Peer-reviewed article
Psychological and psychosocial implications of differences of sex development and differentiation in families of children with this condition, with relevance to surgical care: A cross-sectional study.
Mahmoud Tarek, Radwa Shamma, Nehal Mostafa, Abeer Aboalazayem, Mahmoud Marei Marei ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examined how having a child with differences of sex development (DSD) affects parents' psychological health and quality of life. The researchers surveyed 44 parents of children under 13 with DSD and found that nearly 30% experienced depression and over 60% had anxiety. Parents whose children had genital surgery reported lower quality of life across physical, emotional, and social dimensions. The study concludes that families need professional counselling and ongoing psychological support throughout their child's medical care.
Key points
- 63.6% of children with DSD presented during the neonatal period, and 63.6% had congenital adrenal hyperplasia
- 29.6% of parents suffered from depression and 61.4% had anxiety related to their child's condition
- Parents of children who underwent genital surgery showed significant decreases in quality of life across physical, affective, social, and ego perspectives
- Genital surgery and family income were significantly associated with both decreased quality of life and anxiety scores
- 40.9% of parents identified psychological stability as the most important consequence and determinant of surgical intervention
Limitations
The study does not include comparison groups or longitudinal follow-up, so causality cannot be established and long-term trajectories of parental mental health are unknown. The sample size of 44 parents is relatively small and the countries where the study was conducted are not specified, limiting generalisability.
Abstract
INTRODUCTION: Disorders of sex development (DSD) include congenital disorders with incongruence among phenotype, genotype, and gonadal sex. The psychological aspects and response of the parents of a child with DSD towards this issue are crucial, as they are considered the fundamental care providers for their child. Hence, their perceptions affect the overall clinical and social care. We hypothesise that parents having children with DSD face marked challenges, not only social, but also psychological, such as anxiety and depression. Also, their quality of life may be negatively affected. This study evaluates the psychological impact of having a child with DSD on his/her parents to be able to provide proper counselling and support for them. METHODS: A cross-sectional analytical study was conducted, including 44 parents whose children were under the age of 13 years and were diagnosed with DSD, whether they were operated upon or not. Their responses on sociodemographics, depression, anxiety, quality-of-life (QoL), views on marriage, and religious aspects were collected and analysed, alongside the effect of their child's condition on them. RESULTS/FINDINGS: Twenty-eight (63.6%) of children presented to medical care during the neonatal period. Similarly, 63.6% had congenital adrenal hyperplasia (CAH), either male or female. Genotypically, 43.2% had a 46,XX genotype, and 56.8% had a non-46,XX genotype. Thirty-four (77.3%) underwent genital surgery. All patients with ambiguous genitalia underwent surgery. The most affected QoL aspects were the economic, affective, and physical aspects: About thirty percent (29.6%) of the parents suffered from depression, and 61.4% had anxiety. Parents of children who underwent surgery also had a significant decrease in quality of life from the physical, affective, social, and ego perspectives (p-values <0.05). Genital surgery and family income were significantly associated with both decreased QoL and anxiety scores (p-values <0.05). Eighteen (40.9%) reported that psychological stability is the most important consequence and determinant of surgery. DISCUSSION: Differences in sex development (DSD) impact familial psychological health. Parents of children with DSD suffer high levels of anxiety and depression related to their condition and score low on various QoL aspects. Social pressures, legalities of registration, financial inheritance, and religious perspectives may affect attitudes toward surgery. CONCLUSION: Families of children with DSD have low QoL scores regarding the economic, psychological, and physical domains, with highly significant levels of emotional burden. Psychological stability, fertility, and sexual health prospects are their main concerns towards and around surgery. Professional counselling and education are needed throughout care, with the reassurance of consistent future availability. LEVEL OF EVIDENCE: III. TYPE OF STUDY: Cross-sectional.