Department of Psychology, Center for Pediatric Psychology, Oklahoma State University, USA.
Department of Psychiatry, University of Michigan, USA.
J Pediatr Psychol. 2023 Apr 20;48(4):386-395. doi: 10.1093/jpepsy/jsad001.
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.
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.
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.
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.
对于患有性别发育障碍/差异（DSD）且生殖器模糊的儿童的照顾者来说，疾病不确定性是一种突出的体验；然而，针对这一独特人群，目前还没有经过验证的疾病不确定性测量方法。因此，本研究旨在初步确定父母对不确定性量表（PPUS）在患有生殖器模糊的 DSD 儿童的照顾者中的因素结构，并检验 PPUS 的聚合效度。
参与者包括 115 名患有 DSD 的儿童（年龄 <2 岁）的照顾者（Mage = 32.12 岁，SD = 6.54；57%为母亲），他们参加了一项更大的纵向研究。照顾者完成了 PPUS 以及焦虑、抑郁和创伤后应激症状的自我报告测量。进行了探索性因素分析。
探索性因素分析结果表明，23 项 1 因素解决方案是最简约和理论上合理的因素结构（α=0.92）。聚合效度分析进一步支持使用 23 项 1 因素解决方案而不是原始的 PPUS 因素结构。
这些结果表明，PPUS 对患有生殖器模糊的 DSD 儿童的照顾者具有初步的临床和研究效用。PPUS 可能通过定性研究和项目适应来进一步完善，以捕捉到具有生殖器模糊的 DSD 所特有的不确定性。此外，未来的研究应使用具有更大样本的独立确认性因素分析来复制建议的因素结构，以确认该因素结构。
