Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2014, 27, 85–96

REVIEW

Using Qualitative Methods in Research with People Who Have Intellectual Disabilities Nigel Beail*,† and Katie Williams* *Barnsley Adult Learning Disabilities Specialist Health Service, South West Yorkshire Partnership NHS Foundation Trust, Barnsley, UK; † Department of Psychology, Clinical Psychology Unit, University of Sheffield, Sheffield, UK

Accepted for publication 1 January 2014

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.

The Journal of Applied Research in Intellectual Disabilities has a long and positive association with qualitative research. In the first issue of the forerunner ‘Mental Handicap Research’, one of the seven papers published concerned a qualitative approach (Atkinson 1988). Today, the instructions to authors state that ‘both quantitative and qualitative methodologies are welcomed’. However, not all journals are so accepting of qualitative submissions. Some journals have no history of publishing qualitative research. This is surprising as qualitative approaches to research have been around for a very long time and form the foundation of many areas of

theory and evidence in the physical and social sciences. Perhaps one of the earliest examples which has contributed to the development of understanding developmental disabilities is the detailed case study, or life story, as exemplified in the writings of, for example, Itard on his work with the wild boy of Aveyron in the early 1800s. Indeed, case studies can be found to form the basis of many inquiries. From its beginnings, sociology has had a long tradition of ethnographic field work and case studies (Charmaz, 1995). Case studies and case series are also the main research method used in psychoanalytic work from Freud and Breuer (1895) onwards. Indeed, the

© 2014 John Wiley & Sons Ltd

Keywords: intellectual research methods

disability,

qualitative

research,

10.1111/jar.12088

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case study has remained the main approach to research in psychoanalysis. When psychoanalysis turned its attention to the field of intellectual disability (ID) in the late 1970s, the first published accounts of endeavours were case studies (Beail 1995). Case studies also formed the earliest reports of behavioural work, which now is a long established approach in educational and psychological interventions with people who have intellectual disability. More recently, advocates of this approach have become very much associated with quantitative methods. Nevertheless, like many approaches to ameliorate disability or treat problems, the behavioural approach has case studies at its foundation. Perhaps the best known, and very much courting controversy today, is the case study of Little Albert, a child now believed to have had intellectual disability (Fridlund et al. 2012a,b). Today, we tend to conceptualize qualitative research as a series of semi-structured interviews with a group of people with defined characteristics or experiences. The aim is often to elicit the views and experiences of participants. However, that is an oversimplification, as qualitative research now has a plethora of epistemological positions and is imbued with tensions. When invited to make a contribution on the subject of qualitative research for the 25th Anniversary of JARID, we considered our options. Should we attempt a systematic review or a metasynthesis? When we looked at the volume of published studies, there were too many for a systematic review of qualitative research in general but not enough for a systematic review or meta-synthesis with a particular focus. It also became clear that there were many issues in the area of qualitative research that needed to be aired when implemented with people who have intellectual disability. This paper, therefore, contains some critical reflections on the use of qualitative methods in research with people who have intellectual disability. Interview-based qualitative research has changed and evolved over time in parallel with technological advances. In the 1930s, it involved encouraging participants to write down their experiences. In the 1950s and 1960s, researchers were writing down participants’ responses. At this time, research concerning the lives and experiences of people who have learning disabilities was generally neglected (Clarke & Clarke 1958). The issue at this time was more about involving people who have intellectual disability as research participants (Stevens 1967). In the mid 1960s, the tape recorder started to be mass produced and became affordable and portable and so was embraced by qualitative researchers. New methodological approaches and related theory started to emerge such as grounded theory (Glaser & Strauss, 1967)

