Inclusive Research Project Research Articles

Our Recipe for Good Inclusive Research

Co-researchers with intellectual disabilities and a Ph.D. student formed an inclusive research team. The co-researchers joined the inclusive research team so they could learn more about research and have control over the research. Our team have held regular research skills meetings. The focus of these meetings was getting to know each other and learning what each person brought to the team, as well as learning what inclusive research is and how to conduct research together. Learning these things has helped to design and undertake an inclusive research project about pets for people with intellectual disabilities. In this article, our team shares our experience of conducting inclusive research. We have learnt that each team member brings their own strengths to the team and we have connected and formed friendships. We completed an inclusive research project and found there were some challenges our team had to overcome. We conclude that people with intellectual disabilities are capable of leading research. Being part of an inclusive research team enables co-researchers to show others what they can do. Sharing what our team has found out can help others to conduct inclusive research.

Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change

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

Reflections on the Implementation of an Ongoing Inclusive Research Project

This reflective piece is co-authored by four members of an inclusive research team, who have been working on a project that aims to create an online resource with a video curriculum vitae of individuals with intellectual disability to showcase their achievements and skills. Taking the view that conducting research inclusively is a dynamic and ongoing process, we discuss our experiences in implementing the project and the steps we took to ensure that the process was as inclusive as possible. We first present an overview of the aims of the project and what we have achieved so far. We then provide our individual perspectives on the experience of being involved in the project so far and how inclusive it has been. Together, we then reflect on the main outcomes of the project so far, on the factors that affected how we implemented it, and on how we plan to work towards the last phase of the project.

On the Road Together: Issues Observed in the Process of a Research Duo Working Together in a Long-Term and Intense Collaboration in an Inclusive Research Project

Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required.

A Closer Look at the Quest for an Inclusive Research Project: ‘I Had No Experience with Scientific Research, and then the Ball of Cooperation Started Rolling’

The original adage of the movement of people with disabilities ‘Nothing about us without us’ is fortunately more and more adopted in the research world. There is, for example, increasing recognition of the importance and value of actively involving people with intellectual disabilities in research projects on topics that are relevant to them. In a current doctoral research project, a co-researcher with an intellectual disability was recruited to work together with the doctoral researcher. Now that this project is nearing completion, it is time to look at some aspects of their collaboration and see what we can learn from this process. In several (joint) meetings, the researchers reflected on their personal experiences with working and researching together. Our reflections are presented using three overarching themes: preparations for the collaboration, collaborating as a complex process, and conducting research together. The discussion focuses on what can be inferred from these personal experiences with regard to the following three topics: how inclusive research can be organised best, the possible benefits of the collaboration for the researchers involved, and the possible impact of the collaboration on the quality of the research.

Inclusiveness Plus Mixed Methods: An Innovative Research Design on Transnational Practices of Older Adults.

This paper assesses the challenges and the benefits of 2 methodological approaches for improving the study of transnational mobilities of older adults: mixed methods and inclusiveness. The first approach refers to a mixed-methods research design based on surveys and qualitative interviews. We share our experience of conducting a "fully mixed-concurrent-equal-status-design" research project, for which we collected data through quantitative surveys on transnational practices of people aged 55+. Furthermore, we conducted semistructured interviews with adults aged 64+ living or who have lived in Switzerland and spend part of the year in Spain. The second approach relates to the use of an inclusive sample diversified in terms of nationality and migration backgrounds. The inclusive design affects the formulation of questions asked to all participants (and the response options provided in the survey), as well as decisions related to language choices and translations. These elements have to be considered to ensure that older adults from different backgrounds feel included. In a research project on transnational mobility of older adults, conducting an inclusive plus mixed-methods research project pushes researchers to find strategies to balance research objectives with available resources. Maximizing the research team's methodological background appears to be a suitable approach to address different population groups while working within a budget.

Autism Spectrum Disorder (ASD) and the Family Inclusive Airport Design Experience.

