Feasibility study of a menstrual health behaviour change intervention for women and girls with intellectual disabilities and their caregivers for Vanuatu's humanitarian responses.

The Veivanua campaign is a menstrual health intervention for people with intellectual disabilities and their caregivers in Vanuatu's humanitarian setting. The campaign was adapted from the Bishesta campaign delivered in Nepal's development setting. This feasibility study is designed to assess the feasibility and acceptability of the Veivanua campaign to understand if efficacy testing is warranted. The Veivanua campaign was delivered to a preselected group of 30 young people (individuals with intellectual disabilities) and 35 caregivers (males and females). Data were collected through several qualitative tools to allow for methods triangulation: process monitoring, post-intervention in-depth interviews with caregivers and nine young people, observation of young persons, photovoice and ranking with two young people, campaign resource ranking, and key informant interviews with staff involved in the intervention. Data were analysed thematically using Nvivo 12. Results show that the Veivanua campaign is feasible. Male and female caregivers reported an increased ability to support young people's menstrual health and greater preparedness for the next emergency. Young people understood the training and applied their learning. Key informants want to scale up the intervention in their humanitarian responses. Several changes were made to the adapted campaign, but similar outcomes were recorded in Nepal and Vanuatu. All target behaviours improved, and campaign resources were used, but many caregivers found the menstrual calendar confusing. The intervention was not delivered with fidelity but responded to the context. The campaign cost more than the Bishesta campaign because procurement was more expensive in Vanuatu. In conclusion, this is the first intervention globally, so it begins to fill a substantial gap, but more must be done. As the Veivanua campaign is feasible, it requires efficacy testing in Vanuatu. It should also be adapted to humanitarian crises in other countries to support the menstrual health of this previously excluded population.

The inclusion of disability and aging in COVID-19 hygiene behavior change interventions across low-and middle-income countries: A review using the COVID-19 Inclusive WASH Checklist.

Introduction: People with disabilities and older adults face a high risk of dying from COVID-19. Handwashing with soap and sanitizing surfaces were recommended to disrupt COVID-19 transmission. Yet, in many low-and middle-income countries (LMICs), these populations have inadequate access to water, sanitation and hygiene (WASH) and are not reached by public health campaigns. The Hygiene Behavior Change Coalition (HBCC) was set up to limit the spread of COVID-19 in LMICs. Twenty organizations working across 37 countries were funded to encourage populations to adopt recommended personal hygiene behaviors. This study aims to review the inclusion of disability, aging, and caregiving in HBCC grantee interventions. Methods: A COVID-19 Inclusive WASH Checklist, which incorporates core concepts of human rights, was developed to support the inclusion of disability, aging and caregivers in interventions. The Checklist was applied to 137 documents submitted to donors within the HBCC fund to assess inclusion. Eligible grantee programme documents related to HBCC-funded projects were identified between August 2020 and January 2021. Feedback was provided to grantees recommending how to strengthen the inclusion of disability, aging, and caregiving. Results: Most organizations identified people with disabilities, older adults and caregivers as target groups, but targeted activities to include them were scarce. Where efforts were made, immediate needs rather than rights were addressed. For example, the construction of accessible handwashing facilities featured more prominently than ensuring the participation of these groups. Examples of the coverage of core concepts in interventions included generating data with these groups and developing interventions accordingly. Limitations to inclusion were inconsistent organizational approaches, inability to monitor media campaigns, and inadequate coverage of disability and aging in donor's grant funding mechanisms. Conclusion: To ensure these populations benefit from efforts, they must be explicitly identified as target groups, with assigned actions that are monitored; efforts must go beyond accessible WASH services to ensure the meaningful participation of these groups. The COVID-19 Inclusive WASH Checklist supports this but requires further testing to assess its appropriateness and effectiveness.

Menstrual Health Experiences of People with Intellectual Disabilities and Their Caregivers during Vanuatu's Humanitarian Responses: A Qualitative Study.