,and then in the 1970s, a new paradigm emerged within sociology arguing that research should be cooperative; with participants becoming co-researchers (Heron, 1971). In contrast, in the field of intellectual disability research, by the 1980s, it was still the exception for people with intellectual disability to be interviewees in research studies (Simons et al. 1989), never mind co-researchers. In the 1980s, qualitative methods became topical in psychiatry with a series of methodological papers published (Rutter et al. 1981) inspired by the earlier collaboration of a sociologist and child psychiatrist (Brown & Rutter 1966). In the 1990s, there was a noticeable increase in qualitative research in the field of psychology (Smith et al. 1995). It is notable by the mid 90s that qualitative methodologies usually associated with sociology were being embraced by many other disciplines and professions and that cross-fertilization was occurring and new methods were emerging. There are now a number of methodologies which fall under a broad umbrella of qualitative research. However, to belong to a group, there must be some defining characteristics. Qualitative research is generally concerned with people and their individuality rather than variables and statistics. Most of the methods recognize the central role of language and discourse. However, there is a focus on the real world and so qualitative methods and their various frameworks are pertinent to our journal’s concern with applied research. It has been argued that quantitative research and qualitative research have developed from different philosophical positions. However, this is a simplification. Quantitative research is a product of positivism and realist epistemologies. The approach aims to establish objective knowledge and favours the nomothetic approach. In contrast, qualitative research is described as being derived from phenomenological, hermeneutic, pragmatic, critical, and post-modernist traditions and favours the idiographic approach. The idiographic and nomothetic distinction emerged in the 19th century and formed the basis of scientific inquiry, whereas postmodernism emerged in the second half of the 20th century. Epistemological underpinnings in the field of qualitative research are wide and varied, but currently there are three broad frameworks: critical realism, phenomenology and constructivism. Critical realism is a departure from realism in that the approach assumes that data can tell us about reality but does not directly mirror it. Phenomenology is concerned with the subjective experience of the person, but constructionists are more interested in how phenomena are perceived and how knowledge is constructed. For a more © 2014 John Wiley & Sons Ltd, 27, 85–96

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authoritative account of the debates about epistemology, readers are referred to Willig (2012). Increasingly, there are numerous variations and combinations across these positions. It is also the case that the same method may be used by researchers from different epistemological standpoints. Idiographic methods continue to play a significant role in the development of new ideas in all scientific endeavours. One area in which both idiographic methods, in the form of case studies and case series, and nomothetic approaches, in the form of open trials, controlled trials and randomized controlled trials, contribute to scientific endeavour is in intervention research (Salkovskis 1995). This has also been the case in outcome research for people who have intellectual disability (Beail 2004). Further, interview-based studies have contributed through the evaluation of recipient satisfaction (Merriman & Beail 2009; Pert et al. 2013). There are those who champion mixed method approaches as well (McVilly et al. 2008).

Qualitative Research and People Who Have Intellectual Disability In 1999, Elliot, Fisher and Rennie noted a dramatic increase in the use of qualitative research methods in the last 5 years. They further stated that this had been in various disciplines and in several counties (Elliot et al. 1999). In 2001, JARID published a review of studies exploring the views and experiences of people with intellectual disability (Ramcharam & Grant 2001). This paper looked at how these were represented in research and other literature. They grouped what they found into three categories. First were ethnographies and life histories, second, user movement media and third, research based studies. The first and third

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categories largely contained qualitative research studies. Not mentioned by the reviewers at the time but of note now is that the results of these studies referenced in this review rarely found their way onto the pages of academic peer reviewed journals. Most of the studies reviewed appeared in books and book chapters. Most of the qualitative papers published in the academic press concerned methodological issues, not findings. In order to explore this issue further in the field of research with people who have intellectual disability, we looked at frequencies of qualitative research papers published in two sets of three consecutive volumes 10 years apart (1999–2001 and 2009–2011). We chose JARID and two complimentary high impact journals in our field: Journal of Intellectual Disability Research (JIDR) and the American Journal of Intellectual and Developmental Disabilities (AJIDD). Volumes or parts of volumes which contained conference abstracts were excluded. A paper was deemed qualitative if the method involved interviews, focus groups, text analysis or case studies and the data analysis had demonstrable roots in a qualitative epistemology. The results are shown in Table 1; only one qualitative paper was found in AJIDD (in 2011) and so it does not appear. Table 1 shows that the number of qualitative papers published over the decade has more than doubled, and Figure 1 shows that the publication rate of qualitative papers appears to be increasing as a proportion of all papers. However, qualitative papers represent a minority of published papers. It is also notable that the numbers of qualitative papers where the participants were people who have intellectual disability were just under half. We noted some problems in the reporting style of some papers. Researchers often failed to adequately describe the method in the abstract or mention who or how many participants there were in the study. More rarely but a