The literature on air travellers with psychiatric disorders is limited. This perspective article highlights various travel-related aspects of autism spectrum disorder (ASD). The airport experience can be stressful for families of children with autism spectrum disorder (FwASDs). The aim of this study was to explore the airport experience of FwASDs using the value co-creation process approach to assist airport managers in designing improved experiences for this specific passenger segment. This study responds to the current climate in which airports are developing awareness programmes in relation to children who require special assistance at airports. The prevalence of children with ASD is 1/68. While a number of airports throughout the world have adopted procedures addressing the needs of those with cognitive impairment, these advances are far from universal. As part of an academic–industry collaboration between Vueling airlines and the Spanish airport operator Aena, 25 FwASDs took part in an inclusive airport research project in the city of Barcelona from November 2015 to April 2016. Employing a qualitative methodology that incorporated focus groups, ethnographic techniques, and post-experience surveys, the study contributes to extending the body of knowledge on the management of the value co-creation process for challenging passenger segments within the airport context. The study explains how ensuring adequate resource allocation to this passenger segment can improve the family-inclusive design of the airport experience and offers managerial recommendations.

Building a research team and selecting a research topic within the process of an inclusive research project in Spain.

In this paper, we illustrate the extent to which building an inclusive research team and the selection of a research topic, based on a collaborative group approach, constitute key elements of inclusive research. The selection and analysis of activities and methodological strategies, extracted from the recordings of the research meetings, offer clues about the creation of collaborative and deliberative research spaces. Some of the elements that reaffirm the inclusive nature of this research are as follows: contributions by all members of the research team receive equal recognition, the particular interests of all of those involved are taken into account and research strategies that are supported in different languages encourage the participation of all researchers. We need to review our practices in order to identify the added value of this type of work and move towards research training proposals that promote the research ownership of people with intellectual disabilities.

The importance of social relationships and loneliness: An inclusive research project in Spain

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. AbstractThis 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.

Afraid to leave the house: issues leading to social exclusion and loneliness for people with a learning disability

PurposeTackling social exclusion, which can lead to social isolation and loneliness, is an important current issue. People with a learning disability have a right to be full members of their communities, yet often experience social exclusion. Community connections play a key role in people developing reciprocal relationships. It is therefore important to know the barriers to full inclusion. The paper aims to discuss this issue.Design/methodology/approachThis paper builds on an inclusive research project exploring these issues (Mooney et al., 2019) and aims to place that study’s main findings in a broader academic, policy and practice context.FindingsWhilst there is a wide range of literature about social exclusion, lack of friendships and loneliness experienced by people with a learning disability, there is a gap in knowledge regarding some of the specific social barriers that prevent wider social inclusion, and therefore opportunities to make and keep friends.Originality/valueThis paper relates the findings of an inclusive research project to the current literature. It identifies the social barriers that limit community involvement and draws on the experience of people with a learning disability to find possible ways forward.

Getting involved in the community—What stops us? Findings from an inclusive research project

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. AbstractBackgroundSocial 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.MethodsThe 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.ResultsPictorial 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.ConclusionThe 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.

Views on Sex Using the Nominal Group Technique to Explore Sexuality and Physical Intimacy in Individuals with Intellectual Disabilities

Individuals with an intellectual disability (ID) have sexual feelings, are sexually active and have ideas about sexuality. There is limited information available about the ideas and experiences regarding sexual expression, interests and knowledge of sexual rights in this population. This study aims to identify the ideas, expressions, barriers to sexuality, experienced by people with IDs, using the Nominal Group Technique (NGT). The NGT was used to explore the views of people with mild ID on sexual needs and issues. NGT is a structured and specific form of focus group research. It is a ‘single-question’ technique that combines quantitative and qualitative methods of data collection for relatively small groups. NGT involves four steps: silent generation of ideas, round robin recording of ideas, clarification of ideas, and ranking of ideas. It was an inclusive research project: people with an ID were involved in the design, planning, performance, and analysis of the study. In total 39 people with mild IDs were able to explore their experiences and ideas on sexuality. They were able to answer questions like: What are their needs? What are their problems? They were capable of expressing their views, needs and barriers on sexuality and sexual rights. The most important items were the relationship between two people (47%), sex and sex related subjects as sex education (23%), and feeling safe and comfortable (10%). People with mild IDs are capable of expressing their views on sexuality and sexual rights. The participants stated that they need support in achieving these rights. The nominal group technique appears to be an appropriate methodology on sensitive issues as sexuality and sexual rights.

Our Homes: An inclusive study about what moving house is like for people with intellectual disabilities in Ireland

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

Making decisions together? Exploring the decision-making process in an inclusive research project

This article explores the decision-making process with a group of people with learning difficulties in an inclusive research project. The article explores the literature around people with learning difficulties and decision-making, drawing in particular on studies using conversation analysis. Three examples drawn from the research process and illustrated by transcripts of video data are then examined critically to unpick the author’s claims of collaborative decision-making.