Attention to menstrual health in humanitarian responses is increasing, but evidence related to people with intellectual disabilities and their caregivers is absent. This study begins to address that. We applied purposive sampling to select 17 women and girls (aged 15-31) with intellectual disabilities, their 17 caregivers in SANMA province, Vanuatu, and seven key informants. We used in-depth interviews, PhotoVoice and ranking, and observation and analysed data thematically using Nvivo 12. We found that caregivers wished to maintain the person's safety and privacy, especially when menstruating, which reduced evacuation options. People with intellectual disabilities support requirements sometimes increased after emergencies. This meant caregivers were less able to work and recover from disasters. Caregivers requested the distribution of more reusable menstrual materials and a greater choice, including adult-sized diapers for menstruation and incontinence. Key informants noted that menstrual health interventions must always be delivered to people with intellectual disabilities and their caregivers so that menstrual health knowledge and practices exist before emergencies. We found that men and women supported people with intellectual disabilities' menstrual health, thus challenging gendered assumptions about caregiving. Efforts to achieve menstrual health for this population within disaster preparedness plans must be included. If not, families will fall further into poverty every time a disaster hits Vanuatu.

"The weather is not good": exploring the menstrual health experiences of menstruators with and without disabilities in Vanuatu.

BACKGROUND: Menstrual health is essential for gender equality and achieving the sustainable development goals. Though currently lacking, understanding and addressing menstrual health and social related inequalities requires comparison of experiences between menstruators with and without disabilities. METHODS: We completed a mixed-methods population-based study of water, sanitation and hygiene, disability and menstrual health in TORBA and SANMA Provinces, Vanuatu. Methods included a census, nested case-control study, in-depth interviews (IDIs), focus group discussions (FGDs), PhotoVoice and structured observations. We undertook a population census of 11,000+ households and recruited 164 menstruators with and 169 without disabilities (aged 10-45) into a nested case-control study. 20 menstruators across both groups were selected for the qualitative component. FINDINGS: Menstruators with disabilities were five times (adjusted Odds Ratio [aOR] 5.5, 95% Confidence Interval 1.8 - 16.5) more likely to use different bathing facilities to others in the household, nearly twice as likely (1.8, 1.1 - 3.1) to miss social activities, and three times (3.0, 1.6 - 5.7) more likely to eat alone during menstruation. Menstrual restrictions were widespread for all, but collecting water and managing menstrual materials was harder for menstruators with disabilities, particularly those requiring caregivers' support. These factors negatively impacted menstruators with disabilities' comfort, safety and hygiene, yet they reported less interference of menstruation on participation. INTERPRETATION: Negative factors affecting all menstruators disproportionately impact those with disabilities, compounding existing inequalities. Menstruators with disabilities may have reported less interference because they are accustomed to greater participation restrictions than others. FUNDING: Australian Government's Water for Women fund and public donations.

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

BACKGROUND: Incontinence is the involuntary loss of urine and/or faeces. It is stigmatised and can reduce quality of life. People with incontinence require water, sanitation, hygiene (WASH) and incontinence products. People with disabilities are at risk of experiencing incontinence and may face challenges managing, however, minimal evidence exists. METHODS: This study aimed to complete a population-based study of disability in TORBA and SANMA Provinces, Vanuatu to quantify the prevalence and demographics of disability, experience of WASH access and incontinence for people with and without disabilities. We completed a survey, case-control study, in-depth interviews, structured observations and PhotoVoice. 179 people with disabilities and 148 people without disabilities completed the incontinence module in the case-control study. We applied purposeful sampling to select 27 people with and without a disability from the nested case-control, and 16 key informants for the qualitative study to further explore the impact of incontinence on people's lives. FINDINGS: People with disabilities were three times more likely to experience incontinence than people without disabilities (Adjusted Odds Ratio 3.3, 95% confidence interval 1.8 - 5.8). Challenges facing all people with incontinence were distance to latrines and lack of incontinence products. People with disabilities were less able to wash and participate in social activities. Less than 10% had assistive technologies; caregivers had no lifting devices. People experiencing incontinence did not disclose this to others, including medical professionals, who also did not raise the issue. INTERPRETATION: Inaccessible and inadequate WASH, lack of incontinence products and stigma increased isolation for all people with incontinence. Additionally, people with disabilities and caregivers faced discrimination and insufficient assistive technologies. This negatively affected their wellbeing and quality of life, and requires addressing. FUNDING: Australian Government's Water for Women Fund and public donations.

