A qualitative study on the experiences of caregivers on menstrual management of adolescent girls with developmental disabilities in selected special schools of Karveer Taluka, Maharashtra.

Abstract Background: Adolescent Girls with Developmental Disabilities (AGDD) face unique challenges in menstruation management, requiring care and support from both informal and formal caregivers. Limited research has explored the experiences of these caregivers in managing AGDD's menstrual health, particularly in the present study settings. Objective: This study seeks to explore the experiences and perspectives of the informal and formal caregivers on the menstruation management of adolescent girls with developmental disabilities in selected special schools in Karveer Taluka, Maharashtra Methods: A qualitative study was conducted in three special schools in Karveer Taluka, Maharashtra among informal caregivers (n=14) and formal caregivers (n=13) caring for AGDD aged 10–19 years who had attained menarche. In-depth interviews in Marathi were conducted to collect data using validated open-ended guides. Interviews were audio-recorded with consent and transcribed verbatim. Thematic analysis was performed using MAXQDA 2022 software. Results: Five themes emerged: Challenges faced by informal caregivers, patterns of menstrual acceptance and behavioural changes among AGDD, role of formal caregivers in training AGDD in menstruation management, perspectives of caregivers about hysterectomy, and recommendations given by the caregivers. Informal caregivers highlighted significant practical and emotional challenges, and formal caregivers shared the various strategies they employ in special schools to manage the menstruation of AGDD. Conclusion: The study underscores the critical role of informal and formal caregivers and the challenges they face in managing AGDD's menstrual health highlighting the need for targeted training and support programs.