Table 1 Number of qualitative papers and total papers published in JARID and JIDR 1999–2001 & 2009–2011 JARID

Total no of articles 1999 2000 2001 2009 2010 2011

27 21 28 58 46 52

JIDR

Total qualitative 4 4 0 11 7 11

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Articles involving persons with intellectual disability 4 1 0 6 3 4

Total no of articles 63 38 59 94 94 99

Total qualitative 4 0 1 11 7 10

Articles involving persons with intellectual disability 4 0 0 7 3 4

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Percentage of qualitative articles

A graph to show the percentage of qualitative articles published in JARID and JIDR 20 JARID

JIDR

15 10 5 0

1999–2001

2009–2011

Year Figure 1 Percentage of qualitative paper published in JARID & JIDR a decade apart.

significant problem when evaluating the quality of the report, some researchers did not mention what qualitative approach they used at all. Papers in the earlier volumes of JIDR were largely case reports. The main means of data collection in the more recent papers in JIDR and JARID have been semistructured interviews, with focus groups lagging a long way behind. Only one paper reported using communication aids such as talking mats (Bunning et al. 2009). Over time, the philosophical underpinnings of qualitative methodologies have been redefined and realigned; further, new qualitative approaches have emerged. Currently there is a very wide selection of texts on qualitative approaches in the health sciences (see, for example, Bourgeault et al. 2010) and social sciences (see, for example Berg & Line 2011); but some approaches seem to be used more than others in research with people who have intellectual disability. These methods have different foci. For example, a narrative method would be appropriate if the focus is on the stories that people who have intellectual disability tell (Riessman 2008). Atkinson (2010) advocates the use of this approach and has demonstrated that people who have intellectual disabilities can portray themselves as fully rounded and complex human beings with distinct personal histories and a wealth of experience. McCarthy (2009) used this approach in a more focused way to explore accounts of the use of contraception by women who have intellectual disability. Interpretative Phenomenological Analysis (IPA), on the other hand, would be preferred if the focus is the subjective experience of the person (Smith et al. 2009). Brown & Beail (2009) adopted this approach to explore the experiences of people who have intellectual disability who self-harm and Elford et al. (2010) also used this approach to explore the experiences of carers who

use physical restraint with their son or daughter. Conversation analysis is another method and is suitable for analysing the interactions that take place between people (Rapley 2012). This approach focuses on a particular aspect of conversation, for example, Rapley & Antaki (1996) looked acquiescence in conversations with people who have intellectual disability. Grounded theory, in contrast, aims to produce an inductively driven theory of psychological or social processes (Glaser & Strauss 1967; Bryant & Charmaz (2010). Randell & Cumella (2009) used this approach to explore the perceptions of people who had intellectual disability of living in an intentional community. However, this is not a good example of this approach as the analysis terminates at the categorizing stage and does not move to theory building. Thematic analysis (Braun & Clarke (2013) is more suited to finding what a group’s conceptualization of the phenomena under study is. Van Alphen et al. (2009) used this approach to explore the views and experiences of people who have intellectual disability on neighbouring. Interestingly, they found that the experiences of people who have intellectual disability are very similar to those of the general population. Framework analysts, however, is a better choice if the focus is on a priori concepts, say from a literature review, in coding the data (Jahoda et al. 2009). Qualitative data can also be grouped into thematic categories and the number of participants contributing to the theme stated as in content analysis (Neuendorf 2002). Bethel & Beail (2013) used this approach when exploring the accounts of support staff who apply mechanical restraints when the people they support engage in very severe self-injurious behaviour).

