Survey of professionals' expectations of developmental task achievement of cystic fibrosis self-care in children

Abstract

We surveyed 174 professionals with at least 6 months of experience working with children and adolescents with cystic fibrosis (CF), to obtain estimates of ages at which 50% of children with CF may be able to perform each of 44 self-care behaviors related to the treatment of CF. Respondents were 63 physicians, 36 nurses, 24 dietitians, 18 respiratory therapists, 17 nurse practitioners, 10 social workers, and 4 psychologists, who had a mean of 11.4 years (SD = 7.5) of experience working with pediatric patients with CF. Mean age estimates for self-care behaviors ranged from 5.5–13.9 years. For each item, responses varied among respondents, as reflected by a mean standard deviation of 2.75 years for all behaviors. Analyses of concordance suggested a high level of agreement among respondents for the order of mastery of specific skills related to diet and enzymes use only. To date, there are no empirically defined age estimates for when children with CF may be able to perform specific self-care behaviors involved in the management of CF. This survey is the first step in generating age estimates for self-care independence in CF. Future research should conduct an objective assessment of children's CF knowledge and skill in performing these behaviors, and compare these findings to the age estimates offered in this study. Pediatr Pulmonol. 2005; 40:135–140. © 2005 Wiley-Liss, Inc.