Idenfying Controversies: Diverse Sex Development (dsd ......An exploratory study of the social...
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Iden%fying Controversies: Diverse Sex Development (dsd) within the HOOU (Hamburg Open Online University) u h"p://intersex-kontrovers.blogs.uni-hamburg.de University Medical Center Hamburg-Eppendorf Ins<tute for Sex Research and Forensic Psychiatry E-Mail: [email protected] Ute Lampalzer & Ka<nka Schweizer Introduc%on The birth of a child with an intersex condi<on or diverse sex development (dsd) s<ll goes along with a variety of challenges and uncertain<es, e.g. concerning the child’s gender development. Well- established knowledge seems to be rare. Accordingly, studies show that there is a great need for • beSer educa<ng medical staff and psychological experts on dsd (Schweizer et al., 2016), • suppor<ng parents in their decision-making processes and providing them with understandable informa<on (Boyse et al., 2014; Crissman et al., 2011; Freda et al., 2014; Michala et al., 2014; Streuli et al., 2013), • showing and sharing the variance of lived experien- ces of persons concerned (Van Lisdonk, 2014). So far, there is no German online pla_orm that deals with these issues from different perspec<ves, and also directly addresses open ques<ons. Conclusions The findings indicate that the main controversial issues and uncertain<es revolve around health issues and the necessity of medical treatments. Moreover, how to adequately consider the will of minors and how to deal with intersex in the family seems to be afflicted with insecuri<es. However, quan<ta<ve research leaves open the details that lie in the core of these issues, e.g. ethical considera<ons, social norms or lack of longterm studies, as well as which specific knowledge gaps are mainly relevant. Qualita<ve research is needed to answer these ques<ons. Based on the results of the pilot study structured interviews will be conducted. Acknowledgements We are grateful to all par<cipants of this study and coopera<on partners and supporters of the project. What are the Main Controversies? – A Pilot Study Par<cipants and Method For the accompanying research of the blog development a self-constructed ques<onnaire was distributed among persons concerned, parents of children with dsd/intersex condi<ons and experts in the field (see Table 1). Par<cipants were asked which topics and open ques<ons regarding intersex they considered most important and controversial. Quan<ta<ve data were analyzed via descrip<ve sta<s<cs. Results The findings indicate the following topics being conceived as highly controversial: • conflicts between human rights and medical possibili<es, • clinical diagnos<cs and treatment ager birth and in puberty, • gender aSribu<ons in the legal and social contexts, and • finding an appropriate, respec_ul language (see Figure 2 and 3). References Boyse, K. L., Gardner, M., Marvicsin, D. J., & Sandberg, D. E. (2014). “It was an overwhelming thing”: Parents' needs ager infant diagnosis with congenital adrenal hyperplasia. Journal of Pediatric Nursing, 29, 436-441. Crissman, H. P., Warner, L., Gardner, M., Carr, M., Schast, A., QuiSner, A. L., Kogan, B., & Sandberg, D. E. (2011). Children with disorders of sex development: A qualita<ve study of early parental experience. InternaConal Journal of Pediatric Endocrinology, 2011 (10), 1-11. Freda, M. F., Dice, F., Auricchio, M., Salerno, M., & Valerio, P. (2014). Suspended Sorrow: The crisis in understanding the diagnosis for the mothers of children with a disorder of sex development. InternaConal Journal of Sexual Health, 27, 186-198. Michala, L., Liao, L. M., Wood, D., Conway, G. S., & Creighton, S. M. (2014). Prac<ce changes in childhood surgery for ambiguous genitalia? Journal of Pediatric Urology, 10, 934-939. Streuli, J. C., Vayena, E., Cavicchia-Balmer, Y., & Huber, J. (2013). Shaping parents: Impact of contras<ng professional counseling on parents’ decision making for children with disorders of sex development. Journal of Sexual Medicine, 10, 1953-1960. Schweizer, K., Lampalzer, U., Handford, C., Briken, P. (2016). Kurzzeitbefragung zu Strukturen und Angeboten zur Beratung und Unterstützung bei VariaConen der körperlichen Geschlechtsmerkmale. Begleitmaterial zur Interministeriellen Arbeitsgruppe Inter- & Transsexualität. Berlin: Bundesministerium für Familie, Senioren, Frauen und Jugend. Van Lisdonk, J. (2014). Living with intersex/DSD. An exploratory study of the social situaCon of persons with intersex/DSD. The Hague: Netherlands Ins<tute for Social Research. Figure 2. The seven most controversial issues Table 1. Par<cipants of the study n % Age range Mdn (years) Adults with dsd/intersex condi<ons 6 22.2 42-68 45.5 Parents of children with