Strengthening the inclusion of persons with disabilities in the health system in Brazi
Lead Research Organisation:
London Sch of Hygiene and Trop Medicine
Department Name: Infectious and Tropical Diseases
Abstract
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.
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.
Technical Summary
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.
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.
Planned Impact
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.
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.
Publications
Clemente K
(2022)
Barreiras ao acesso das pessoas com deficiência aos serviços de saúde: uma revisão de escopo
in Revista de Saúde Pública
Da Cunha MAO
(2022)
Health Care for People with Disabilities in the Unified Health System in Brazil: A Scoping Review.
in International journal of environmental research and public health
Danemayer J
(2021)
Measuring assistive technology supply and demand: A scoping review.
in Assistive technology : the official journal of RESNA
Kuper H
(2018)
Debate: can we achieve universal health coverage without a focus on disability?
in BMC Health Services Research
Lyra TM
(2022)
The National Health Policy for people with disabilities in Brazil: an analysis of the content, context and the performance of social actors.
in Health policy and planning
Pinto A
(2021)
A National Accessibility Audit of Primary Health Care Facilities in Brazil-Are People with Disabilities Being Denied Their Right to Health?
in International journal of environmental research and public health
Pinto M
(2021)
Estimating the cost of congenital Zika syndrome to families and healthcare providers in Rio de Janeiro and Pernambuco, Brazil: results of a case-control study
in Wellcome Open Research
Reichenberger V
(2020)
The challenge of including people with disabilities in the strategy to address the COVID-19 pandemic in Brazil.
in Epidemiologia e servicos de saude : revista do Sistema Unico de Saude do Brasil
Smythe T
(2021)
The feasibility of establishing parent support groups for children with congenital Zika syndrome and their families: a mixed-methods study
in Wellcome Open Research
| Description | The work so far in this grant has highlighted three important issues for access to healthcare for people with disabilities in Brazil. The first, is that the policies supporting inclusion of people with disabilities in the healthcare services in Brazil are generally very good. However, there are issues with the lack of implementation of the policies, not least because there is little monitoring of implementation or penalties when there are failures in implementation. The recent change of government in Brazil, and the austerity measures being taken, will likely further damage the chances of full implementation of these policies. Second, our analysis of the national situation in Brazil shows that there are inadequacies in the provision of rehabilitation services, so that need is far greater than provision. Furthermore, there are geographical gaps, so that the poorest regions in Brazil have the worst services. Third, policies in Brazil advocate for the full accessibility of healthcare services. However, a national audit of primary healthcare facilities analysed by us shows that accessibility is poor on the whole. There are particular gaps in terms of provisions for people with sensory impairments, and availability of staff with expertise in disability. The lessons learnt so far, therefore suggest that although the policies for inclusive healthcare for people with disabilities in Brazil are good, the implementation is often poor. These issues are also noted during the COVID pandemic. We have uncovered that there is a great lack of quantitative data on disability in Brazil, and therefore we have prepared additional outputs from the study: 1) a national assessment of accessibility of healthcare facilities, 2) an analysis of a national survey to compare health outcomes among people with and without disabilities. Furthermore, we are interested in how the health system can be improved to be more inclusive. Consequently, we are undertaking additional analyses considering whether pay for performance appears to have contributed towards improved accessibility of services and availability of disability-specific services at the primary care level. |
| Exploitation Route | We will be presenting our key findings to policy makers and programme implementers in Brazil, and will together make recommendations for how they can be moved into concrete action. We have already made recommendations on how people with disabilities should be included in the COVID-19 response. |
| Sectors | Healthcare |
| Description | Hannah Kuper has co-authored the Missing Billion Report, which explores access to health services for 1 billion people with disabilities. https://www.lshtm.ac.uk/research/centres/international-centre-evidence-disability/missing-billion This report uses learning from the current grant, and is aimed at policy makers and programme implementers, to encourage them to make healthcare services more inclusive of people with disabilities. This report has been widely circulated, and presented to key policy makers at the World Bank, PEPFAR, USAID, FCDO, and GIZ. There is indicative evidence that this is starting to change practice and plans. Furthermore, we have developed a tool to assess whether the health system is inclusive of people with disabilities. This tool is being pilot-tested in the current study in Brazil, but also in the Maldives and in Zimbabwe (for which we have obtained additional funding). We envisage that this tool will be used widely to help guide efforts to promote disability-inclusion in the health system. |
