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Stigma, Intrusiveness, and Distress in Parents of Children with a Disorder/Difference of Sex Development

Katherine A Traino1, Caroline M Roberts1, Rachel S Fisher1

  • 1Center for Pediatric Psychology, Psychology Department, Oklahoma State University, Stillwater, OK.

Journal of Developmental and Behavioral Pediatrics : JDBP
|March 30, 2022
PubMed

Insights

Parent-reported stigma regarding a child's disorder/difference of sex development (DSD) increases illness intrusiveness, leading to parental anxiety and depression. Addressing stigma perceptions is key for improving parent adjustment.

Area of Science:

  • Pediatric Psychology
  • Medical Sociology
  • Endocrinology

Background:

  • Parental psychosocial adjustment is significantly impacted by stigma associated with a child's disorder/difference of sex development (DSD).
  • Illness intrusiveness, the perceived interference of a medical condition into daily life, often mediates the relationship between stigma and adjustment in pediatric populations.

Purpose of the Study:

  • To assess the relationships between parent-focused and child-focused stigma, illness intrusiveness, and parental depressive and anxious symptoms in families with a child diagnosed with DSD.
  • To explore patient characteristics associated with reported stigma.

Main Methods:

  • Caregivers of 63 children (aged up to 4 years) with DSD completed validated measures.
  • Data collected included demographics, parent- and child-focused stigma, illness intrusiveness, and parental depressive and anxious symptoms.

Main Results:

  • Higher levels of both parent-focused and child-focused stigma were significantly associated with increased illness intrusiveness.
  • Increased illness intrusiveness, in turn, correlated with higher parental depressive and anxious symptoms.
  • Parents of children with a DSD family history reported greater child-focused stigma.

Conclusions:

  • Parental experience of DSD-related stigma contributes to greater illness intrusiveness, negatively impacting psychosocial adjustment.
  • Clinical interventions should target parental perceptions of stigma and illness intrusiveness to enhance parental well-being.
Abstract

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