Analysing Semi-Structured Interviews: Understanding Family Experience of Rare Disease and Genetic Risk

Transcription

1 Analysing Semi-Structured Interviews: Understanding Family 2015 SAGE Publications, Ltd.. All Rights Reserved. This PDF has been generated from.

2 Analysing Semi-Structured Interviews: Understanding Family Student Guide Introduction This dataset exemplar focuses on the analysis of semi-structured interviews, taking a thematic, grounded theory approach. The extracts provided are from interviews conducted as part of a project that aimed to explore the experience of being a parent of a child with a rare genetic disease: 22q11 deletion syndrome. This syndrome is associated with a wide range of symptoms, including heart defects, immune deficiency and cleft palate. Patients with the disease will often be seen by numerous medical specialists, or will attend a 22q11 deletion syndrome clinic, which brings together several professionals from different specialisms. This specific disease was chosen because it helps us reflect on what it means for a disease to be genetic. Many cases occur de novo, that is, they are caused by a spontaneous genetic mutation that has not been inherited from either parent. Due to the variable nature of the syndrome and the possibility of very mild symptoms, parents will sometimes, but not necessarily always, be offered testing following their child s diagnosis. Semi-structured interviews were used to explore parents accounts of living with a child diagnosed with the disorder. This technique was chosen because it allows the participants the freedom to talk about what they considered important. The data is provided by Dr Rebecca Dimond from Cardiff University, who was funded to conduct the research as part of her Economic and Social Research Council-funded PhD. Interviews were recorded and transcribed, and then analysed according to thematic analysis, allowing themes to emerge as the research progressed. This qualitative research approach does not necessarily produce results that are generalisable to other conditions, nor can it hope to represent the experience of all those with experience of 22q11 deletion syndrome. Instead, by producing a detailed account of the potential impact of a complex, uncertain and rare genetic disorder on patients and their families, this research contributed valuable knowledge to an under-researched subject. The exemplar will be of most use to those using and analysing semi-structured interviews, and those interested in the sociology of health and illness. Semi-Structured Interviews Semi-structured interviewing is one of the most popular methods of data collection in qualitative research. Semi-structured interviews are often conducted using an interview schedule as a guide. The guide can contain a list of topics that might be covered, or potential questions and sub-questions that the researcher could ask. These techniques allow the conversation to flow, without needing to stick rigidly to a script of pre-defined questions, or having to ask the questions in a particular order. This style of interview has been described as an open conversation (Kvale, 1996) or a guided conversation (Rubin & Rubin, 1995). The semi-structured interview allows the researcher to ask follow-up questions as a prompt to explore a topic in more depth, and gives the participant more time to elaborate. The role of the researcher, and their preparation before the interview in producing a useful interview schedule, are important in semi-structured interviews. As Kvale (1996, p. 129) highlights, A good interview question should contribute thematically to knowledge production and dynamically to promoting a good interview interaction. The flexibility of semi-structured interviewing is useful because researchers often have little knowledge of the individual s circumstance before meeting a participant. In this case, for example, the researcher knew that they were interviewing a parent of a child with a rare disease, but did not know how old the child was or how severely s/he was affected. Data Exemplar: Semi-Structured Interviews with Parents of Children with a Genetic Syndrome The data in the exemplar comes from a study conducted by Dr Rebecca Dimond between 2008 and Rebecca Page 2 of 6

