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.

European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre

“…In each stage there are age-related themes as well as CF themes [69,70] ( Table 3). Key stages include the time around diagnosis [71], the transition to adult care [19,[72][73][74][75][76] and the transition to end-of-life/transplantation care [77,78]. The disease trajectory itself also necessitates times of increased psychosocial support, for example, at diagnosis, first P. aeruginosa infection, first inpatient admission, diagnosis of CF-related diabetes, the need for gastrostomy tube feeding, supplementary oxygen, non-invasive ventilation, and assessment for lung transplantation.…”

Nursing interventions in monitoring the adolescent with Cystic Fibrosis: a literature review

“…The nurse, as a health team member who interacts closely with the adolescent and family in the transition health-illness process, is able to establish a close relationship and offer emotional support, contributing to the autonomy of the adolescents and their family members 9 , 11 - 12 , 14 - 15 .…”

“…The evidenced-based research and practice developed by nurses empowers them with the necessary skills to enable a better health promotion and support the development of guidelines underlying nursing practice 10 , 14 .…”

Do guidelines provide evidence-based guidance to health professionals on promoting developmentally appropriate chronic condition self-management in children? A systematic review

“…8 Children with chronic conditions can, and do, develop self-management skills at varying rates and intervals. 12,13…”

“…3,14 Children with chronic conditions are likely to interact with clinicians regularly, 3 learning the skills they need to manage their health over a long period. 12,13 This frequent contact offers clinicians opportunities to provide CCSM support in a ways that help children to build the complexity of their skills on top of skills they have previously aquired. 3 The term ‘clinician’ encompasses a variety of disciplines including medicine, nursing and allied health.…”