The team began by constructing and validating a model of the four phases families typically pass through in learning to cope with the disease. In the first phase -- symptom avoidance -- families notice recurrent wheezing or coughing in the child but don't attribute them to an ongoing condition. In phase two -- asthma acceptance -- they recognize that the child has a chronic disease and that some regular treatment is needed, but still react primarily to crises. Advancing to phase three -- compliance -- families believe problems can be prevented by medication and try to adhere to a prescribed regimen but have difficulty coping with changing symptoms. Finally, in phase four -- self-regulation -- families are aware that disease manifestations vary, recognize asthma triggers, detect early warning signs, and adjust medications and dosages to the needs of the moment.
The investigators then tested the potential benefit of intervention by a family coordinator, someone trained to help asthma families develop self-regulatory skills. They recruited 100 families, primarily Latino (70 percent) and African-American (24 percent), from neighborhoods near Columbia-Presbyterian Medical Center. All the families received regular medical care at clinics associated with CPMC. Half of them also were assigned a family coordinator who identified the phase in which the families started and guided them to the next phases, teaching them to adopt new health beliefs and take a preventive approach to asthma.
Among other things, the family coordinator conducted family workshops, trained family members to keep and interpret asthma diaries, conducted a home environment assessment, and suggested strategies for reducing asthma triggers. Compared with control families, the families with family coordinators scored better in all categories tested. Their knowledge of asthma increased, as did their compliance with prescribed therapy. They were better at implementing preventive measures and managing asthma and achieved a higher phase of self-regulation. They were able to impose fewer restrictions on their child's activities and made less use of emergency room services.
"Most people have assumed that educational training is sufficient for a family to take over management of a child's disease," says Dr. Zimmerman. "What became apparent to us was that families often have beliefs and coping styles that are antithetical to developing such management skills. The self-regulatory phase model is critical in assessing a family's starting point and enables the family coordinator to play a creative role in helping them cope with their child's asthma." Adds Dr. Evans, "This project shows than an intensive self-regulatory intervention with families over about two months has a significant impact on their ability to manage asthma and improves outcomes."