dsd/intersex condi<ons 5 18.5 38-50 48 Experts in the field (e.g. psychologists, medical doctors) 16 59.3 31-80 47.5 Total 27 100 31-80 47 Figure 1. One of the authors conduc<ng a video interview with Konstanze PleS, Professor of Law, on the human rights situa<on in the studio of sculptor Fabian Vogler, Bargum/Germany Aims of the Blog „intersex-kontrovers“ Within the Hamburg Open Online University a blog is conceptualized that targets a broad group of users by 1) involving and addressing medical students, parents, persons concerned and experts in the field (e.g. medical doctors and psychologists), 2) opening new, rather posi<ve than deficit-oriented views on diverse sex development, 3) providing informa<on in an understandable manner while also emphasizing the challenges related to complexity, uncertainty and ambiguity. One of the main aims is to not only outline current knowledge about intersex but also explicitly point out gaps in knowledge and scien<fic controversies on how to deal with intersex condi<ons. The blog is developed through a par<cipatory process and comprises video interviews, illustra<ons, links and short texts from various perspec<ves, such as from psychology, support groups, the arts, medical ethics, law, different medical disciplines (e.g. endocrinology, pediatrics, urology) and sex research. Figure 3. The most urgent topics for counselling Gonadectomies Ensuring informed consent prior to medical measures Dealing with intersex in the family Lack of qualified counselling and advice op<ons Partnerships and sexuality Decision-making regarding treatment measures that are medically necessary Decision-making regarding gender role assignment Informa<on about somato-sexual development Ques<ons regarding health and healthcare Surgery of external genitalia Dealing with intersex in the family and one‘s social surroundings Leaving the legal recording of the sex category open Change of civil status Implementa<on of mul<disciplinarity Decision-making regarding sex reassignment procedures that are not medically necessary Respec<ng the will of the pa<ent in case of minority 70.4% 44.4% 51.9% 55.6% 44.4% 44.4% 37.0% 66.7% 48.1% 48.1% 44.4% 40.7% 29.6% 22.2% 22.2% 14.8%
Transcript of Idenfying Controversies: Diverse Sex Development (dsd ......An exploratory study of the social...
Iden%fyingControversies:DiverseSexDevelopment(dsd)withintheHOOU(HamburgOpenOnlineUniversity)uh"p://intersex-kontrovers.blogs.uni-hamburg.de
UniversityMedicalCenterHamburg-EppendorfIns<tuteforSexResearchandForensicPsychiatryE-Mail:[email protected]
UteLampalzer&Ka<nkaSchweizer
Introduc%onThe birth of a child with an intersex condi<on ordiversesexdevelopment(dsd)s<llgoesalongwithavariety of challenges and uncertain<es, e.g.concerning the child’s gender development. Well-establishedknowledgeseemstoberare.Accordingly,studiesshowthatthereisagreatneedfor• beSer educa<ng medical staff and psychological
expertsondsd(Schweizeretal.,2016),• suppor<ng parents in their decision-making
processesandprovidingthemwithunderstandableinforma<on (Boyse et al., 2014; Crissman et al.,2011; Freda et al., 2014; Michala et al., 2014;Streulietal.,2013),
• showingandsharingthevarianceoflivedexperien-cesofpersonsconcerned(VanLisdonk,2014).
Sofar,thereisnoGermanonlinepla_ormthatdealswith these issues from different perspec<ves, andalsodirectlyaddressesopenques<ons.
ConclusionsThefindingsindicatethatthemaincontroversialissuesanduncertain<esrevolvearoundhealthissuesandthenecessityofmedicaltreatments.Moreover,howtoadequatelyconsiderthewillofminorsandhowtodealwith intersex in the familyseemstobeafflictedwith insecuri<es.However,quan<ta<veresearch leavesopenthedetailsthat lie inthecoreofthese issues,e.g.ethicalconsidera<ons,socialnorms or lack of longterm studies, as well as which specific knowledge gaps are mainly relevant.Qualita<ve research is needed to answer these ques<ons. Based on the results of the pilot studystructuredinterviewswillbeconducted.AcknowledgementsWearegratefultoallpar<cipantsofthisstudyandcoopera<onpartnersandsupportersoftheproject.
WhataretheMainControversies?–APilotStudyPar<cipantsandMethodFor theaccompanyingresearchof theblogdevelopmentaself-constructedques<onnairewasdistributedamongpersonsconcerned,parentsofchildrenwith dsd/intersex condi<ons and experts in the field (see Table 1).Par<cipantswereaskedwhichtopicsandopenques<onsregardingintersexthey consideredmost important and controversial.Quan<ta<ve datawereanalyzedviadescrip<vesta<s<cs.
ResultsThe findings indicate the following topics being conceived as highlycontroversial:• conflictsbetweenhumanrightsandmedicalpossibili<es,
• clinicaldiagnos<csandtreatmentagerbirthandinpuberty,• genderaSribu<onsinthelegalandsocialcontexts,and• findinganappropriate,respec_ullanguage(seeFigure2and3).
