Menstrual Health in Adolescents with Down Syndrome in the UK
Research type
Research Study
Full title
Menarche and Menstrual Health in Adolescents with Down Syndrome in the UK
IRAS ID
344714
Contact name
Katie greenland
Contact email
Sponsor organisation
London School of Hygiene & Tropical Medicine
Duration of Study in the UK
1 years, 2 months, 16 days
Research summary
Research Summary:
Available evidence indicates that people with learning difficulties face unique challenges and suffer disparities in many aspects of their menstrual health experience. This research aims to describe the menstrual health-related knowledge and experiences of adolescents with Down syndrome in the UK to inform the development of targeted, evidence-based interventions and guidance to improve menstrual health outcomes for this population. This mixed-methods study involves a national online survey targeting caregivers of adolescents aged 10-19 years with Down syndrome and follow-up interviews with adolescents aged 13-19 years and their family and professional caregivers. The research will take 12 months to complete.
Research Results:
Research Background: Adolescents with Down syndrome experience unique physical, communication, and emotional challenges when managing their periods (menstruation). Despite this, very little research exists on their direct experiences and needs. This study was needed to understand these challenges across the UK, with the goal of developing tailored, practical, and evidence-based support resources for this population.
Study Participants: The study looked at the experiences of adolescents with Down syndrome aged 13 to 19 across a wide range of cognitive and communication abilities, including individuals with a dual diagnosis of Down syndrome and Autism Spectrum Disorder (ASD), primarily from the perspective of their caregivers, but also through direct participation of adolescents with Down syndrome. The study included: 143 primary caregivers (mostly mothers) from across the UK who completed an online survey; six adolescent girls with Down syndrome who took part in face-to-face interviews; 11 mothers and 8 professionals (including a school nurse, a family doctor, a pediatrician, and special education teachers) who were interviewed about their experiences providing care and support.
Interventions: This was an observational study, meaning participants did not receive any medical treatments, drugs, or clinical interventions.
Study Process: The study took place between September 2024 and September 2025. It began with an Advisory Group (made up of medical experts, educators, young women with Down syndrome, and caregivers) who helped design the study and simplify the language used. Caregivers completed an online survey, and researchers visited adolescents in their homes for interviews, which were conducted alongside their mother. Interviews with mothers, healthcare professionals and teachers took place in person and online.
Results: The research showed that the typical age for an adolescent with Down syndrome to start their first period is 12 years old, which matches the wider population. Teenagers generally handled starting their periods much better than their parents expected, however, 91% of caregivers still had ongoing concerns about menstruation. The biggest areas of concern identified were heavy periods (48%), managing personal hygiene care (45%), physical period pain (45%), and the difficulties adolescents face in communicating that pain to others (26%). The emotional impact of menstruation was significantly higher for adolescents who have higher day-to-day support needs. Additionally, 33% of caregivers felt "overwhelmed" by the responsibility of providing menstrual care. Modern period products like absorbent period underwear (“magic pants”) were highly praised for improving independence and making care easier. There was considerable demand for accessible educational tools and practical resources.
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
24/LO/0493
Date of REC Opinion
2 Aug 2024
REC opinion
Further Information Favourable Opinion