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

PURPOSE: This study assesses the inclusion of disability in Nepal's policy and guidance relevant to water, sanitation and hygiene (WASH), and menstrual hygiene management (MHM) in comparison to gender. We investigated both policy formulation and implementation, using the Kavrepalanchok district as a case study. MATERIALS AND METHODS: We used the EquiFrame framework, adapted for disability and gender, and focusing on WASH and MHM. Ten Nepali policies and guidance documents were reviewed and scored for quality against the framework, which included 21 core concepts of human rights. We also interviewed key informants to consider the inclusion of disability in the implementation of MHM interventions. We applied stratified purpose sampling to 12 government officials and service providers working in Kathmandu and the Kavrepalanchock district; conducted in-depth interviews and analysed data thematically using Nvivo 11. RESULTS: Disability was inadequately covered within the policy documents, and MHM policy commitments for disability were almost non-existent. Participation of people with disabilities in policy development was limited; within Kavrepalanchok, policy commitments were not implemented as intended and disability service providers were unable to allocate government resources. Inadequate data on disability and MHM resulted in limited professional understanding of the issues, as service providers had no training. A narrow WASH infrastructure approach to improving MHM for people with disabilities was prioritised. MHM interventions were delivered in schools; these failed to reach children with disabilities who are often out of school. Finally, there were indications that some caregivers seek sterilisation for people with disabilities who are unable to manage menstruation independently. CONCLUSION: Though the Constitution of Nepal enshrines gender equality and disability inclusion, there are consistent gaps in attention to disability and MHM in policies and practice. These omit and exclude people with disabilities from MHM interventions. Investment is required to generate evidence on the MHM barriers faced by people with disabilities, which would then be drawn on to develop training on these issues for professionals to improve understanding. Subsequently, policy makers could include more concepts of human rights against disability in relevant policies and service providers could implement policy commitments as intended.

Are the rights of people with disabilities included in international guidance on WASH during the COVID-19 pandemic? Content analysis using EquiFrame.

PURPOSE: People with disabilities are at increased risk from COVID-19. Access to water, sanitation and hygiene (WASH) services and facilities is a fundamental right for all, and is vital in stopping the transmission of COVID-19. However, people with disabilities often face difficulties accessing WASH. Various international organisations have published guidance and recommendations on WASH service provision during the COVID-19 pandemic, and this must include information of relevance to people with disabilities. This study aimed to investigate the inclusion of core concepts of rights for people with disabilities in guidance on WASH during the COVID-19 pandemic. METHOD: We used the EquiFrame content analysis tool to analyse the inclusion of 21 core concepts of rights for people with disabilities in international guidance documents on WASH during the pandemic. 29 documents were included from multilateral entities, international consortiums and non-governmental organisations. Key information from the included guidance documents was extracted for each of the 21 core concepts. RESULTS: One-third of the WASH guidance did not include any reference to the rights of people with disabilities, and the majority of information was provided by just one guidance document. Most commonly referenced across all was access to WASH, including details on accessible infrastructure (eg, handwashing stations) and communication strategies. Information on many important rights and considerations, such as the affordability of services and caregiver support, was rarely included. CONCLUSION: Although some information is provided in international WASH guidance, this often has a narrow focus on access, rather than the full array of rights and considerations that are important for people with disabilities. International guidance should continue to be reviewed and updated to include further information of relevance to people with disabilities, informing a disability-inclusive approach to WASH during the remainder of the COVID-19 pandemic and future crises.

Water, women and disability: Using mixed-methods to support inclusive WASH programme design in Vanuatu.

BACKGROUND: Adequate access to water, sanitation and hygiene (WASH) is imperative for health and wellbeing, yet people with disabilities, people with incontinence and people who menstruate often experience unmet WASH requirements. METHODS: In 2019 we completed a mixed-methods study in two provinces of Vanuatu, (SANMA and TORBA). The study comprised 1) a population-based disability survey using the Washington Group Short-Set 2) a nested case-control study to explore associations between WASH, disability and gender, and 3) an in-depth qualitative assessment of the experiences of WASH users with additional requirements: people with and without disabilities who menstruate, or experience incontinence. FINDING: 11,446 households (response rate 85%) were enrolled into the survey. All-age disability prevalence across the two provinces was 2.6% (95% Confidence Interval 2.5-2.8), increasing with age. 814 people with, and 702 people without disabilities participated in the case-control study. People with disabilities were statistically more likely to experience barriers in seven of eight intra-household indicators. WASH-related stigma, reliance on informal caregivers, and under-resourcing of WASH personnel were critical issues for people who menstruate or experience incontinence. INTERPRETATION: People with disabilities, people with incontinence and people who menstruate in Northern Vanuatu face continued challenges in accessing safe, affordable and appropriate WASH that meets their requirements. Outputs from this study have supported progression towards gender and disability-inclusive WASH programming in the area and highlighted the value of mixed-methods research. FUNDING: The research was funded by the Australian Government's Water for Women fund and donations from the Australian public.

