Short report: Learning to Interview People with a Learning Disability

Learning to Interview People with a LearningDisabilityVanessa Baxter, Researcher, Essex Social Care, Chelmsford.AbstractWhen planning for a first project involving research amongst people with a learningdisability, I found very little in the way of good practice guidance or practical tips onhow to do it. In this article, I aim to share my learning experience and offer advice toother researchers who are new to the field.KeywordsPeople with a learning disability, research methods, interviews, user viewsIntroductionWhen I joined the Essex Social Careresearch team I had no prior experienceof research amongst people with alearning disability, although I had overten years experience of carrying outresearch. My first project was therefore alearning experience for me, as I exploredwhat kinds of questions participantscould and could not answer.While planning for the project I readwhatever I could find about interviewingpeople with a learning disability.However, there was very little in the wayof good practice guidance or practicaltips on how to do it. In this article, I aimto share my learning and offer advice toother researchers who are new to thefield.My first project was a qualitative study toevaluate the outcomes and process ofself-reviews, where the person with alearning disability is supported by anadvocate to carry out their own annualreview. The research was commissionedby the Planning and ParticipationManager from Essex Social Care’sLearning Disabilities Service. He wantedto evaluate whether person-led reviews(that is, self-reviews supported by anadvocate) gave service users morecontrol over the review process, withbetter outcomes, than the current personcentredbut care management-ledreviews. I developed a research proposalto meet his requirements, agreed it withhim, and then submitted it to the EssexSocial Care Research Governance Groupfor approval. This included anexplanation of the reasons for themethodology and what the ethical issuesmight entail.The project involved face-to-faceinterviews with 14 people with a learningdisability, supported by their advocate.These interviews formed the mainelement of the research, but input fromadvocates, relatives and social workerswere obtained. The interview took theform of a conversation with participants,asking questions about various aspects oftheir life. In addition, people in their‘circle’ who could give a view abouttheir life were sent a self-completionquestionnaire to obtain extra informationabout their lives.175Research Policy and Planning 23 (3): 175-180 © 2005 SSRG

Research Policy and Planning 23 (3)176InterviewingFormat of interviewsThe advocates worked with each personin advance to prepare him or her for theirself-review. Most of the researchinterviews were carried out after the preplanningstage and before the review.However, I learnt that it was necessary tobe flexible about this and adapt to eachindividual’s circumstances, so that fourresearch interviews took place within thereview meeting itself. This meant thatothers present, such as parents andsupport workers, could give their viewsabout the person’s life: this was essentialfor the two people who had no verbalcommunication.This article deals mainly with myexperience of interviewing the 12 peoplewho did have a level of verbalcommunication ability. I collectedinformation about the lives of the twopeople with no verbal skills from parents,advocates and support workers whoknew them well. This was the mostpractical way of gaining data about theirlives, as I did not have the time orresources to develop a way ofcommunicating with them. There wassome evidence to suggest that the twopeople followed at least some of thediscussion during the interview, and theyat least understood that it was aboutthem.Interview arrangements and consentThe advocates had explained about theresearch and asked the participants tosign a simple consent form before I metthem. They also arranged the time andvenue, which was mostly someone’shome or day centre, depending on wherethe person would feel most at ease. Thefact that the advocates set up myinterview with each person was a greathelp and saved me a lot of time. It meantI did not have to identify and recruit alink person for each of the 14 participantsto explain about the research, gainconsent, and arrange for me to meet withthem. It also made it very easy for me toarrive and start asking questions, as thepeople were expecting me and weremeeting me with their advocate, whoknew them well. Each interview beganwith a cup of tea or coffee (often madeby the participant) and some generalchat, which helped to break the ice beforethe interview as such started.Although the advocates had previouslyexplained why I was coming to talk tothem, it was clear that participants didnot really understand what the researchprocess is, and what I would be doingwith their replies, but were merely happyto answer my questions and tell me abouttheir lives. A developmental area for me,which is something that I have done insubsequent projects, has been to producean information sheet for the service userusing simple words and symbols. Thisexplains who I am, why I am askingthem questions and what I will do withwhat they tell me. It also covers the factthat what they say will be keptconfidential (unless they say someone ishurting them) and that the services theyreceive will not be affected. It has myphoto on it and gives details of how tocontact me. I have found it useful to gothrough this sheet with the person at thebeginning of each interview, as it helps toreinforce why I am there and that theirinput is valuable.Going through the information sheet alsohelps me to be more certain that peopleare in fact consenting to the interview.While they may not necessarilyunderstand what research is, they must beable to choose whether they wish to talkto me and answer my questions.However, during the interview it’simportant to consider verbal signals tomake sure that the person is still happy tocontinue with the interview and does notwish to withdraw.

