Sleeping with One Eye Open: The Sleep experience of Family Members Providing Palliative Care at Home

Abstract

Purpose: To empirically describe the sleep experience of family caregivers (n=13) of advanced cancer patients. Method: Mixed methodology using: family interviews; Epworth Sleepiness Scale (ESS); Pittsburgh Sleep Quality Index (PSQI); and actigraphy measurement. Qualitative data analysis utilized constant comparative content techniques. Actiware for the actigraphy data and the Statistical Package for the Social Sciences-15 (SPSS-15) generated descriptive and correlation statistics. Findings: The over arching theme “sleeping with one eye open” captures the vigilant nature of caregivers’ sleep experiences. Caregiver narratives were validated by quantitative findings: 5 of the family caregivers (38.5 percent) had an ESS score ≥ 11 indicative of excessive daytime sleepiness, all caregivers had a PSQI global score > 5 indicative of moderate to severe sleep problems, and actigraphy scores — including total sleep time, sleep efficiency, and time awake after sleep onset — fell beyond normal values documented in the literature. Conclusion: Impeccable assessment of the patient's and family's sleep status, sleep education, intervention strategies, and high-quality respite services are critical in community-based palliative care.