessible for people with disabilities. This means that the questions and the response choices for the questions need to be easy to understand. Response choices can be words like, "yes" and "no," or "agree" and "disagree," or "easy" and "hard."To make sure that the response choices are easy to understand, it is a good idea to collaborate with people with disabilities when designing PROM response choices, or response scales.We describe how we worked with 8 young people with disabilities to make an easy‐to‐use response scale for a PROM.After our data collection and work together, we decided the best response scale was "very easy," "a little easy," "a little hard."This research is important, because other researchers and people making PROMs can use our process to help make their response scales easy to use. Background: Patient‐reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users. Methods: In collaboration with eight youth co‐researchers with intellectual/developmental disabilities ages 14–21, we used an iterative, three‐stage approach to develop and select a response scale for the PEDI‐PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (n = 62); and 3) Analysing data to refine response options. Results: Through two cycles of the three‐stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard"). Conclusion: An inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co‐researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects. [ABSTRACT FROM AUTHOR]

Accessible summary: Feeling alone and not connected to other people where you live affects many people and especially people with a learning disability. The government and the newspapers are talking a lot about this, they want to understand who is affected and what can be done.Our group did a research project to find out some of the things that stop us getting involved in local places with local people where we can make and keep friends. The people in the research project mainly lived independently and did not use learning disability services, so needed to use local community organisations.Pictorial cards, made by one of the group members, using photographs were used to sort out all the things we talked about into groups. These included transport, fear and anxiety, limits on our choice and control, risks and personal safety.We then talked about what could be done, this included more easy read information, so people know what is available locally, more support to go to places and advocacy to get involved. There also needs to be better community safety including more Safe Places in the community. Background: Social isolation is an issue that affects many people and especially people with a learning disability. There is an association between social exclusion and feeling lonely, an issue currently highlighted as a growing concern which needs to be addressed both in the media and by the government. Methods: The Building Bridges Research Group do inclusive research projects about the issues that are important to them. Over the summer of 2018, the research group undertook an inclusive research project to identify some of the specific barriers that prevent community inclusion and the opportunity to develop friends. The people involved mainly lived independently and did not use learning disability services, with the exception of evening clubs, so needed to use universal services. Results: Pictorial cards, made by one of the group, using photographs were used to organise the data into themes. These included transport, fear and anxiety, limits on choice and control, risks and personal safety. Conclusion: The inclusive research design enabled people with a learning disability to contribute to all stages of the research project, from identifying the issue, gathering data, the analysis and writing up. They also made suggestions of ways to increase social networks, friendships and well‐being and so decrease loneliness. These include more access to easy read information, more support and advocacy and measures to address community safety including a wider roll‐out of the Safe Places scheme. There also needs to be further research undertaken with other people with a learning disability in different areas to widen the understanding of the impact of these barriers on people's lives. [ABSTRACT FROM AUTHOR]

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

Accessible summary Many researches now include people with learning disabilities, which is really positive, but people with profound and multiple learning disabilities are often left out., It is important to include people with profound and multiple learning disabilities in research to make sure all voices are represented., This article talks about how a research method called photovoice can be used to include people with profound and multiple learning disabilities., Abstract Background: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of people with learning disabilities is a welcome and much needed change. While there has been many valuable inclusive researches carried out in the past 10-15 years, much of this research has included people with mild and/or moderate learning disabilities. Far less published research has included people with profound and multiple learning disabilities. Materials and Methods: This research article outlines how the visual method 'photovoice' can be successfully used to include people with profound and multiple learning disabilities in the research process. Results and discussion: It is argued that inclusive research is often limited by the choice of research methods, which result in the exclusion of people with profound and multiple learning disabilities from the research process. The article advocates a mediated and flexible approach to inclusive research that embraces and supports the needs of all involved. A practical example of photovoice research with people with learning disabilities demonstrates how this can be achieved. Conclusion: When planning inclusive research, researchers should be mindful of both the variety of needs that people with learning disabilities can bring to the research process and the need to tailor methods to these needs. Such action requires a flexible approach to the inclusive research process. [ABSTRACT FROM AUTHOR]

Accessible summary • We have set up a group at our service who are doing research. • We decided on three things that were important to us to find out about: relationships, transport and holiday breaks, and personal social histories. • In this article we write about relationships. • We have shared stories, talked with other people and have made plays to get people to think about relationships and leaving home. • We have also gone on national radio to talk about this issue [ABSTRACT FROM AUTHOR]

Accessible summary In this article, we shall be talking about how a group of people with learning disabilities and therapists came together to make a questionnaire about feelings., We adapted a questionnaire called Clinical Outcomes in Routine Evaluation - Outcome Measure to make a version that was useful for people with a learning disability who go to therapy for help when they are feeling particularly unhappy., We wanted to help people with a learning disability and their therapists find out if the therapy was helping. This is called practice-based evidence. The NHS now demands that all treatments can show that they work., We were all new to research, and we will describe how we developed ways of working together that meant everyone could contribute. This is called inclusive research. This was necessary because we all had different experiences that were valuable to the research and that we wanted to share. In particular, we wanted to find out how the experience of living with a learning disability affects feelings so that this could be included in the questionnaire. Inclusive working was important to make sure the questionnaire made sense and was easy to use for people with a learning disability., We will discuss how we made the questionnaire, called Clinical Outcomes in Routine Evaluation - Learning Disabilities, and how we carried out tests to find out if it was a good, reliable measure that showed how people's feelings changed over time when they received therapy. This is called psychometric testing., Finally, we summarise the results of the psychometric testing and discuss what will happen next., Summary Psychological talking therapies are increasingly being sought by people when they are experiencing emotional difficulties. This is just as important for people with a learning disability as the general population but as with other services for this population, inclusion for therapy lags behind that of mainstream services. Similarly, tools for assessing the effectiveness of therapy for people with a learning disability are often limited and do not fully take account of the impact that living with a learning disability may have on peoples' feelings and sense of well-being. It was for this reason that we, the authors of this article, a Dramatherapist and Specialist Counsellor got together with initially eight but subsequently five people with a learning disability to develop an outcome measure that would be accessible and have meaning for people with a learning disability. Clinical Outcomes in Routine Evaluation - Outcome Measure ( Evans et al. J Ment Health, 2000; 32, 144; Barkham et al. 1998) was selected as the measure to be modified and developed, as it was already a validated tool, was in widespread use across the country and was suitable for use across a whole range of therapeutic approaches. This article describes how inclusive research has been a key component in developing and psychometrically testing Clinical Outcomes in Routine Evaluation - Learning Disabilities. Using an outcome measure that is sensitive to the needs of people with a learning disability is a vital step towards providing evidence upon which best practice may be established. [ABSTRACT FROM AUTHOR]

•Transition means growing up and becoming an adult. There are a lot of changes and choices for young people at transition.• We found out what information young people, their families and supporters need at transition.• Young people with learning disabilities from North Somerset People First did the project with other researchers. This article provides an overview of the methods and findings of a project, commissioned by the Social Care Institute for Excellence, to explore the information needs of young people with learning disabilities, their families and supporters at transition. It describes how a group of young people with learning disabilities were trained in research methods and undertook four focus groups with other young people with learning disabilities in England and Wales. Parallel focus groups involving their parents and supporters were conducted at the same time, facilitated by a family carer and professional respectively. The different kinds of information required are summarized: for example, all three groups wanted information about getting a job and going to college and about the transition process generally, but there were also differences in emphasis between the groups, which are described. Key issues in providing information at transition in ways likely to be most accessible to the different stakeholders are outlined. [ABSTRACT FROM AUTHOR]