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

In the methodological discourse on qualitative, guided interview, well-composed interview guides are considered suitable instruments for collecting data and generating complex narratives specific topics. addition to deciding an form, reflection how which questions ask is described as most important preliminary work a qualitative [[1]Helfferich C. Die Qualität qualitativer Daten. Manual für die Durchführung Interviews. VS Verlag, Wiesbaden2011Google Scholar] semi-structured guide frequently used tool in research [[2]Kallio H. et al.Systematic review: developing framework guide.J. Adv. Nurs. 2016; 72: 2954-2965https://doi.org/10.1111/jan.13031Crossref PubMed Scopus (823) Google Scholar,[3]DiCicco-Bloom B. Crabtree B.F. The interview.Med. Educ. 2006; 40: 314-321https://doi.org/10.1111/j.1365-2929.2006.02418.xCrossref (1785) Scholar]. However, play tricky, ambivalent role: can reinforce or mitigate interviewing errors, pretend too much little, perpetuate problematic attitude of questioner evoke only their own knowledge viewpoints from interviewee Scholar,[4]Breuer F. Reflexive Grounded Theory. Eine Einführung Forschungspraxis. Wiesbaden2010Crossref Scholar,[5]Kruse J. http://www.unikoeln.de/hf/konstrukt/didaktik/biografiearbeit/seminarreader%20biographiearbeit%20und%20biographieforschung.pdfDate: 2013Date accessed: September 6, 2022Google short, involved power relations situation central actor reinforcement, exercise, mitigation. Yet, literature has so far questioned powerful process composition mainly unidirectionally interviewers interviewees Scholar,[2]Kallio Scholar,[6]Busetto L. Wick W. Gumbinger How use assess methods.Neurol. Res. Pract. 2020; 14: 1-10Google Scholar]: while types such biographical interviews certainly do set different emphases openness closedness some theoretical conceptions suggest not at all, reflections within focus researchers, who actively construct guide. Semi-structured, illuminated terms they would more less legitimately direct control researched what said situation. this setting, respondents may refuse, hesitate, dither, even keep silent, but researchers remain actual actors accomplice – specify significantly shape According Thompson (2021), through design guide, “what dialogue 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 Kritischen Theorie. Beltz Juventa, Weinheim Basel2021: 248-265Google Without negating structural hierarchies situation, we here take perspective that been discussions about production. We explore collaborative process, following criteria participatory research, weaken effects paternalistic towards interviewees. interested initiates negotiation processes between hereafter referred co-researchers team. start by exploring theories development, then describe our aims, purposes questions, depict findings four epiphanies finally departing give recommendations other researchers. To date there many manuals, guidelines, practical instructions For example, systematic reviews Kallio al. “provide collection method” no theory focuses exclusively interviews, let alone Rather, part various approaches methods research. Guides themselves often strictly follow particular approach, turn serve support broader perspective. What does exist considerable body theorizing interviewer [[8]Roulston K. Reflective Interviewing. A Guide Theory Practice. Sage, Los Angeles2010Crossref These contributions tackle rather implicitly. her comprehensive practice reflective inquiry, Kathryn Roulston (2010) refers wide variety first introduce relevant us delineate enclosed secondly justify chosen markers constructing Neo-positivist assumptions still evident Neo-positivism approach philosophy science presumes scientific obtained justified methods. neo-positivistic appears detached, neutral figure keeps “bias” “researcher influences” small possible. generates “quality” produces “valid” interviewing, objective methods, constructed researcher, should gather possible advance live worlds researched. ought composed “good questions”, arranged skillful manner. suggests high degree structure interviewees’ answers deemed valid if know why asked question Collaborative envisioned neo-positivist approach. further influential conception constructivist [[9]Charmaz Belgrave Qualitative grounded analysis.in: Gubrion SAGE Handbook Interview Research: Complexity Craft. 