Main Components of A Qualitative Study Qualitative studies begin with a research question and so are no different in that respect to quantitative research. A qualitative method must also be appropriate to address the research question. Qualitative research is concerned with bringing knowledge of the unknown into the known (Morse & Field 1995). Thus, it would be concerned with questions such as what was it like for a person finding out that he/she had an intellectual disability, what was it like living in a long-stay hospital, or what was it like to be detained, or what were peoples’ views on a service. Some of the earliest qualitative studies explored the experience of living in long-stay hospitals and developing community-based alternatives (Ramcharam & Grant 2001), but today, a wider range of topics are appearing. © 2014 John Wiley & Sons Ltd, 27, 85–96

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Identifying Participants Relevant to the Research Question Qualitative approaches tend to adopt theoretical or purposive sampling. McVilly et al.(2008) point out this is not to be confused with opportunistic or convenience sampling. Holloway & Wheeler (2010) define purposive sampling as the selection of participants based on their group membership or experience of a phenomenon relevant to the research. Basically, the researcher should ensure that the participants selected are expert in the phenomena being investigated. Smith et al. (2009) also argue that a relatively homogeneous sample is advocated for IPA. In this paper, we have focused on qualitative research with people who have intellectual disability; thus having an intellectual disability defines group membership. However, people who have intellectual disability are not a homogeneous group, t studies tend to focus on more specific group membership or experience. For example, Brown & Beail (2009) interviewed people with intellectual disability who self-harm and live in a secure accommodation. However, it is interesting to note that very little research has examined how people with intellectual disability experience and understand their diagnosis or label. Researchers need to be aware that some people with intellectual disability do not use the label (Finlay & Lyons 2000). Why this is the case has been the subject of professional debate, but not investigation with those to whom it is applied. Perhaps a reason why we do not know much about how people diagnosed as having intellectual disability feel about their diagnosis or label is because professionals find it hard to explore due to a belief that it would be painful for the person concerned (Craig et al. 2002). Parents can also try to protect their children from the identity (Aull-Davis & Jenkins 1997; Todd & Shearn 1997) believing it to be either cruel or too hard to understand. There is also an assumption that receiving the diagnosis and living with it is traumatic (Fine & Asch 1988; Todd 2000). In the absence of research on the experience of living as a person with intellectual disability, researchers need to be sensitive to the identity of those they are approaching.

Abilities of Participants Qualitative research gathers data in the form of words usually through interviews or focus groups. Thus, to be a participant, some degree of verbal ability and ability to respond to questions is needed. In focus groups, participants need the additional ability to contribute in a © 2014 John Wiley & Sons Ltd, 27, 85–96

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more complex social interaction and have the necessary pragmatic language skills. This creates a barrier for some people who have intellectual disability. People who have intellectual disability have limited vocabulary, difficulties with verbal comprehension, ability to reason with words and so on, but only a small minority have no language ability at all. Thus, with the growing acceptance of qualitative research has come a parallel growth of qualitative research with people who have intellectual disability. But researchers have not only had to be cognizant of the verbal abilities of their interviewees in terms of what they say, but also how questions are asked. More reflection on this is needed in study reports. Some researchers have reported that they have taken certain issues into consideration in their interviews. For example, asking simple open questions to manage problems of acquiescence, social desirability and suggestibility (see McVilly et al. 2008; for a discussion). Further, taking care in the development of questions to ensure they are non-leading and that the interviewer keeps any tendency to shape answers under control. However, Booth & Booth (1996) identified areas of challenge for the interviewer. The participant may be unresponsive to open questions, have difficulty generalizing from their experience and thinking in abstract terms. They may have conceptual difficulties with time, making it difficult to tell their story. Another issue may occur when asking people with intellectual disability about the services they receive. Merriman & Beail (2009) noted a reluctance to criticize services, perhaps, for fear they may be withdrawn. Limited attempts have been made to facilitate communication through the use of communication aids such as symbol cards (Bunning & Steel 2006; Bunning et al. 2009). However, for people who have very severe and profound intellectual disability the qualitative researcher has to accept that there are limits to what can be achieved.

Quality of Data A word that is frequently employed by qualitative researchers in relation to the quality of the data is ‘rich’ (McVilly et al. 2008). In relation to respondents, this seems to mean extensive, detailed accounts of personal experience. Clearly, verbal ability plays a role in the extent to which a detailed account can be given. Thus, researchers should expect that having intellectual disability will impact on the level of description and detail in any interview situation. Thus, qualitative research with persons who have intellectual disability

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may not produce as rich data as that with the general population, however, that should not mean, it has less value. Smith & Osborne (2008) have given a different definition of richness; they define it in terms of the number of themes in the data. Whether having an intellectual disability impacts on the number of themes has not been examined.