Effective inclusive teacher education for special educational needs and disabilities: Some more thoughts on the way forward

This study sought to identify the principles and practices underpinning effective inclusive teacher education for special educational needs (SEN) in ordinary schools through an inclusive action research project. The findings demonstrate that where practitioner development involves critical-theoretical, reflexive, research-oriented collaborations among a professional learning community, practitioners become more confident and skilful in enacting inclusive practice. This community was formed in the context of a school-university partnership and included pre-service teachers, experienced teachers, teaching assistants and university tutors. Its findings cast serious doubt over the efficacy of de-intellectualised, ‘on the job’ training models favoured by policy makers in England and elsewhere.

Being researchers for the first time: reflections on the development of an inclusive research group

Accessible summary A group of people with a learning disability joined a group to talk about their lives Being part of it was important, and they have continued as a research group The group gives the members a voice and it helps them to know other people have similar issues to deal with. It has also shaped their identity – how they feel about their lives and themselves. SummaryMoney, Friends and Making Ends Meet was an inclusive research project; it enabled a group of people with a learning disability who do not receive specialist support services to explore their own lives. This group are often labelled as having a mild learning disability. The research project focused on the strategies they used to cope with day to day living, their experiences of poverty and the support received from their social networks and social capital. The group members found participation in the research project enabled them to have a voice, identify the social barriers in their lives and gave them support and confidence to take action about them and so resolve some of their difficulties. They also embraced the label of learning disability and wanted staff in front‐line services to be aware of this, so they had greater understanding and support. This article is written by the instigator of the research group, but with a central part written by the group members in their own words. It focusses on how participation in the research project had a major impact on the group members as they moved from individuals involved in a short term research project to an established research group with its own motivation and direction. The group has since received further grant funding to research the effects of the welfare reform on their lives, and some have completed a bespoke accredited course on doing inclusive research.

From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to devise educational interventions and assessment tools. Criticism has been levelled at studies that treat children with PMLD as objects of research rather than subjects to be consulted. Proponents of the latter view have attempted to redress the situation by exploring how personal experiences can be gleaned through adapted qualitative methods. Debate about methodology in the PMLD field tends to coalesce around these individualist polemics: either children with PMLD are positioned as incompetent and lacking voice; or researchers are positioned as lacking the appropriate tools to gain access to such voice. This paper offers an alternative position to the individualism of post-positivist/constructivist approaches, identifying the need for a critical and participatory approach that sees knowledge about children with PMLD as situated and co-constructed through regular and longitudinal interaction between the researcher, children with PMLD, and significant others. Context to this argument is provided by exploring the application of this approach to an inclusive education research project for a child with PMLD.

Telling the History of Self‐Advocacy: A Challenge for Inclusive Research

This paper tells the story of Central England People First's (CEPF) History Project. This was an inclusive research project, owned and controlled by members of CEPF which sought to chart its 21-year history, 1990-2012. It illustrates both the strengths of such a project and some of the challenges. 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. 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.

Involving service users in an inclusive research project

Involving service users in an inclusive research project

What Things Make People with a Learning Disability Happy and Satisfied with Their Lives: An Inclusive Research Project

We looked at the research that other people have done about what makes people with a learning disability happy and satisfied with their lives. Researchers call being happy and satisfied with your life 'subjective well-being'. They found out that having things like money and good health does not always mean people are happy. They also found that some people are really happy, even if there are things in their lives they would like to change. None of the people who have done research about 'subjective well-being' have interviewed people with a learning disability about what makes them happy with their lives. We have carried out a study about what makes people with a learning disability happy and satisfied with their lives. This report talks about the research that we did, and what we found out. We interviewed 20 people with a learning disability who said they were very happy and satisfied. We asked them about what things helped them feel like this. The people we spoke to said things like relationships, choice and independence, activities and valuable social roles made them feel satisfied with their lives. They told us about the things that enable them to lead happy lives, and the things that disable them. We also found out about the importance of personal characteristics. These are things like looking on the bright side of life or having ways to manage difficult emotions like sadness or anger. We found out that it is important for people with a learning disability to have good things in their lives, but it is also important to be enabled to access these good things.