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Background: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence‐based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. Methods: The Sexual Health Equity Project team used a Community‐Based Participatory Research approach to develop a four‐module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. Results: The resulting sexual consent intervention, Ask Me First—Choices, is comprised of four modules covering topics including definition of sexual consent; decision‐making strategies and practice; communicating consent and refusal, identifying situations of consent and non‐consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. Conclusion: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence‐base of sexuality education for adolescents with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Background JARID has a long and positive association with qualitative research dating back to its first issue. This paper looks at the development of qualitative methods and their application in the field of intellectual disability (ID). Method When invited to make a contribution on qualitative research for the 25th Anniversary of JARID, the present authors considered the options. We examined the frequency with which qualitative studies have been published in three major intellectual disability journals over a decade, and we considered attempting a systematic review or a meta-synthesis. Results The volume of published studies has increased, but there were too many across a diverse range of topics for a systematic review of qualitative research in general; but not enough for a systematic review or meta-synthesis with a particular focus. However, there were many issues that needed to be aired. This paper therefore contains some critical reflections on the use of qualitative methods. Conclusion If we want to hear the voices of people who have ID then we need appropriate ways to do this. Qualitative methods are playing an increasing role in bringing the unknown about people who have ID into the known. The approach plays a valuable role in informing us about the experiences and lives of people who have ID. However, we have identified many methodological issues which will need to be further explored. At the same time, we need to develop methods to enable increased participation of people who have ID in some aspects of research. The participatory paradigm is more established in qualitative approaches as it lends itself to participation in generating research questions, developing interview questions, conducting interviews and even stages of the analysis. There are clearly areas that need to be addressed by trained researchers and the whole process will need some facilitation and support. Writing up for journals is one aspect that could be very problematic: so other forms of dissemination need to be explored. [ABSTRACT FROM AUTHOR]

Background While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Materials and methods Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Results Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Conclusions Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. Accessible Abstract This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences., Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard., Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen., Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished. [ABSTRACT FROM AUTHOR]

Background The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. Method A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. Finding Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. Conclusions A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. Accessible Abstract Background Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. Method The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. Results There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills. Conclusions In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another. [ABSTRACT FROM AUTHOR]

Background This paper tells the story of Central England People First's ( CEPF) History Project. Method This was an inclusive research project, owned and controlled by members of CEPF which sought to chart its 21-year history, 1990-2012. Results It illustrates both the strengths of such a project and some of the challenges. Conclusion It concludes that using inclusive research methods enabled the story to be told, but that it was less successful in addressing questions about why the organization grew and prospered in the 1990s, only to struggle in its later years, and what this tells us about the conditions which enable self-advocacy to flourish. The paper was collaboratively written by the CEPF History Project team and an academic ally. Different fonts differentiate the contributions, although it is acknowledged that lots of the ideas were shared. Accessible Abstract This paper explores issues in telling the history of self advocacy using inclusive research methods. It explains how and why CEPF recorded its history, what we found out, and some of the questions we have had to think about: whose voices we hear, what to include, what to leave out, what parts of the research people with learning difficulties can do, what self advocacy means to different people, how to make use of research other people have done., It raises some new questions about directions for inclusive research. The Paper was written by the CEPF History team - Craig Hart, Ian Davies, Angela Still and Catherine O'Byrne - working with Jan Walmsley. We wanted to make it clear what were Jan Walmsley's ideas and what were our ideas. We have done this by writing our ideas in a different font. BUT lots of the ideas belong to all of us. [ABSTRACT FROM AUTHOR]