ReferencesBoyse,K.L.,Gardner,M.,Marvicsin,D.J.,&Sandberg,D.E.(2014).“Itwasanoverwhelmingthing”:Parents'needsagerinfantdiagnosiswithcongenitaladrenalhyperplasia.JournalofPediatricNursing,29,436-441.
Crissman,H.P.,Warner,L.,Gardner,M.,Carr,M.,Schast,A.,QuiSner,A.L.,Kogan,B.,&Sandberg,D.E.(2011).Childrenwithdisordersofsexdevelopment:Aqualita<vestudyofearlyparentalexperience.InternaConalJournalofPediatricEndocrinology,2011(10),1-11.
Freda,M.F.,Dice,F.,Auricchio,M.,Salerno,M.,&Valerio,P.(2014).SuspendedSorrow:Thecrisisinunderstandingthediagnosisforthemothersofchildrenwithadisorderofsexdevelopment. InternaConalJournalofSexualHealth,27,186-198.
Michala, L., Liao, L.M.,Wood,D.,Conway,G.S.,&Creighton,S.M. (2014).Prac<cechanges in childhoodsurgery forambiguousgenitalia?JournalofPediatricUrology,10,934-939.
Streuli, J. C., Vayena, E., Cavicchia-Balmer, Y.,&Huber, J. (2013). Shaping parents: Impact of contras<ng professionalcounselingonparents’decisionmakingforchildrenwithdisordersofsexdevelopment.JournalofSexualMedicine,10,1953-1960.
Schweizer,K.,Lampalzer,U.,Handford,C.,Briken,P.(2016).KurzzeitbefragungzuStrukturenundAngebotenzurBeratungundUnterstützungbeiVariaConenderkörperlichenGeschlechtsmerkmale.BegleitmaterialzurInterministeriellenArbeitsgruppeInter-&Transsexualität.Berlin:BundesministeriumfürFamilie,Senioren,FrauenundJugend.
VanLisdonk,J.(2014).Livingwithintersex/DSD.AnexploratorystudyofthesocialsituaConofpersonswithintersex/DSD.TheHague:NetherlandsIns<tuteforSocialResearch.
Figure2.Thesevenmostcontroversialissues
Table1.Par<cipantsofthestudyn % Agerange Mdn(years)
Adultswithdsd/intersexcondi<ons 6 22.2 42-68 45.5Parentsofchildrenwithdsd/intersexcondi<ons
5 18.5 38-50 48
Expertsinthefield(e.g.psychologists,medicaldoctors)
16 59.3 31-80 47.5
Total 27 100 31-80 47
Figure1.Oneoftheauthorsconduc<ngavideointerviewwithKonstanzePleS,ProfessorofLaw,onthehumanrightssitua<oninthestudioofsculptorFabianVogler,Bargum/Germany
AimsoftheBlog„intersex-kontrovers“Within the Hamburg Open Online University a blog isconceptualizedthattargetsabroadgroupofusersby1) involving and addressingmedical students, parents,
persons concerned and experts in the field (e.g.medicaldoctorsandpsychologists),
2) opening new, rather posi<ve than deficit-orientedviewsondiversesexdevelopment,
3) providing informa<on in an understandablemannerwhile also emphasizing the challenges related tocomplexity,uncertaintyandambiguity.
One of the main aims is to not only outline currentknowledge about intersex but also explicitly point outgaps in knowledge and scien<fic controversies on howtodealwithintersexcondi<ons.Theblogisdevelopedthroughapar<cipatoryprocessandcomprisesvideointerviews,illustra<ons,linksandshorttextsfromvariousperspec<ves,suchasfrompsychology,supportgroups,thearts,medicalethics, law,differentmedicaldisciplines (e.g.endocrinology,pediatrics,urology)andsexresearch.
Figure3.Themosturgenttopicsforcounselling
Gonadectomies
Ensuringinformedconsentpriortomedicalmeasures
Dealingwithintersexinthefamily
Lackofqualifiedcounsellingandadviceop<ons
Partnershipsandsexuality
Decision-makingregardingtreatmentmeasuresthataremedicallynecessary
Decision-makingregardinggenderroleassignment
Informa<onaboutsomato-sexualdevelopment
Ques<onsregardinghealthandhealthcare
Surgeryofexternalgenitalia
Dealingwithintersexinthefamilyandone‘ssocialsurroundings
Leavingthelegalrecordingofthesexcategoryopen
Changeofcivilstatus
Implementa<onofmul<disciplinarity
Decision-makingregardingsexreassignmentproceduresthatarenotmedicallynecessary
Respec<ngthewillofthepa<entincaseofminority
70.4%
70.4%
44.4%
51.9%
55.6%
44.4%
44.4%
37.0%
66.7%
48.1%
48.1%
44.4%
40.7%
29.6%
22.2%
22.2%
14.8%
