MM: Tell me about the health system in Brazil.

Tânia: Brazil recognizes health care as a right to citizenship and makes it compulsory and free of charge for all Brazilians. With more than 209 million inhabitants, Brazil has one of the largest public health systems in the world, the Unified Health System (known as SUS). The responsibilities and management of SUS are shared by the federal government, states and municipalities. Civil society participates in the definition and execution of health policies and in social control through health councils.
 

MM: Tell us about the role of oncology social work in pediatric oncology.

Tânia: The Social Work or Social Service (SS) intervenes with the family and facilitates access to information about the disease, treatment, resources, education and family life. The service acts in partnership with other sectors, such as social services and legal services, to meet the needs and rights of our patients.

MM: Is there a professional association of social workers in the country and how often do you meet?

Tânia: The Regional Social Service Council guides, disciplines and supervises professional activities, and annually holds debates on social policies. National conferences—such as the National Congress of Social Work in Health, National Meeting of Researchers of Social Work, International Conference on Public Policies, and International and National Meeting of Social Policy—lead to reflection, knowledge production and the best practices.

MM: What are the main barriers for oncology patients?        

Tânia: The journey for patients with cancer in Brazil is difficult. Among the barriers are:

• The territorial dimension of the country and social inequalities, which make it difficult for the population to have access to adequate treatment.
• The late start of treatment in reference centers due to the repressed demand for care, although the law establishes a period of up to 60 days after diagnosis to start treatment. Children and adolescents need faster referrals. Health professionals’ poor knowledge of early signs and symptoms delays diagnosis and decreases the chances of cure. Nongovernmental initiatives, mainly sponsored by the Ronald McDonald Institute, have reached remote regions and help to reduce the time between the onset of symptoms and the start of treatment.
• Poverty and fragility of family ties hinder therapeutic adherence. Families residing far from treatment centers suffer great psychosocial impact, loss of work and income.
• The Child and Adolescent Statute recognizes the right of children and adolescents to be accompanied full time by a parent or guardian during hospitalization or outpatient treatment. However, current labor and social security legislation does not provide paid leave.

MM: How do you identify resources for your patients?

Tânia: We involve government agencies such as Guardianship Councils, Child Rights Councils, Public Prosecutor's Office, Juvenile Court and Youth to ensure the social rights of children and adolescents. When there are problems with parents’ employment, we contact the employer to raise awareness of the importance of treatment for the employee's child and seek to reduce labor disputes, since the law grants parents only two days a year to take their child to the doctor. To obtain social benefits and attend to their needs, we guide and refer families to the social work network.

MM: Can you share some of your best practices?

Tânia: In 1990, 28 percent of HINSG (Hospital Infantil Nossa Senhora da Glória) patients discontinued treatment for socioeconomic reasons. Parents, volunteers and health professionals founded the Associação Capixaba Contra o Câncer Infantil to support patients and reduce social disparities. As a social worker at HINSG, I participated in two programs: Support House, which houses patients who live far from the hospital, and Food Pantries, which provides food distribution and resources for transportation. An action by the State Ministry of Education provided education for children and adolescents while hospitalized and unable to attend regular school.

I thank AOSW for the invitation to share my experiences as a social worker, and for your interest to learn about practices outside the U.S.