Prevention against Emerging Infectious Diseases: An Opportunity for Inclusive Health

"This study...calls for a systematic, intentional effort toward strengthening health systems at all levels, leaving no one behind."



Handicap International - Humanity & Inclusion (HI)'s strategy in Somalia/Somaliland aims to advocate for the rights of persons with disabilities and to promote their inclusion and participation. In close collaboration with the World Health Organization (WHO), Handicap International adapted and piloted WHO's behavioural and social drivers (BeSD) of vaccination tools to understand and analyse the perception of COVID-19 vaccines, as well as the barriers to and drivers of immunisation, among persons with disabilities in internally displaced person (IDP) camps in Somalia/Somaliland. The goal was to support evidence-based disability-inclusive prevention (like risk communication and community engagement (RCCE) programmes) and to strengthen advocacy for inclusive health information and services in humanitarian settings.



The BeSD model and tools applied in this study follow a theory of change focusing on multiple domains where persons with disabilities may encounter specific or additional barriers beyond the mere issue of the physical accessibility of health facilities. The four BeSD categories (Thinking and Feeling; Motivation; Social Processes; and Practical Issues) may further be experienced in unique ways according to intersectionality (especially between gender, age, and disability). This study's hypothesis is that the drivers and barriers to vaccination are shaped in specific ways by the experience of living with a disability in a given socio-cultural context. The inclusive use of the BeSD tools, adapted to have trained staff collect disaggregated data, allows for the identification of barriers (including non-health factors) at different levels and steps before launching an RCCE or social and behavioural change communication (SBCC) campaign.



In providing context for the study, HI cites the Disability Creation Process (DCP), which focuses on risk factors, personal factors, environmental factors, and life habits that could work as facilitators or enablers of participation, since disability is the result of the interactions between all these elements that affect quality of life and inclusion in society on an equal basis. Moreover, disability is shaped by inequities in the social determinants of health (SDHs), such as health services, education, employment, housing, and living conditions - often resulting in a cycle of poverty between disability and livelihoods. Conceptualising persons with disabilities' experience as a process, this framework points out that disability is determined by the presence of barriers at multiple layers of society, according to the socio-ecological model: the individual, interpersonal, organisational, and community levels, as well as public spaces.



This mixed-methods study used the BeSD tools for quantitative (22 questions) and qualitative data collection. A trained HI team surveyed 277 persons with disabilities, and another trained HI team interviewed 30 adults with disabilities and 30 health workers. Both parts of the study used disaggregated data analysis by age, gender, and disability. Disability status was self-reported using the short set of the Washington Group Questions (WGQs), considering that many respondents (86%) reported two or more disabilities. This study did not have a control group and does not compare the situation of persons with disabilities with the overall population's.



Findings from the quantitative analysis included, in brief:

1. Thinking and Feeling
   • The study found a statistically significant association between older age and a negative perception of the importance of COVID-19 vaccination.
   • The results showed that the perception of the importance of the vaccines was lower among women but not statistically associated with the respondents' gender.
   • There was a statistically significant association between the perception of the importance of COVID-19 vaccines and hearing or self-care disabilities.
2. Motivation
   • The results demonstrated that as persons advanced in age, their motivation to receive a COVID-19 vaccine decreased.
   • There was a statistically significant association between the motivation to get vaccinated and gender.
   • There was no statistically significant association between the motivation to get vaccinated and disability type.
3. Social Processes
   • Younger persons were more likely to think that close family and friends wanted them to get vaccinated against COVID-19.
   • According to the data and Pearson's chi-square test, gender was not associated with this perception.
   • There was a statistically significant association between this perception of family norms and visual disability, but not other disability types.
4. Practical Issues
   • Information
     • Younger persons were more likely to know where to go to get vaccinated against COVID-19.
     • Gender was not associated with whether respondents knew where they would need to go to get a vaccine by themselves.
     • Respondents with a visual disability were more likely not to know where to go.
   • Affordability
     • The perceived costs of health care and of transportation to the health centres did not appear to be a barrier associated with age.
     • Similarly, they did not emerge as a major gender-related issue.
     • Difficulties affording to reach or access a COVID-19 vaccine were associated with mobility and cognitive disabilities.

