Qualitative study exploring the barriers to menstrual hygiene management faced by adolescents and young people with a disability, and their carers in the Kavrepalanchok district, Nepal

Abstract

Background Menstrual hygiene management (MHM) is a recognised public health, social and educational issue, which must be achieved to allow the realisation of human rights. People with disabilities are likely to experience layers of discrimination when they are menstruating, but little evidence exists. Methods The study aims to investigate barriers to MHM that people with disabilities and their carers face in the Kavrepalanchok, Nepal, using qualitative methods. Twenty people with disabilities, aged 15–24, who menstruate and experience ‘a lot of difficulty’ or more across one or more of the Washington Group functional domains were included, as well as 13 carers who provide menstrual support to these individuals. Purposeful sampling was applied to select participants. Different approaches were used to investigating barriers to MHM and triangulate data: in-depth interviews, observation, PhotoVoice and ranking. We analysed data thematically, using Nvivo 11. Results Barriers to MHM experienced by people with disabilities differ according to the impairment. Inaccessible WASH facilities were a major challenge for people with mobility, self-care and visual impairments. People with intellectual impairments had difficulty accessing MHM information and their carers despaired when they showed their menstrual blood to others, which could result in abuse. No support mechanisms existed for carers for MHM, and they felt overwhelmed and isolated. Menstrual discomfort was a major challenge; these were managed with home remedies, or not at all. Most participants followed menstrual restrictions, which were widespread and expected; many feared they would be cursed if they did not. As disability is often viewed as a curse, this demonstrates the layers of discrimination faced. Conclusion Issues related to MHM for people with disabilities is more complex than for others in the population due to the additional disability discrimination and impairment experienced. Research exploring these issues must be conducted in different settings, and MHM interventions, tailored for impairment type and carers requirements,should be developed. Attention to, and resourcing for disability inclusive MHM must be prioritised to ensure ‘no one is left behind’.

Are Nepal’s water, sanitation and hygiene and menstrual hygiene policies and supporting documents inclusive of disability? A policy analysis

“…Within policy documents, the human rights core concepts, Family resource (which recognizes the value of the family members of people with disabilities in addressing MHM needs), Family support and Autonomy, were not referenced against disability. There was also inadequate support and MHM guidance for caregivers in the Kavre district, which can lead caregivers to feel overwhelmed and isolated [23]. These factors, along with menstrual taboos and disability discrimination, can result in the sterilisation of the person with a disability in order to cease menstruation and guard against unwanted pregnancies [11,12,51,[64][65][66].…”

“…Our study sits within the wider Disabling Menstrual Hygiene Barriers research which aims to investigate and address the barriers to MHM that young people with disabilities face in the Kavrepalanchok (hereafter referred to as Kavre) district, Nepal [23].…”

“…Kathmandu and the Kavre District were selected as the study sites for the qualitative interviews. Kathmandu was selected as it is the administrative capital of Nepal, and the Kavre district was selected because it was already chosen as the Disabling Menstrual Hygiene Barriers research study site [23]. Kavre is one of Nepal's 77 districts, with a population of 381,937, and estimated basic water coverage is 89%, whilst basic sanitation coverage is 98% [37] (water and sanitation coverage is from unpublished data).…”

“…Our all-woman qualitative research team consisted of the lead author, a Nepali Research Coordinator, and two Nepali Field Researchers who have a disability. The research team undertook a week-long training, led by the lead author and a LSHTM colleague on how to conduct ethical research on MHM with key informants, people who have a disability and their caregivers [23].…”

“I'm scared to talk about it”: exploring experiences of incontinence for people with and without disabilities in Vanuatu, using mixed methods

“…Qualitative data generation tools developed drew on inclusive participatory methods that the London School of Hygiene & Tropical Medicine (LSHTM) research team have designed and piloted for exploring sensitive topics with people with disabilities [34] . We also collaborated with leading academics and practitioners working on incontinence in LMICs, World Vision, Vanuatu Society for People with Disabilities and Vanuatu Disability Promotion and Advocacy to ensure our questions explored incontinence sensitively and in a culturally relevant way.…”