Caring for children with Down syndrome and their families.

The overall purpose of this article is to provide pediatric nurses with the knowledge and motivation necessary to implement best clinical practice with children who have Down syndrome and their families. First, changes that have occurred in the care of children with Down syndrome are briefly reviewed. Next, recommendations concerning best clinical practice for children with Down syndrome are presented. Finally, implications for pediatric nurses practicing in an expanded role are discussed.

Physician-family partnerships: the adaptive practice model.

In the traditional medical model, the physician, acting in the best interests of the patient, assumes full responsibility for delivering information, making decisions about treatment, and providing care. This model is not suitable for chronic care or preventive health maintenance. Recent alternatives to this model include participatory decision-making and family-centered care, clinical approaches in which the patient and family share the responsibility for decision-making with the physician. Research has demonstrated that patients and families vary in their willingness to make decisions about care. The Adaptive Practice model describes how compassionate and effective medical practice ranges from traditional hierarchical relationships to full patient or family control, depending on the situation. Four different clinical approaches--directing, teaching, collaborating, and supporting--result from variations in the direction of leadership and in the degree of interaction in the situation. Each approach is suitable for specific situations. For example, directing is appropriate in emergencies or crises. Supporting is appropriate when families are both knowledgeable and motivated to make decisions that affect their quality of life. Sensitive physicians assess the situation, negotiate an approach suitable to the family's and patient's needs at the time, and adjust their approach as the partnership evolves. The Adaptive Practice model provides a structure for analyzing clinical situations, choosing clinical approaches, and understanding problems in physician-family relationships when they arise.

Family-oriented pediatric care. Taking the next step.

Pediatricians often have more information at their disposal than they use. They are frequently aware of some of the family issues that can contribute to their patient's health. This article has presented a framework for moving beyond a solely biomedical model to one that uses this information to create a more comprehensive picture of the family--one that offers the potential to unlock impasses and increase both physician and family satisfaction.