Focus groups with people with learning disabilities

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2010 14: 133Journal of Intellectual DisabilitiesAxel Kaehne and Clare O'Connell

Focus groups with people with learning disabilities

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133

Focus groups with peoplewith learning disabilitiesA X E L K A E H N E Cardiff University, UK

C L A R E O ’ C O N N E L L University of Wales Newport, UK

Abstract Focus groups are a widely accepted method inqualitative research.While there is a burgeoning literature on themethodology of focus groups, using focus groups with peoplewith learning disabilities has received less attention so far. Thearticle serves two purposes: (1) to review the current literature onfocus groups in learning disability research and (2) to sketch fouraspects that may impact on the usefulness of the focus groupmethod with respondents with learning disabilities. Somecomments on the role of focus groups in qualitative research startthe article before we outline the emancipatory and participatorycontext of research with people with learning disabilities.

Keywords focus groups; intellectual disabilities; learningdisabilities; qualitative method

BackgroundFocus groups have become a popular research instrument for eliciting data from the public. Their usefulness is well demonstrated and themethodology has been refined and developed for more than two decades(Litoselliti, 2003). By now, focus groups are indisputably an integral partof the qualitative research landscape and have proven to be effective ineliciting responses from many different populations on a wide range oftopics (Brown, 1999; Kitzinger, 2006). Researchers count the com-paratively loose format in contrast to surveys or semi-structured interviewsas one of the advantages of the approach. Focus groups allow participantsto feel relaxed, develop a sense of ownership of the discussion and increasethe potential to explore topics from different angles.

However, focus group discussions also possess an element of un-predictability for everyone involved, which requires the moderator to improvise and respond quickly to unexpected turns in the debate(Greenbaum, 2000). Making a focus group an enjoyable exercise for the

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participants and eliciting useful data depend to a large degree on the carefulpreparation of the focus groups by the research team as well as the socialand communicative skills of the moderator on site.

While focus groups can offer respondents a relaxed and informalenvironment in which they can explore issues through discussion anddebate, they have to comply with a range of requirements to be successfulfor researchers and participants alike.

Focus groups as a qualitative research strategy are based on a con-structionist perspective of reality. The opinions, views and perceptions of participants are the main units of data that produce a cumulative viewof reality through discussion and debate. Research that wants to obtain dataon the experiences of people in social contexts may therefore most usefullyutilize a focus group methodology. Focus groups also fulfil an importantobjective of current policy and research: the inclusion and empowermentof service users or patients. The drive for inclusion of people with learningdisabilities in research is based on the concern that research should not beconducted on people but with their active participation (Northway, 1998).1

Focus groups may seem an ideal vehicle to achieve this.The basic function and purpose of focus groups as a qualitative data

gathering strategy defines to a large degree the requirements of focus grouporganization and conduct. Focus groups require from all participants thewillingness to share and disclose their views and opinions within thegroup, a readiness to engage with other participants’ ideas, and an abilityto listen to each other and reflect on their own opinions in light of otherpeople’s contribution. For group discussions to occur, participants need tobe comfortable with the group, confident about the confidentialityarrangements that are in place, and willing to share information and ideas.In addition, the success of focus groups depends on the ability of theirparticipants to ‘have some investment in the topic’ (Brown, 1999: 115) anda positive view of the importance of the group’s discussion.

This article will first outline the emancipatory and participatory contextof learning disability research; then review the current use of focus groups in research with people with learning disabilities as reflected in theliterature; and, in the last section, highlight four aspects that are of par-ticular concern when conducting focus groups with people with learningdisabilities.

Although the article has a mainly theoretical thrust, our views on thepotential possibilities and pitfalls of focus group research emerged fromour experience of running focus groups with people with learning dis-abilities in 2008 for a consultation exercise for the Learning Disabilities andAutism Network in Wales as part of the Clinical Research Consortium(CRC). When citing examples of focus group work throughout the article

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we draw on the experiences we gained in this consultation.We are gratefulto the participants of these focus groups for their willingness to share theirviews and opinions.

