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Related Experiment Video

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Author Spotlight: Validation of SICOLE-R for Assessing Cognitive and Reading Skills in Spanish-Speaking Children and Its Role in Personalized Education
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Parental Uncertainty Scale Factor Structure in Pediatric DSD With Ambiguous Genitalia.

Nathan L Basile1, Taylor M Dattilo1, Alexandra M DeLone1

  • 1Department of Psychology, Center for Pediatric Psychology, Oklahoma State University, USA.

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|February 2, 2023
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Summary

Caregivers of children with disorders/differences of sex development (DSD) and ambiguous genitalia experience illness uncertainty. A 23-item Parental Perception of Uncertainty Scale (PPUS) shows preliminary utility for this population.

Keywords:
DSDEFAPPUSfactor analysisillness uncertainty

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Area of Science:

  • Psychology
  • Pediatrics
  • Endocrinology

Background:

  • Illness uncertainty is a significant challenge for caregivers of children with disorders/differences of sex development (DSD) and ambiguous genitalia.
  • No validated measurement tool currently exists to assess illness uncertainty in this specific population.

Purpose of the Study:

  • To preliminarily identify the factor structure of the Parental Perception of Uncertainty Scale (PPUS) in caregivers of children with DSD and ambiguous genitalia.
  • To examine the convergent validity of the PPUS in this population.

Main Methods:

  • 115 caregivers of children (<2 years old) diagnosed with DSD completed the PPUS and measures of anxious, depressive, and posttraumatic stress symptoms.
  • Exploratory factor analysis was used to determine the factor structure of the PPUS.

Main Results:

  • An exploratory factor analysis supported a 23-item, 1-factor solution for the PPUS (Cronbach's α = 0.92).
  • Convergent validity analyses further supported the use of the 23-item, 1-factor structure over the original PPUS structure.

Conclusions:

  • The 23-item, 1-factor PPUS demonstrates preliminary clinical and research utility for caregivers of children with DSD and ambiguous genitalia.
  • Further refinement through qualitative research and item adaptation is recommended to capture DSD-specific uncertainties.
  • Confirmatory factor analysis with a larger, separate sample is needed to validate the proposed factor structure.