Characterizing and conceptualizing sleep in adolescents and young adults with cystic fibrosis: a descriptive...

The adolescent and young adult (AYA) developmental period is a time of risk for sleep challenges. These may be additionally compounded for those living with cystic fibrosis (CF). This study aimed to better understand how AYA with CF describe and experience sleep.

Purposive sampling, from within a larger quantitative study of AYA with CF aged 14-25, aimed for maximum variation in sleep experiences as defined by score on the Pittsburgh Sleep Quality Index (PSQI). Virtual, semi-structured interviews were conducted. Open-ended questions focussed on sleep experience and factors perceived to be associated with both a good and poor night's sleep. Interviews were audio-recorded, transcribed and de-identified. Data were analyzed independently by two researchers using content analysis and following qualitative descriptive methodology. Codes were categorized into overarching, mutually exclusive themes.

Interviews were conducted with 19 participants (mean age = 19.74 ± 3.19yrs). As determined by the PSQI, 42% (n = 8) had poor sleep quality. CF symptoms, CF treatments, anxiety, changes in health status, and initiation of elexacaftor/tezacaftor/ ivacaftor (ETI) were perceived to interfere with sleep. Positioning, good sleep hygiene, breathing therapies and being stable on ETI were perceived to benefit sleep. AYA's with CF discussed a desire to engage in discussions about sleep with their CF care teams.

Given the prevalence of sleep concerns, sleep assessment and screening should be prioritized in CF care. Identifying sleep challenges and better understanding the factors that contribute towards or ameliorate poor sleep could have a significant impact on well-being and quality of life.