Parental Uncertainty Scale Factor Structure in Pediatric DSD With Ambiguous Genitalia

Author:

Basile Nathan L1ORCID,Dattilo Taylor M1ORCID,DeLone Alexandra M1,Kraft Jacob D2,Edwards Clayton S1,Buchanan Cindy L3,Cheng Earl Y4,Poppas Dix P5,Wisniewski Amy B1,Mullins Larry L1

Affiliation:

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

2. Department of Psychiatry, University of Michigan , USA

3. Department of Psychiatry, University of Colorado Anschutz Medical Campus , USA

4. Department of Urology, Ann & Robert H. Lurie Children’s Hospital of Chicago , USA

5. Institute for Pediatric Urology, Komansky Children’s Hospital, New York Presbyterian Hospital-Weill Cornell Medicine , USA

Abstract

Abstract Objective Illness uncertainty is a salient experience for caregivers of children with disorders/differences of sex development (DSD) presenting with ambiguous genitalia; however, no validated measure of illness uncertainty exists for this unique population. Thus, the current study aimed to preliminarily identify the factor structure of the Parental Perception of Uncertainty Scale (PPUS) in caregivers of children with DSD presenting with ambiguous genitalia and examine the convergent validity of the PPUS. Methods Participants included 115 caregivers (Mage = 32.12 years, SD = 6.54; 57% mothers) of children (<2-year-olds) diagnosed with DSD participating in a larger, longitudinal study. Caregivers completed the PPUS as well as self-report measures of anxious, depressive, and posttraumatic stress symptoms. An exploratory factor analysis was conducted. Results Exploratory factor analysis results indicated that a 23-item 1-factor solution was the most parsimonious and theoretically sound factor structure (α = 0.92). Convergent validity analyses demonstrated further support for the use of the 23-item 1-factor solution over the original PPUS factor structure. Conclusion These results demonstrate the preliminary clinical and research utility of the PPUS with caregivers of children with DSD presenting with ambiguous genitalia. The PPUS may benefit from further refinement through qualitative research and item adaptation to capture uncertainties unique to DSD presenting with ambiguous genitalia. In addition, future research should replicate the proposed factor structure using confirmatory factor analysis with a separate, larger sample of caregivers of children with DSD to confirm the factor structure.

Funder

National Institutes of Health

NICHD

Vaughn Vennerberg II Endowment

Publisher

Oxford University Press (OUP)

Subject

Developmental and Educational Psychology,Pediatrics, Perinatology and Child Health

Reference36 articles.

1. Evaluating the reliability and validity of the Arabic version of the Parents Perceptions of Uncertainty Scale (A-PPUS);Al-Yateem;Journal of Pediatric Nursing,2017

2. Relationship between caregiver uncertainty, problem-solving, and psychological adjustment in pediatric cancer;Basile;Journal of Pediatric Psychology,2021

3. Disease severity and depressive symptoms in adolescents with inflammatory bowel disease: The mediating role of parent and youth illness uncertainty;Baudino;Journal of Pediatric Psychology,2019

4. Practical considerations for using exploratory factor analysis in educational research;Beavers;Practical Assessment, Research, and Evaluation,2013

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