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    Transforming Health Care
for Young Cancer Patients


Ela Pomaska is changing the definition of cancer care for Polish children. When Pomaska's son was diagnosed with non-Hodgkin's lymphoma in 1983, her life was transformed by the suffering she witnessed at a hospital in Warsaw Poland where he and other young cancer victims were treated.

Few resources were available at the time, especially in Poland, to address the myriad psychological and social needs of cancer patients. Rather than providing a nurturing environment for sick children, oncology centers were cold, barren institutions that offered few support programs to help children to cope with the traumas of treatment.

Pomaska's experience of her son's diagnosis, treatment, and recovery prompted her to launch the Children's Cancer Relief Foundation – the first organization of its kind in Poland. In dramatic contrast to the reluctance of many Poles to deal with the realities of the disease, the foundation addresses the range of non-medical needs of children with cancer, and the parents and other family members who support them, by providing a variety of integrated services.

Years of environmental degradation and pollution from many sources, including a series of Chernobyl-style nuclear power plants, have led to abnormally high rates of cancer among the children living in the heavily industrialized regions of Poland. A government study conducted in the Katowice industrial region of Poland found that doctors are treating over 1,000 new cases of cancer in children each year. This number is three to four times the national average. The poor quality of statistical measurement in Poland leads many to conclude that the number of new cases of cancer is actually higher than the government estimates.


Traumatic Hospital Experiences

Polish hospitals are large bureaucratic institutions that typically place little emphasis on the individual patient's emotional well-being. The medical community provides doctors with little or no training in patient psychology and as a result patients are often treated as objects instead of people.

This pattern is particularly unsettling when the patient is a child. The medical establishment supplies little support beyond technical treatment for children with cancer and their families. Thus they often must go through this traumatic experience alone and confused. Hospitals provide few places for children to rest immediately after receiving chemical or radiation therapy, and they often find themselves in cold, uncomfortable train stations waiting to go home.

Typically they do not receive counseling on how to deal with their illness, let alone help in learning how to rejoin society after they are cured. In short, the experience of the child is dehumanizing and traumatic and often leaves long-term psychological scars.

In addition, though cancer is common and an increasing health problem in Poland, it is poorly understood by the general public; walls arise between people who have cancer and everyone else, similar to the barriers faced by people with disabilities. Social attitudes are riddled with fear and denial. People don't even want to ride in an elevator alongside a child with cancer!

Pomaska brings an invigorating approach to children who are typically sheltered from the outside world because of their delicate physical condition. This includes innovative education, psychological support and accommodation. Part of cancer care, from Pomaska's perspective, is to help children grow into their lives in a more normal way, resisting the isolation that cancer imposes in many countries, while reinforcing their medical care.


After Sadness, Joy

Pomaska helps the children reenter society once they have been cured or go into remission. Her program provides a comprehensive after-care system of workshops, weekend camps and counseling to ease the transition back to a more normal life.

The impact of Pomaska's work extends well beyond the walls of her Warsaw center. Members of the medical establishment often join Pomaska in her efforts to educate the public about children and cancer.

During the International Week of Combating Cancer in June 1996, Pomaska organized an open-air festival called "After Rain There Comes Sun, After Sadness There Comes Joy;" the festival illustrated the problems that occur for children with cancer. Doctors from all of Warsaw's cancer wards attended. They maintained shifts to answer people's questions. For entertainment, Pomaska held a lottery; she also wrote songs, that children from her center sang.

At the heart of the Foundation's success is a demonstrated commitment to work with, rather than against, healthcare professionals in traditional hospital settings. Through this commitment, Pomaska and her staff have nurtured a collaboration focused on overall health – physical and psychological – of children and their parents, working with families at all stages of their struggle with the disease.

Her program includes training for medical staff in all the Polish wards for children with cancer. As a result of this training, psychologists now work in those wards, and the foundation's psychologist is the national supervisor for all those psychologists.

"We can see effects from our work already," she says, noting that doctors are increasingly open to considering more integrated approaches to cancer treatment. "We respect doctors and the knowledge they bring to treatment. We are trying to take only part of the burden of dealing with cancer."

 


Contact:

Ela Pomaska
ul. Spacerowa 26
Michalin k/Otwocka
Poland 05-410
Tel. 48 22 789-2598


Amy Clark, Ashoka's Central Europe Desk Officer, contributed to this article

   
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