| First Year Of Impact | 2019 |
| Sector | Healthcare |
| Impact Types | Policy & public services |
| Description | Policy brief on disability-inclusive health systems |
| Geographic Reach | Europe |
| Policy Influence Type | Contribution to new or Improved professional practice |
| Impact | The policy brief describes how health systems in Europe should be adapted to be inclusive of persons with disabilities. |
| URL | https://www.euro.who.int/en/health-topics/Life-stages/disability-and-rehabilitation/publications/pol... |
| Description | Building back better: Disability-inclusive health as a legacy of the COVID-19 pandemic in Zimbabwe |
| Amount | £100,000 (GBP) |
| Funding ID | AH/V01353X/1 |
| Organisation | Arts & Humanities Research Council (AHRC) |
| Department | AHRC Research Centre for Musical Performance as Creative Practice |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 02/2021 |
| End | 09/2021 |
| Description | Improving access to healthcare for disabled people in Uganda |
| Amount | £2,000,000 (GBP) |
| Funding ID | NIHR301621 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2021 |
| End | 12/2026 |
| Title | Diagnostic toolkit for assessing disability inclusion in the health system |
| Description | The Missing Billion diagnostic tool for assessing disability inclusion in the health system was developed prior to this study. It was pilot tested within the Zimbabwe project, which allowed important information to be obtained but also for the tool to be finalised. We have now received additional funding to finish the tool and develop a manual to support its widespread dissemination and use. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2022 |
| Provided To Others? | No |
| Impact | The diagnostic toolkit is now being finished and will be available for use from end 2022. |
| Title | Visual methods in qualitative research |
| Description | Veronika Reichenberger is developing new video-based methods for collecting qualitative data to better understand access to healthcare for people with disabilities. These methods have been pilot-tested in Colombia, and will be used in Brazil in the coming months. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2019 |
| Provided To Others? | No |
| Impact | Developing visual based methods for qualitative research is an important advance in participatory research methods, particularly as they relate to people with disabilities. |
| Description | Disability-inclusive health systems |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation to DFID on disability-inclusive health. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Participatory video with caregivers of children with Congenital Zika Syndrome |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | A presentation on participatory video methods, developed for this project. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.lshtm.ac.uk/newsevents/events/participatory-video-caregivers-children-congenital-zika-sy... |
| Description | Report written for General Readership on Access to Healthcare for People with disabilities. |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Hannah Kuper co-authored the report "The Missing Billion" which outlined issues of access to healthcare for people with disabilities. This report has been downloaded more than XX times. Furthermore, it has been featured in the Lancet and the American Journal of Public Health. It has been used by NGOs and other agencies to support advocacy and programmatic efforts to improve healthcare for people with disabilities. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.lshtm.ac.uk/research/centres/international-centre-evidence-disability/missing-billion |
| Description | presentation on access to healthcare for people with disabilities at GIZ |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A presentation on access to healthcare for people with disabilities was given by Hannah Kuper to 30 employees at GIZ, working on health or disability related aspects of the German Development Portfolio. As a result, they are evaluating the inclusion of people with disabilities in their healthcare portfolio, and UHC activities. |
| Year(s) Of Engagement Activity | 2019 |
| Description | presentation on access to healthcare for people with disabilities at PEPFAR |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A presentation was made to senior leaders in PEPFAR by Hannah Kuper on the inclusion of disability within HIV programming that they fund. As a consequence, they are considering allocating funding towards promoting inclusive-HIV programming and have requested further technical support to achieve this ambition. |
| Year(s) Of Engagement Activity | 2020 |
| Description | presentation on access to healthcare for people with disabilities at World Bank |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A presentation on access to healthcare for people with disabilities was given at the World Bank by Hannah Kuper, including participation of the head of health at the World Bank. As a consequence, the World Bank is re-evaluating its health investments to ensure that they are disability inclusive, and are considering making public commitments on the provision of access to healthcare for people with disabilities. |
| Year(s) Of Engagement Activity | 2020 |