midwives’ knowledge & attitudes towards disorders of sex...
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Midwives’ knowledge & attitudes towards disorders of sex development (DSD)
and its psychological impact: A Preliminary study
Annastasia Ediati, PhD Agustini Utari, MD, MSc Psychologist Pediatric endocrinologistFaculty of Psychology Faculty of Medicine
Diponegoro University, Semarang - Indonesia
Presented in the 31st International Congress of Psychology, Yokohama, Japan – July 27, 2016
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What is a disorder of sex development (DSD)?
Sex chromosomes
Gonads
Internal reproductive
structuresGenitals
Brain
DSD is a congenital anomalies that involve atypical development of sex chromosomes and gonads, consequently atypical development of internal reproductive structures & genitals, which may also affect brain development
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• Genital ambiguity is the major reason for seeking medical care for individuals with 46,XX DSD or 46,XY DSD
• Incidence of ambiguous genitalia in newborn: approx. 1 in 4500 birth
• Gender assignment should be done based on the karyotype, hormonal evaluation, internal & external reproductive structures, psychological evaluation it takes long time
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Patients referral to SemarangIndonesia
300 native ethnicities
743 local languages
± 17,000 islands
237.5 million people
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Indonesia setting
Clinical evaluation
Physical examination
Genetic and hormonal analyses
DSD center Semarang
Female
Born with ambiguous genitalia or late onset ambiguity
Gender assignment by midwife /
parents
Male
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Management of DSD in Semarang, IndonesiaThe Sexual Adjustment TeamDr Kariadi Hospital - Faculty Medicine Diponegoro University
Physical examination & Ultrasound
Hormonal analysisChromosomal
analysisPsychological
evaluation
Team meeting:
- Case discussion: diagnostic findings
- Diagnose establishment
- Discuss treatment program
- Determine treatment plan
Treatment and monitoring
On patient’s initial visit
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Clinical study (2004-2010)Achmad Zulfa Juniarto et al.
Patients with DSDN = 286
Psychological study (2007-2011)Annastasia Ediati et al.
N = 118
Inclusion criteria:• Diagnosed with DSD
• Age 6 yrs & older
• No intellectual disabilities
Hormones
Molecular genetics
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Results from previous studies
WESTERN COUNTRIES
• DSD is identified early at birth (newborn screening)
• Early medical treatment will be offered
• Gender change is rare
• Multidisciplinary team provide care that accessible & affordable
INDONESIA
• The majority of affected individuals were referred late
• Many affected individuals living without medical treatment
• Gender-dysphoria was prominent; a high percentage of self-initiated MtF gender change in 46,XY adults (44%); FtM childrenwith 46,XX Congenital Adrenal Hyperplasia
• Social withdrawn and depression
• Social stigmatization influenced self-initiated gender change
• Multidisciplinary team only available in Semarang and Jakarta
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Birth attendant plays important role in EARLY referral of babies with 46,XX congenital adrenal hyperplasia (CAH) (p=0.02)
A Ediati et al. (2016). Healthcare-seeking in late-identified patients with Congenital Adrenal Hyperplasia in Central Java (Unpublished data)
N = 72Early-identified (n) = 27Late-identified (n) = 45
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Research questions
• Do midwives have sufficient knowledge about DSD in newborn (genital ambiguity)?
• What is the attitude of midwives towards a newborn with DSD that may affect their decision in gender assignment and referral to medical center?
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Methods
• Participants: 211 midwives in Semarang city, Central Java
• Instruments: the Midwives’ Knowledge and Attitude towards DSD Questionnaire
1. Knowledge about DSD• The terms of DSD known by midwives
• The cause of DSD
• The psychological impacts of DSD
2. Attitude towards DSD (using 5 pictures of newborns with and without a genital ambiguity)• Midwives’ decision on gender assignment: female, male, or undecided
• If undecided: delay or refer (when and to whom)
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Findings: Knowledge about DSD and its psychological impacts
• The terms of “ambiguous genitalia” is more popular than intersex or DSD
• 71% midwives believed that DSD was caused by genetic-related factors
• 82% of midwives: DSD impact psychologically BUT only 39% midwives thought that psychological intervention might help
• 61% midwives: it can be cured by surgery (38%) or pills (7.5%)
• 39% midwives: no emergency condition on newborn with a genital ambiguity
• Information seeking: medical doctors (87.7%), conferences (33.6%), internet (25%), senior colleagues (10%),
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50
35
10
3
2
0 10 20 30 40 50 60
low self-esteem and self confident
gender identity confusion
social relations
parenting
religious practices
Percentage of psychological impacts of DSD:Perceived by Midwives
Psychological impacts of DSD
Only 39% midwives thought that psychological intervention could help
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Findings: Midwives’ attitudes towards a newborn with DSD
• Mistakes in identification of newborn with an ambiguous genitalia mistakes in gender assignment (44-60% midwives)
• Referral for early medical intervention:• Delay referral to medical doctors (3 months – unknown)
• Refer to hospital (unspecified doctor)
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Conclusion
• Midwives play important role in making a proper decision about gender assignment and referral for medication of newborn with a genital ambiguity
• Education about early identification of newborn with DSD, the psychological impact of having a DSD conditions, and the psychological intervention available for the affected individuals need to be promoted among midwives
• The involvement of a psychologist in raising awareness on the psychological impact of late-identification of DSD is essential
• Valid information about DSD for educational purposes should be made available for health practitioners in local language.
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Acknowledgements
• The study was funded by the Ministry of Research, Technology, and Higher Education, Republic of Indonesia (Kemristekdikti)
• The presentation in the ICP2016 Yokohama was funded by the Diponegoro University & Faculty of Psychology, Diponegoro University