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Q In children with cystic fibrosis (CF), does a life skills intervention improve psychosocial adjustment, functional health status, and physiological status over time more than usual care?
METHODS
Design:
randomised controlled trial.
Blinding:
blinded (healthcare providers and outcome assessors).
Follow up period:
9 months.
Setting:
4 university based CF centres in North Carolina, USA.
Patients:
116 children 8 to 11.25 years of age (mean age 9 y, 51% boys) with CF. Most children had mild CF.
Intervention:
Building CF Life Skills, an educational problem solving and social skills intervention (n = 58), or usual care (n = 58). The intervention consisted of a home visit to assess each child’s knowledge of CF and daily management of the disease and to provide information about CF and its treatment. About 2 weeks later, children participated in a small group session (4 children/group) focused on explaining CF to peers, dealing with teasing, and keeping up with peers during physical activity. Children in both groups had routine CF clinic visits every 3 months (usual care).
Outcomes:
psychosocial adjustment (Perceived Illness Experience Scale, Children’s Loneliness Scale, Social Support Scale for Children, and Self-Perception Profile for Children), functional health status (Functional Disability Inventory), and physiological health status (height, weight, and FEV1). The 5 instruments were read aloud to children by a researcher who was blinded to treatment group. Children were assessed every 3 months.
Patient follow up:
100% (intention to treat analysis).
MAIN RESULTS
Children in the intervention group had greater improvements than those in the usual care group for perceived illness experience, loneliness, and global self worth (table⇓). Groups did not differ for change in peer support (table⇓), various measures of social competence, functional health status (table⇓), pulmonary function (table⇓), height, or weight.
Life skills intervention v usual care to improve psychosocial adjustment, functional health, and physiological status of children with cystic fibrosis
CONCLUSION
A life skills intervention improved psychosocial adjustment in children with cystic fibrosis but did not improve functional health status or physiological status more than usual care.
Commentary
Although survival to adulthood is now the norm for people with CF, few studies have examined strategies aimed at helping affected children learn to understand CF and manage its social consequences. The study by Christian and D’Auria used knowledge gained from the team’s prior qualitative work and from appropriate theoretical frameworks to design developmentally appropriate individual and group interventions for 8–12 year olds.
Although no differences were found between the intervention and control groups in physical or functional health status, children in the intervention group experienced changes in the ways they thought about themselves, including greater improvements in self worth and reduced feelings of loneliness. Importantly, children in the intervention group had improved perceptions of the effect of their illness on their lives. The lack of improvement in physical health might be related to the mild symptoms of participants, or the follow up might have been too short to detect changes.
The study specifically targeted children with CF; however, various chronic conditions and disabilities may negatively affect children’s self esteem and peer relationships.1 Therefore, the study is relevant for paediatric nurses caring for school age children with any chronic condition that impairs physical functioning and requires ongoing care. Because the interventions were designed to help children understand their condition, explain it, and negotiate social situations with peers, the results may not apply to children with intellectual or verbal disabilities.
Paediatric and advanced practice nurses often have long term relationships with children with chronic conditions who receive care in specialty settings over many years. Such situations provide nurses with opportunities to help children learn the problem solving and communication skills that this study shows may lessen the effect of their illness.
Footnotes
↵* Information provided by author.
For correspondence: Dr B J Christian, College of Nursing, University of Utah, Salt Lake City, UT, USA. Becky.Christian{at}nurs.utah.edu
Source of funding: National Institutes of Health.