Who is sensitising whom? A participatory interview guide development as an awareness tool within a health care research project

Abstract

In the methodological discourse on the qualitative, guided interview, well-composed interview guides are considered suitable instruments for collecting data and generating complex narratives on specific topics. In addition to deciding on an interview form, reflection on how and which questions to ask is described as the most important preliminary work for a qualitative interview [[1]Helfferich C. Die Qualität qualitativer Daten. Manual für die Durchführung qualitativer Interviews. VS Verlag, Wiesbaden2011Google Scholar] and the semi-structured interview guide is the most frequently used tool in qualitative research [[2]Kallio H. et al.Systematic methodological review: developing a framework for a qualitative semi-structured interview guide.J. Adv. Nurs. 2016; 72: 2954-2965https://doi.org/10.1111/jan.13031Crossref PubMed Scopus (815) Google Scholar,[3]DiCicco-Bloom B. Crabtree B.F. The qualitative research interview.Med. Educ. 2006; 40: 314-321https://doi.org/10.1111/j.1365-2929.2006.02418.xCrossref PubMed Scopus (1778) Google Scholar]. However, the interview guide is considered to play a tricky, ambivalent role: The guide can reinforce or mitigate interviewing errors, pretend too much or too little, and perpetuate the problematic attitude of the questioner to evoke only their own knowledge and viewpoints from the interviewee [[1]Helfferich C. Die Qualität qualitativer Daten. Manual für die Durchführung qualitativer Interviews. VS Verlag, Wiesbaden2011Google Scholar,[4]Breuer F. Reflexive Grounded Theory. Eine Einführung für die Forschungspraxis. VS Verlag, Wiesbaden2010Crossref Google Scholar,[5]Kruse J. http://www.unikoeln.de/hf/konstrukt/didaktik/biografiearbeit/seminarreader%20biographiearbeit%20und%20biographieforschung.pdfDate: 2013Date accessed: September 6, 2022Google Scholar]. In short, the interview guide is involved in power relations in the interview situation and is a central actor in their reinforcement, exercise, or mitigation. Yet, the research literature has so far questioned the powerful process of interview guide composition mainly unidirectionally from the interviewers to the interviewees [[1]Helfferich C. Die Qualität qualitativer Daten. Manual für die Durchführung qualitativer Interviews. VS Verlag, Wiesbaden2011Google Scholar,[2]Kallio H. et al.Systematic methodological review: developing a framework for a qualitative semi-structured interview guide.J. Adv. Nurs. 2016; 72: 2954-2965https://doi.org/10.1111/jan.13031Crossref PubMed Scopus (815) Google Scholar,[6]Busetto L. Wick W. Gumbinger C. How to use and assess qualitative research methods.Neurol. Res. Pract. 2020; 14: 1-10Google Scholar]: while interview types such as biographical interviews certainly do set different emphases in openness and closedness of questions and some theoretical conceptions of qualitative interviewing suggest to not use a guide at all, methodological reflections on the interview guide within guided interviews focus mainly on the researchers, who actively construct the interview guide. Semi-structured, guided interviews are illuminated in terms of how they would more or less legitimately direct and control the researched and what is said in the interview situation. In this setting, the respondents may refuse, hesitate, dither, or even keep silent, but the researchers remain the actual actors as they and their accomplice – the interview guide – specify and significantly shape the research situation. According to Thompson (2021), through the design of the interview guide, the researchers specify “what a dialogue is and what is to be represented” [[7]Thompson V. Partizipative Reflexivität postkolonialer Ethnografie und Möglichkeiten des Schweigens als Kritik.in: Flick S. Herold A. Zur Kritik der partizipativen Forschung. Forschungspraxis im Spiegel der Kritischen Theorie. Beltz Juventa, Weinheim Basel2021: 248-265Google Scholar]. Without negating structural hierarchies in the interview situation, we here take a different perspective that has so far been less illuminated in theoretical and methodological discussions about interview guide production. We explore how a collaborative process, following the criteria of participatory research, can weaken the power effects of the interview guide and mitigate a paternalistic attitude of the interviewers towards the interviewees. We are interested in how the collaborative design of the interview guide initiates negotiation processes between the researchers, the interviewees – hereafter referred to as co-researchers – and within a research team. We start by exploring theories on interview guide development, then describe our aims, purposes and research questions, depict our findings as four epiphanies and finally departing from