Menstrual Health of Adolescents with Down Syndrome in the UK: a Mixed-Methods Study of Lived Experiences and Caregiver Perspectives

Adolescents with Down syndrome face unique menstrual health challenges, yet their experiences remain under-researched. This study aimed to describe the menstruation experiences of adolescents with Down syndrome and their caregivers, in the UK, to inform the development of tailored, evidence-based interventions for this population. Guided by an advisory group of caregivers and young people with Down syndrome, this mixed-methods study (September 2024 -July 2025) involved a national online survey of primary caregivers (N=143) and participatory interviews with adolescents (n=6), mothers (n=11) and healthcare and education professionals (n=8). Quantitative data were analysed descriptively according to support needs (high vs low), and qualitative data were analysed thematically. The median age of menarche (12 years) aligned with the general population. While adolescents generally coped better with menarche than caregivers anticipated, 91% of 120 caregivers of adolescents who had reached menarche had ongoing menstruation concerns. While products like period underwear ("magic pants") improved independence and simplified care, key remaining concerns include: heavy periods (48%); personal care (45%); menstrual pain (45%); and the communication of pain (26%). The impact on adolescent wellbeing was greater for those with greater support needs. Additionally, 33% of caregivers felt "overwhelmed" by menstrual-related care. Decision-making for hormonal intervention was a source of heavy responsibility for caregivers. There is substantial demand for accessible educational and practical resources to support menstruation. Menstrual health is a highly individualised experience for adolescents with Down syndrome. Significant unmet needs persist, particularly for those with higher support needs. Successful outcomes require supporting caregivers through provision of accurate information that dispels pre-menarche anxiety alongside accessible and appropriate guidance to foster young peoples independence, choice and autonomy. Future interventions must be co-developed with the Down syndrome community to ensure safe, dignified menstruation. FundingDowns Syndrome Research Foundation UK