The Inclusion of Rights of People with Disabilities and Women and Girls in Water, Sanitation, and Hygiene Policy Documents and Programs of Bangladesh and Cambodia: Content Analysis Using EquiFrame.

People with disabilities and as women and girls face barriers to accessing water, sanitation, and hygiene (WASH) services and facilities that fully meet their needs, especially in low- and middle-income countries. Women and girls with disabilities experience double discrimination. WASH policies should support and uphold the concepts of disability and gender inclusion, and they should also act as a guide to inform WASH programs and service delivery. Using a modified version of the EquiFrame content analysis tool, this study investigated the inclusion of 21 core concepts of human rights of people with disabilities and women and girls in 16 WASH policy documents and seven end-line program reports from Bangladesh and Cambodia. Included documents typically focused on issues of accessibility and neglected wider issues, including empowerment and support for caregivers. The rights of children and women with disabilities were scarcely focused on specifically, despite their individual needs, and there was a disconnect in the translation of certain rights from policy to practice. Qualitative research is needed with stakeholders in Bangladesh and Cambodia to investigate the inclusion and omission of core rights of people with disabilities, and women and girls, as well as the factors contributing to the translation of rights from policy to practice.

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.

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'.

Feasibility Study of a Menstrual Hygiene Management Intervention for People with Intellectual Impairments and Their Carers in Nepal.

Background: The Bishesta campaign is a menstrual hygiene management (MHM) intervention developed to meet the specific needs of people with intellectual impairments and their carers. It was designed and delivered in the Kavre district, Nepal. This paper explores the campaign's feasibility and acceptability. Methods: The Bishesta campaign was delivered to ten people with an intellectual impairment and their eight carers. Data on the feasibility and acceptability of the intervention was collected through: Structured questionnaire to participants before and after the intervention, process monitoring data, post-intervention in-depth interviews with all carers, observation of people with intellectual impairments, key informant interviews with all facilitators and staff involved in the campaign, as well as ranking of the perceived appropriateness and acceptability of campaign components by carers and facilitators. Results: The Bishesta campaign was acceptable for the target groups, facilitators, and implementers. It was largely delivered with fidelity. Participants used most of the campaign components; these made the target behaviours attractive and enabled participants to carry them out with ease. There were improvements across all target behaviours. The focus of this study was feasibility, not limited-efficancy; however, indicative positive outcomes from this small sample were observed, such as an increase in young people's levels of confidence, comfort, and autonomy during menstruation. Conclusion: Within the sample, the Bishesta campaign appears to be a feasible intervention to ensure that one of the groups most vulnerable to exclusion from MHM interventions is not left behind.

Are current approaches for measuring access to clean water and sanitation inclusive of people with disabilities? Comparison of individual- and household-level access between people with and without disabilities in the Tanahun district of Nepal.