Emancipatory and participatory research with people withlearning disabilitiesThe emancipatory and participation agenda provides the context for focusgroup work with the learning disabilities population. Emancipatory andparticipatory research paradigms differ considerably and their meaningsare contested (Ham et al., 2004; Ramcharan et al., 2004), yet both sharethe aspiration to include people with learning disabilities in researchprocesses. Ruth Northway (2000) argues that participatory research alsogives rise to ethical dilemmas that need to be carefully considered byresearchers. At the heart of participatory research lies the commitment togive up control over the research agenda, and to allow ambiguity(Northway, 1998). Researchers are well aware of the barriers to includepeople with intellectual impairment in research. Redley and Weinberg(2007) speak of the ‘interactional impediments to political empowerment’manifested in a life-long dependency and vulnerability for the learningdisability population. They highlight the different role advocacy plays forthis group in comparison to the general population or to people with aphysical disability.Walmsley echoes these comments when she writes withregard to emancipatory research strategies:

The fact that people with learning difficulties usually need allies or supportersto enable them to undertake research means that they are extremely vulnerableto having their interests misrepresented by others. (2001: 201)

These authors all urge researchers to acknowledge the inherent limitationsin conducting inclusive research with the learning disability populationthat result from cognitive impairment.

Current state of focus group research in learningdisabilitiesWhen we started to plan focus groups with learning disabilities wesearched for existing literature on the topic.While we were aware that focusgroups had become a common data gathering strategy within the learningdisabilities research community, we were surprised to find that little hadbeen written about the methodological constraints of planning andconducting focus groups with participants who had a learning disability,although there is a substantial literature dealing with difficulties in research

K A E H N E & O’C O N N E L L : F O C U S G RO U P S W I T H L E A R N I N G D I S A B I L I T I E S

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with people with learning disabilities in general (Emerson et al., 1998;Fender et al., 2005; Fraser and Fraser, 2001; Gates and Waight, 2007;Holburn et al., 2008; Kiernan, 1999; McCallion and McCarron, 2004;Prosser and Bromley, 1998; Stalker, 1998).Where papers indicated that datahad been elicited with the help of focus groups with people with learningdisabilities, there was no mention, let alone discussion, of the impact oftheir learning disability on the nature of the data or the nature of the focusgroup discussion (McCallion and McCarron, 2004). There has, however,recently been an interesting exception to this rule where Llewellyn (2009)discusses her focus group work in three different settings and comparesthe impact of the medical and social models of disability on the data. Yetsuch methodological reflections by researchers are rare.

Where people with learning disabilities were involved in focus groupor participatory action research, we also failed to find any descriptions ofparticipants which may indicate the level of their cognitive impairment(Fraser and Fraser, 2001; Sample, 1996). In addition, it was not clear howrespondents were recruited. It may often be the case that pre-existinggroups were utilized, which may result in the over-representation in focusgroups of fairly articulate members of the learning disability communitywho are most likely to have a mild learning disability or a learning diffi-culty. In fact, Kiernan (1999) argues that this is the most reasonable strategy to increase the participation of the learning disability community.He writes

People with severe learning disabilities and severe limitations in receptive andexpressive communication will be unable to ‘participate’ meaningfully despitefurther improvements in the interview skills of researchers. (1999: 46)

Researchers have pointed out that over-use of the group of people withmild learning disabilities is a problem that affects many of the con-sultations that purport to elicit the views of the learning disabilitycommunity as a whole. At the same time many researchers agree thatconducting focus groups with people with profound and severe learningdisabilities is unlikely to be successful.

Cambridge and McCarthy write:

Experience suggests that individuals with more profound learning disabilities,difficulties with expressive and receptive communication and language,complex needs or additional mental health difficulties will be unlikely toparticipate well or constructively in focus groups. (2001: 478)

While this may be correct, we have failed to find convincing evidencebeyond the conviction and opinions of researchers. This clearly indicatesthe need for more research on how exactly intellectual impairments impacton qualitative methodologies. In our own research we noticed four sets of


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problems that we believe represent wider issues of using focus groups asa qualitative method with people with learning disabilities. They relate tothe preparatory and the implementation phase of focus groups. We feel itis important to draw attention to these issues because they are rarelydiscussed in the literature on participatory or emancipatory research forpeople with intellectual disabilities. We will discuss these four aspects inthe following section.

Problems of focus groups methodology when used with thelearning disabilities populationAs far as we can see, focus groups with people with learning disabilitiesfulfil the same function in qualitative research as those with other popu-lations: to explore issues, to assist in theory formulation and to providesupporting data to strengthen indicative findings from other research(Fender et al., 2005; Fraser and Fraser, 2001; Gates and Waight, 2007;Holburn et al., 2008; McCallion and McCarron, 2004). The generic limi-tations of focus groups also remain unaffected by the specific character-istics of the learning disabled population: the inadmissibility ofextrapolating from findings of focus group discussions to other groups andof treating individual contributions to focus group discussions as repre-sentative of a population or group of people (Hansen, 2006; Hek et al.,2004; Maykut and Morehouse, 1994). These functions and limitations offocus groups are discussed in the literature at length and we will notrehearse them here. We are concerned only with those aspects or require-ments of focus group research that may be affected by respondents havingan intellectual impairment.

