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Parental Emotional Experience and Support Needs Following Diagnosis of Sexual Differentiation Disorder in Newborns

Kaoutar Danaoui1, Fatima Ezzahra Tahiri, Mouna Zouine

  • 1Neonatal Intensive Care Unit, Mohammed VI University Hospital of Tangier, Faculty of Medicine and Pharmacy, Abdelmalek Essaâdi University, Tangier, Morocco.

Annals of African Medicine
|April 7, 2026
PubMed

Insights

Parents of newborns with disorders of sex development (DSDs) experience intense anxiety and distress, especially in neonatal intensive care units (NICUs). Tailored communication and early support are crucial for improving family outcomes.

Area of Science:

  • Neonatal care
  • Pediatric endocrinology
  • Genetics

Background:

  • Disorders of sex development (DSDs) present diagnostic challenges for parents, causing significant emotional distress.
  • Neonatal intensive care units (NICUs) often manage DSD cases, but parental experiences and support needs are under-researched in contexts like Morocco.
  • Existing studies on parental responses to congenital anomalies rarely focus specifically on DSDs.

Purpose of the Study:

  • To synthesize evidence on the emotional impact of DSD diagnosis on parents of newborns.
  • To identify the support needs of parents facing DSD diagnoses in high-risk neonatal settings.

Main Methods:

  • Descriptive study utilizing a questionnaire administered to parents of 18 newborns with DSDs.
  • Qualitative and descriptive analysis of parental responses.

Main Results:

  • High levels of parental anxiety (83.3%) and difficulty understanding medical information (66.7%) were reported.
  • All parents (100%) expressed fear for their child's health and future; some (27.8%) experienced guilt.
  • Psychological distress was heightened in NICU settings and with infant mortality.

Conclusions:

  • Newborn DSD diagnosis causes significant parental emotional vulnerability, exacerbated by medical severity and NICU care.
  • Empathetic interventions and clear communication strategies are essential for mitigating distress.
  • Health authorities and multidisciplinary teams must prioritize family support in NICUs.
Abstract

Keywords:
Disorders of sex developmentTroubles du développement sexuelde soins intensifs néonatalsdétresse psychologiquefamily-centered careneonatal intensive careparental emotional responsepsychological distressréactions émotionnelles des parentssoins centrés sur la familleunité

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