Disability Inclusion in Pandemic Responses in the Global South: Capturing narratives of people with disabilities, in Bangladesh and Liberia

1) Project background The current pandemic of COVID-19 presents challenges in the delivery of care worldwide. However, COVID-19 is projected to disproportionately affect vulnerable groups, including people living with disabilities (Hankivsky and Kapilashrami 2020). People with disabilities are a particularly vulnerable group due to intersecting biological and social risk factors compared to the general population, including: higher prevalence of co-morbidities and chronic conditions and necessity of contact with care givers, relatives and support staff (Courtenay 2020). Depending on levels of support required, social distancing may not be possible. Additionally, and in times of crisis, people with disabilities often face health inequities due to lack of accessible health information, delays in treatment and diagnosis, and lack of reasonable adjustments within healthcare settings (Wijne et al., 2014). Many people with disabilities are on reduced incomes or unemployed and therefore live closer to the margins of poverty (Banks et al.,2017; Dean et al., 2018). This further adds to the social determinants of poor health outcomes, particularly in the Global South as many rely on daily income, with less access to care and often, the absence of services (Emerson, 2011). COVID-19 also exacerbates the risk of further stigmatisation and neglect of groups often already socially isolated. There is minimal evidence on the mental health impacts of COVID-19, especially for people with disabilities. In the USA, relatives of people with disabilities have reported that people with cognitive disabilities are experiencing heightened stress due to changes in routines and isolation as a result of social distancing measures (Torres, 2020). Existing services for psychosocial support are often disrupted during crises, while stigma and neglect can expose people with disabilities to experience abuse and violence (Ryan et al., 2020). There is a significant lack of research on the impact of COVID-19 on people with disabilities, particularly in the Global South. In Bangladesh and Liberia, 14% and 16% respectively of the population are thought to live with disabilities, however there is minimal academic research to document the needs and experiences of this population group (ILO 2020; LISGIS 2017). This research seeks to respond to this evidence gap by documenting experiences of people with disabilities and their caregivers during COVID-19, considering how this may vary based on geography, age, gender and socio-economic factors. I will work in partnership with local Disabled People's Organisations (DPOs) in Bangladesh and Liberia, and BRAC James P Grant School of Public Health as potential collaborators to capture these seldom heard narratives. This project will take a rights-based approach to highlight the needs of people with disabilities to develop strategies, that ensure no one is left behind in immediate and long-term responses to COVID-19; these recommendations will also be shared with large NGOs. People with disabilities are often excluded from being actively involved in research. However, this research aims to prioritise the views of people with disabilities as they document their experiences and direct how they want their stories to be represented through the participatory methods of photovoice and diaries. This project links to the RSTMH priority of topical issues as an emerging disease; capturing narratives of marginalised groups during COVID-19 is timely and serves as a way to learn lessons and considerations towards inclusive responses to pandemics. 2) Aims/research being addressed • To capture and understand the lived, individual experiences of people with disabilities and their caregivers during COVID-19 in real time across two different LMIC settings. • To explore perceptions, needs and the psychosocial impact of COVID-19 on people with disabilities and how this varies based on intersecting axes of inequity e.g. gender, poverty and socioeconomic status. • To highlight areas that need to be prioritised and considered from the perspectives of people with disabilities to ensure more equitable responses to health systems shocks as a result of emerging infectious disease 3) Study design This study will utilise participatory research methods including: photovoice, phone interviews and diaries (using pen and paper, drawings or voice memos depending on the preferences and abilities of participants) with people with disabilities and their caregivers. Key informant interviews with programme and policy implementers and those who work in support services for disability inclusion will also be conducted over Skype to understand perspectives on gaps in service delivery. Participants will be purposively selected to ensure maximum variation in age, gender and levels of disabilities across the whole sample; participants with learning disabilities will be included where possible through snowballing. Participants will be identified through BRAC and local DPOs in Bangladesh and Liberia. Seven adults living with disabilities and their caregivers will be included in both settings, with a total of 28 participants across the study. Eighteen years is chosen as the age of maturity in Bangladesh and Liberia, where participants are legally able to give consent. Accessible consent and information sheets and videos will be given to participants. Where assent is required, we will follow best guidance from literature and mentors in the UK, Bangladesh and Liberia. A mixture of methods will be used; photovoice will be used with participants who have access to smart technologies while telephone interviews will be conducted with participants who only have access to phones. All photovoice and diary participants will initially be provided with training, through videos shared on WhatsApp and, where possible to maintain physical distancing, one to one by researchers on an overview of the research, ethics of taking photos, and how to use cameras. The photovoice process adapted from Ronzi et al (2019) to be used remotely is described below: Step 1: Participants will be asked to take pictures within their surroundings that represent their experience of living through COVID-19 over a three-week period. Step 2: Participants will be asked to share key photos and captions every few days using WhatsApp. Discussions with participants that focus on the meaning and importance of the photographs will be conducted over Skype or phone. Step 3: In final discussions, participants will be asked to pick 10 key photos. Step 4: Photos will be clustered by theme across all participants. Participants will be asked to pick 1-2 photos each that represent each theme, which will be shared in a photo booklet. Step 5: Photos will be disseminated in a photo booklet, with health implementers and policy makers. Recommendations will be made following discussions on what gaps to address during key informant interviews. 4) Approach used to maximise the impact of research outputs Including the views and participation of people with disabilities can increase accountability in health implementation and policy. Capturing narratives and stories can highlight social, economic and psychosocial impacts and therefore better inform responses and interventions which are disability inclusive. Visual methods such as photovoice are a powerful tool in showing decision-makers the lived realities and needs of people affected by disability and can be impactful in shaping programme and policy design. Through early discussions with BRAC James P Grant School of Public Health on the entry to communities, while working in partnership with local DPOs in Bangladesh and Liberia ensures the relevance of the research to ongoing evidence needs and emerging programme priorities. These platforms will be used to disseminate research findings in the form of policy briefs, reports and academic publications and will provide a valid platform for engagement of programme implementers and policy makers for uptake of research findings in these contexts. Strengthening the capacity of people with disabilities to document their own realities and advocate for change is likely to have lasting impact. Throughout the project, we will build networks and relationships amongst participants and encourage them to take collective action to meet emergent needs. 5) Expected outcomes • Understanding of the lived experiences of people with disabilities in Bangladesh and Liberia during the COVID pandemic and how this is shaped by age, gender, socio-economic factors and geography. • Documentation of perceptions, needs and the psychosocial impact of COVID-19 on people with disabilities and their caregivers to understand gaps in services • Recommendations developed in a policy brief on areas that need to be prioritised and considered from the perspectives of people with disabilities for more inclusive responses and policies. 6) Role in the project I have experience both as an NGO practitioner and as a researcher and this project is an opportunity to bring these skill sets together. As a research assistant, I have used qualitative and participatory research methods to develop community level inclusion programmes on neglected tropical diseases, which result in lifelong morbidity and disability. During the past year, I have developed skills in conducting implementation research to support the development of more inclusive health systems in Nigeria and Liberia. This project builds on my experience in Liberia while I also have personal experience and an understanding of context in relation to disabilities in Bangladesh; I am also fluent in Bangla and working across two LMIC contexts will strengthen collaboration. Within this project, I will draw on these skills to implement the project in collaboration with my supervisor and partners. My role will be in leading partnership development, data collection, analysis and dissemination of the findings.