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Parent routines for managing cystic fibrosis in children

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Abstract

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.

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Acknowledgments

This study was partially funded by grants from (NIH/NICHD K23 HD062642, PI: Grossoehme).

Conflict of Interest

Daniel H. Grossoehme, Stephanie Filigno and Meredeith Bishop declare that they have no conflicts of interest.

Human and Animal Rights and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

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Authors and Affiliations

  1. Division of Pulmonary Medicine, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue MLC2021, Cincinnati, OH, 45229, USA

    Daniel H. Grossoehme

  2. Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Stephanie Spear Filigno & Meredith Bishop

Authors
  1. Daniel H. Grossoehme
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  2. Stephanie Spear Filigno
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  3. Meredith Bishop
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Corresponding author

Correspondence to Daniel H. Grossoehme.

Appendix

Appendix

See Table 4.

Table 4 Semi-structured interview guide
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Grossoehme, D.H., Filigno, S.S. & Bishop, M. Parent routines for managing cystic fibrosis in children. J Clin Psychol Med Settings 21, 125–135 (2014). https://doi.org/10.1007/s10880-014-9396-1

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  • DOI: https://doi.org/10.1007/s10880-014-9396-1

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