Baxter: Learning to interview people with a learning disabilityInterview contentThe interviews were designed to be aconversation about people’s lives, withquestion prompts to elicit keyinformation. These were themed aroundquality of life elements, such as housing,daytime activities, education,employment, leisure activities, money,and transport. To keep the conversationflowing, I did not write down whatpeople said but tape recorded theinterview and recorded answers later.Only one person was unhappy about merecording their interview and refusedconsent.In order to establish people’s priorities Ishowed a picture card for each aspect oftheir life and asked them to say whichwere important to them and which werenot. However, almost all the cards wereput into the important pile and no onesaid that more than two aspects were notimportant to them. Even when a cardwas judged unimportant initially, manypeople later went on to talk about issueswithin that aspect, so had to move it tothe important category. Almost all of theparticipants found it difficult todistinguish whether the aspects were veryimportant to them or just important.Responses to questionsI found that if I asked questions with a‘yes/no’ answer, I had to probe theresponse given, for example, ‘why doyou say that?’ or ‘can you give me anexample?’ since many respondents didnot elaborate spontaneously. With somepeople, I also felt that they perhapswanted to agree with me or give ananswer that would please someone elsepresent (especially if a family carer orsupport worker was listening).During the interview, participants oftencontradicted something that they had saidearlier, which meant going back to thespecific question to test which one wasthe correct answer. Also, someparticipants appeared very suggestible,agreeing with whatever was asked, sothat I needed to probe to try to ascertaintheir actual feelings. This was one areawhere I found it helpful to have theadvocate present, as they could challengea response based on what they knew ofthe person or the preparatory work done.The advocates’ role during the interviewswas to introduce me and what I wasdoing and then support the person inanswering questions but not answer thequestions on the person’s behalf. Thisworked well and advocates onlycontributed if they thought the personhad not understood the question fully orthey needed to explain an answer to me.Advocates were usually able to explainquestions in terms participants couldrelate to (for example, talking about aspecific person’s name rather than a jobtitle) due to their knowledge of theperson and their life. This kind of nonoverpoweringcontribution may beunique to advocates since it is their roleto support a person to speak up. I havefound in subsequent projects thatsometimes family carers and supportstaff can overpower or speak on behalf ofthe person with a learning disability,which may be contrary to what theperson would say if on his or her own.I asked each person how happy he or shewas with each aspect of their life, at theend of the questions relating to that area.I had brought along a card with fourfaces on it, representing replies rangingfrom ‘very happy’ to ‘not at all happy’.The person could indicate which facebest described how they felt, either bypointing to it or telling me. I found thisworked well in helping the participants togive a reply: a few of them were able touse the word scale, but most seemed torespond best to the pictures’ expressions.177

