Parents of children with chronic health problems: programs of nursing research and their relationship to developmental science

Abstract

This review identified nurse researchers and research teams that have current programs of research focused on parents and parenting of children with chronic health problems. Researchers were included if they had at least five publications since 1990, with at least three of these articles first-authored. These programs of research were critiqued from a developmental science perspective. Multiple methods were used for the search, including examination of previous review articles, hand search of journals, online computer searches, and review of the curriculum vitae of authors. Seven programs of research were identified. Two programs of research focused on childhood cancer--Ida M. Martinson et al. and Marsha H. Cohen. Three programs of research used a noncategorical approach encompassing a variety of childhood chronic conditions--Katherine A. Knafl and Janet A. Deatrick, Sharon O. Burke, and Ann Garwick. One program focused primarily on parents of children with Down syndrome and disabilities--Marsha Van Riper--and another on parents of infants with a variety of chronic health problems--Margaret S. Miles and Diane Holditch-Davis. Diverse theories and conceptual frameworks were used, and most had some focus on ecological systems that might affect parents and parenting. Many used a family perspective and included fathers. Still broader aspects of the family and community ecology and the health care were not generally included. Few examined the bidirectionality of the relationship between the child and aspects of the child's illness and parental responses. There was variability in the extent to which ethnicity and socioeconomic status were considered. Studies provide important insight into the responses of parents and their parenting of children with chronic health problems. The studies provide a sound base for continuing to build a developmentally sensitive body of knowledge related to parents and parenting of the child with chronic health problems.