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The Evaluation of Parental Acceptance Towards Children with Sex Chromosomal Disorders of Sex Development Using A Mixed-Method

1Faculty of Medicine, Universitas Tanjungpura, Indonesia

2Faculty of Pyschology, Universitas Diponegoro, Indonesia

3Faculty of Medicine, Universitas Diponegoro, Indonesia

Received: 29 Mar 2021; Revised: 18 Apr 2021; Accepted: 21 Apr 2021; Available online: 30 Apr 2021; Published: 30 Apr 2021.
Open Access Copyright (c) 2015 Journal of Biomedicine and Translational Research

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Background: Sex chromosomal Disorder of sex development (DSD) is an atypical abnormality of external genitalia which is mismatched with its sex chromosome traits. The condition of children with DSD affects the dynamics in the family. Parents’ reactions after discovering this health problem vary greatly, such as being in a state of shock, confusion, or self-blame. However, parents’ acceptance is extremely important for better quality of caring, to the healthy social and emotional child development, and to make the best decisions regarding gender assignment.

Objective: To describe the acceptance process of parents that have children with sex chromosomes mosaicism DSD.

Methods: This study used a mixed-method with a sequential explanatory approach, which was preceded by quantitative data collection followed by qualitative. The total respondents consisted of 14 mothers and 12 fathers of 14 sex chromosome mosaicism DSD patients with XX/XY, X/XY, XYY or XXY variants. Quantitative data were collected using the Indonesian version of the Parental Acceptance-Rejection Questionnaire (PARQ), and interviews were conducted to determine the acceptance process.

Results: Most acceptance cases were based on the surgical stage completion in which a higher number of mothers (71.43%) than fathers (50%).

Conclusion: It is uneasy for parents to accept children with sex chromosome mosaicisms DSD, hence the fathers struggle more than mothers in accepting those affected. To the best of our knowledge this is the first study in Indonesia to help parent understand and accept their child condition.

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Parental acceptance towards children with sex chromosomal Disorders of Sex Development: A mixed method study
Subject mosaic sex chromosome; Disorders of Sex Development; parental acceptance
Type Research Instrument
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Parental acceptance towards children with sex chromosomal Disorders of Sex Development: A mixed method study
Subject mosaic sex chromosome; Disorders of Sex Development; parental acceptance
Type Data Analysis
  Download (32KB)    Indexing metadata
 Research Instrument
Parental acceptance towards children with sex chromosomal Disorders of Sex Development: A mixed method study
Subject mosaic sex chromosome; Disorders of Sex Development; parental acceptance
Type Research Instrument
  Download (249KB)    Indexing metadata
Keywords: Mosaic sex chromosome; Disorders of Sex Development; parental acceptance; Indonesia