theories of interview guides give recommendations for other researchers. To date there are many manuals, guidelines, and practical instructions on how to design an interview guide. For example, systematic methodological reviews such as Kallio et al. “provide a practical tool for researchers developing a semi-structured interview guide as a data collection method” [[2]Kallio H. et al.Systematic methodological review: developing a framework for a qualitative semi-structured interview guide.J. Adv. Nurs. 2016; 72: 2954-2965https://doi.org/10.1111/jan.13031Crossref PubMed Scopus (815) Google Scholar]. However, there is no specific theory that focuses exclusively on the use of guides in qualitative interviews, let alone on a theory of the semi-structured guide. Rather, guides are part of various theoretical approaches and methods used in qualitative research. Guides themselves often do not strictly follow a particular theoretical approach, but in turn are considered to serve as a tool to support a broader theoretical perspective. What does exist is a considerable body of work on theorizing the interview, the interviewer and the interview situation [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. These contributions do tackle theoretical conceptions of how to construct research instruments such as the semi-structured interview guide – but rather implicitly. In her comprehensive guide to the theory and practice of reflective inquiry, Kathryn Roulston (2010) refers to a wide variety of theoretical conceptions of the qualitative interview [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. We first introduce theories of interviewing which are most relevant for us and delineate the enclosed conceptions of the interview guide. We secondly justify our chosen theoretical markers for constructing the interview guide. Neo-positivist assumptions are still evident in much qualitative research [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. Neo-positivism is an approach in the philosophy of science that presumes that scientific knowledge can be obtained through the use of justified methods. In neo-positivistic conceptions of the interview, the interviewer appears as a rather detached, neutral figure which keeps “bias” and “researcher influences” as small as possible. The interviewer generates “quality” data and produces “valid” findings [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. In neo-positivistic approaches to interviewing, a guide appears a neutral tool to support objective and systematic research methods, constructed by the researcher, who should gather as much knowledge as possible in advance about the live worlds of the researched. The interview guide ought to be composed of “good questions”, arranged in a skillful manner. The guide suggests a high degree of structure in the interview situation and the interviewees’ answers are deemed to be more valid if they do not know why the interviewer has asked the question [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. Collaborative design of the guide is not envisioned in a neo-positivist approach. A further influential conception of the interview is the constructivist approach [[9]Charmaz K. Belgrave L. Qualitative interviewing and grounded theory analysis.in: Gubrion The SAGE Handbook of Interview Research: the Complexity of the Craft. 2012: 347-367https://doi.org/10.4135/9781452218403Crossref Scopus (508) Google Scholar] which sees the interviewer and interviewee as collaborators in constructing data. Both generate situated accountings and possible ways of talking about research topics. The researcher produces analyses of how the interviewer and interviewee made sense of the research topic and of constructed narratives [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. In a constructivist approach, the interview guide does not play a prominent role. For example Kathy Charmaz even “seldom takes an interview guide with her to the interview, as she prefers to keep the interview informal and conversational” [[9]Charmaz K. Belgrave L. Qualitative interviewing and grounded theory analysis.in: Gubrion The SAGE Handbook of Interview Research: the Complexity of the Craft. 