Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group

© 2015 SAGE Publications, Ltd. All Rights Reserved. This PDF has been generated from SAGE Research Methods Datasets. SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group

Student Guide

Introduction Questionnaires are a relatively uncommon method used in qualitative research. Indeed, they are often presented as a quantitative approach to collecting data. This is, in part, due to the variety of definitions that characterise the term ‘questionnaire’, stretching from market research conducted in the centre of towns and cities to large-scale surveys such as population censuses. Unlike personally administered or postal questionnaires, this exemplar concentrates on a qualitative questionnaire given to members of an online support group for Irritable Bowel Syndrome (IBS). Messages were posted on the support group, detailing the project and inviting people to participate. The questionnaire was e-mailed to those people that responded to the message providing their contact details. The aims of the research were to examine the temporal and spatial aspects of living with Irritable Bowel Syndrome. How does IBS affect their daily lives? What are the effects of a chronic condition on their future aspirations? How important is diagnosis and prognosis in their IBS journey? The data is provided by Dr Jamie Lewis from the School of Social Sciences, Cardiff University. All the respondents have pseudonyms, named after of health and wellbeing. The exemplar demonstrates how you might approach analysing responses to a qualitative questionnaire from a dominant theoretical position such

Page 2 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 as time or space. The exemplar would be most useful for those interested in a thematic analysis of data.

Online Qualitative Questionnaire A qualitative questionnaire is a research instrument that asks respondents to reply to questions with detailed answers. The questions are mostly open-ended, offering respondents the opportunity to write responses in their own words, unrestricted by tick boxes. Distributing the questionnaires online enables the researcher to extend the reach of the project, attracting a more geographically dispersed population. Another benefit of online methods is the opportunity to examine difficult – sometimes ‘stigmatised’ – subject matters like IBS. In this study, the qualitative questionnaire has something in common with structured interviews. A key feature of both is the pre-planning of all the questions asked. The questionnaire was standardised and all participants were asked the same questions. Of course, three significant differences from a structured interview were that there was no face-to-face contact between the researcher and the researched, the responses came in written form, and respondents had more time to think about the questions, and to construct their answers. This was another reason why the method was chosen – to provide participants – many of whom felt unwell for significant parts of the day – the time to ‘respond when and how they [felt] comfortable’ (Selwyn and Robson, 2003: 87). Dr Lewis posted a message on the online support group advertising the project, and members that replied were sent the questionnaire. The accounts of the respondents were analysed, focusing specifically on aspects of time and space.

Data Exemplar: Living With Irritable Bowel Syndrome Designing a research strategy that attempts to test an existing hypothesis or theory is often described as taking a deductive approach to research. This dataset exemplar comes from a study of an online support group living with Irritable Bowel

Page 3 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 Syndrome (IBS) investigating aspects of time, space and health between 2002 and 2003. IBS is a functional bowel disorder that can affect the colon, small bowel and stomach (Stewart and Stewart, 1997). It is the most common ‘functional’ gastrointestinal disorder, with worldwide prevalence rates at around 11%, and United States rates estimated at over 20% (Canavan, West and Card, 2014). As a medical classification, it presumes the absence of a structural or biochemical explanation for the person’s symptoms (usually constipation, diarrhoea and/or pain) and therefore is often diagnosed after the elimination of other structural digestive conditions. After posting a message on an online IBS support group detailing the project, 31 users of the group expressed interest in being part of the study. Of those 31, 26 completed the lengthy 39-question qualitative questionnaire, which was divided into 5 sections called ‘Personal Information’, ‘IBS Changes’, ‘Leisure Activities’, ‘Work Activities’ and ‘Coping Strategies’, and which was sent via e-mail. The average age of respondents was circa 32. All but two of the respondents were diagnosed with IBS, with one respondent not having a diagnosis, and another having their diagnosis changed to food intolerance. The length of time participants had experienced IBS symptoms ranged from 3 months to 36 years, with only four respondents having lived with symptoms for two years or less. Respondents who completed the questionnaire varied in age, ranging from 19 to 60, and included people from the US, Canada, the UK, South Africa, Ireland and Denmark. Of the respondents, 4 were male and 22 were female. The aim of the research was to provide a temporal and spatial analysis of accounts of IBS. The exemplar is intended to show how you might approach the analysis of qualitative questionnaire data from a dominant – or deductive – theoretical position like time. The exemplar includes eight extracts of the many responses to different questions within the questionnaire.

