Introduction to special issue on qualitative research

This special issue has provided us with the opportunity to demonstrate the scope of application of qualitative research approaches for people with Intellectual and Developmental Disabilities. A range of papers are included that reflect research methodologies that are becoming well established in the literature but the special edition has given us the additional opportunity to include some papers that reflect potentially important developments in qualitative research for people with Intellectual and Development Disabilities. Beail and Williams (2014) reported upon the growing importance and development of qualitative research both within the intellectual disability literature but also specifically being conducted with people who have intellectual and developmental disabilities. We hope that this special edition demonstrates the consolidation of this research methodology and points to some new areas for advance.

Qualitative research is concerned with the quality of a phenomenon (what is it like?) rather than its quantity (how much? or how much difference?). It allows us to take a broad look before we narrow our focus and our field and possibly adopt a quantitative approach. Quantitative researchers aim to be able to explain specific phenomena and then eventually build up such a comprehensive body of knowledge that they are able to predict what will happen under set conditions. In contrast, qualitative researchers want to first understand what is going on by asking and observing the people who have lived and experienced certain events. They then try to interpret the data they have collected, accepting that this process is subjective and specific to the place and time in which the research was conducted.

It is now relatively common practice in applied research for quantitative and qualitative approaches to be used side by side in large randomized controlled trials of health and social interventions as it is generally accepted that if we want to know how certain practices are best applied, we need to hear from those who implement them (clinicians/practitioners) as well as from those on the receiving end (patients/service users/clients) what their experiences have been of the treatment protocol. For example, a qualitative methodology can give us insight into why recruitment or retention may be poor for certain service users or why some clinicians struggle to implement a specific treatment.

Some common features of the qualitative research procedures used in the studies reported here are that the data (usually participants’ verbal accounts) are audio-recorded and transcribed. The transcripts are then read many times by the researchers during which they first make notes on a basic descriptive level and then subsequently move toward more conceptual/interpretive levels. That is, qualitative researchers often try to read beyond the given text and have permission to speculate on what the respondents’ underlying assumptions are and how they make sense of their experiences. These notes are then ordered into themes and sub-themes that are described in the results section and illustrated by verbatim extracts (quotes).

The authors of the papers included in this specialist issue have all adopted a qualitative research approach. They have adopted a range of methods that are based on slightly different theoretical stances. However, they also share a number of underlying principles that make qualitative research distinct from quantitative empiricism. That is, rather than being concerned about differences between groups and conditions and with causes, these qualitative researchers are interested in finding out about how people experience certain events, what meaning they attribute to these experiences, and how they understand what has happened to them. This type of research is an exploratory and largely subjective exercise rather than a rigorous experimental methodology conducted under carefully controlled conditions that allow for future replication.

Included within the Special edition are three papers that adopt Interpretative Phenomenological Analysis (IPA) as a methodology, this is concerned with personal meaning and ‘sense-making’ of the data. The papers demonstrate the adaptability of this approach. Williams et al. (2018) report on an interview study of women with intellectual disabilities who are living in secure settings due to their offending behavior. This study provides an insight into the perspective of a very neglected and hard to reach group. Pryde and Jahoda (2018) interviewed mothers of sons with both intellectual disability and autistic spectrum disorder. This is an area where great sensitivity is required to draw out the important narratives for this group. The paper by Smith and Stenfert Kroese (2018) also adopting an IPA approach, asked applied psychologists about their interactions with care staff. All of these papers provide rich detail about the experiences of their participants and highlight important areas for understanding complex relationships. They demonstrate the breadth of possibilities for a qualitative approach.

Another group of papers that are included have a clear focus on the views of people with intellectual and developmental disabilities themselves and the issues of importance to them. Staham and Beail (2018) report on a study using Content Analysis to assess how accessible, acceptable, and effective psychodynamic psychotherapy is perceived to be by service users with intellectual disabilities. This study highlights issues of significance to the people who participated in the psychotherapy sessions that will be of general interest to those providing similar services. Thematic Analysis was used by Littlewood et al. (2018) to explore the emotion regulation strategies used by adults with intellectual disability. This novel approach used an interview schedule based on the Cognitive–Emotive Behavioral Assessment Interview (Trower et al. 1988). Using an interview schedule grounded in pre-existing a theoretical approach supports the exploration of the under researched area of emotion regulation by people with intellectual disabilities and opens a number of potential applied clinical and research agendas in this area. Larkin et al. (2018) report on a study that explores the relationships between adults with intellectual disabilities from minority ethnic groups with their local social care services. This research has a relatively large sample size for a qualitative project and draws on techniques from Template Analysis to provide a structure for the analysis and incorporates phenomenological, narrative, and discursive approaches. The results suggest a more sophisticated use of cultural resources by clients from different ethnic backgrounds than has previously been assumed. This research has also resulted in the development of a set of materials (Unwin et al. 2016) that are now available to facilitate mutual understanding, service planning, and service delivery.

The remaining papers in the special edition represent a series of interesting developments in the application of qualitative research. The article by van der Meulen et al. (2018) describes a novel methodology for maximizing the inclusion of people with severe intellectual and developmental disabilities. They examine the controversial area of restrictions that may be placed on people with intellectual disability without their explicit consent. Their research tried to find out what service users feel about these restrictions by reporting on interviews that were completed as close as possible in time and space to the restriction. The views expressed were then triangulated with other sources of information to determine if best practice was followed and if not, how to ensure best practice.

Zazzi and Faragher (2018) also provide us with an innovative arts-informed methodology, using students’ with autistic spectrum disorder interpretations of ‘visual clutter’ in the classroom. The study used photo elicitation, ‘draw and talk,’ and semi-structured interviews. A framework for analysis of drawings is provided and an example of a qualitative analysis of one child’s drawing is reported, thus providing a potential new application of a qualitative methodology. Theodore et al. (2018) use Thematic Analysis as part of an inclusive research methodology with parents who have learning disability. The involvement of people with learning disability within this research team supports the development of the research themes from a very personal perspective and emphasizes the importance of including people with learning disabilities as active researchers in future research practice.

The development of more inclusive research practice provides an example to all researchers that we need not only listen carefully to people with intellectual and developmental disabilities but we need to engage them and include them in research practice as much as possible and wherever possible. Qualitative research provides opportunities for an inclusive approach and may shed light on complex issues. We hope that this special issue will promote the development of qualitative research theory and practice with people who have intellectual and developmental disabilities.

Note from the editors: The editors of the International Journal of Developmental Disabilities (IJDD) would like to thank John Rose and Biza Stenfert Kroese, the guest editors of this special issue on Qualitative Research for their hard work and commitment in conceiving and producing this special issue as well as the individual contributors, authors and reviewers. Qualitative research provides feedback from those with Intellectual and Development Disabilities thus allowing a greater understanding which in turn provides opportunities for more inclusive approaches to improve their lives. Arturo Langa and Brian Salmons