Given the shared characteristics of people with learning disabilities,four aspects of planning and conducting focus group research with peoplewith learning disabilities appear critical for utilizing this research methodfor the learning disability population.

These aspects are: (1) the effect of intellectual impairment and theability of participants to respond to and reflect on other people’s view-points and engage in a debate; (2) the role of the advocates or facilitatorsin focus group discussion; (3) the issue of eliciting views from pre-existinggroups and the associated problem of over-researching existing groups;and (4) the ethical implications of the (lack of) capacity of research tochange lives. We will examine each aspect in turn.

Abilities versus key methodological requirementsOne of the most important requirements for the success of focus groupsis the ability of all participants to make meaningful contributions to the


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discussion on a given topic, reflect on other people’s arguments and engagewith opposing views. This places enormous cognitive and emotionaldemands on participants of any focus group. Participants need to have theability to: (1) reflect about their own and other participants’ views, (2)engage communicatively with each other, and (3) explore a given issuewith minimal guidance from the moderator.

The ability to communicate may be symptomatic for how focus groupwork and intellectual impairment may influence each other. Research hasshown that expressive communication in the learning disability populationis affected by age, level of intellectual impairment and personal circum-stances such as residing in natural homes or large institutions (McLean et al., 1996). For the group of people with severe learning disabilities,communicative abilities are as follows: 59 percent of people in this groupcommunicate symbolically, 19 percent are reported to be communicatingnon-verbally but intentionally, and 21 percent have no intentionalcommunication (McLean et al., 1996). It is generally acknowledged in theliterature that communicative abilities are the most significant barrier tosuccessfully conducting focus groups with people with learning dis-abilities (Kiernan, 1999; Prosser and Bromley, 1998; Stalker, 1998).

Fraser and Fraser conclude that ‘focus groups may be a useful techniquefor developing focused discussion around topics of interest to members’with a learning disability, but recognize that in one instance the focusgroup had ‘similarities with one-to-one interviews’ and indicate that wherethat is the case ‘this interaction does not achieve the aims of focus groups’(2001: 229).

In another case where focus groups were utilized as a method for datacollection with people with learning disabilities, Fender et al. (2005) areunclear about the nature of the interaction that was achieved. Intriguingly,Fender et al. note that discussion was facilitated by a game which allowedthe participants to approve or disapprove of certain options by voting ‘ok’,‘not ok’ or ‘with care’. However, from this description it is hard to see howthis can be a valid form of engagement with other people’s views.

These ambiguities are common in descriptions of the few focus groupswith people with learning disabilities in the literature. They would suggestthat focus group findings in research reports should include directquotations that demonstrate the mutual engagement of participants and theclear expression of coherent views and opinions to enable independentvalidation of data.

The most important question however remains whether people withlearning disabilities have the capacity to engage with each other’s views inthe first place. We believe that there is sufficient evidence that even wherecognitive abilities are low, emotional intelligence can and should be


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harnessed to elicit views. The work of Valerie Sinason (1992) has shownthat even people with profound learning disabilities have opinions and areable, given time and resources, to express those. Sometimes the demandsto elicit views and to facilitate engagement with other views may easilyexceed the existing time frame. This may mean that the way in whichdiscussions are steered in focus groups may have to be different for peoplewith profound learning disabilities.

The role of advocatesThere has been little reflection in the literature on the impact of thepresence of advocates in focus groups with people with learning dis-abilities. The few existing comments cast a positive light on their role,emphasizing their familiarity with participants and their expertise ininterpreting contributions by individual members. Fraser and Fraser writethat in all their focus groups

either the manager or a deputy was present as the interpreter, as they knewthe topics.They directed questions, if necessary, so that members with speechand language problems could respond and also acted as an interpreter wherefurther development of a point was needed. (2001: 227)

In a sense this quote indicates that the advocates came close to adoptingthe role of the moderator, an experience that we had in our focus groupsas well. Although Fraser and Fraser (2001) subsequently note that themanagers did not dominate the group, less attention has been paid to thegroup dynamics that exist as a result of the familiarity amongst the groupmembers and attempts to facilitate discussion by advocates. We found thattopics that have been raised in groups that existed prior to focus groupselicited well-rehearsed responses and that advocates played a vital role inteasing out those rehearsed responses. In other words, advocates were notsimply facilitating discussion but had a clear understanding of the desired‘right’ responses to the questions raised by the moderator.