2012: 347-367https://doi.org/10.4135/9781452218403Crossref Scopus (508) Google Scholar]. The guide is more a possible point of departure than a skillfully drafted, nevertheless rigid directive. The interview guide or single questions help the researcher to provide understandings of possible ways of discussing topics and does not strongly pre-structure the interview situation. In a transformative conception of the interview the interviewer dialogues with the interviewee and may work in collaboration to design, conduct and present the research project [10Wolgemuth J.R. Donohue R. Toward an inquiry of discomfort: guiding transformation in “emancipatory” narrative research.Qual. Inq. 2006; 12: 1022-1039Crossref Scopus (45) Google Scholar, 11Cranton P. Understanding and Promoting Transformative Learning. Jossey-Bass, San Francisco2016Google Scholar, 12Stinson D. Negotiating sociocultural discourses: the counter-storytelling of academically (and mathematically) successful African-American male students.Am. Educ. Res. J. 2008; 45: 975-1010Crossref Scopus (83) Google Scholar, 13Taylor E.W. Transformative learning theory.N. Dir. Adult Cont. Educ. 2008; 119: 5-15Crossref Google Scholar]. The interviewer and interviewee develop “transformed” or “enlightened” understandings as an outcome of dialogical interaction. Interpretations of data produce critical readings of cultural practices that challenge normative discourses. Data produced changes both interviewer and interviewee as each engage in dialogue that question how they approach their worlds. According to Roulston, the main purpose of transformative interviewing is “fostering social change for social justice” [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. Analytic methods and representations draw on critical, emancipatory, and psychoanalytic theoretical perspectives (for example, critical theory, feminist theory, critical race theory, hermeneutics, and psychoanalysis) [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. Transformative interviews do not necessarily use interview-guides in every interview but similar to constructionist conceptions favour initiating, open questions. These questions shall help that the interview situation becomes a purposefully structured talk. The thoroughly selected questions shall assist the researchers to “provide a space for people to engage critically and reflectively with issues that affect them daily” [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar]. When the conversation evolves the interviewer does not stick to a structured interview guide but listens carefully and might call upon participants to “think more deeply about the issues they bring to the discussion,” [[8]Roulston K. Reflective Interviewing. A Guide to Theory and Practice. Sage, Los Angeles2010Crossref Google Scholar] and might request examples of what participants mean. Instead of questions, transformative conceptions might prefer alternative elicitation strategies such as drawing, writing, or poetic transcriptions derived from prior data collection [[14]Freeman Melissa Nurturing dialogic hermeneutics and the deliberative capacities of communities in focus groups.Qual. Inq. 2006; 12: 81-95Crossref Scopus (29) Google Scholar]. We found ourselves identifying with each theory of the interview, however, in varying degrees concerning the level of structure and participation suggested by the theories. With a neo-positivist approach towards interviewing we share the believe that the interview guide ought to be composed of “good” questions, that means precise questions which come as close as possible to the life worlds of the interviewees, arranged in a skillfull manner. The subjective perspective regarding expectations and experience of participation in the interdisciplinary training concept should be inquired about and not, for example, primarily comprehensive biographical aspects, work environment, or general attitudes toward care. So the importance we give to an interview guide as a data generation tool differs from the other theories of the interview. In a constructionist version the guide has not such a relevance. As noted above Kathy Charmaz often does not use an interview guide at all. And different to the transformative approach which uses more experimental techniques to produce data, we stick to a rather traditional instrument. In accordance with transformative approaches, our interview guide might but not has to produce critical readings of social phenomenon that challenge norms. For example, the main purpose of the interview was not to fiercely critique a binary gender system. It was not our first concern to change the interviewees understandings, world views or self conceptions The construction of our interview guide indeed was somehow oriented towards social change but only to a certain extend – and transformation was not our main concern, so we only adopted a very light version of transformation. However, we agree with the critique on neo-positivist conceptions of the interview for omitting the experiences of both researcher and researched and not considering that data always is complexly co-produced [[15]Mishler E. Research Interviewing: Context and Narrative. Harvard University Press, Cambridge, MA1986Google Scholar,[16]Oakley A. Interviewing women: a contradiction in terms.in: Roberts H. Doing Feminist Research. Routledge, London1981: 30-61Google Scholar]. We sympathize with constructivist, and transformative requirement that the interviewer dialogues with the interviewee and may work in collaboration