Interviews With People Who Have Intellectual Disability Qualitative researchers largely collect data via the medium of the semi-structured interview. The schedule is focussed, open and brief but allows exploration of participants’ experiences through generation of new questions. Examination of studies that report interview length suggest that interviews with participants who have intellectual disability are around an hour or less in contrast to those with family carers (Elford et al. 2010) or care staff (e.g. Abbott & Howarth 2007) or other participants from the general population (Flowers et al. 1997; Kellett et al. 2010) which have been reported to be an hour or more in length. Indeed, Abbott & Howarth (2007) and Flowers et al. (1997) report interviews lasting up to three to 4 h. However, should this mean that qualitative approaches are not appropriate for people who have intellectual disability? Whilst verbal ability may play a part in explaining why interviews are of different lengths, any analysis to confirm or refute this is hard to find. For example researchers do not always provide information on the interview schedule or topic guide. It may be that researchers are constructing shorter interviews for participants who have intellectual disability, or use fewer prompts to reduce bias effects. However, sometimes exploration does not seem to go far enough. For example, Randell & Cumella (2009) asked participants about the positive and negative aspects of living in an intentional community. They did not explore with participants whether they had any knowledge of living in the same community as everyone else or any other living arrangement. Electronic recording increases the rigour of data collection in that it provides opportunities for checking, clarifying what was said with participants and auditing (McVilly et al. 2008). However, researchers need to consider how participants feel about the interviews being recorded. Some may find this intimidating, but this does offer perhaps the best approach so that interviewer and interviewee are free from distractions which occur by other recoding methods.

How Many Participants? Quantitative studies have clearly defined methods for determining how many participants are needed to test a hypothesis. However, how many participants are needed for a qualitative study is more perplexing. On the one hand, the numbers needed seems to vary according to the qualitative approach. Case studies and life stories can focus on one person. Grounded theory samples are for theory construction and not for representativeness of a population. IPA aims to explore perspectives in depth, as opposed to obtaining data which can be generalized. Thematic analysis may need samples that are larger because one focus of the study may be group-based variation or similarity. All seem to adopt purposive sampling but then diverge. Grounded theorists collect data until they have reached saturation of emerging conceptual categories. If saturation determines sample size, then estimating how many participants will be included is problematic prior to data collection. A study of PhD studies using qualitative approaches was carried out by Mason (2010). He looked at 560 studies and found them to have a mean sample size of 31. Interestingly, he noted that a statistically significant proportion of the studies had sample sizes in multiples of ten. Mason concludes that this suggests a pre-meditated approach that is not wholly congruent with the concept of saturation. However, the problem for the qualitative researcher is that research ethics and governance frameworks require prior specification of sample size. Guest et al. (2006) examined the degree of data saturation and variability on a data set of 60 interviews with women in two West African countries. They found saturation to occur within the first 12 interviews with the largest proportion of themes identifiable in the first six interviews. It is not clear that the findings from this study would generalize to research studies with people who have intellectual disability; however, it does offer the foundations for developing guidance. Saturation does not feature in Interpretative Phenomenological Analysis. IPA can be applied to a single case or to a case series. Smith et al. (2009) state that participants are employed for representing a perspective as opposed to representing a population. Smith (2004) has stated that for inexperienced researchers using IPA, four to six interviews will enable them to engage in the indepth analysis required without becoming overwhelmed by the data. Smith et al. (2009) also state that for a professional doctorate, four to ten interviews are recommended. This raises the question, how many participants should experienced researchers seek to © 2014 John Wiley & Sons Ltd, 27, 85–96

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have? Participant numbers in IPA studies vary considerably. One study used to demonstrate the method (Smith et al. 2009) had 20 participants. Similarly, Thematic Analysis may involve small numbers or very large numbers. Joffe (2012) states that numbers in excess of 32 are appropriate for some studies. Studies where people who have intellectual disability have been the participants seem to reflect this pattern. However, studies of carers have involved similar numbers but also considerably larger numbers.