Walmsley (2001) is more switched on to the problem of advocacy inlearning disability research when she writes on the emancipatory aspect ofinclusive research. She notes that there is little discussion on the differentrole of advocates in learning disability research:

Most people with learning difficulties need allies to do research . . . It isimportant to acknowledge the consequences for researchers of being thuspositioned . . . do they have the right to a voice which differs from that of theirdisabled colleagues? (2001: 198)

Walmsley also cautions that the role of advocates extends further than beinga mere facilitator of disabled people’s views. In particular, advocates may


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have to adjudicate between contributions from people with learningdisabilities during the research process. This may be highly problematicgiven the supposedly neutral role accorded to advocates in emancipatoryresearch. She notes that

although the diversity of people with learning disabilities has been celebrated,there’s been little examination of power relationships within the movement.Who should undertake the research is a question which needs a more complexanswer then ‘disabled people’ . . . I would suggest that given the continuingpower imbalance between people with learning difficulties and their allies, theposition of research as advocacy is less straightforward than debates in thedisability studies literature suggest. (2001: 198–9, 201)

Her suggestions may have practical implications for organizing andconducting focus groups with people with learning disabilities, but theappropriate responses in relation to problems regarding advocacy are byno means clear. It seems to us that one significant problem of conductingfocus groups with people with learning disabilities is to mitigate the‘enabling’ role of advocates. What this exactly means may depend on thecontext of the research undertaken. It may be that moderators may wantto decline the assistance of advocates from the outset where practical, andin turn, build in additional time and resources for those focus groups withpeople with more complex needs. Northway (1998) comments thatbuilding up trust requires additional time when conducting research withpeople with learning disabilities and, without the help of advocates, thisadditional time may be substantial.

Alternatively it may be advisable to ensure that focus group participantsare only confronted with issues that have not been discussed previously todecrease the likelihood of eliciting rehearsed answers.

In a recent study Llewellyn (2009) notes that the social model ofdisability might mitigate against assumptions of incompetence of serviceusers and patients with learning disabilities which may create a strongpower differential between support staff and respondents. Llewellyn arguesthat, in effect, data obtained from focus groups with strong power differ-entials between users and facilitators are contaminated and reflect more theopinions of the facilitators than those of the service users or patients.

On the other hand, Fraser and Fraser (2001) explicitly endorse the useof facilitators, such as interpreters, since they may have special skills thatenhance the chances of contributions from focus group participants withspeech and language impairment. We do not dispute this, but would liketo emphasize the danger of undue influence from the interpreter wherehe/she adopts the role of eliciting ‘desirable’ responses. Clearly, moreresearch on the effects of interaction between advocates and persons withlearning disabilities in qualitative research settings is needed.


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Research, policy and research ‘saturation’This leads us to the third problematic aspect of conducting focus groupswith people with learning disabilities. Rehearsed answers in focus groups‘facilitated’ by advocates are often the reflection of long-standing diffi-culties in public policy and services which have attracted attention fromcampaign and advocacy groups. The aims and objectives of focus groupresearch may overlap with policy initiatives, increasing the chance thatparticipants in focus groups draw on rehearsed answers as opposed toengaging in a genuine discussion.

The chance of overlap increases where focus group organizers recruitmembers of a pre-existing group for a focus group discussion. Much ofwhat participants say may then be a reflection of what has previously beensanctioned as a ‘right’ answer, and we experienced instances where advo-cates even prompted participants to give a specific answer that had beenmemorized. Typical for these sorts of exchange are prompts such as ‘heknows it, he just has to remember’.

The difficulty in this context is that responses are preconceived anddeemed ‘accurate’, something that contradicts focus group methodology.We are aware that other authors come to different conclusions, since theyemphasize the need for participants to be ‘versed’ in contributing todiscussions (Fraser and Fraser, 2001: 231). However we believe that therehas been insufficient attention to the danger of rehearsed answers frompre-existing groups.

The best countervailing strategy seems to us to check that the issueswhich are to be discussed have not been debated previously by the group.Where that is not possible, questions should try to probe the quality andvalidity of the responses by exploring in more detail why a particular viewexists. Where the response points to pre-existing rehearsed answers,opinions should not be taken to be a genuine expression of the respondent.

