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 this study setting. 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 among informal caregivers (family members) and formal caregivers (special school staff) of those AGDD, who were aged 10-19 years, had attained menarche, and were attending three selected special schools of Karveer Taluka, Maharashtra, India. In-depth interviews (IDI), in the local language, Marathi, using an IDI guide developed based on a conceptual framework, were conducted among 14 informal and 13 formal caregivers. Interviews were audio-recorded with consent and transcribed verbatim. A thematic analysis using deductive and inductive approaches was carried out using MAXQDA software. Some codes and themes were deductively generated from the interview guide/conceptual framework, and others were generated inductively from the data. The transcripts were coded line by line and later grouped under relevant categories. Categories were grouped into subthemes, and broader themes were derived from the subthemes. The themes were interpreted and analyzed, and appropriate conclusions were drawn. RESULTS: Four deductive and one inductive theme were generated: The deductive themes are challenges faced by informal caregivers in managing menstruation of AGDD, patterns of menstrual acceptance and behavioural changes among AGDD, long-term concerns of the informal caregivers and perspectives on menstrual management, and recommendations given by the informal and formal caregivers for supporting AGDD. The inductive theme generated is the role of formal caregivers in training AGDD in menstruation management. CONCLUSION: The study underscores the critical role of informal and formal caregivers and their challenges in managing AGDD's menstrual health, highlighting the need for targeted training and support programs.