ArticleJournal of pediatric psychology2020
Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD.
Article in Journal of pediatric psychology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 27 citations in OpenAlex.
- Clinical practice guidelines for the management of differences of sex development in Japan.Endocrine journal · 2026Guideline
- German law on protection of children with DSD: first data on care after enactment.Endocrine connections · 2026Article
- Mixed Gonadal Dysgenesis: A Comprehensive Review of Clinical Spectrum, Diagnostic Strategies, and Management Approaches.Clinical endocrinology · 2026Review
- Adaptation of Parental Perception of Uncertainty Scale (PPUS): A psychometric study in a genetic research center in Indonesia.Belitung nursing journal · 2026Article
- Clinical practice guidelines for the management of differences of sex development in Japan.Clinical pediatric endocrinology : case reports and clinical investigations : official journal of the Japanese Society for Pediatric Endocrinology · 2026Review
- Validation of a parent-reported outcome measure for young boys with a condition affecting sex development (PRO-CSD).Archives of disease in childhood · 2025Article
- Family functioning in adolescents and young adults with differences of sex development.Journal of pediatric psychology · 2025Article
- Development and validation of a short version of the quality of life-DSD questionnaire for parents of young children with conditions affecting sex development.Endocrine connections · 2024Article
- Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.Journal of pediatric psychology · 2024Article
- Exploratory factor analysis of the Illness Intrusiveness Rating Scale for parents of children with atypical genital appearance due to differences of sex development (DSD).Journal of pediatric psychology · 2024Article
- Differences of sex development and surgical decisions: focus group interviews with health care professionals in Norway.Health psychology and behavioral medicine · 2024Article
- The impact of childhood glaucoma on psychosocial functioning and quality of life: a review of the literature.Eye (London, England) · 2023Review
- Adverse Birth Experiences and Parent Adjustment Associated With Atypical Genital Appearance Due to Differences of Sex Development.Journal of pediatric psychology · 2023Article
- Parental Uncertainty Scale Factor Structure in Pediatric DSD With Ambiguous Genitalia.Journal of pediatric psychology · 2023Article
- Decisional regret about surgical and non-surgical issues after genitoplasty among caregivers of female infants with CAH.Journal of pediatric urology · 2022Article
- Standards of Care for the Health of Transgender and Gender Diverse People, Version 8.International journal of transgender health · 2022Article
- Factor Analysis of the Stigma Scale-Parent Version in Pediatric Disorders/Differences of Sex Development.Stigma and health · 2021Article
- Distress Trajectories for Parents of Children With DSD: A Growth Mixture Model.Journal of pediatric psychology · 2021Article
Corrections and comments
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Authors and funding
26 authors at 10 institutions in 1 country.
Funding
Abstract
objectiveA subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry.
methodsOne hundred and thirteen caregivers (Mage = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N = 70; Mage = 9.81 months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child.
resultsCaregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05).
conclusionsCaregivers' perceptions of uncertainty about their child's DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target.
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