Parent routines for managing cystic fibrosis in children.
Management of cystic fibrosis (CF) is burdensome and adherence is often suboptimal. Family routines are associated with adherence and health outcomes in other disease populations. Few studies have examined routines in CF. The study's aim was to describe parent experiences developing and utilizing CF care routines. Semi-structured interviews with a convenience sample of 25 parents of children under 13 years of age with CF were analyzed using phenomenological analysis. Three domains emerged: parent experiences developing a routine, support systems facilitating maintenance of routines, and challenges with maintaining care routines. Parents found routines difficult to establish, used trial and error, encountered barriers, and found support helpful to manage care demands. Some parents chose to deviate from their routine. Providing anticipatory guidance to promote the use of care routines and strategies to manage potential challenges may facilitate use of routines and improve CF management.
Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue MLC2021, Cincinnati, OH, 45229, USA, daniel.grossoehme@cchmc.org.
Daniel H
DH
Grossoehme
Stephanie Spear
SS
Filigno
Meredith
M
Bishop
D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003550:Cystic Fibrosis / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006801:Humans; D007223:Infant; D007407:Interviews as Topic / Q000379:methods; D008297:Male; D010290:Parents / Q000523:psychology*; D010349:Patient Compliance / Q000523:psychology / Q000706:statistics & numerical data