Strengthening the inclusion of persons with disabilities in the health system in Brazi

Disability is extremely common - the latest Brazil census showed that almost one on four people (24%) had some type of disability, and 6.7% have "severe" disabilities. The prevalence of disability is expected to rise further as the population ages, health behaviours worsen and disabling chronic conditions prevail.

People with disabilities are a vulnerable group, who are more likely to be poor and on average have higher healthcare needs. Although Brazil has an extensive and comprehensive health system, and Brazilian policy and law strongly supports the inclusion of people with disabilities in this healthcare system, the Zika epidemic revealed gaps in access. This restriction in access to healthcare is an infringement of the rights of people with disabilities, will lead to poorer health and more poverty and exclusion, and will make it difficult for Universal Health Coverage to be achieved in Brazil. Evidence on what we need to promote inclusion is still lacking, both in Brazil and internationally.

We propose to conduct a comprehensive and multi-layered assessment of the health system in Brazil to investigate these issues and identify scalable solutions.

At the national level, we will conduct a policy analysis on the provision of healthcare for people with disabilities. This will include reviewing relevant policies and interviewing key stakeholders. Also at the national level, we will conduct a rehabilitation health system assessment to establish its current state and identify gaps through desk based assessment and interviews.

We will conduct in-depth investigations in three States, selected to cover diverse areas in Brazil: Northeast (Pernambuco), Central-west (District Federal) and Southeast (Sao Paulo). Within each state we will conduct a network analysis to map key stakeholders in the provision of healthcare for people with disabilities. We will use a case-study approach to collect facility-level information, selecting facilities from rural and urban areas, and different levels of health care provision (primary, secondary and hospital). We will collect data through observation, in-depth interviews with health professionals of different cadres, and interviews and focus group discussions with people with disabilities and their carers. The researchers will analyse the data to answer the key study questions, triangulating information across different sources.

A participatory stakeholder workshop will be held to formulate policy and programme recommendations to improve inclusion of people with disabilities in the healthcare system, which includes strengthening the provision of rehabilitation. These recommendations may include health system changes (e.g. restructuring curricula, improving accessibility) as well as proposals for how indicators can be collected to monitor the inclusion of people with disabilities in the health system. People with disabilities will have a central role in designing these interventions.

This proposal draws upon three outstanding research groups in Brazil - with expertise in health systems (Pernambuco, Brasilia) and disability (Sao Paulo) - in partnership with disability and health systems researchers at LSHTM. It builds upon existing relationships, as joint grants are already in place between LSHTM and Pernambuco and Brasilia to investigate the healthcare needs of children with disabilities. These research groups are closely linked to key stakeholders in health policy and planning, both within Brazil (e.g. Ministry of Health) as well as internationally (e.g. WHO).

This proposal can help to substantially improve health service delivery for people with disabilities in Brazil, with important lessons learnt for other vulnerable groups in Brazil, as well as for people with disabilities worldwide. Strengthening the health system for these vulnerable groups will improve the service delivery for all, and therefore reap economic and social benefits across Brazil.

A multi-disciplinary health system analysis will be undertaken to assess the inclusion of people with disabilities in the health system in Brazil and inform how this can be improved. This research will take a person-centred approach throughout.

At the national level, we will conduct a policy analysis on the provision of healthcare for people with disabilities. We will review relevant national strategic plans and policy documents and interview key informants. We will also conduct a rehabilitation health system assessment using the WHO Tool.

We will undertake detailed investigation in three States: Pernambuco, District Federal and Sao Paulo. In each, we will conduct a network analysis to map key stakeholders in the rehabilitation system and investigate what relevant information is available through the Health Management Information Systems Data.

We will use a case-study approach to develop a comprehensive picture of operational reality. In each state, we will purposively select 2-3 rural and urban Primary Health Care facilities, one rural and one urban secondary level facilities, and one hospital where rehabilitation services are offered. We will use mixed methods to collect a range of data, including: an accessibility audit of the facilities, structured-observations of patients' visits, and in-depth interviews with health professionals (selected from different cadres). We will conduct interviews and focus-group discussions with people with disabilities and carers, selecting people with a range of impairment types, men and women, and different ages.

Qualitative data collected will be thematically analysed. Triangulation of data will be conducted to synthesise and integrate data from different sources in order to address research objectives.

Last, we will use participatory methods to formulate policy and programme recommendations, working with key stakeholders. People with disabilities will play a central role in formulating these recommendations.

The policy framework in Brazil and internationally supports the inclusion of people with disabilities in general healthcare and their provision with rehabilitation. However, there is a lack of translation of these policies into practice with consequent high unmet healthcare needs for people with disabilities, and a weak evidence base on what is needed to improve inclusive health. The information generated by our study will highlight the importance of this topic to policy makers and programme implementers, and help design and implement evidence based strategies.

Strategies will be developed in partnership with people with disabilities and other key stakeholders. They will focus on specific issues, for instance: physical inaccessibility can be targeted through long-term planning for capital investment and organisation of facilities; inappropriately skilled staff by reviewing basic medical and nursing training curricula to ensure that appropriate skills are included in basic training; poorly motivated staff can be addressed by designing an appropriate performance review system and providing greater clarity of roles and expectations; and weak planning and management can be tackled through the development of dedicated manager cadres to give oversight of disability inclusion. Strategies will be aimed at different groups, including: healthcare professionals, healthcare planners and people with disabilities. These recommended policy advances and programme/delivery changes will target the Brazilian contexts, but will also generate relevant information for other settings.

People with disabilities and their families are the ultimate beneficiaries of the research and they will reap benefits through these healthcare system changes, which will promote the provision of health and rehabilitation services to cater to their needs. As a consequence, people with disabilities may experience better health and quality of life, and potentially improved socio-economic conditions for themselves and/or their carer (e.g. through return to work). Given that disability is common, these improvements will result in greater health and well-being and reductions in poverty for the Brazilian population as a whole.

Other groups will also gain from these health system changes. Many people who are not disabled can benefit from rehabilitation in order to preserve or improve functioning (e.g. people who have experienced accidents). Strengthening the rehabilitation service will therefore protect health more broadly through prevention or early treatment of impairments or their more efficient treatment, and lead to cost-savings. Improving the health system to promote the inclusion of people with disabilities may require changes such as improving the communication skills of health professionals and the accessibility of healthcare facilities. These changes will also benefit other vulnerable groups, such as people who are older or from minority groups, and so improve healthcare provision for a wide population.

The research findings will provide information for clinicians and healthcare managers about how they can better meet the needs of people with disabilities. This will have a positive impact by increasing their confidence, skills and efficiency, as well as the quality of services that they will provide.

Academics interested in health systems and disability will benefit from our research findings through the generation of new knowledge and scientific advancement, and the development of new methodological approaches. The project will result in capacity building of research staff through development of the skills of staff employed to collect and analyse the data.

Wider society can benefit from our findings through awareness raising on the issues of health-care access among people with disabilities and to increase understanding and compassion. There may also be general improvement in the public understanding of science.