Background There is comparatively little published research that transparently charts the contribution of people with an intellectual disability to a collaborative research process. This paper illustrates the process of data analysis in a project located within the Emancipatory Disability Research ( EDR) paradigm. Materials and methods Textual data was made available from a participatory action research project involving young people who have Down syndrome. A university based researcher analysed a portion of the data set using thematic networks with the participation of co-researchers in iterative cycles of reflexivity. Results The participation of the co-researchers is demonstrated and a global theme, deduced from the collaborative analysis, is described. Conclusion Authentic participation of co-researchers in the data analysis stage of the research process is an example of 'inclusive research' and assures adherence to the principles of EDR in informing the theory and practice of social inclusion for young adults with an intellectual disability. Accessible Abstract Background There are not many research projects which include people with an intellectual disability in data analysis. This paper tells the story of how a small group of people with Down syndrome called co-researchers, joined in analysing data from their peers in a research project. Materials and methods The co-researchers worked in a group. They took some copies of typed up interviews, underlined words and made notes on parts of the interview they found interesting and important. Results Through their work, the co-researchers found that being involved with other people and having friends is important but can be hard sometimes. Conclusion This work is important as it shows the abilities of some people with Down syndrome in data analysis work. The co-researchers were included in research that is about themselves and other people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background Inclusive research teams typically describe their experiences and analyse the type of involvement of researchers with disability, but the process of building research teams and the need for research training still remain underexplored in the literature. Materials and Method Four researchers with intellectual disabilities and four academic researchers developed an inclusive research team. The team conducted 15 research training sessions, focused on investigating the well-being of older women with intellectual disabilities. They used mobile technology to support research skills acquisition. Results Findings included the experiences of all team members regarding the team building during training. Conclusions To become an effective inclusive research team, all team members, regardless of ability, need to bring their own experiences and also learn necessary research skills. This paper highlights the need for team building, joint research training among all members of the research team and strategies supporting the peer-mentoring within the team. Accessible Abstract We are a team of four researchers with intellectual disabilities and four academic researchers without an intellectual disability. Our aim has been to learn about research together. We want to do this so that we can carry out a research project together about how older women with intellectual disabilities live. We have decided to call our team 'Welcome to our Class'. We have been working together for 9 months. In this time we have had 15 research training meetings. We have learned What research is, How to work out a research question, that is what we want to find out about, How to get information on what we want to find out. Here we thought of interview questions we could ask older women with intellectual disabilities., We are now meeting once a month, and have just begun our research on finding out how older women with intellectual disabilities live. We are now starting to use what we have learned. [ABSTRACT FROM AUTHOR]

Background Funding bodies in Australia and the United Kingdom require research on issues that affect the lives of people with intellectual disability to be inclusive. Debate continues about the nature and benefits of inclusive research, which has become an umbrella term encompassing a broad spectrum of approaches. Method This study proposes one method of inclusive research, the 'collaborative group' approach. It examines the processes used to conduct a study involving academics and self-advocates, presenting findings derived from an inductive analysis of field note data, interview and meeting transcripts. Results Five components are identified: shared and distinct purposes of participants equally valued, shared involvement and distinct contributions equally valued, flexible, adapted research methods, working as a group with trusting relationships and dispersed power, and scaffolding for inclusion. Conclusions This collaborative group method potentially results in better research than either academics or self-advocates could achieve alone and has multiple knowledge outcomes with differing accessibility and complexity. Accessible Abstract Background When people with an intellectual disability and researchers from universities or other organisations do research together it is called inclusive research. People have worked together on research for a long time but there are still some questions about why we should do it and the best way to do it. Method This paper talks about one way of doing inclusive research that the people who wrote the paper call 'collaborative group approach'. They did a big project with a group of people with an intellectual disability and talked and thought a lot about what they were doing. What they found out. There are five parts to working this way; (i) Having some of the same and some different reasons for doing the research (ii) Doing some things together and doing some things apart (iii) Being able to change things as you go so people can do what they want to do and are good at. (iv) Knowing each other well and being able to work together equally. (v) Thinking about the way you work all the time to make sure people are doing what they are good at and what they want to do. Conclusion If people work this way it might lead to better research and understanding about the lives of people with an intellectual disability. [ABSTRACT FROM AUTHOR]

An editorial introduction to the January 2014 issue is presented, focusing on its central theme of inclusive research within intellectual disabilities studies, citing contributions by Iva Strnadova, Christine Bigby, and Patricia O'Brien.

Background Person-directed planning ( PDP) is an approach to planning supports that aims to redistribute power from the service system to individuals with intellectual and developmental disabilities ( IDD) and natural supports, improve relationships and build community. To do this, the right people with the right attitudes engaging in the right actions are needed. This paper examines how key elements in PDP contribute to successes in planning. Materials/Methods Researchers worked with three planning teams from different community service agencies using participatory action research techniques (i.e. free list and pile sort, Socratic wheel, whys/hows exercise). Results Most key elements of PDP were relevant to each team. Perceptions of which had most contributed to planning successes differed. Conclusions The various elements of PDP are used by and useful to planning teams, although some may be more relevant to some successes than others because of specific goals, or the person's strengths and needs. [ABSTRACT FROM AUTHOR]

Background Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. Methods In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. Results and conclusions The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. Accessible Abstract This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in working together and plan to work more to make this type of research happen. [ABSTRACT FROM AUTHOR]

Background Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using Participatory Action Research (PAR) to develop this tool. Materials and methods Participator Action Research provided the indicative framework for the process of developing a software tool that is likely to be used in practice. Results People with intellectual disability worked alongside researchers to produce an accessible, flexible piece of software that can facilitate storytelling around loss and bereavement and promote spontaneous expression that can be shared with others. Conclusion This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs. [ABSTRACT FROM AUTHOR]