BACKGROUND: The critical importance of safe and affordable access to water, sanitation and hygiene (WASH) is highlighted in Goal 6 of the Sustainable Development Goals, which seeks to achieve universal and equitable access for all by 2030. However, people with disabilities-who comprise 15% of the global population-frequently face difficulties meeting their WASH needs. Unmet WASH needs amongst people with disabilities may not be captured through current approaches to tracking progress towards Goal 6, which focus on household- rather than individual-level access. OBJECTIVE: To evaluate access to safe water, sanitation and hygiene (WASH), at the individual- and household-level, amongst people with disabilities in the Tanahun district of Nepal. METHODS: A population-based survey of disability was conducted from August-October 2016 to evaluate access to improved water and sanitation facilities between households with members with disabilities (n = 198) and those without (n = 1,265) in the Tanahun district of Nepal. A nested case-control then compared individual-level access between cases aged 15 and above with disabilities (n = 192) and age-sex-location matched controls without disabilities (n = 189), using the newly developed 21-item "Quality of WASH Access" questionnaire. Multivariate regression was used to compare household- and individual-level indicators between people and households with and without disabilities. In-depth interviews with 18 people with disabilities and their caregivers was conducted to assess the acceptability and appropriateness of the "Quality of WASH Access" questionnaire. FINDINGS: There were no significant differences between households with and without members with disabilities in access to an improved sanitation facility or water source. However, at the individual-level, people with disabilities experienced significantly greater difficulties accessing water, sanitation and hygiene compared to people without disabilities (p<0.001 for all three scores). Amongst people with disabilities, water difficulty scores were associated with having a physical impairment and greater disability severity; sanitation difficulty scores were associated with lower socioeconomic status and physical or self-care limitations; and hygiene difficulty scores were positively associated with self-care limitations and lower socioeconomic status, and inversely associated with hearing impairments. Qualitative research found the "Quality of WASH Access" questionnaire was well understood by participants and captured many of the challenges they faced. Additional challenges not covered by the tool included: (1) time spent on WASH, (2) consistency of access, (3) sufficiency of access, and (4) dignity of access. CONCLUSION: People with disabilities face substantial challenges to meeting their WASH needs, particularly in using services autonomously, consistently, hygienically, with dignity and privacy, and without pain or fear of abuse. These challenges are not captured through household-level data, and so individual-level WASH access are needed to monitor progress towards universal WASH access. The Quality of WASH Access questionnaire may provide a useful data collection tool.

Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people.

BACKGROUND: One quarter of the global population is of menstruating age, yet menstruation is shrouded in discrimination and taboos. Disability also carries stigma, so disabled people may face layers of discrimination when they are menstruating. The objective of the review is to assess the menstrual hygiene requirements of disabled people, the barriers they face, and the available interventions to help them manage their menstruation hygienically and with dignity. METHODS: Eligible studies, gathered across all countries, were identified by conducting searches across four databases (MEDLINE, PubMed, EMBASE, Global Health) in May 2017, with alerts set on each database to highlight new titles added until April 2018. Eligible studies incorporated analyses relevant to menstruating disabled people and/or how their carers provide support during their menstrual cycle. RESULTS: The 22 studies included were published since 1976; the majority after 2010 (n = 12; 55%). One study was a quasi-experiment; all others were observational. Most studies (n = 15; 68%) were from high income countries and most (n = 17; 77%) focused on people with intellectual impairments, so the review findings focus on this group and their carers. Outcomes investigated include choice and preference of menstrual product, ability to manage menstrual hygiene and coping strategies applied. Barriers faced included a lack of standardised guidance for professional carers; a lack of menstruation training, information and support provided to people with intellectual impairments and their carers; a lack of understanding of severity of symptoms experienced by people with intellectual impairments, the high cost of menstrual products and lack of appropriate options for people with physical impairments. Few interventions were found, and strategies for menstrual hygiene management applied by carers of persons with intellectual impairments include limiting the disabled person's movements when menstruating and suppressing their menstruation. CONCLUSIONS: Little evidence was identified on the requirements of disabled people and their carers in managing their menstruation, and only one intervention, but a range of barriers were identified. This gap in evidence is important, as the consequences of failing to meet menstrual hygiene needs of disabled people includes shame, social isolation, and even sterilisation. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018095497.

Developing Behaviour Change Interventions for Improving Access to Health and Hygiene for People with Disabilities: Two Case Studies from Nepal and Malawi.

Limited evidence exists about how to design interventions to improve access to health care for people with disabilities in low and middle-income countries (LMICs). This paper documents the development of two behaviour change interventions. Case study one outlines the design of an intervention to improve uptake of referral for ear and hearing services for children in Malawi. Case study two describes the design of an intervention to improve menstrual hygiene management for people with intellectual impairments in Nepal. Both followed existing approaches-Medical Research Council Guidance for developing and evaluating complex interventions and Behaviour Centred Design. The purpose is to demonstrate how these frameworks can be applied, to document the interventions developed, and encourage further initiatives to advance health services targeting people with disabilities. Important components of the intervention design process were: (1) systematic reviews and formative research ensure that interventions designed are relevant to current discourse, practice and context; (2) people with disabilities and their family/carers must be at the heart of the process; (3) applying the theory of change approach and testing it helps understand links between inputs and required behaviour change, as well as ensuring that the interventions are relevant to local contexts; (4) involving creative experts may lead to the development of more engaging and appealing interventions. Further evidence is needed on the effectiveness of these types of interventions for people with disabilities to ensure that no one is left behind.