The search for social safety and comfort in families raising children with complex chronic conditions.
Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and comfort in social situations. Major categories comprising this theme included the need to anticipate and plan for the child's care; overcoming environmental, child-related, and attitudinal barriers; and finding social activities that were comfortable for all members of the family. When this search was successful, families could relax, and all members could participate in a variety of social encounters and activities; but when safety and comfort could not be achieved, families were likely to limit social activities or split the family so that the child who was MF/DD could be cared for while other family members participated in social events.