Research Policy and Planning 23 (3)178Challenges to asking questions aboutchoice and controlThe people interviewed found it verydifficult to answer questions about whatthey would like to see change in theirlives. This seems to be because theyrelate mostly to personal experience andwere unable to think of an activity thatthey had not previously tried. Only oneperson gave any meaningful answer tothe question that came towards the end ofthe interview: ‘What one thing aboutyour life would you like to change?’Most respondents clearly could not thinkin this way or give an answer: whenprompted about things they hadmentioned earlier in the interview someagreed with the prompt. Wider picturedata was also difficult to extract, asalmost all the participants broughtgeneral questions back to theirindividual, small-scale concerns.In general, people struggled tounderstand what was meant by having achoice in their lives, with most requiringan explanation with concrete examples,such as choosing what to wear or what tohave for breakfast. The only two peoplewho were able to answer a questionabout how much choice they have intheir everyday lives said that they have alot of choice. However, the people inparticipants’ ‘circles’ were divided fairlyequally between those who felt that theyhad a lot of choice, quite a lot of choice,some choice or not very much choice.Only one family carer felt that theirrelative had no choice at all.Most participants seemed hesitant whenasked about how much control they hadover their lives, with less confidence inthemselves than others who know them.When asked who they feel is in charge,seven people said that the staff/carer wasin charge and just three felt that theywere. Family carers when asked thisquestion were more inclined to say thatdecisions were made jointly between theperson and staff.Length of interviewsMy experience was that the length of theinterview (the average was just over anhour long) was hardest for the peoplewith a lower level of understanding orcommunication skills. Several peopleclearly found it difficult to concentrateafter about an hour or so: sometimeshaving a break in the middle was usefulto restore concentration, although wherethis was the case I found that there waslittle point continuing for more thananother half an hour. One person wasworried about when her support workerwas going to arrive to take her into townto get her holiday money so that thisinterview was interrupted several timeswhen the advocate needed to reassure herthat everything was alright. It wastherefore difficult to get this person toconcentrate fully on my questions forvery long at a time.DiscussionHints and tips when planning researchBased upon my experiences, I havedrawn up a checklist for researchers,practitioners and policymakers who arehoping to include people with a learningdisability in planning or evaluatingservices or in undertaking research.• Decide whether you are going toinclude people with either limitedor no communication skills/understanding in your sample. Ifso, can you collect views/perceptions about them fromsomeone who knows them well?• Always try to gather informationusing the face-to-face approach.Many people with a learningdisability will be unable to read aquestionnaire, even if symbols areused, and will have difficulty in

Baxter: Learning to interview people with a learning disabilityunderstanding how to fill one in.They may also worry abouthaving to fill in an ‘official form’.Most would have to ask someonefor help to complete a writtenquestionnaire, in which case youwould not know whose opinionsare provided - the person him orherself or what the helper thinksthey might say.• Although the person with alearning disability has to consentto the interview, it is courtesy toinform others in their immediatecircle about the research. Thiscan help to gain the person’sconsent and smooth the way toarranging the interview.• Identify someone who canintroduce you and the research tothe participant: you cannot ‘coldcall’ people with a learningdisability. Ask if the person willneed a supporter in the interviewand if so who? If a supporter ispresent, check that the person ishappy to have them there and laydown some ground rules, forexample, that they are there tohelp the person answer thequestions and not provideanswers for them.• Produce a simple and accessibleinformation sheet explaining whatthe research is about, how itinvolves the person and details ofhow to contact the researcher. Gothrough this at the start of eachinterview and check the person’sunderstanding before they signthe (simply worded) consentform.• Try and hold the interview in aplace that the participant knowsand where they are comfortable.Spend a little time at the start ofthe interview to chat to the personand break the ice. It can take awhile for them to get used to yourpresence and open up toquestions. Explain that theirreplies will be kept confidentialand anonymous.• Keep interviews short. Have abreak if the participant seems tobe losing concentration. End theinterview if the participant seemsto be getting distressed or saysthat they would like to stop.• Keep your questions simple andbe prepared to probe theresponses given. Avoid questionswith yes/no answers, but whereyou include one of these types ofquestions then ask the participantto explain why they say that. If asupporter is present who knowsthe person well, they may be ableto help you to understand whatthe participant actually means.• Be aware that many people with alearning disability relate best tothings they have experienced intheir own lives. It is thereforedifficult to ask them how theyfeel about something that is newor different to what they know, orget them to think creatively.• Many people with a learningdisability are eager to please, sobe careful not to prompt themwith a suggestion or they may justagree with what you have said.• If you are using scales, keep themvery simple with no more thanfour points and prepare somesymbols (for example, happy/sadfaces) to represent each point onthe scale. Some participants willrespond better to pictures thanwords.• Pictures or symbols can help toengage the participant’s interestand help them visualise the179

Research Policy and Planning 23 (3)topics. This technique is alsoused when interviewing children.Notes on contributorVanessa Baxter worked for a majorengineering company for ten years,carrying out a variety of qualitative andquantitative research projects. Thisincluded researching customersatisfaction, brand values, market sizeand share. She then worked in thecommunications team for Essex SocialCare for over four years, before joiningthe Essex Social Care Research Team inAugust 2003. She passed the MarketResearch Society Diploma in 1996 and isa full member of the Market ResearchSociety.Address for correspondenceVanessa BaxterResearcherEssex Social CareCounty HallPO Box 297ChelmsfordCM1 1YSTelephone: 01245 434667.Email: vanessa.baxter@essexcc.gov.uk.180