Analysis Some form of coding and thematic analysis is common to all qualitative methods, but informed by different epistemological underpinnings and resulting in, on the surface, similar looking results. Visual inspection of results sections reveal some text followed by one or more quotations from participants. These quotations are provided as evidence to support the main themes found in the data. The methodologies employed seem to share considerable overlap, but readers need to be aware of the differences. Notably, what constitutes a theme, how they are identified and whether these are emergent or part of a framework. Unfortunately, many authors do not say how themes were identified. Some describe the process of identification, which usually involves a detailed line by line analysis of an individual participant’s interview transcript; essentially taking the data apart. This produces codes which are then grouped into themes across the individual interview and then across the participants’ transcripts. However, thereafter the process begins to diverge according to the approach. Those taking an IPA or Grounded Theory approach record their interviews and then transcribe them and read them several times to become familiar with or be immersed in the data, and then start to locate themes in the transcript. In Grounded Theory, for example, this involves looking for similarities, differences and nuances in the data and the emerging codes, categories and concepts. The researcher stays as close as possible to the data of the interviewee as long as possible. This is a time-consuming process. Thematic analysis has its roots in Content Analysis and so is a little more closely linked to the positivist and realist tradition, adherents often describing themselves as critical realists. Thematic analysis takes the participant’s word more at face value and so tends to move away from the individual in search of common themes much earlier. Thus, Thematic Analysis is more accepting of entering transcripts into qualitative software packages which identify the themes © 2014 John Wiley & Sons Ltd, 27, 85–96

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within and across transcripts. Thus, the later can efficiently handle larger numbers of interviews. One way of determining a theme is its commonality. However, some prefer to stay clear of this concept as it relates to quantitative methodology. Thus, there may be more preference for nuance, but then, this is susceptible to criticism of subjectivity on the part of the researcher, and then also open to bias. Discourse Analysts would argue that the notions of subjectivity and bias are located within the positivist paradigm and should not be used to critique qualitative methods as according to this position all views are socially constructed. Some methods also concern themselves with divergence or exceptions. Most qualitative research today with people who have intellectual disability is interview based, and the analysis focuses on the typed transcripts. A major criticism of this is that the emotional tone of the participant’s account is lost. Earlier methods combining qualitative and quantitative methods did address the emotional tone in the data (Rutter et al. 1981). However, these methods do not seem to be in vogue at present. Many qualitative approaches, also consider the extent to which the researcher contributes in the shaping of the study and the findings. A major concept in many qualitative approaches to research is reflexivity, which can be separated into personal and epistemological. Personal reflexivity refers to the researcher’s own past and history and how this may influence the findings. In qualitative reports the researcher may provide a personal statement about him/herself and consider how this may impact on the data they are reporting. Most obvious in the field of research with people who have intellectual disability is that the researcher will most likely be university educated and of above average intellectual ability and to have enjoyed a very different lifestyle and experiences to those they are interviewing and whose responses they are making sense of. Epistemological reflexivity concerns looking at how the assumptions of the approach shape the study and influence the reporting of the findings. It is also worth noting that some qualitative reports do not state their epistemological position or what model informs their study either in terms of data collection or analysis.

Quality Assurance Terms such as reliability and validity have an uneasy relationship with qualitative inquiry. Some quality assurance methods have been developed but not all qualitative approaches embrace them. A new terminology has emerged in relation to qualitative research. Rather

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than refer to validity, the term trustworthiness is preferred, so construct validity is replaced with confirmability, internal validity with credibility. Some researchers have incorporated credibility checks into their designs. This may include using an analytical auditor, or checking the understandings with the participants, also called participant validation. Some approaches reject this, but in research with people who have intellectual disability, it has been argued that they have less power of redress (Stalker 1998), and therefore participant validation becomes an ethical principal. However, participant validation may be more effective if the results stay close to the participants’ words such as in thematic or content analysis as opposed to more interpretative approaches.

