Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD

Abstract

Objective A 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. Methods One 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. Results Caregiver 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). Conclusions Caregivers’ 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.

Standards of Care for the Health of Transgender and Gender Diverse People, Version 8

“…Providers must set an expectation as soon as possible for ongoing, open communication between all parties, especially since parents may experience distress due to the uncertainty associated with DSD and may seek quick fixes (Crissman et al., 2011 ; Roberts et al., 2020 ). Models of shared decision-making as well as related decisional tools have been developed to support ongoing communication between HCPs and families/individuals (Karkazis et al., 2010 ; Sandberg et al., 2019 ; Siminoff & Sandberg, 2015 ; Weidler et al., 2019 ).…”

“…For almost all parents, the birth of a child with intersexuality is entirely unexpected and comes as a shock. Their inability to respond immediately to the ubiquitous question, “Is your baby a boy or a girl?”, their lack of knowledge about the child’s condition, the uncertainty regarding the child’s future, and the pervasive intersex stigma are likely to cause distress, sometimes to the level of PTSD and may lead to prolonged anxiety and depression (Pasterski et al., 2014 ; Roberts et al., 2020 ; Wisniewski & Sandberg, 2015 ). This situation may affect parental care and long-term outcome of their child with intersexuality (Schweizer et al., 2017).…”

Factor analysis of the Stigma Scale—Parent version in pediatric disorders/differences of sex development.

“…Data included in the present study are from the time point each caregiver first completed the stigma measures, which varied from baseline to the fourth annual visit. Portions of data from the larger, multisite study have been reported in previous publications with different aims and hypotheses (Perez et al, 2019, 2021; Roberts, 2020; Sharkey et al, 2018; Suorsa et al, 2015).…”

The psychology of people with variable sex characteristics/intersex

“…Far fewer parents showed chronic or elevating distress in that year, whilst mothers reported more distress than fathers overall [17]. The same research collaboration found that levels of illness uncertainty predicted parents' depression and anxiety in the year after infant surgery [18]. Medical interventions may cause distress because parents lack sufficient time to process difficult emotions, and VSC that pose no health risk can be framed as disordered in healthcare settings [19].…”