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  1. Abusaad FE, Yosr Mohamed Elmasri. Effect of Counseling Sessions on Coping Strategies and Anxiety among Parents of Children with Ambigous Genitalia. J Am Sci. 2011;7(5):674-682
  2. Risso R, Einaudi S, Crespi C, Caldarera A, Verna F, Merlini E, et al. Sex attribution, gender identity and quality of life in disorders of sex development due to 45,X/46,XY mosaicism: methods for clinical and psychosocial assessment. AIMS Genet. 2015;2(2):127-147
  3. Demaliaj E, Cerekja A, Piazze J. Sex Chromosome Aneuploidies. In Storchova Z, ed. Aneuploidy in Health and Disease. Croatia; Press INTECH. 2012 :p.121–140
  4. Rosa RFM, Bartel D’Ecclesiis WF, Dibbi RP, Rosa RCM, Trevisan P, Graziadio C, et al. 45,X/46,XY mosaicism:report on 14 patients from a Brazilian hospital. A retrospective study. Sao Paulo Med J. 2014;132(6):328-334
  5. Chivers C, Burns J, Deiros Collado M. Disorders of sex development: Mothers’ experiences of support. Clin Child Psychol Psychiatry. 2017.
  6. Sandberg DE, Gardner M, Callens N, Mazur T. Interdisciplinary care in disorders / differences of sex development ( DSD ): The psychosocial component of the DSD — Translational research network. 2017;(March):1-14
  7. Duguid A, Morrison S, Robertson A, Chalmers J, Youngson G, Ahmed SF. The psychological impact of genital anomalies on the parents of affected children. Acta Paediatr Int J Paediatr. 2007;96(3):348-352
  8. Crissman HP, Warner L, Gardner M, Carr M, Schast A, Quittner AL, et al. Children with disorders of sex development: A qualitative study of early parental experience. Int J Pediatr Endocrinol. 2011;2011(1):10
  9. Sanders C, Carter B, Goodacre L. Searching for harmony: parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood. J Adv Nurs. 2011;67(10):2220-2230
  10. Wolfe-Christensen C, Fedele DA, Kirk K, Mullins LL, Lakshmanan Y, Wisniewski AB. Caregivers of children with a disorder of sex development: Associations between parenting capacities and psychological distress. J Pediatr Urol. 2014;10(3):538-543
  11. Sanders C, Carter B, Goodacre L. Parents need to protect : influences , risks and tensions for parents of prepubertal children born with ambiguous genitalia. J Clin Nurs. 2012:1-9
  12. Zair H, Ullah O, Khan WA, Khan F, Ali I. Sexual Ambiguity — A Social Predicament: Case Report. Dr Sulaiman Al Habib Med J. 2020;I(3-4):2-4
  13. Creswell JW. Research Design Qualitative, Quantitative, and Mixed Methods Approaches. Second Edition; 2003
  14. Listyasari NA, Santosa A, Juniarto AZ, Faradz SM. Multidisciplinary Management of Disorders of Sex Development in Indonesia, A Prototype in Developing Country. Journal of Biomedicine and Translational Research [Online]. 2017 Jun;3(1):17-22.
  15. Valentia S, Sani R, Anggreany Y. Hubungan antara Resiliensi dan Penerimaan Orangtua pada Ibu dari Anak yang Terdiagnosis Autism Spectrum Disorder (ASD). J Psikol Ulayat. 2017;4(1):43-58
  16. Wisniewski AB. Psychosocial implications of disorders of sex development treatment for parents. Curr Opin Urol. 2017;27:11-13
  17. Putnick DL, Lansford JE, Deater-deckard K. Agreement in Mother and Father Acceptance-Rejection, Warmth, and Hostility/Rejection/Neglected of Children across Nine Countries. Cross Cult Res. 2013;46(3):1-24
  18. Creighton S, Chernausek SD, Romao R, Ransley P, Pippi J. Timing and nature of reconstructive surgery for disorders of sex development- Introduction. J Pediatr Urol. 2012:1-9.
  19. Duberstein PR, Chen M, Chapman BP, Hoerger M, Saeed F, Guancial E, et al. Fatalism and educational disparities in beliefs about the curability of advanced cancer. Patient Educ Couns. 2018;101(1):113-118.
  20. Ruiu G. Is fatalism a cultural belief? An empirical analysis on the origin of fatalistic tendencies. Munich Pers RepEc Arch. 2012;(14)
  21. Kohva E, Miettinen PJ. Disorders of sex development : timing of diagnosis and management in a single large tertiary center. Endocr Connect. 2018;7(1):595-603
  22. Mouriquand PDE, Gorduza DB, Gay C, Meyer-Bahlburg HF, Baker L, Baskin LS, et al. Surgery in Disorders od Sex Development with gender issues : If (why), when and how? J Pediatr Urol. 2016.
  23. Hemesath TP, de Paula LCP, Carvalho CG, Leite JCL, Guaragna-Filho G, Costa EC. Controversies on timing of sex assignment and surgery in individuals with disorders of sex development: A perspective. Front Pediatr. 2019;6(JAN):1-6
  24. Ediati A, Juniarto AZ, Birnie E, Okkerse J, Wisniewski A, Drop S, et al. Social stigmatisation in late identified patients with disorders of sex development in Indonesia. BMJ Paediatr Open. 2017;1
  25. Meyer-bahlburg HFL, Baratz K, Berenbaum SA, Cohen-Kettenis PT, Hines M, Schober JM. Gender Assignment, Reassignment and Outcome in Disorders of Sex Development : Update of the 2005 Consensus Conference. Horm Res Paediatr. 2016;85(2):112-118
  26. Deeb A, Khamis M, Sayed SA, Magdy Omar O, Odeh R, Ladjouze A, et al. Sex assignment practice in disorders of sexual differentiation: Survey results from paediatric endocrinologists in the Arab region. J Pediatr Endocrinol Metab. 2019;32(1):75-82
  27. Ediati A, Maharani N, Utari A. Sociocultural Aspects of Disorders of Sex Development. Birth Defect Res. 2016;108:380-383
  28. Kuhnle U, Krahl W. The Impact of Culture on Sex Assignment and Gender Development in Intersex Patients. Perspect Biol Med. 2002;45(1):85-103
  29. Ellens REH, Bakula DM, Mullins AJ, Scott Reyes KJ, Austin P, Baskin L, et al. Psychological Adjustment of Parents of Children Born with Atypical Genitalia 1 Year after Genitoplasty. J Urol. 2017;198(4):914-920.

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