Scholars have called for research approaches that actively include and are driven by people with intellectual disabilities, but the process of inclusive data analysis has been scarcely documented in the literature. This paper demonstrates the process university researchers and a group of self-advocates used to analyse and interpret data collected during a participatory action research (PAR) project to increase the group's capacity for self-advocacy. University researchers presented numerical data in three visual formats for analysis. Seventeen People First members analysed and interpreted the data using a modified focus group approach. All members participated in data analysis, but not all members participated in data interpretation. Members' interpretations suggest that the group felt an increased sense of empowerment and heightened awareness as a result of their increased capacity to run a meeting and involvement in the PAR cycle of action and reflection. Findings suggest that strategies such as visual representation of data, group analysis, and familiarity with data collection tools foster an inclusive process of analysis and interpretation. [ABSTRACT FROM AUTHOR]

Background: Young adults with intellectual/developmental disabilities and co‐occurring mental health conditions (IDD‐MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. Methods: We conducted exploratory research to develop a PM intervention for young adults with IDD‐MH by partnering with 3 young adults with IDD‐MH and a seven‐member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. Results: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship‐ and outcome‐driven actions to operationalize a mentee‐centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. Discussion: Findings are aligned with previous research on PM. [ABSTRACT FROM AUTHOR]

Background: Inclusive research is studied mainly in short‐term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long‐term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. Method: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. Results: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. Conclusions: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background Cognitively impaired patients often present poor oral health status that may be explained by ethical tensions in oral healthcare management. This participatory study explored such tensions among adults with intellectual disabilities and with caregivers. The second objective was to specify, with caregivers, the points that should be developed in a future study among dentists. Materials and Methods Three focus groups involving adults with intellectual disabilities, family caregivers and professional caregivers were organized in France in 2013. Results The thematic content analysis identified discrepancies between experiences and expectations, which were particularly marked for the dentist's competence and attitudes, the dentist's role in decisions, the dental care management and the French socio-political context. Conclusions These discrepancies could partly explain multiple attempts to find the 'right' dentist or the fact that care was abandoned, and could at least contribute to oral health needs being unmet. [ABSTRACT FROM AUTHOR]

Background The role of the support worker in self-advocacy groups for people with intellectual disability is pivotal in setting the scene for empowerment. However, despite the growing importance of the role, it has attracted very little scrutiny. Method The study developed an inclusive team approach working alongside researchers labelled with learning difficulties. Emphasis was placed on making all aspects of the research cycle accessible to the team. A variety of qualitative methods were used. Results Despite supporters' allegiances to disability equality and their emphasis on reflexivity, many crucial aspects of organizational practice and support remained hidden. However, an emerging shared narrative about the potential of people first implied the possibility of increased collaboration. This was evidenced in some of the groups. Conclusions Where problematic practice was discussed, supporters were open to developing alternative approaches. Acknowledging members contributions alongside the work of their supporters helped nurture more collaborative relationships. Accessible Abstract A lot of accessible methods were used to find out what was happening. Much support work is hidden away and not listed by organisations. The supporter role is very complex where supporters are managed by members. Supporters may find ways to hold on to power even when they say they try not to. There were some good ways seen for members and supporters to work together fairly. The writer talks about working in a team with researchers with learning difficulties. The study concludes that we can all learn from each other. [ABSTRACT FROM AUTHOR]

Background Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. Materials and Method This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Conclusions Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. [ABSTRACT FROM AUTHOR]

Background Typically people with intellectual disability have small, highly restricted social networks characterized by interactions with other people with intellectual disabilities, family members, and paid workers. The goal of ‘inclusion’ has been central to policies that have shaped services over the past 30 years. It is an ill defined concept with disagreement about its meaning, the problems it seeks to overcome and how it should be realized. Method Ethnographic and action research methods were used to support and collect data on the implementation of a programme, known as the Community Inclusion Framework, in a group home for five adults with severe intellectual disabilities in Victoria, Australia. Results and Conclusions A pattern of service delivery based on community presence rather than participation evolved and endured over 16 months. The findings show that most staff attached a different meaning to inclusion from that proposed in the Community Inclusion Framework, disagreed with the proposed meaning or felt these residents were too different for it to be meaningful. This suggests that priority will only be accorded to activities that lead to inclusion if staff are convinced of the veracity of this and given strong and consistent direction and support. [ABSTRACT FROM AUTHOR]