Participatory Research Involving persons who have intellectual disability in research projects has become an increasing aspiration for some researchers; especially qualitative researchers. However, realistically, research is an activity linked to higher education, and so participation needs careful facilitation, with time allocated to training, so that the contribution of persons with intellectual disability is valued and not tokenistic. Most of the published research today is as Kiernon (1999) described twenty years ago, that is, the researcher determines the question, gathers the data, analyses and interprets the data and draws conclusions. Many people who have intellectual disability can participate in developing research questions, but they tend not to have any experience or understanding of research methods and their associated epistemologies. However, people who have intellectual disability have participated in advisory groups for studies and taken on the role of co-interviewer or interviewer (Haigh et al. 2013). Then, the analysis stage presents further challenges. Thus, less interpretative methods such as Thematic and Content Analysis may be more inclusive than more interpretative or theory-generating approaches. Researchers need to ensure that by partially involving people who have intellectual disability in projects, they are not left feeling partially rejected (Townson et al. 2004).

Meta Synthesis As qualitative research with people who have intellectual disability accumulates, what sense can we make of it as a body of knowledge? The narrative review approach has incorporated qualitative research

into the body of the text, and in some papers, qualitative research has provided the largest contribution to the review (see for example Ramcharam & Grant 2001). However, the narrative, descriptive review is now less favoured and the systematic review much preferred. The approach that has developed to review qualitative studies is meta-synthesis (Jensen & Allen 1996; Saini & Shlonsky 2012). To carry out a metasynthesis, the reviewer has to begin, as with any review, with a review question. However, the reviewer needs some confidence that there will be sufficient published research relevant to the research question. Currently, qualitative research with people who have intellectual disability covers a wide range of topics, and there are insufficient peer-reviewed studies on any one topic to enable a meta-synthesis to be carried out. The exception may be residential care, but most of the studies concerning this were not published in peer-reviewed journals and have been reviewed many times. Meta-synthesis shares with all reviews a search of the literature. All papers are then screened to ensure the method is qualitative and relevant to the review question. Then the papers are appraised for quality using a quality appraisal tool such as the Critical Appraisal Skills Programme (CASP) checklist (Public Health Resource Unit 2006). It seems to be a matter for the reviewer as to the level of quality at which papers are included in the review. The next stage involves reading the included papers in publication date order noting the themes reported and compiling these into tables. Then studies are added to the spreadsheet and the reviewer carries out a compare and contrast examination of the terms used across studies. The next phase seeks to develop concepts and metaphors that apply across studies and identify concepts that do not fit and may contribute to another category. The final phase is synthesising the metaphors and concepts into more refined meanings, exploratory theories and new concepts. The final synthesis needs to also reflect the contradictory or alternative views and explanations. The final synthesis should convey how the whole is greater than the constituent parts (Walsh & Downe 2005). This approach is not without its critics, as the process of summarizing qualitative findings can be seen as destroying the integrity of the human experiences represented in the individual projects (Sandelowski et al. 1997). Basically, reviewing and summarising studies is counter to some of the epistemological positions of qualitative research, especially interpretative and constructivist positions. However, if qualitative research projects stand alone, there is a risk they will be ignored © 2014 John Wiley & Sons Ltd, 27, 85–96

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and the researchers isolated from the wider research endeavours. Consequently, the findings will have little impact on policy and practice in relation to the lives of people who have intellectual disability.

Conclusions Qualitative research covers a wide range of approaches linked to a number of epistemological and theoretical positions. Qualitative research involving people who have intellectual disability as participants does appear to be increasing in terms of academic publication, particularly over the last decade, but still represents a minority of published research papers. It would seem, at the moment, that studies are addressing a wide range of issues, and we are not at a stage where we can review a body of qualitative research on a particular aspect of people with intellectual disability. It is difficult to comment on the similarity and differences between qualitative studies where people with intellectual disability are participants and those with people from the general population. The notion of richness, which some believe would be qualitatively and quantitatively different, is difficult to assess from published research. When conducting qualitative inquiries with people who have intellectual disability, the researcher has to consider the impact of intellectual disability on the participant’s communication ability. However, the only difference we could discern from recent published reports was that the interviews with people who have intellectual disability were shorter. But does this mean that what they say lacks richness? Richness has been defined in loose terms or quantitatively in terms of the number of themes emerging from the data. However, making comparisons between studies with people who have intellectual disability with those with the general population is fraught with difficulties. One of the problems we found was that in order to meet the journals requirements quotes used to illustrate themes are kept to a minimum. This may be determined by word counts, thus giving authors different degrees of scope in the provision of supportive quotes. Thus, a paper may seem to have richer data because the word count or editorial policy simply allowed this. Some qualitative papers publish all themes in a single report, some report on a subgroup of themes, but may not declare this and some researchers publish a series of papers eventually reporting all the themes. Perhaps, it would be a good idea for researchers to be more explicit in what they are reporting and for reviewers to seek clarification when © 2014 John Wiley & Sons Ltd, 27, 85–96