3 scripted the interview schedules and conducted all the interviews herself. Parents were initially contacted through a 22q11 deletion syndrome clinic in England, United Kingdom, from where they were posted information about the project. If parents were interested in taking part, they replied directly to Rebecca, and an interview was arranged. Twenty-five interviews were conducted, with each lasting between one and two hours. Most interviews were conducted in the parent s home, although two were conducted in local coffee shops at the request of the parent. Many of the parents interviewed would not have talked about their experiences before, nor previously been involved in this kind of research project. It was therefore important that they felt comfortable, and interviewing in their own home if they chose, rather than at the researcher s place of work, can contribute to this. In order to ensure a high response rate, it was also important that the researcher was able to travel to people s homes, rather than expect the participants themselves to travel. The main topics discussed in the interviews included the experience of diagnosis, the symptoms of the disease, communicating with health professionals, communicating within the family, and information-seeking strategies. The interviews were audio-recorded and transcribed to produce a written record for analysis. All research participants were anonymised and given pseudonyms in line with National Health Service ethical procedures. The excerpts provided in this exemplar are from interviews conducted with mothers (extract 1, 2 and 3) of children with 22q11 deletion syndrome, a mother and father (extract 4) and a mother and a grandmother (extract 5). The children were different ages at the time of the interview, ranging from between 1 year old to 15 years old, and diagnosed at various ages. The difference in age at diagnosis can be due to variation in the child s symptoms and severity, and when the child was referred, or had access, to specialist services. Analysis: Thematic/Grounded Theory Analysis of Semi-Structured Interviews The semi-structured interviews Rebecca conducted were analysed according to thematic analysis informed by grounded theory. Grounded theory, developed by Glaser and Strauss, is a systematic approach to data allowing themes to emerge as the research progresses (Coffey & Atkinson, 1996; Payne & Payne, 2004; Strauss & Corbin, 1998). Grounded theory provides a research framework that can account for complexity, by constantly and consistently developing interpretations of data, leading to the development of conceptually dense theories. Here, Rebecca talks you through how you might analyse the data systematically, situating the data collected within the wider literature in the field, but also in a way that remains true to the research questions, and the interest of the researcher. General Tip The trick is not to feel overwhelmed with the data. To help with this, analysis should begin as soon as an interview is completed, so that the researcher can learn from their experiences and reflect on what kinds of topics would have been useful to follow up. Analysis comprises making notes, highlighting themes, recognising patterns within the texts and referring to academic literature. Thus, as soon as the interview recording is transcribed, I read the transcription several times, allowing common themes to emerge. These themes were noted, similar examples found within that or other transcript(s) and comparisons drawn from relevant literature. AtlasTi a qualitative computer programme was then used as a management tool to organise the documents and to systemise the coding structure. However, if you feel more comfortable, this can be done by hand, by highlighting text of interest on a printed copy. Whether you use pen and paper, or a computer package, the end result will be the same: transcripts that contain many highlighted statements that are linked to key themes, thoughts and references to current literature. From the interviews I conducted with parents, twenty primary codes emerged, including (i) diagnosis, (ii) genetic risk, (iii) genetic technology, (iv) medical knowledge, (v) sources of support and (vi) sources of information. Once you have a good grasp of the data and the general themes and codes that emerge, you can get into the nitty-gritty of the analysis. Here are some further tips. Analysing the Data Page 3 of 6

4 Stage 1: Read over your transcripts, what strikes you as particularly interesting? Research projects can be long, and the period of analysis can be quite intense. This makes it easy for the researcher to lose interest and focus, particularly because transcripts need to be read several times. I always look forward to reading a new transcript I print it off as soon as possible and head to a coffee shop. With a coloured pen I then highlight anything that I find particularly interesting, even if I cannot articulate why it has attracted my attention. During this read through, I write notes on the transcript. This can include questions to myself and topics that might be interesting to think about further. At this stage of analysis, I try not to think about the research questions, because I know that the interviews will have been loosely based on them the aim is to open up the data and use my imagination. I try not to be too constrained, so if I come across an unusual word or phrase, then I will highlight it without having to think about whether it will end up being significant to my project. During this initial read through, I highlighted the phrases it s not from my side", accused and relief in extract 1 of the exemplar and There is nothing wrong with us, you didn t get it from us from extract 2. These words and phrases interested me because they were not about the child or the child s health, but referred to the genetic cause of the disease and suggested an emotional response by other family members. Stage 2: Re-read and try to make sense of your choices Once I have read over the transcript and jotted down the things that I find particularly interesting, the second stage for me is to read over again, try to make sense of the things that I initially found interesting, and attempt to identify and focus on key topics, including the research questions. As I read through a transcript, I will try to put a name to some of the passages I have highlighted, and link them to similar passages in another transcript. I will think more about these passages, for example, why might these be sociologically interesting? Have I read anything in current literature that might relate to these passages? During the next read through, I realised that these two passages in extracts 1 and 2 were connected because both related to blame, responsibility and communication within the family. Stage 3: Turn to the Literature In grounded theory we are encouraged to use our data as the starting point but in order to make sense of it to return frequently to the literature. I found that while childhood disease can have an impact on parents and family members, a genetic disease can have specific and significant implications. One key idea within the sociological literature was particularly useful for providing the context for understanding these extracts: 1. Genetic technology produces a new lens for understanding responsibility: See, for example, Hallowell (1999). Stage 4: Repeat stages 2 and 3 as you continue to interpret and understand your data There are further similarities and connections between the extracts. In both of these extracts, parents also discussed how family members reacted to the diagnosis of a genetic syndrome. Collectively, these highlighted that there were considerable barriers in talking to family members about genetics and genetic risk. The fact that many of the parents mentioned difficulties in talking to family members about the child s genetic diagnosis was particularly striking, because it contrasted with their apparent ease in talking about the health of the child. In extract 2, the mother described how her father responded to the news, stating there is nothing wrong with us and she didn t get it from our side of the family. This extract reveals that a diagnosis of a genetic disease has the potential for creating division within the family. The use of us and our are significant. Sides are identified that map onto individual blood lines and are distinguished from the other. Blame and responsibility are negotiated, and genetic tests are therefore simultaneously individualising and collectivising, as the information revealed is constructed as relating to only one side of Page 4 of 6

