Nearly 20% of the population has a disability. Despite this, mainstream research often does not explicitly address the methodological and practical issues that can act as barriers to disabled people’s participation in social research. In this book, Aidley and Fearon provide a concise, practical introduction to making it easier for everyone to take part in research.
Requiring no prior knowledge about accessible research methods, the book:
• explains how removing barriers to participation will improve the quality of the research;
• covers the research process from design, to collecting data, to dissemination and publication;
• includes checklists and further reading, as well as useful examples and vignettes to illustrate how issues play out in practice.
This book will be invaluable to researchers from a variety of backgrounds looking to increase participation in their research, whether postgraduate students, experienced academic researchers, practitioners or professionals.
The starting point for this book is the observation that current research methods and methodologies constitute potential barriers for disabled people to participate in research. It is our experience that, outside research explicitly focusing on disability, accessibility is rarely, if ever, seen as a concern in the research planning stage (see also Berghs et al, 2016). We both feel strongly that, as researchers, it is our responsibility to make research more accessible, both for ethical and methodological reasons, and we want to use our joint expertise to offer practical advice on steps researchers can take to ensure more people can participate, and more voices are heard.
In doing so, we want to make sure that this book is clear and accessible to researchers, particularly those not yet familiar with the current debates surrounding the definitions of and perspectives on disability. Thus, for readers with a background in disability-focused or adjacent research, most of the theoretical considerations in this book will be very familiar. Generally, however, our focus is explicitly on practical advice, and, while we will provide some introduction to key concepts, this will be kept brief. Instead, we will recommend additional sources where key concepts can be explored in the ‘Further reading’ sections at the end of each chapter.
This book comprises nine chapters. In this chapter, we give a brief overview of disability prevalence globally, and set out the ethical and methodological case for accessibility, particularly in relation to validity and research quality, and the benefits of conducting research in an accessible way.
This chapter examines how the recruitment process and communication with (potential) participants can be made more accessible. We provide recommendations on how to reach out more actively to disabled participants, discuss advertising and recruiting strategies, and deal with the question of how to access a population with specific needs that does not define itself as ‘disabled’. As part of the participant recruitment process we explore the issue of emotional labour provided by participants, and how this relates to issues of compensation for participation. Throughout the chapter we stress the researcher’s responsibility to communicate the (un)availability of accommodations proactively.
Before we start, however, we need to point out that the research setting includes not only the participant but also the researcher, and in this context we want to acknowledge disabled researchers. They often face substantial barriers in their workplace as ableism in academia is still prevalent (see, for example, Brown and Leigh, 2018; Inckle, 2018; Lourens, 2020). At the same time, interactions with participants are influenced by the researcher’s disability:
Felicity [Boardman]’s identity as a disabled person operated differently depending on whether she was interviewing non-disabled or disabled people. At times a “disabled identity” appeared to signal shared experiences, the “right” to research, and take on board the concerns and issues of disabled populations, providing her with “insider status”. (Brown and Boardman, 2011, p 25)
It is important to keep in mind that disabled researchers may also be dealing with barriers to access, and that we need listen to and believe them. Navigating multiple identities amid often disabling work and research environments is complex, challenging and highly individual – making it not just extremely difficult but also inappropriate for us to advise disabled researchers on how to manage their work and research environment.
In this chapter we discuss accessibility in the context of face-to-face research with people. This focuses mainly, but not exclusively, on qualitative research data collection.
The advice in this chapter covers choosing a suitable location, ensuring participants can reach the venue, closing and follow-up for the session, and ways to address accessibility issues in individual and group interviews. The guidance is based on the principles of Universal Design (UD) (see Chapter 2) and focuses on offering ways to participate that are flexible and that accommodate varying access needs. The aim is to make it as easy as possible for people to take part. The checklists in this chapter cover several eventualities, so some points won’t apply to every situation and others may not be feasible at the research location.
