Abstract

BackgroundThis study offers voice to young adolescent women with cerebral palsy (CP) in Bangladesh as they describe their menstrual experiences and needs, and their mothers providing menstrual support.MethodSemi-structured focus groups with adolescents with CP, and separately their mother. Data was analysed using a material discursive framework and drawing on feminist disability theory. Participants were recruited from the Bangladesh CP Register (BCPR); a population-based surveillance of children and adolescents with CP in rural Bangladesh.ResultsParticipants were 45 women including 12 female adolescents with CP and 33 female caregivers. Participants reported a wide range of experiences and needs; menarche acted as a gateway to menstrual information although for some a discourse of silence prevailed due to exclusion from peer and familial networks. Menstruation was discursively constructed as a sign of ‘female maturation’ marked by an expectation of ‘independence’, required for acceptance into socially valued adult roles, and was positioned alongside increased vulnerability to sexual abuse. Young adolescent women with CP were expected to ‘quietly endure’ the material aspects of menstruation although unmanaged pain and distress were described. Mothers reported an imperative for meeting their adolescent’s menstrual needs however this role was discursively positioned as ‘painful’, ‘irritating’ and ‘shameful’, in part due to an absence of affordable, functional menstrual resources.ConclusionThe findings of the present study provide motivation for disability services in Bangladesh to account for the menstrual needs of young adolescent women with CP within service delivery through strategies such as providing menstrual education and by embedding value in constructs such as ‘interdependence’. Moreover, interventions focused on alleviating menstrual pain among young adolescent women with CP as well as those targeted to alleviate distress among mothers providing menstrual care are required. Finally, policy responses are required to ensure that ‘inclusive development’ considers the needs of menstruating women with disability.

Highlights

  • This study offers voice to young adolescent women with cerebral palsy (CP) in Bangladesh as they describe their menstrual experiences and needs, and their mothers providing menstrual support

  • The findings of the present study provide motivation for disability services in Bangladesh to account for the menstrual needs of young adolescent women with CP within service delivery through strategies such as providing menstrual education and by embedding value in constructs such as ‘interdependence’

  • Interventions focused on alleviating menstrual pain among young adolescent women with CP as well as those targeted to alleviate distress among mothers providing menstrual care are required

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Summary

Introduction

This study offers voice to young adolescent women with cerebral palsy (CP) in Bangladesh as they describe their menstrual experiences and needs, and their mothers providing menstrual support. For girls and young adolescent women with cerebral palsy (CP) in rural Bangladesh menstruation may hold unique significance and require specific responses, as women navigate their material bodies alongside complex beliefs and stigmas surrounding both disability and menstruation in a low economic rural setting. The menstrual experiences and needs of girls and young adolescent women with CP are rarely accounted for in menstrual discourse, in low- and middle-income countries (LMICs) [8, 13]. More than two thirds of these children require wheeled mobility and more than half have cognitive or speech impairments [19]. Mortality of children with CP in Bangladesh is high [16] more children than ever before are surviving into adulthood; understanding menstrual experiences and needs is pertinent

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