to design and conduct the research project. That is the reason why we also draw on theoretical fragments of the other theories. They are more suitable for a participatory approach towards constructing the guide. All enable a process in which the topics and questions of the interview guide are co-constructed, co-designed or co-developed. Especially a constructivist approach seems suitable for our paper because it “places priority on the studied phenomenon and sees both data and analysis as created from shared experiences and relationships with participants” [9). It also relies on the following assumptions: “multiple realities exist, (b) data reflect researchers’ and research participants’ mutual constructions, and (c) the researcher enters however incompletely, the participant's world and is affected by it.” [[9]Charmaz K. Belgrave L. Qualitative interviewing and grounded theory analysis.in: Gubrion The SAGE Handbook of Interview Research: the Complexity of the Craft. 2012: 347-367https://doi.org/10.4135/9781452218403Crossref Scopus (508) Google Scholar] The interviewee is invited to engage in developing the interview guide. The interview guide is not a neutral tool but part of the live worlds of the interviewees. The interview guide enables situated accounts on research topics. Indeed, in exchanging ideas about the interview guide and considering the interventions of our project partners we have encountered transformational moments for ourselves. However the term “transformative” interview denotes “work in which the researcher intentionally aims to challenge and change the understandings of participants, rather than “transformation” that may be associated with new understandings on the part of either interviewer or interviewee.” [[9]Charmaz K. Belgrave L. Qualitative interviewing and grounded theory analysis.in: Gubrion The SAGE Handbook of Interview Research: the Complexity of the Craft. 2012: 347-367https://doi.org/10.4135/9781452218403Crossref Scopus (508) Google Scholar]. In sum in terms of structure we tend more towards a neo-positivist attitude as we use a semi-structured interview guide. In terms of participation we tend towards the colloborative orientations of the other conceptions. Or to put it differently we put constructionist and transformative elements in constructing a partly neo-positivist semi-structured interview guide. The aim of this paper is to show how an interview guide designed according to the criteria of participatory research can positively influence the attitude of the interviewers and weaken the power effects of the interview guide. This aim shall be achieved by exactly contouring the processes of co-constructing the interview guide conjointly with the interviewees. To put it differently, the objectives of this paper encompass describing, contouring and analyzing the interactions that happen when giving back the interview guide to the interviewees, the changes made in the questions and reflections in the attitudes of the interviewers. The rationale of this paper is to further fill a variously identified research gap “on how to develop a semi-structured interview guide” [[2]Kallio H. et al.Systematic methodological review: developing a framework for a qualitative semi-structured interview guide.J. Adv. Nurs. 2016; 72: 2954-2965https://doi.org/10.1111/jan.13031Crossref PubMed Scopus (815) Google Scholar]. The process how to develop a semi-structured interview guide has rarely been systematically researched from a participatory perspective and there is a scarcity of studies that focus on the development of semi-structured guide by both the researchers and the co-researchers. The purpose of this paper especially is to discuss how such development can be conducted in a participatory way. Our research questions are: How can the semi-structured interview guide be designed participatively? Whether and how can the process of designing the interview guide also have an impact on the interviewers? How exactly can that be enriched participatory? What insights does the development process of the interview guide provide to the researchers? The semi-structured interview guide was developed for the qualitative evaluation of the Empower-DSD study. Its focus is on the development and evaluation of interdisciplinary, diagnosis-specific training for children, youths and young adults with a difference of sexual development (DSD) and their relatives. The term DSD encompasses a variety of diagnoses that can be divided according to the chromosomes in chromosomal DSD, 46,XY-DSD, and 46,XX-DSD and include differences in gonadal development, sex hormone synthesis, or sex hormone action. Some examples of DSD diagnoses are the Turner and Klinefelter syndrome, congenital adrenal hyperplasia (CAH), or complete androgen insensitivity syndrome (CAIS). Clinical characteristics, e.g., development of the