5 the family. The first two extracts also highlight how parents can represent themselves as responsible by being open to the possibility of being the source of their child s illness. However, willingness to accept a role in genetic transmission appears to be conditional. This is the case in extract 1, where the mother rejected any sense of blame from others, which in this example was from the in-laws. Turning again to the literature, I found these ideas particularly useful in assisting me to analyse the information: 1. Communication within the family can be varied. Family members can base decisions about who to tell about genetic risk and how to tell them on the basis of whether that person is showing any symptoms, or how that person might cope: See, for example, Featherstone, Clarke, Bharadwaj, and Atkinson (2006). 2. Women often take on a key role as communicators for the family: See, for example, Richards (1996). Stage 5: Focus the analysis From this initial groundwork, I began to focus my analysis. The interviews contained a wealth of information about families adapting to the ill health of a child, and how that impacted on different family members in different ways. However, my focus was on the meanings that participants gave specifically to genetic disease and genetic risk, and this then led me to recognise the significance of stigma. As I was reading these extracts together, I realised that parents were describing how a genetic diagnosis can be negotiated as a stigmatised identity. It was at this point that I once again returned to the literature. Stigma is a process whereby particular characteristics of a person or group are distinguished and discredited. Examples of stigmatised illnesses within the literature include epilepsy and HIV, which might involve practices of concealment and restricted disclosure (Green, 2003; Schneider & Conrad, 1980). I found another extract from my dataset that could be used here to provide additional food for thought. In a different interview a section of which is reproduced here as extract 3 one mother talked about her ex-husband, saying that he would have fobbed it off as that if it was genetic it certainly wasn t from him". This can, once again, be related to literature where we know that dismissing the views of others as ignorant can be a way of managing potential stigma (Etchegary, 2010). It was also clear from my reading of work in the field that our understanding of stigma is mostly informed by talking about the reactions of outsiders (Green, 2003). Thus, where my analysis has been able to contribute to the literature, and extend our understanding, is by highlighting how a genetic diagnosis can be stigmatised from within the family. Main Tips Overall, my main tips for doing analysis of semi-structured interviews are: 1. Enjoy reading your transcripts. The participants have given you their time and energy, and it is important to value and use their accounts. 2. As you read through, highlight key words, phrases or passages. 3. Make notes alongside, including your thoughts, link to other transcripts and link to literature in the field. 4. At some stage you might like to separate out the key passages that relate to a particular theme from across the transcripts into one document it helps you think about why you have put these texts together and also what doesn t fit, and why. 5. Remember to go back to the literature; this can help you make sense of your data. You can confirm what other authors have found, but try to go beyond this: what are you discovering in your data and why is your data sociologically interesting and sociologically important? Page 5 of 6

6 6. Overall, analysis is a constant cycle of reading, thinking about the data, relating it to literature, and giving it context. Reflective Questions 1. What kinds of preparation would a researcher need to do before conducting an interview? 2. Grounded analysis begins with discovering and marking up important and interesting extracts in the interview transcript. How else are potentially useful themes generated in a qualitative research project? 3. Using the extracts and the additional extracts, how do different people in the family react to a genetic diagnosis? 4. Read through all the interview extracts provided, including the extra data. Highlight any words or phrases that interest you. Make notes in the margin or add comments if you have any thoughts while reading the text these can be about your own ideas, questions you have or thoughts about potentially useful literature. How would you begin to write up your ideas? Further Reading Coffey A., & Atkinson, P. (1996) Making sense of qualitative data: Complementary research strategies. Thousand Oaks, CA: SAGE Publications, Inc. Dimond, R. (2014). Negotiating blame and responsibility in the context of a de novo mutation. New Genetics and Society, 33(2), Etchegary, H. (2010) Stigma and genetic risk: perceptions of stigma among those at risk for Huntingdon Disease (HD). Qualitative Research in Psychology, 4(1), Featherstone, K., Clarke, A., Bharadwaj, A., & Atkinson, P. (2006). Risky Rrlations: Family kinship and the new genetics. Oxford: Berg. Green, S. E. (2003) What do you mean what s wrong with her? : stigma and the lives of families of children with disabilities. Social Science and Medicine, 57(8), Hallowell, N. (1999). Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21(5): Kvale, S. (1996) InterViews: An introduction to qualitative research nterviewing. Thousand Oaks, CA: SAGE Publications, Inc. Parsons, E., & Atkinson, P. (1992) Lay constructions of genetic risk. Sociology of health and illness, 14(4), Payne, G., & Payne, J. (2004) Key concepts in social research. London: SAGE Publications Ltd. Richards, M. (1996) Families kinship and genetics. In T.Marteau & M.Richards (Eds.), The troubled helix (pp ). Cambridge: Cambridge University Press. Rubin, H.J., & Rubin, I.S. (1995) Qualitative interviewing. Thousand Oaks, CA: SAGE Publications, Inc. Schneider, J. W., & Conrad, P. (1980). In the closet with illness: epilepsy, stigma potential and information control. Social Problems, 28(1), Strauss, A., & Corbin, J. (1998) Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: SAGE Publications, Inc. Page 6 of 6