Families and children's chronic conditions: knowledge development and methodological considerations

The complexity of studying families has been a deterrent in the development of knowledge about families as the unit of care. When chronicity in childhood is combined with family study, research and theory development is particularly challenging. Although publication in the field of chronic illness in childhood has been quite prolific, there are few comprehensive, recognizably organized ways to think about providing care for the family as a whole. This is profoundly important as increasing responsibility of day-to-day care for children with long-term health conditions shifts to the family and to community-based care. This paper presents a synthesis of what is known about families in health care when one member is a child with a long-term health concern, identifies gaps in knowledge that potentially compromise optimal health care delivery, and suggests methods for expanding and deepening our understanding so that we might improve the quality of our efforts to assist families that live with a child with a chronic condition.