Experiences and psychological issues affecting parents of children born with atypical genitalia in India
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Tanvi Bindal
,
Vandana Jain
Abstract
Objectives
Parents of children with differences of sex development (DSD) are known to suffer from psychological distress at the time of diagnosis and thereafter. We analyzed the prevalence of anxiety and depression in Indian parents of children with DSD and its associated risk factors, as well as their experiences, perceptions and expectations from the healthcare system.
Methods
This cross-sectional study included parents of children aged ≤6 years with atypical genitalia. Data was collected through face-to-face semi-structured interview using specially designed questionnaire. Depression and anxiety have been assessed using PHQ9 (Patient Health Questionnaire) and GAD-7 (Generalized Anxiety Disorder Scale), respectively.
Results
The current mean age of the 43 children (46,XY=26, 46,XX=16 and chromosomal DSD=1) was 36.5 ± 21.4 months with a median age of diagnosis of 5 months (range- 0–60 months). 68 parents (35 mothers and 33 fathers) were interviewed. The score was above the cut-off for clinically significant depression in 27.2 and 25.7 % of the fathers and mothers, respectively; and for clinically significant anxiety in 15.1 and 28.6 % of the fathers and mothers, respectively. The most significant factor associated with psychological distress was rearing a boy with lower EMS in fathers and lower literacy levels (with higher perception of stigma) in mothers. Absence of family support was associated with high levels of distress in both parents.
Conclusions
There is a high level of depression and anxiety amongst Indian parents of children born with atypical genitalia and requirement for psychological support and counseling.
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Research ethics: The study was approved by the local Institutional Review Board.
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Informed consent: Informed consent was obtained from all individuals included in this study.
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Author contributions: All authors have accepted responsibility for the entire content of this manuscript and approved its submission.
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Use of Large Language Models, AI and Machine Learning Tools: None declared.
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Conflict of interests: Authors state no conflict of interest.
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Research funding: None declared.
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Data availability: Not applicable.
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© 2024 Walter de Gruyter GmbH, Berlin/Boston
Articles in the same Issue
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- Original Articles
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- Long-term effectiveness and safety of long-acting growth hormone preparation in children with growth hormone deficiency
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- Through the eyes of the parents: a transdiagnostic psychiatric perspective for children with differences of sexual development
- Experiences and psychological issues affecting parents of children born with atypical genitalia in India
- Case Reports
- A rare case of central precocious puberty in a male infant with adrenal hypoplasia congenita
- Gly183Ser homozygous mutation of the steroid 5-a reductase type 2 (SRD5A2) gene in a Brazilian patient: case report
- Novel PIK3R1 gene mutation associated with SHORT syndrome: a case report of a 15-year-old female
- Mineralocorticoid receptor antagonist monotherapy in pediatric non-classical 11β-hydroxylase deficiency
- A rare case of skeletal dysplasia: biallelic variant in ACAN gene
- Letter to the Editor
- Another look at the necessity of polysomnography for infants with Prader-Willi syndrome prior to initiation of growth hormone therapy
- Annual Reviewer Acknowledgment
- Reviewer Acknowledgment
Articles in the same Issue
- Frontmatter
- Review
- Effect and safety of aromatase inhibitors for the treatment of short stature in male children and adolescents: a meta-analysis of randomized controlled trials
- Original Articles
- Do hybrid closed loop insulin pump systems improve glycemic control and reduce hospitalizations in poorly controlled type 1 diabetes?
- Long-term effectiveness and safety of long-acting growth hormone preparation in children with growth hormone deficiency
- Gonadal changes in children and adolescents with congenital adrenal hyperplasia
- Hsa_circ_0002473 inhibits GH3 cell proliferation and GH secretion as a competitive endogenous RNA for has-miR-4645-3p
- Through the eyes of the parents: a transdiagnostic psychiatric perspective for children with differences of sexual development
- Experiences and psychological issues affecting parents of children born with atypical genitalia in India
- Case Reports
- A rare case of central precocious puberty in a male infant with adrenal hypoplasia congenita
- Gly183Ser homozygous mutation of the steroid 5-a reductase type 2 (SRD5A2) gene in a Brazilian patient: case report
- Novel PIK3R1 gene mutation associated with SHORT syndrome: a case report of a 15-year-old female
- Mineralocorticoid receptor antagonist monotherapy in pediatric non-classical 11β-hydroxylase deficiency
- A rare case of skeletal dysplasia: biallelic variant in ACAN gene
- Letter to the Editor
- Another look at the necessity of polysomnography for infants with Prader-Willi syndrome prior to initiation of growth hormone therapy
- Annual Reviewer Acknowledgment
- Reviewer Acknowledgment
