Vera Gaensly Cordeiro is a pediatrician who could not stand to see terribly or terminally ill children obtain treatment in her hospital only to be released to such poverty that they could not recover or have hope of comfort.
A nova ideia
As a doctor in one of Rio de Janeiro's largest government hospitals, Vera experienced the misery-illness-hospital-misery-death cycle that condemns so many poor children time after time. She also learned how limited the human and material resources available to break this cycle were. She found that small and subtle changes and that providing critical support to these children's families could offer an escape from this cycle of misery. Children were returning to the hospital because they lacked vital necessities: shelter, post operative treatment, nutritious food. By making it possible for them to obtain these necessities, they could escape the cycle of return and decline. In October 1991, Vera and a volunteer coalition of professionals including doctors and nurses, psychologists, lawyers, and homemakers set up Associação Saúde Criança. It seeks to provide patient families with the support they need in order to create the best environment for discharged children, who are either convalescing from an acute illness or have a terminal illness but are receiving outpatient care.
Associação Saúde Criança is a nonprofit, volunteer, membership network of committed individuals who devise alternative systems of aftercare, provide free professional and other services, and lead fundraising efforts.
The centralized medical system of Brazil has, over the years, become renowned for its inefficiency. Nevertheless, the poor have no choice but to depend on it. Hospital ambulatory services always have long lines of people waiting, and patients commonly wait for months for a vacancy in order to receive in-hospital treatment. Terrible living conditions, especially in the cities' sprawling squatter slums, greatly aggravate this supply-demand imbalance.
The problem worsens. How can a hospital that cannot service new patients give follow-up care to those already discharged? It cannot, so sick children and their impoverished parents are on their own to secure food, shelter, and follow-up medical care. Of course many families cannot cope. The child relapses, and the parents are forced once again to return to the hospital, the trek often weakening the patient and leaving the parents in a state of despair and self-blame.
Associação Saúde Criança's work methodology begins in the hospital, working closely with the staff and families, identifying which patients will be Associação Saúde Criança clients. Each potential case is reviewed in depth to see what needs must be met. A close relationship between the Associação Saúde Criança volunteers, hospital professionals, and patient families develops from this process.Associação Saúde Criança does not simply provide families with medicine or nutritional supplements, though lobbying by Dr. Cordeiro and others has created a network of contacts with pharmaceutical laboratories and food companies that make this service possible. Through its close relationship with the families, Associação Saúde Criança identifies the most critical problem the family has, and through a process of mutual understanding and exchange of services between the families and Associação Saúde Criança, the problem is attacked. For example, many families need basic food assistance, but what if a drug or alcohol problem has developed in a father who cannot provide for his sick child? Associação Saúde Criança and the family decide that both food and counseling are needed. This assistance is not just given out. The family volunteers time staffing an office or delivering supplies. They are now doing something for their child. The parents are once again responsible for the well-being of the young patient; without their work their situation is awful, but with it, there is hope. The psychological benefits are obvious. Associação Saúde Criança becomes a channel through which families are made aware of how they can help themselves overcome their difficulties, moving toward improvement of the family environment that ultimately determines the outcome of a child's physical health and life expectancy.Associação Saúde Criança empowers a family to deal with a child's serious illness by providing essential services: transportation vouchers and medication, psychotherapeutical support, dissemination of AIDS information, access to chemotherapy, help with parental drug and alcohol abuse, referrals to self-help groups of different kinds, and organizing work schedules so that a parent may attend to the health care needs of the child. In exchange, the family provides volunteer services to the Associação Saúde Criança program as their lives and individual capacities permit. This is the key to the effectiveness of Associação Saúde Criança.As Vera works over the next several years to further develop and refine her approach, she will be doing so very much with an eye to producing a simple, economic model that will work for everyone and therefore spread easily (two residents at her hospital from other states are planning to create similar programs on their return home).
Vera, a mother of two, has seen both sides of life in Brazil. She has lived in the relative comfort of the middle class; but she works in the Hospital da Lagoa, the public hospital that services Rocinha, one of the largest slums in Latin America.
In her earlier work in the hospital she was always trying to find ways to bring true, full relief to her patients. Not satisfied with the status quo, she sought out different therapies and approaches to patient care. She became involved with psychosomatic medicine, creating the first psychosomatic group in Rio de Janeiro, and founding the psychosomatic sector at the municipal hospital in 1979.
Vera knew through her experience that a change in the way medical staff inside the hospital approached pathology and related to the patients was needed. She instituted a multidisciplinary approach to the treatment of coronary disease patients and terminal cancer patients. She started women's and adolescent discussion groups among long-interned patients. She incorporated unorthodox therapies, such as theater and art classes, into the care of chronic illnesses. She called in volunteers from outside the hospital to work with patients. As the hospital staff began to see the results produced by a psychosomatic approach to patient care, Vera began to think of how she could extend some of these changes beyond the hospital limits.
At the Hospital da Lagoa, she came in daily contact with the world of misery that many of her patients face. "This situation, over many years, created anguish and conflicts within myself," Vera says. She needed to find some way to resolve these conflicts.
"Working as a pediatrician, this internal conflict got worse and made me confront the drastic reality of sick children, who were miserable and helpless," she says. "In contrast to the support, health, and education that my children received, I realized that I couldn't live with those extreme realities without acting."