Ethical problemsA related problem is the tendency that research with people with learningdisabilities operates under resource constraints and the difficulties ofgaining access for recruiting new respondents. Researchers rarely have thetime to build a focus group from scratch by contacting people withlearning disabilities individually. The result is that many researchers find ituseful to contact existing self-advocacy groups. Consequently we found inour research that many of these groups are ‘over-researched’, whichincreases the likelihood of obtaining only rehearsed and previously sanc-tioned answers during focus group sessions.

However, ethical problems also arise when existing groups arefrequently asked to participate in research. Many of the problems that


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people with learning disabilities experience in society have the capacity toupset or even traumatize them. Discussions in focus groups around thedifficulties they experience in their day-to-day life may compel them torelive the upsetting or traumatic event. Ruth Northway’s (2000) commentsabout conducting research with people with learning disabilities who havevery limited social networks are similar in this respect. We experiencedseveral incidents where people had frequently been contributing toresearch and campaigns over the years, and the fact that improvements inquality of life or individual issues were not forthcoming proved verydistressing to some participants.

The repeated public disclosure of difficulties may unnecessarily disturbparticipants with learning disabilities. While this problem touches on thefact that research is unlikely to impact directly on people’s lives, it also alertsresearchers to the possibility that much of what is researched and writtenmay be a repetition of previous research with the learning disabilitypopulation.

It is unlikely that research in learning disabilities will imminently startto make a significant impact on policy or practice. It therefore seemsimperative to try to avoid duplication of research. Equally, focus groupmoderators should make the limited impact of research clear to all partici-pants and, where possible, lower expectations for change or serviceimprovements. They should stress the difference and tenuous link betweenresearch, policy and service development.

On the other hand it has been argued that participating in focus groupsmeets the demands for empowerment and inclusion of people with learningdisabilities in research and provides opportunities for integration in activi-ties that would otherwise not be available to them (Kroll et al., 2007;Northway, 2000). We would argue however that the function of research isnot to compensate for the failure of society to achieve a reasonable degreeof inclusion in community life and make up for the lack of leisure and intel-lectual pursuits otherwise accessible to people with learning disabilities.

SummaryWe identified four aspects that may pose considerable challenges to the focusgroup methodology when used with people with learning disabilities: theability to respond and engage; the need for facilitators in discussion; thepossible ‘over-researching’ of certain groups; and the lack of any immedi-ate impact of research on quality of life issues for participants.

Despite the many difficulties that researchers need to address whenconducting focus groups with people with learning disabilities, we holdthe view that a careful balancing of methodological rigour and a keen


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awareness of the limitations of focus group research with the learningdisabilities population can result in gathering valid data on a wide rangeof issues relevant to people with intellectual impairment.

Part of the complexity when utilizing focus group methodology withpeople with learning disabilities results from the fact that aspects of sharedcharacteristics of the learning disability population interact with someaspects of focus group methodology. We would argue that a better aware-ness of the limitations of focus group research with some people withlearning disabilities may result in the increased validity of researchfindings.This may also, on the other hand, focus applied researchers’ atten-tion on adjusting the methodology of focus groups so that the views ofpeople with moderate learning disabilities can be heard. As we havepointed out, there is currently no evidence on the validity of qualitativedata relating to intellectual impairment in the focus group context.

In sum, we would make three recommendations in this context. First,in the interest of increased validity of focus group data with people withlearning disabilities, researchers should provide more information on thegroup’s composition, the sampling methods and the level of intellectualimpairment of the respondents where possible.

Second, more research should be conducted on how intellectualimpairments impact on qualitative research strategies. Qualitative methodsare an integral and important part of research with groups that wouldotherwise be excluded. Focus groups also provide an important sense ofempowerment and self-advocacy that resonates with policy and goodpractice in public services. However, we know little about the ways inwhich qualitative methods lend themselves to valid data gathering withpeople with intellectual impairments.

Third, we think it would be useful to develop a standard protocol forplanning, organizing and conducting focus groups with people withlearning disabilities that can assist researchers in assessing the advantages andlimitations of utilizing focus groups for their particular research question.

AcknowledgementsThe authors acknowledge the financial support in 2008 by the LearningDisabilities and Autism Network for Wales for running the focus groups onwhich this article is based.

Notes1 The phrase ‘people with learning disabilities’ is used in the UK to describe those

referred to elsewhere as ‘people with intellectual disabilities’, ‘people withdevelopmental disabilities’ or ‘people with intellectual or developmentaldisabilities’.


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Cardiff University, Heath Park, Neuadd Merionnydd, Cardiff CF14 4XN, UK.E-mail: [email protected]

Date accepted 26/07/10


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Focus groups with people with learning disabilities