A Celebration of Family: Family Actions Supporting Task Achievement in Elementary School-age Children with Cystic Fibrosis

Abstract

Although society is facing a new challenge of supporting an increasing prevalence of children with chronic illnesses, families always have known the joys and hardships of care. The literature (Cystic Fibrosis Foundation, 1993; Gortmaker, et al.) supported the growing difficulty many families have caring for their children related to family isolation, decreasing community resources, and the new morbidities. Families are caught between an environment supposed to be and presumed helpful, and one creating barriers to their children's successes. For children with cystic fibrosis and their families, the disease imposes complicated treatment regimens, frequent hospitalizations, and the specter of an early death.

The investigator used a descriptive-exploratory approach to answer the research questions, "How able are elementary school-age children with cystic fibrosis to achieve the developmental tasks of the early school period?" and "What do families do to promote achievement?" Fifteen families whose children were perceived by the cystic fibrosis clinic staff as "doing well" developmentally participated in the study.

Data were derived from indepth semi-structured interviews with the caregivers who were asked to tell stories about their children in three developmental areas (peer relationships, academic achievement, and self-concept); as well as from questionnaires, quantitative tools, and observations.

Data were analyzed according to the steps proposed by van Kaam (1969). The analysis revealed that the sample children were meeting the developmental tasks of the early school period. Children were making and keeping friends, achieving academic goals, and learning to appreciate who they were. Families actively intervened by encouraging peer interaction, collaborating with the teachers, and promoting self-esteem.

The successes of these children are probably the result of two interacting forces: families and professionals. The families' efforts to "normalize" life experiences for their children were similar to those reported in the literature (Chekryn, Deegan, & Reid, 1986; Deatrick & Knafl, 1990). Secondly, in accord with the literature (Gibson, 1986; McCubbin, 1984), the families placed confidence and trust in the health professionals and, in return, were empowered to act on behalf of the children. For the children in this study, the combination of family and health professionals enabled them to be developmentally successful.