2012: 347-367https://doi.org/10.4135/9781452218403Crossref (513) sees collaborators data. Both generate situated accountings ways talking researcher analyses made sense topic prominent role. example Kathy Charmaz “seldom takes with she prefers informal conversational” point departure than skillfully drafted, nevertheless rigid directive. single help provide understandings discussing topics strongly pre-structure transformative dialogues collaboration design, conduct present project [10Wolgemuth J.R. Donohue R. Toward inquiry discomfort: guiding transformation “emancipatory” narrative research.Qual. Inq. 12: 1022-1039Crossref (45) Scholar, 11Cranton P. Understanding Promoting Transformative Learning. Jossey-Bass, San Francisco2016Google 12Stinson D. Negotiating sociocultural discourses: counter-storytelling academically (and mathematically) successful African-American male students.Am. 2008; 45: 975-1010Crossref (83) 13Taylor E.W. learning theory.N. Dir. Adult Cont. 119: 5-15Crossref develop “transformed” “enlightened” outcome dialogical interaction. Interpretations produce critical readings cultural practices challenge normative discourses. Data produced changes both each engage worlds. Roulston, main purpose “fostering social change justice” Analytic representations draw critical, emancipatory, psychoanalytic perspectives (for theory, feminist race hermeneutics, psychoanalysis) necessarily interview-guides every similar constructionist favour initiating, open questions. shall becomes purposefully structured talk. thoroughly selected assist space people critically reflectively issues affect them daily” When conversation evolves stick listens carefully might call upon participants “think deeply bring discussion,” request examples mean. Instead prefer alternative elicitation strategies drawing, writing, poetic transcriptions derived prior [[14]Freeman Melissa Nurturing dialogic hermeneutics deliberative capacities communities groups.Qual. 81-95Crossref (29) found ourselves identifying however, varying degrees concerning level participation suggested theories. With share believe “good” means precise come close life interviewees, skillfull subjective regarding expectations experience interdisciplinary training concept inquired not, primarily aspects, environment, general attitudes toward care. So importance generation differs interview. version relevance. As noted above all. And uses experimental techniques data, traditional instrument. accordance approaches, phenomenon norms. was fiercely critique binary gender system. It concern understandings, world views self construction indeed somehow oriented certain extend concern, adopted very light transformation. agree omitting experiences considering always complexly co-produced [[15]Mishler E. Research Interviewing: Context Narrative. Harvard University Press, Cambridge, MA1986Google Scholar,[16]Oakley Interviewing women: contradiction terms.in: Roberts Doing Feminist Research. Routledge, London1981: 30-61Google sympathize constructivist, requirement project. That reason also fragments They All enable co-constructed, co-designed co-developed. Especially seems paper because it “places priority studied analysis created shared relationships participants” [9). relies assumptions: “multiple realities exist, (b) reflect researchers’ participants’ mutual constructions, (c) enters however incompletely, participant's affected it.” invited enables accounts Indeed, exchanging ideas interventions partners have encountered transformational moments ourselves. However term “transformative” denotes “work intentionally aims participants, “transformation” associated new either interviewee.” sum tend colloborative orientations conceptions. Or put differently elements partly aim show designed according positively influence This achieved exactly contouring co-constructing conjointly differently, objectives encompass describing, analyzing interactions happen when giving back interviewers. rationale fill variously identified gap “on guide” rarely systematically scarcity studies development co-researchers. especially discuss conducted way. Our are: participatively? Whether designing impact interviewers? enriched participatory? insights researchers? developed evaluation Empower-DSD study. Its interdisciplinary, diagnosis-specific children, youths young adults difference sexual (DSD) relatives. DSD encompasses diagnoses divided chromosomes chromosomal DSD, 46,XY-DSD, 46,XX-DSD include differences gonadal sex hormone synthesis, action. Some Turner Klinefelter syndrome, congenital adrenal hyperplasia (CAH), complete androgen insensitivity syndrome (CAIS). Clinical characteristics, e.g., external genitalia pubertal well time diagnosis, vary individually. involvement orientation study: entire together those whose lives