Abstract
Evidence suggests that individuals with Cystic Fibrosis (CF) experience difficulties with sleep architecture and hygiene, although research is limited. There are currently no behavioral sleep interventions for youth with CF. The current study used qualitative methods to understand sleep needs and concerns among youth with CF, as well as to obtain feedback about potentially useful behavioral sleep intervention strategies. Semi-structured interviews were conducted with youth with CF between the ages of 11–17 and their parents. Themes were extracted from the data and will be used to inform the development of a brief behavioral sleep intervention for youth with CF. Youth and their parents described several CF-specific sleep concerns, often related to respiratory symptoms, and a number of strategies used to manage these concerns. They also described concerns that apply to the general population, including pervasive use of technology around bedtime. Many evidence-based behavioral sleep intervention strategies are acceptable to youth with CF, although modifications are appropriate to reduce time burden and address CF-specific needs. Youth with CF experience a number of disease-specific and more generalized sleep concerns which are likely amenable to behavioral intervention. Results from this study will be used to inform the development of a brief behavioral sleep intervention for youth with CF.
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References
Becker, S. C., Langberg, J. M., & Byars, K. C. (2015). Advancing a biopsychosocial and contextual model of sleep in adolescence: A review and introduction to the special issue. Journal of Youth and Adolescence, 44(2), 239–270.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
Calamaro, C. J., Mason, T. B. A., & Ratcliffe, S. J. (2009). Adolescents living the 24/7 lifestyle: Effects of caffeine and technology on sleep duration and daytime functioning. Pediatrics, 123(6), e1005–e1010.
Chorney, D., Detweiler, M., Morris, T., & Kuhn, B. (2008). The interplay of sleep disturbance, anxiety, and depression in children. Journal of Pediatric Psychology, 33, 339–348.
Cystic Fibrosis Foundation. (2018). Mental health coordinator award: Implementation of the depression and anxiety guidelines. https://www.cff.org/Our-Research/For-Researchers/Career-Development-Awards/Mental-Health-Coordinator-Award-Policiesand-Guidelines.pdf.
Gradisar, M., Wolfson, A. R., Harvey, A. G., Hale, L., Rosenberg, R., & Czeisler, C. (2013). The sleep and technology use of Americans: Findings from the national sleep foundation’s 2011 sleep in america poll. Journal of Clinical Sleep Medicine, 9(12), 1291–1299.
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Psychology, 15(9), 1277–1288.
Jensen, J., Jones, C., Kartsonake, C., Packer, K., Adler, F., & Liou, T. (2017). Sleep phase delay in cystic fibrosis: A potential new manifestation of cystic fibrosis transmembrane regulator dysfunction. Chest, 152(2), 386–393.
Law, E., Tham, S. W., Aaron, R. V., Dudeney, J., & Palermo, T. M. (2018). Hybrid cognitive-behavioral therapy intervention for adolescents with co-occurring migraine and insomnia: A single-arm pilot trial. Headache, 58(7), 1060–1073.
Meltzer, L., & Beck, S. (2012). Sleep patterns in children with cystic fibrosis. Child Health Care, 41(3), 260–268.
Meltzer, L., & Mindell, J. (2014). Systematic review and meta-analysis of behavioral interventions for pediatric insomnia. Journal of Pediatric Psychology, 39(8), 932–948.
Mitchell, M., Gehrman, P., Perlis, M., & Umscheid, C. (2012). Comparative effectiveness of cognitive behavioral therapy for insomnia: a systematic review. BMC Family Practice, 13, 40.
Naqvi, S., Sotelo, S., Murry, L., & Simakajornboon, N. (2008). Sleep architecture in children and adolescents with cystic fibrosis and the association with severity of lung disease. Sleep Breath, 12(1), 77–83.
Palermo, T., Beals-Erickson, S., Bromberg, M., Law, E., & Chen, M. (2017). A single arm pilot trial of brief cognitive behavioral therapy for insomnia in adolescents with physical and psychiatric comorbidities. Journal of Clinical Sleep Medicine, 13(3), 401–410.
Palermo, T., Bromberg, M., Beals-Erickson, S., Law, E. F., Durkin, L., Noel, M., & Chen, M. (2016). Development and initial feasibility testing of brief cognitive-behavioral therapy for insomnia in adolescents with comorbid conditions. Clinical Practice in Pediatric Psychology, 4(2), 214–226.
Perlis, M. L., Jungquist, C., Smith, M. T., & Posner, D. (2008). Cognitive Behavioral Treatment of Insomnia: A Session-by-Session Guide. . New York, NY: Springer Science + Business Media LLC.
Quittner, A., Goldbeck, L., Abbott, J., Lambrecht, P., Sole, A., Tibosch, M. M., Bergsten, B., Yuksel, H., Catastini, P., Blackwell, L., & Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of the International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090–1097.
Qwens, J., & Adolescent Sleep Working Group, & Committee on Adolescence. (2014). Insufficient sleep in adolescents and young adults: An update on causes and consequences. Pediatrics, 134(3), e921–e932.
Sandelowski, M. (2001). Real qualitative researchers do not count: The use of numbers in qualitative research. Research in Nursing and Healthcare, 24(3), 230–240.
Sivertsen, B., Hysing, M., Stormark, K., & Lundervold, A. (2009). Chronicity of sleep problems in children with chronic illness: a longitudinal population-based study. Child and Adolescent Psychiatry and Mental Health, 3(1), 22.
Vandeleur, M., Walter, L., Armstrong, D., Robinson, P., Nixon, G., & Horne, R. (2017). What keeps children with cystic fibrosis awake at night? Journal of Cystic Fibrosis, 16(6), 719–726.
Vandeleur, M., Walter, L., Armstrong, D., Robinson, P., Nixon, G., & Horne, R. (2017). How well do children with cystic fibrosis sleep? An actigraphic and questionnaire-based study. Journal of Pediatrics, 182, 170–176.
Vandeleur, M., Walter, L., Armstrong, D., Robinson, P., Nixon, G., & Horne, R. (2018). Quality of life and mood in children with cystic fibrosis: Associations with sleep quality. Journal of Cystic Fibrosis, 17(6), 811–820.
Acknowledgements
The authors wish to acknowledge the patients and parents who gave generously of their time to participate in this study.
Funding
Research reported in this publication was supported by Cystic Fibrosis Foundation under Award Number CANTER19A0-I. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Cystic Fibrosis Foundation.
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This was an IRB-approved study involving human subjects. All relevant procedures related to informed consent and data collection and storage were followed. The IRB approval number from the Nemours Office of Human Subjects Protection is # 1327408.
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Canter, K.S., Strang, A., Franklin, M. et al. A Qualitative Exploration of Sleep Habits and Intervention Needs Among Youth with Cystic Fibrosis. J Clin Psychol Med Settings 29, 44–53 (2022). https://doi.org/10.1007/s10880-021-09774-4
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DOI: https://doi.org/10.1007/s10880-021-09774-4