Psychosocial Impact, Healthcare Experiences, and Human Rights of Children and Adolescents with Intersex Variations: A Systematic Review

Abstract

Background: Intersex variations, also described clinically as differences of sex development or variations in sex characteristics, may affect psychosocial well-being, family adaptation, healthcare relationships, and the exercise of children’s rights. This review evaluates psychosocial outcomes, healthcare experiences, shared decision-making, communication, stigma, autonomy, and human-rights considerations among children and adolescents with intersex variations and their families. Methods: Primary peer-reviewed quantitative, qualitative, and mixed-methods studies published from 1 January 2006 through 24 September 2026 were eligible. PubMed/MEDLINE was searched using terms for intersex/DSD, pediatric populations, and patient-centered psychosocial or healthcare outcomes; Europe PMC and OpenAlex were searched as complementary sources. Two reviewers confirmed title-and-abstract screening, eligibility, extraction, and design-specific JBI or MMAT appraisal. Owing to clinical and methodological heterogeneity, findings were synthesized narratively. Results: The searches identified 1,589 records; 709 duplicate, overlapping, or non-journal/export records were removed before screening. Of 880 records screened, 828 were excluded at title/abstract stage. Fifty-two reports were sought from database searches and one additional final peer-reviewed report was identified through version/citation tracking. Nineteen reports were not retrieved and were not counted as exclusions. Thirty-four reports were assessed, included, extracted, and appraised by reviewer consensus. The synthesis identified recurrent parental distress, stigma, information and communication gaps, variable youth participation, and benefits from age-appropriate disclosure, peer support, multidisciplinary care, and shared decision-making. Conclusions: Evidence supports rights-based, developmentally responsive pediatric care that distinguishes clinical urgency from elective intervention, protects bodily integrity, and progressively centers the child’s voice. Psychosocial support, transparent communication, peer support, and shared decision-making should be integrated throughout care. Confidence is limited by heterogeneous designs, incomplete reporting, restricted database coverage, and 19 reports that could not be retrieved.