bodies DSD. Relatives, peers, self-help groups (SHGs) during whole ideal core principle people. Experiences, insights, expertise persons systematically, symmetrically, equally production [[17]Schaefer I. Baer G. Auswertung Daten mit Peerforschenden: Ein Anwendungsbeispiel aus Versorgungsforschung. vol. 20. Sozialforschung, Forum2019Google Scholar,[18]Speck Parteilichkeit, Partnerschaft, Partizipation. Symmetrisierungsbestrebungen Kontext empirischer Sozialforschung.in: 114-129Google ‘The affected’ become Because project's makes base approach: medical paternalism determined history long time. diagnosis variant resulted ‘adjustment’ genital structures one [19Bos Brecht Neumann U. al.Trans* Gesundheit Kindes- Jugendalter.Pädiatrische Prax. 2022; 98: 1-15Google 20Pauli Geschlechtsinkongruenz Genderdysphorie bei Kindern Jugendlichen.Psych. Up2date. 11: 529-543Google 21Hughes Houk Ahmed Consensus statement management intersex disorders.J. Pediatr. Urol. 2: 148-162Abstract Full Text PDF (439) Families left out these decisions. Surgeries, performed infancy early childhood, were done without information consent children due age. “optimal policy”. followed presumption openly likely lead unhappy life. recent years, criticised policy [[22]McCauley Challenges educating patients parents development.Am. Med. Genet. C Semin. 2017; 175: 293-299Crossref (15) Scholar], health care increasingly public issue. German Ethics Council [[23]Deutscher Ethikrat. 2012http://www.ethikrat.orq/dateien/pdf/stellunqnahme-intersexualitaet.pdfGoogle Medical Association [[24]Bundesärztekammer. 2015http://www.bundesaerztekammer.de/downloads/BAeK-StnDSD.pdfGoogle surgery “medically necessary” cases. guideline “Variants Sex Development” Scientific Societies (AWMF), since 2016, includes demand its emphasizes child's right physical integrity co-decision therapeutic measures [[25]Deutscher EthikratIntersexualitätStellungnahmeBerlin: deutscher Deutsche Gesellschaft Urologie, Kinderchirurgie.Deut. Kinderendokrinologie Diabetol. (2016). (S2k-Leitlinie 174/001: Varianten Geschlechtsentwicklung. AWMF)https://doi.org/10.1007/s11930-018-0141-xCrossref Finally, May 2020, “Law Protection Children Differences Sexual enacted, declaring surgeries permissible life-threatening cases cannot postponed age where child decide own. Further operations after approval family court. Thus, shift policies standpoint engagement and/or ambiguous forms necessary condition happy life, must ‘affected’ person ones. method enabling reciprocity participant Scholar,[26]Galletta Mastering Semi-structured beyond: Design Analysis Publication. New York York2012Google benefit improve quality survey (e.g. questionnaires, guides) [[27]Unger v Forschngspraxis Springer Wiesbaden.2014Crossref aspect introduced already developed. Following common think delivered better foremost inserting structuring assymetrate negotiations took place fashioned into surveyed rigid, encompassing contoured log books memos. study mixed-methods suggestion Elo [[28]Elo Kääriäinen M. Kanste O. al.Qualitative content analysis: trustworthiness.Sage Open. 2014; 4: 1-10Crossref (or case peers subgroups interviewees) included guides, peer presented SHGs beginning guides. hope way represent contextually accurate, possible, gender-inclusive. Yet strive strict replicability reproducibility quantitative generalizable results. empirical material contribution consists methodical memos entries logbooks two Methodical short notes briefly interrupts writes down procedure, instruments, design. engages memos, code, category [[29]Mey Mruck Interviews.in: Mey Handbuch Forschung Psychologie. Verlag Sozialwissenschaften, Wiesbaden2010: 423-435Crossref Scholar,[30]Muckel Entwicklung von Kategorien Methode Theory.in: Reader. Zentrum Historische Köln2007: 211-231Google spirit argue fixing specifying elusive, facilitate exchange Here, refer nature before development. go beyond mere description planning steps, will below. logbook, turn, represents diary self-reporting [[31]Kunz Log- Tagebücher Erhebungsmethode ethnographischen Forschungsdesigns.in: Hitzler Gothe Ethnographische Erkundungen. Methodische Aspekte Explorativ-Interpretativer Forschungsprojekte. Wiesbaden2015: 141-162Crossref logbook writing documents situations same interprets them. During impressions, events, thoughts, emotions recorded. paid special attention so-called retrospectively selectively perceived particularly significant, disruptive, striking, essential [[32]Chilton J.M. Transformation within: epiphany.Creativ. 2015; 21: 15-20Crossref (4) began diagnoses. formed context evaluated thus