Marketa Kralovcova promotes greater parental and patient involvement in the treatment of chronically and terminally ill children in the Czech Republic, manifested in the country's first children's hospice.
The New Idea
Marketa has identified enormous gaps in respect regarding patients' rights throughout the Czech healthcare system and is working with medical professionals and patients' families to improve the welfare of seriously ill children throughout the country. Marketa and her staff advance protection of patients' rights by enabling parents to remain with their children in hospitals. She works directly with medical professionals to improve techniques for ill children's well-being and foster understanding of the social elements of their relationships with patients. Parents and loved ones are integrated into therapy for life-threatening illnesses. Marketa also links wellness to the environment in which sick children are treated and has organized summer camps and the country's first youth hospice, in which young people can receive quality treatment in a fun, comfortable place. Moreover, she helps patients' families overcome the lack of information and decision-making power in the care of their ill children by coordinating the first national evaluation of healthcare facilities for children, which is published as a report and on the Internet.
Hospitalization due to serious illness is incredibly traumatic for children. Surveys of hospitalized children reveal that they often view their time in the hospital as a form of imprisonment, a sentiment that exacerbates problems related to their treatment. In the Czech Republic, hospitals that focus on children or provide treatment for seriously ill young people are few. Increasing problems related to transition and the lack of state support for these institutions create self-protective mechanisms against reform. The myth that the presence of parents disturbs child patients prevails in the Czech Republic today, despite studies that suggest the opposite. Emotional demonstrations like crying or calling out for parents' assistance is widely viewed as detrimental, although new research shows that it is part of sick children's therapeutic process. When children repress their feelings, they stop eating and communicating and their health frequently worsens. Many times children blame themselves for their illnesses and view medical treatment as a punishment and not as an aid. They cannot understand why loving parents would leave them alone unless they had done something terrible. Moreover, treatments and medicines are often prescribed without the consent of, or consultation with the children or their families. The result is that patients find doctors unapproachable and have less and less voice in their own healthcare.
During her first nine-month internship at the oncological ward at Motol Hospital, Marketa familiarized herself with the psychology of the medical personnel and their hierarchical views within the institution. She developed the Charter of Hospitalized Children's Rights to address the concerns of sick youngsters' parents, who she classifies as either sad, passive parents who could not articulate their needs and were unable to confront doctors with their questions or dynamic, angry parents who wanted answers and sought more effective ways to address the treatment of their children.In 1991, Marketa established the Klicek Foundation to provide help for children suffering from serious illnesses and for their parents and families. Marketa secured several rooms at the Motol Hospital where parents could stay and discuss common interests while their children were being treated. She trained volunteers to play with the children, thus supplementing the medical treatment provided by physicians. In 2001, Klicek recruited five hundred new volunteers and partnered with the Helen House in Oxford, England to open the Czech Republic's first youth-oriented hospice just outside of Prague. The main hospice building serves as an educational center where patients and their families can go during breaks in treatment. The hospice accommodates extended stays for eight families. In just two years, the center's activities have facilitated interface between hundreds of ill and healthy children who would otherwise never meet or have an opportunity to learn from each other.
As an extension of her original research in preparation for the Klicek hospice, Marketa now publishes a thorough catalog of children's hospital wards in the Czech Republic, which includes an index of facilities that provide accommodation for parents. The publication, which is also available on the Internet, serves the two important purposes of providing families with information and choices regarding their children's medical care and encouraging existing medical facilities to improve their services in order to maintain or advance their reputations among a more informed and selective public.
Marketa is from the small town of Zruc nad Szavou. When she was three-years-old, her mother gave birth to twin boys, both of whom died in the hospital. Although Marketa was little, she believes that this family tragedy directed her life's work. Her mother did not become bitter after the experience of loss, but remained open and loving, providing a clear template for the necessary role of family in the healing process. Marketa earned a degree in aesthetics and art history from Charles University in Prague. Following the democratic reforms in the early 1990s, she organized a photography exhibition with accompanying texts describing the conditions of long-term hospital care for children. As editor of Pritomost Magazine, she learned about hospital practices and traveled throughout the country. She developed a model for hospital reform and the treatment of terminally and chronically ill children. Despite its initial successes, Marketa's strategy fundamentally changed with the death of a young boy, Willic, with whom she was very close. Before Willic's bone marrow transplant operation, he expressed heightened anxiety about the operation but no one listened to him. He died on the operating table because he had contracted undiagnosed pneumonia at the time of the operation. Willic's experience showed Marketa that children often know best about their well-being and treatment. Carrying Willic's belongings back to her home with his mother transformed her thinking. She said it was no longer enough to play with children in the hospital and improve their immediate environment. She had to prevent these mistakes from happening to other children in Prague and throughout the Czech Republic.