In terms of qualitative findings, selected highlights include:

• some participants reported still not having information about COVID-19 vaccination. Persons with disabilities reported feeling particularly at risk of contracting COVID-19 yet also facing restricted access to information as well as practical barriers to using health services. One of the main barriers was related to the costs of transportation to the vaccination sites without further assistance.
• Negative rumours still play a role, especially those about a supposed risk of infertility for people who get vaccinated against COVID-19. Persons with disabilities also voiced additional concerns about risking more potential side effects than others.
• While routine child immunisation is understood and accepted, the same behaviour in favour of vaccination does not apply to COVID-19. Vaccine-related beliefs seem to be tied to previous experiences with health services - often, for persons with disabilities, a lack of care or a low quality of care and of interactions with health staff. The health workers interviewed confirmed persons with disabilities' scarce attendance at health centres and reported needing inclusive health training.
• Religious leaders in the communities are actively promoting COVID-19 vaccination, probably thanks to the health programmes and information provided in the first two years of the pandemic.

The following recommendations emerged from the analysis of the quantitative and qualitative data -thus, from the voices of persons with disabilities sharing their unique experiences accessing health care in a fragile context - as well as from the reflections of the HI team involved in the study and engaged for the right to health.



Recommendations for immunisation campaigns that leave no one behind

• Vaccination should be available as closely as possible to vulnerable areas and communities (for instance, at the primary health care level in accordance with the Alma-Ata Declaration).
• Vertical immunisation programmes for specific diseases like COVID-19 should be integrated into the overall offer of basic health services. Persons with disabilities, especially those coming from rural areas, have had scarce access to health information and services so far. Therefore, HI suggests coupling vaccination with general medical services, with the double aim of delivering vaccination and increasing the early detection of any other health issue for those persons who have never or hardly ever met a nurse or a doctor.
• Applying the BeSD tools among specific vulnerable populations is a useful strategy for identifying the key barriers at play in a given context. The outputs of the BeSD inquiry should therefore be used to design a realistic theory of change for RCCE plans and activities. Considering how fundamental this inquiry phase is to making RCCE adaptive and effective, as demonstrated by this study, HI calls for health programme donors to allocate sufficient time and funds to applied research before scaling up prevention actions.

Recommendations for a disability-inclusive use of the BeSD tools

• The WGQ should be integrated into the socio-demographic data in order to allow disaggregated data analysis by age, gender, and disability. In this way, it is possible to gain a deeper understanding of the collected data, revealing hidden inequities (barriers are neither the same for everyone nor experienced in the same way).
• A major driver of promoting an inclusive use of the BeSD tools is giving data collectors proper training, both for the quantitative and qualitative parts. This training should explore the staff's attitudes toward disabilities, explain the DCP, offer practical tips for communicating with persons with diverse and/or multiple disabilities, and highlight what meaningful participation entails in practice. Involving organisations of persons with disabilities (OPDs) in this training and in other phases of the BeSD framework presents great added value.
• Some persons with disabilities may need reasonable accommodation when involved in data collection. Once these needs are identified, measures should be planned in advance in terms of resources like visual supports, sign language translators, or increased time allocated by the team to active listening.

Recommendations for disability-inclusive health in health systems

• A single programme or tool can be inclusive if the whole health system is growing increasingly inclusive. The first step is promoting capacity-building on inclusive health and health equity for the health workforce. Moreover, inclusive health system better serves the general population as well.
• As mentioned above regarding the BeSD tools, disaggregated health data by age, gender, and disability are the key to decoding inequities. To this date, there are no systematic data about the impacts of COVID-19 and about COVID-19 vaccination among persons with disabilities (i.e., 1.3 billion people worldwide, thus 16% of the world population).
• Considering the Health in All Policies (HiAP) approach, an effective strategy includes working on the SDHs and social inclusion, which would strengthen social protection and informal support networks to help persons with disabilities address and overcome barriers along the pathways to health care.

In conclusion, HI's experience "confirmed the usefulness of the BeSD manual, which offers a clear framework, a logical methodology, and practical tools to guide the implementation of inquiries and assessments....Even now, over three years after the declaration of the pandemic, the most vulnerable populations in fragile settings are still a blind spot of the global efforts against SARS-CoV-2. Therefore, addressing issues like vaccination, the infodemic, and access to health information and services for all are crucial steps, both in terms of Health Equity and of preparedness to the next outbreak."