Temporal Analysis of Living With a Chronic Illness The aim of the study was to focus on time (and space) and the body. Barbara

Page 4 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 Adam (1995) tells us, that as living beings, humans are characterised by rhythmical cycles. Bodily rhythms can range from the slow rhythms of a heartbeat and respiration system, to the much faster rhythms of chemical reactions and chemical oscillations. At times of ill-health, bodily rhythms might be out-of-sync, running too fast or too slow. For people with IBS, problems in the timing of food digestion from consumption to excretion can cause digestive problems e.g. diarrhoea (too fast) or constipation (too slow). A qualitative questionnaire can produce hundreds of pages of data. The analyst’s task is (i) to reduce, and (ii) to interpret the data. In the extracts provided we can see responses to questions that touch on different aspects of temporality such as discussions of the daily rhythms of the disorder, the planning and preparation of routine activities, and hopes for the future. How might we begin interpreting such data?

In the first extract, Brigid describes how she has connected the rhythms of the disorder with a daily eating routine she uses to try and prevent symptoms. She explicitly thinks about time and her condition by breaking the day into short periods. The shortening of time horizons into 5 minutes, 15 minutes and 30 minutes acts as a cognitive resource in helping her cope with physical and emotional pain better. Carefully planning her day, she has settled on a routine that helps her manage the disorder. If she breaks the routine, for whatever reason, and the balance is tipped, she adjusts the routine to counteract any imbalance. In analysing this account from a temporal perspective, we might begin by thinking of ideas such as synchronicity and asynchronicity, and the disconnect between structured human clock time (5 minutes, 15 minutes, 30 minutes), and environmental/biological time (the environmental rhythms of our body clock). We might think of the eating routine as a strategy for coping with the disorder, and as a way of synchronising the body clock with the hurly-burly of social life. Of course, this is not always possible for Brigid, as she might get caught somewhere without food or in a place where she is prohibited from eating. Taking this interpretation a step further, though, we might connect this account with more global changes in

Page 5 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 society. For example, we might question whether modern life is out of tune with the rhythms of our bodies, given that stress and stress-related illnesses are a major burden to modern society. This argument is further supported by another response in the data collected (not shown in the dataset), which stated that ‘IBS is not a new phenomenon, but it may be triggered because of our hectic lifestyles’. Balancing modern life with the rhythms of our bodies and the disorder might therefore be a motif to explore further.

Alternatively, we might look to explore another concept that emerges from this account and begin to think about ideas of the disciplined body. Brigid disciplines herself and eats at set times throughout the day. We might, therefore, want to unpack the different ways people diagnosed with IBS discipline their body. Here ideas of the disciplined body might extend to other activities other than just what and how respondents eat. They may extend to ideas of attempting to change the look of their body, as Glanis describes when going to the gym, or planning trips like a ‘military exercises’, as describes. Ideas of the disciplined body also have connections with Airmed’s account of how her body can sometimes punish her. Body can therefore be thought of as something you can control, putting food into, something that controls and has the potential to punish you, or something that is part of you and which you need to consider when planning even the shortest, most routine journey.

A third concept we might wish to explore centres on ideas of repetition, routine and ritual. In the account, Brigid describes the very precise eating procedures that she repeats day after day. We might therefore speculate as to what other routines people with IBS follow. More globally, is routine an important part of living with chronic disease? To what extent do people with IBS need to plan and prepare even the most mundane, everyday activities? Here we might make connections with the wider sociology of health and illness literature such as Kathy Charmaz’s (1991) work on chronic health and time, or Michael Bury’s

Page 6 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 (1991) work on coping strategies. In this exemplar, ’s account describes how she changes her eating routine based on the season – again making a connection between human-made clock-time (decisions on when to eat, e.g. lunchtime, breakfast) and environmental time (the four seasons). Sirona and Glanis’ accounts also relate to preparing other mundane routines such as planning trips in the car and when to use the washroom. Aspects of precision, planning and preparation therefore appear to be important concepts to explore further.

At this stage we could even begin to generalise a little. According to some of the respondents in the study, planning everyday routines are central coping strategies in order to manage the disorder. These include keeping snacks handy, following set regimes and planning travel arrangements with ‘military’ precision. Sirona also writes about ‘safe places’. When analysing the accounts we might therefore turn our attention to ‘safe’ and ‘dangerous’ places – for example, the washroom as a place of comfort and the car as a place of jeopardy. Of course, cars can be dangerous places for many people, for example when going at high speeds, but danger here relates to distance from the washroom. We might therefore take this opportunity to explore in more detail other aspects of space and place in the data, such as IBS at social events or IBS at work.