external genitalia or pubertal development, as well as the time of diagnosis, vary individually. The participatory involvement of co-researchers in the interview guide development is part of the broader participatory orientation of the Empower-DSD study: the entire research process is conducted together with those whose lives and bodies are affected – people with DSD. Relatives, peers, and the self-help groups (SHGs) are actively involved during the whole study. The ideal core principle of participatory research is with and for and not about people. Experiences, insights, and expertise of involved persons should be systematically, symmetrically, and equally considered for knowledge production [[17]Schaefer I. Baer G. Die Auswertung qualitativer Daten mit Peerforschenden: Ein Anwendungsbeispiel aus der partizipativen Versorgungsforschung. vol. 20. Qualitative Sozialforschung, Forum2019Google Scholar,[18]Speck S. Parteilichkeit, Partnerschaft, Partizipation. Zur Kritik der Symmetrisierungsbestrebungen im Kontext empirischer Sozialforschung.in: Flick S. Herold A. Zur Kritik der partizipativen Forschung. Forschungspraxis im Spiegel der Kritischen Theorie. Beltz Juventa, Weinheim Basel2021: 114-129Google Scholar]. ‘The affected’ are to become co-researchers. Because of the project's core topic – differences of sex development – it makes particular sense to base Empower-DSD on a participatory approach: medical paternalism has determined the medical history of sex for a long time. A diagnosis of variant sex development often resulted in the ‘adjustment’ of external genital structures to one sex [19Bos S. Brecht A. Neumann U. et al.Trans* Gesundheit im Kindes- und Jugendalter.Pädiatrische Prax. 2022; 98: 1-15Google Scholar, 20Pauli D. Geschlechtsinkongruenz und Genderdysphorie bei Kindern und Jugendlichen.Psych. Up2date. 2016; 11: 529-543Google Scholar, 21Hughes I. Houk C. Ahmed S. Consensus statement on management of intersex disorders.J. Pediatr. Urol. 2006; 2: 148-162Abstract Full Text Full Text PDF PubMed Scopus (439) Google Scholar]. Families have often been left out of these decisions. Surgeries, often performed during infancy or early childhood, were done without comprehensive information or consent of the children due to their young age. This approach was also referred to as “optimal gender policy”. It followed the general presumption that to know and openly live with a difference in sex development most likely would lead to an unhappy life. In recent years, persons with DSD have fiercely criticised this policy [[22]McCauley E. Challenges in educating patients and parents about differences in sex development.Am. J. Med. Genet. C Semin. Med. Genet. 2017; 175: 293-299Crossref PubMed Scopus (15) Google Scholar], and the health care situation of intersex people has increasingly become a public issue. The German Ethics Council [[23]Deutscher Ethikrat. 2012http://www.ethikrat.orq/dateien/pdf/stellunqnahme-intersexualitaet.pdfGoogle Scholar] and the German Medical Association [[24]Bundesärztekammer. 2015http://www.bundesaerztekammer.de/downloads/BAeK-StnDSD.pdfGoogle Scholar] call for surgery to be performed only in “medically necessary” cases. The guideline “Variants of Sex Development” of the Scientific Medical Societies (AWMF), which has been valid since 2016, includes this demand in its recommendations and emphasizes the child's right to physical integrity and co-decision in therapeutic measures [[25]Deutscher EthikratIntersexualitätStellungnahmeBerlin: deutscher Ethikrat. Deutsche Gesellschaft für Urologie, Deutsche Gesellschaft für Kinderchirurgie.Deut. Gesellschaft Kinderendokrinologie und Diabetol. (2016). 2016; (S2k-Leitlinie 174/001: Varianten der Geschlechtsentwicklung. AWMF)https://doi.org/10.1007/s11930-018-0141-xCrossref Scopus (29) Google Scholar]. Finally, in May 2020, the “Law for the Protection of Children with Differences in Sexual Development” was enacted, declaring surgeries permissible only in life-threatening cases or cases that cannot be postponed to an age where the child can decide on its own. Further operations are possible in selected cases after prior approval by the family court. Thus, the guide development for qualitative evaluation of Empower-DSD is part of a shift in gender policies towards the standpoint that an open engagement with a diagnosis and/or ambiguous sex forms a necessary condition for a successful and happy life, and that this openness to its differences in sex development must be carefully developed with the ‘affected’ person and its close ones. The semi-structured interview method is considered as enabling reciprocity between the interviewer and participant [[2]Kallio H. et al.Systematic methodological review: developing a framework for a qualitative semi-structured interview guide.J. Adv. Nurs. 2016; 72: 2954-2965https://doi.org/10.1111/jan.13031Crossref PubMed