DOI: https://doi.org/10.14710/jbtr.v7i1.10710

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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Abstract

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
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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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Section: Original Research Articles
Language : EN
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  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
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  27. Ediati A, Maharani N, Utari A. Sociocultural Aspects of Disorders of Sex Development. Birth Defect Res. 2016;108:380-383
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