There are three important points to bear in mind:
This book gives generalised advice so plans can be made in advance. The most important thing is to check with and listen to participants, consider ways in which researchers can be flexible to their individual needs, and find solutions that work for both participants and researchers.
Make a back-up plan. For example, if someone can’t come to a face-to-face interview, they may be able to continue with a telephone or video interview.
If there is no choice about the location or the facilities that are available, it’s important to be realistic with participants about what we can and cannot do to facilitate access, given the constraints of the setting.
The guidance in this chapter is based on a combination of academic references, professional or patient group guidance for specific needs (see Appendix 2) and personal experience.
Following the previous chapter’s focus on face-to-face research methods, this chapter now focuses on research involving no direct face-to-face interaction with participants, such as methods conducted via email, the web, online video, phone or SMS. This chapter looks at some of the challenges and benefits of collecting data asynchronously or using technology that bridges the physical distance between the researcher and participant. It begins by giving general information about digital accessibility that is common across different forms of media, such as mobile devices and computers, and the remainder of the chapter looks at accessibility issues relating to specific types of data collection.
Note: technology changes rapidly, and rather than including specific techniques here, links to further information are given at the end of this chapter. This information is easy to find online or in the help and support pages for the relevant technology. At times, some of the information given here may seem quite technical and possibly overwhelming, but, for anyone working within an organisation, either IT support or disability services should be able to offer help with what is required. We also need to keep in mind that any technology used in our research will have to meet relevant legal requirements, such as data protection standards, and will be scrutinised by any ethics-approving body.
There are many benefits to online data collection, ranging from the green benefits of much lower carbon emissions,1 and less time needed overall of participants, to enabling participation from people in other locations and time zones. It means disabled people can take part when they might otherwise be isolated or not be able to participate (Tsatsou, 2020), and includes the opportunity for at-risk participants to participate in the safest form of social distancing.
In this chapter we explore the reasons why researchers use more than one data collection method in their research, and the potential benefits this can have for including disabled participants. We look at the use of triangulation, mixed methods and mixed media, and then go on to discuss the accessibility issues linked with a range of individual research methods
Triangulation1 refers to an approach that strategically uses more than one method, theory or researcher to collect and analyse data. The intended outcome is to derive a more consistent answer by validating the findings using more than one source. It can also mean analysing the same data with different methods, via ‘triangulation of data analysis techniques’ (Lauri, 2011). It can be used as an analysis strategy, where different members of the research team conduct analysis independently and then compare their findings, a tactic known as intercoder reliability (in qualitative research) or interrater reliability (in quantitative research) (O’Connor and Joffe, 2020). Crucially, triangulation is used to examine the same underlying concept or variable through different means:
The logic of triangulation is based on the premise that no single method ever adequately solves the problem of rival explanations. Because each method reveals different aspects of empirical reality, multiple methods of data collection and analysis provide more grist for the research mill. (Patton, 1999, p 1192)
However, it is not a given that the different approaches lead to consistent answers. Mathison (1988, p 15) argues that:
[i]n practice, triangulation as a strategy provides a rich and complex picture of some social phenomenon being studied, but rarely does it provide a clear path to a singular view of what is the case.
This chapter outlines how to write up and disseminate research findings and research resources. We discuss how to develop and disseminate information such as research data in a more accessible format, whether through conferences, publication as books or journal articles, or through public outreach in other formats.
In many ways, this chapter braids together the various strands of themes discussed so far. In Chapter 3 we mentioned that lack of transparency and lack of obvious benefit are some of the factors negatively influencing participants’ willingness to participate in research, and we suggested making research findings available to participants once the study has been completed. But we need to look not only at our current but also potential future participants: making findings available to the public, that is, not only through the usual academic channels, can help to make the research process more transparent and improve trust in the institution. In a sense, accessibility is about making research findings easy to find, and easy to understand, and we will talk about some of the ways in which that can be done. But we also talk about accessibility in the sense mostly used in this book. If we are making our research and our findings available, what is the best way to present the information so that as many people as possible can access it? In this context, we refer back to Chapters 6 and 7.