Finally, examining Lenus’ and ’ extracts we see responses detailing how their life is on hold, and how life is passing them by. Time here can be thought of as being ‘stuck in the present’. Indeed, we could turn to the work of Victor Turner (1974) and think about notions of being stuck in permanent liminality and of being trapped in the present. We could also make a connection between these two accounts and Brigid’s account, to think about how long-term future orientations, aspirations and dreams such as careers and families can be replaced by short- term horizons when ill, such as how to get through the next couple of hours.

There are, of course, many other themes and concepts we might want to explore.

Page 7 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 Just from the excerpts provided, we could focus more on transitions – between night and day, between hot and cold, between seasons; we could look at notions of the ‘active’ body; or we could work with more general themes such as identity and embodiment. The general point here, though, is dealing with qualitative questionnaires. The extracts provided, along with the accompanying narrative, show how, beginning with a theoretically informed analysis sometimes known as a deductive approach, you might create some lower-level concepts. For example, beginning with the macro theories of time and space, we have created some middle-order, analytic categories such as the disciplined body, safe and dangerous places, everyday routines and liminality, as well as some lower-order, less developed temporal categories such as synchronicity, repetition, rhythms, transitions, planning and preparation and rituals.

Qualitative questionnaires are not among the most prominent methods in qualitative research because they do not allow for any error of misinterpretation. Questions need to be clear. It is therefore important to note that further communication was made with participants after they had completed the questionnaire to clarify answers and to continue the dialogue. This aspect to the study is, of course, another difference to simply conducting structured interviews. Qualitative questionnaires are also time-heavy for respondents. It is quicker to participate in an interview than to write the same narrative down on paper. However, they have their uses, especially as a means of collecting information from a wider sample than can be reached by personal interview, and for researching sensitive and taboo subjects such as health, and bowel movements where respondents may not wish to be interviewed.

Reflective Questions

1. Why might you choose qualitative questionnaires over other research methods like structured or semi-structured interviews?

Page 8 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 2. What other methods might you utilise to study groups online? 3. What are the advantages and disadvantages of approaching a research setting from a dominant theoretical position such as time? 4. How does a deductive approach to research differ from an inductive approach? 5. Using the extra data provided and thinking about ideas of time and space, what other themes emerge from respondents’ accounts?

Further Reading Adam, B. (1995). Timewatch: The Social Analysis of Time. Cambridge: Polity Press.

Bury, M. (1991). The Sociology of Chronic Illness: a Review of Research and Prospects. Sociology of Health and Illness 13(4): 451–468.

Canavan, C., West, J., & Card, T. (2014). The Epidemiology of Irritable Bowel Syndrome. Clinical Epidemiology 6: 71–80.

Charmaz, K. (1991). Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press.

Fielding, N., Lee, R. M., & Blank, G. (2008). The SAGE Handbook of Online Research Methods. London: SAGE Publications.

Lewis, J. (2006). Making Order out of a Contested Disorder: the Utilisation of Online Support Groups in Social Science Research. Qualitative Researcher 3: 4–7.

Selwyn, N., & Robson, K. (2003). ‘Email as a Research Tool’. In R. L. Miller & J. D. Brewer (eds.) The A-Z of Social Research: A Directory of Key Social Science Research Concepts (pp. 86–91). London: SAGE.

Page 9 of 10 Dealing With Qualitative Questionnaire Data: Studying an Online Irritable Bowel Syndrome (IBS) Support Group SAGE SAGE Research Methods Datasets Part 2015 SAGE Publications, Ltd. All Rights Reserved. 1 Stewart, M., & Stewart, A. (1997). No More IBS: Beat Irritable Bowel Syndrome with the Medically Proven Women’s Nutritional Advisory Service Programme. London: Vermillion.

Toerien, M., & Wilkinson S. (2004). Exploring the Depilation Norm: a Qualitative Questionnaire Study of Women’s Body Hair Removal. Qualitative Research in Psychology. 1(1): 69–92.

Turner, V. (1974). Liminal to Liminoid in Play, Flow, and Ritual: An Essay in Comparative Symbology. Rice University Studies 60(3): 53–92.

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