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this is not clear. The only way of truly evaluating whether people who have intellectual disability provide less rich data (fewer themes) would be a direct comparison of the number of themes generated when participating in the same project. However, the very idea of doing this would go against the philosophical basis of the qualitative researcher. Perhaps, we should be less concerned with such speculation and evaluate whether the output of qualitative research done well with people who have intellectual disability contributes to our knowledge and understanding. If we want to hear the voices of people who have intellectual disability, then we need appropriate ways to do this. Quantitative research employs deductive methods in which hypotheses are generated based on previous findings and are tested to see if they are predictive of specific circumstances. In contrast, qualitative research with its inductive techniques is more valuable when there is a lack of specificity in the body of knowledge, or where it is difficult to systematically control the issues or constructs under evaluation. (McVilly et al. 2008). Qualitative methods have played a role in bringing the unknown about people who have intellectual disability into the known. Whilst published qualitative reports are in the minority, they are on the increase. It seems likely that we may also see some growth in participatory research. One of the issues that needs to be addressed in the editorial and reviewing community is how submissions using qualitative designs are to be managed. Our examination of qualitative reports across 6 years in JARID and JIDR raised some concerns. The reader should be able to determine from the abstract who are the participants and what qualitative approach was taken. Submissions then need to be reviewed by reviewers with experience of qualitative research. It seems little point sending a paper for review to a reviewer who has negative views on and no knowledge of qualitative research in general. There should also be an expectation that reviewers should use clear and consistent criteria to evaluate qualitative submissions. However, quality criteria such as the CASP require a degree of knowledge and acceptance of a range of qualitative approaches. This may pose a problem as many qualitative researchers have deeply held epistemological positions linked to a particular qualitative method. In contrast, this is not such a problem in the quantitative research field. There is also the issue of combining qualitative and quantitative methods, which could bring advantages for some research questions. However, the realist epistemological position of a quantitative approach may clash with the

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relativist epistemological position of many qualitative approaches. On this point, Harper (2012) has said combining both may require a philosophically challenging rationale. Alternatively, maybe, we need to be more epistemologically pragmatic. McVilly et al. (2008) have argued that it is imperative to identify the contextual circumstances of the inquiry and select the appropriate method or combination of methods suited to that context. Also, Frost (2011) has stated that there needs to be a loosening of the bonds of ‘methodolatry’ to allow research to be driven by questions and curiosity rather than commitment to a particular methodological approach. Qualitative research is making a contribution to the scientific study of people who have intellectual disability. The approach plays a valuable role in informing us about the experiences and lives of people who have intellectual disability. It seems that it should also be moving to increasing participation of people who have intellectual disability in some aspects of research. It seems that the participatory paradigm is more established in qualitative approaches. The method also lends itself to greater levels of participation than quantitative research, for example, generating research questions, developing interview questions, conducting interviews and even stages of the analysis (Haigh et al. 2013). 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; but other forms of dissemination can be explored, for example, through a film (Haigh et al. 2011). Thus, with respect and collaboration, a lot more could be achieved.

Acknowledgments The authors would like to thank Vanessa Fay and Keith McVilly for help and advice during the preparation of this paper. We would also like to thank the British Institute for Learning Disabilities for the use of their Library.

Correspondence Any correspondence should be directed to Nigel Beail, Barnsley Adult Learning Disabilities Specialist Health Service, South West Yorkshire Partnership NHS Foundation Trust, The Keresforth Centre, Keresforth Close, Barnsley S70 6RS, UK (e-mail: nigel.beail@swyt. nhs.uk).

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