Scopus (815) Google Scholar,[26]Galletta A. Mastering the Semi-structured Interview and beyond: from Research Design to Analysis and Publication. New York University Press, New York2012Google Scholar] and the benefit of participatory research is described to improve the quality of survey instruments (e.g. questionnaires, interview guides) [[27]Unger H. v Partizipative Forschung. Einführung in die Forschngspraxis Springer VS Wiesbaden.2014Crossref Google Scholar]. Yet, there has not been much systematic exploring on how exactly the co-researchers can be involved in the designing process of an interview guide, let alone a semi-structured interview guide. The participatory aspect is often only introduced only after the guide has already been developed. Following common insights of participatory research [[27]Unger H. v Partizipative Forschung. Einführung in die Forschngspraxis Springer VS Wiesbaden.2014Crossref Google Scholar], we think that data delivered through participant answers become better through the involvement of participants in designing as precise questions as possible. And we first and foremost believe that inserting participatory elements in a structuring tool can assymetrate the interview situation. This paper focuses on the interactions and negotiations that took place during the development of a semi-structured interview guide for a qualitative interview study. These processes fashioned into the interview guide were not surveyed by a rigid, encompassing method but contoured by log books and memos. The interview study was part of the broader mixed-methods Empower-DSD project. Following the suggestion of Elo et al. [[28]Elo S. Kääriäinen M. Kanste O. et al.Qualitative content analysis: a focus on trustworthiness.Sage Open. 2014; 4: 1-10Crossref Google Scholar] that the interviewees (or in our case the peers as subgroups of the interviewees) should be included in the development of the interview guides, the peer groups presented by the SHGs were included from the beginning of the interview study in the development of the interview guides. The researchers hope that in this way the interview guide would represent a precise knowledge of the various diagnoses that is as contextually accurate, as complex as possible, and gender-inclusive. Yet qualitative methods do not strive for strict replicability and reproducibility in a quantitative sense and cannot produce generalizable results. The empirical material of this contribution consists of methodical memos and entries from the logbooks of the two qualitative researchers. Methodical memos are short notes for which the researcher briefly interrupts the research process and writes down reflections and ideas on the methodical procedure, on the use of research instruments, or on its design. The literature mainly engages with theoretical memos, code, and category memos [[29]Mey G. Mruck K. Interviews.in: Mey G. Mruck K. Handbuch Qualitative Forschung in der Psychologie. VS Verlag für Sozialwissenschaften, Wiesbaden2010: 423-435Crossref Google Scholar,[30]Muckel P. Die Entwicklung von Kategorien mit der Methode der Grounded Theory.in: Mey G. Mruck K. Grounded Theory Reader. Zentrum für Historische Sozialforschung, Köln2007: 211-231Google Scholar]. Following the spirit of participatory research, we in turn argue here that methodical memos are also very important for fixing and specifying what is elusive, to facilitate collaboration and exchange with co-researchers. Here, we refer to memos of a methodical nature that were produced before and during the process of interview guide development. These memos go beyond the mere description and planning of methodical steps, as we will show below. The logbook, in turn, represents a version of a research diary and is one of the self-reporting instruments for data collection [[31]Kunz A. Log- und Tagebücher als Erhebungsmethode in ethnographischen Forschungsdesigns.in: Hitzler R. Gothe M. Ethnographische Erkundungen. Methodische Aspekte Explorativ-Interpretativer Forschungsprojekte. VS Verlag, Wiesbaden2015: 141-162Crossref Google Scholar]. The logbook is a writing and reflection method in which the researcher documents situations and at the same time analyses and interprets them. During writing, impressions, events, thoughts, and emotions should be recorded. We paid special attention to so-called epiphanies – to moments in the research process that were retrospectively and selectively perceived as particularly significant, disruptive, striking, or of essential nature [[32]Chilton J.M. Transformation from within: a concept analysis of epiphany.Creativ. Nurs. 2015; 21: 15-20Crossref PubMed Scopus (4) Google Scholar]. We began the interview guide development with research on the four diagnoses. They formed the context of the interdisciplinary training concept to be evaluated and thus also the context of the interview