Families with medically fragile children: an exploratory study

Because of increased survival rates for children with critical illnesses and injuries coupled with early discharge programs, medically fragile children are increasingly likely to receive care in the home. The purpose of this exploratory study was to provide an initial description of the typical decisions and problems families experienced on a day-to-day basis, family coping strategies (F-COPES), and family resources (Family Strengths Scale). A convenience sample of 10 families, recruited from a pediatric rehabilitation hospital, participated in a one-hour, in-home interview. Respondents included the child's mother (n = 4), mother and father (n = 2), grandmother (n = 2), grand aunt and uncle (n = 1), and legal guardian (n = 1). Family members were likely to consult health care professionals for treatment-related issues but not for child care issues such as toileting. Coping strategies used most often included Mobilizing Family and Acquiring Social Support. Comments indicated a need for additional financial resources and alternative child care services.