Accountability describes the researcher’s responsibilities to their employer, research funders and stakeholders, as well as to research participants. It means that research must be conducted, delivered and disseminated according to professional standards and best practice.
In this chapter we give a brief background to some of the key research models and methods in the field of disability studies, which has generated much of the conceptual work that informs the ideas presented in this book. The chapter includes:
Definitions of disability, and how these relate to models of disability.
The importance of using inclusive language and terminology, exemplified by the debate between the use of ‘disabled people’ vs ‘people with disabilities’.
An explanation of the distinction between research on disabled people and research with disabled people, and the wider implications of this distinction.
The perception that disabled people are vulnerable, and the implications this has for research ethics.
An overview of the research methodologies developed specifically for disadvantaged groups.
An introduction to Universal Design (UD).
This book is focused on research with the general population. We argue that, as most samples will include a proportion of disabled people, research needs to be conducted in a way that enables them to take part. One of the assumptions we make is that readers will be looking for ways to make it easier for disabled people to take part in their research, but that their research topic does not relate to disability, and does not take a disability studies approach. It is assumed that people researching specifically with disabled participants will seek out focused training resources and guidance in the use of appropriate research methods, and will have or develop an in-depth understanding of the needs of their group of participants. This book is intended for researchers who are not working specifically with disabled participants, and so the description of research methods is presented at an introductory level, with links to original sources that readers can explore further if they wish.
This chapter discusses accessibility as an overall consideration in research design. We start by examining how a research question might touch on questions of accessibility, and how accessibility can be built into the research design through suitable choices of methodology; we do this while acknowledging the limitations in scope and feasibility, particularly for student research projects. We outline which factors may affect participation generally, as well as in specific forms of research, such as case studies and longitudinal research. We talk about sources of support and advice at this stage and in this context we also cover the use of reference groups. We discuss the use of secondary data and its implications, and look at how accessibility issues might be approached in the context of applying for ethics approval.
In the social sciences we should make sure that the findings and any policy decisions based on them are applicable and useful to as many from the underlying population as possible. This translates into the requirement for a sample that is both sufficiently large and sufficiently representative of the corresponding population. That said, it has different implications for qualitative and quantitative research that we will make it explicit in subsequent chapters (in Chapter 4 we discuss recruiting strategies for both approaches).
The extent to which findings from a study’s sample can be applied to the population as a whole is referred to as representativeness in quantitative research, and it is threatened when participation is biased through the absence of some groups or over-representation of others.
Disabled people have frequently been excluded from research through an inflexible approach to sampling (Rios et al, 2016). This is the case even when, by making adaptations to the way the research is conducted, many disabled people could have taken part. Researchers argue that the reasons for exclusion relate to ‘overestimation of vulnerability, underestimation of ability, lack of experience and discomfort with disability, devaluing and disrespecting attitudes, research requiring sample homogeneity, and lack of foresight and accommodation’ (Feldman et al, 2013, p 1000). Some of these issues could be remedied by taking disability and accessibility into account when devising the sample. In this chapter we look at both qualitative and quantitative approaches to sampling, discussing each in turn.
In social science research, the aim is to discover, describe and theorise about what is happening in the field. When a researcher chooses a research sample, they seek to identify the group of people whose experience and views will produce answers to the research question, and, consequently, research findings that are authentic.
Sampling is approached very differently in qualitative and quantitative research, which reflects their different definitions of what constitutes knowledge. In qualitative research, the epistemological approach to knowledge is relativist (Braun and Clarke, 2013). This is the idea that, rather than being solely objective, knowledge is created and interpreted within a social and cultural context. So, while empirical research may still be based on observation and data, researchers using a relativist approach anticipate that participants will offer diverse perspectives that reflect their varying interpretations and understandings of the world.