Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study
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Original versionLerdal, A., Slåtten, K., Saghaug, E., Grov, E. K., Normann, A. P., Lee, K. A., ... & Gay, C. L. (2016). Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study. BMJ open, 6(1). http://dx.doi.org/10.1136/bmjopen-2015-009345
Objectives: This pilot study aimed to describe thesleep of partners and other family caregivers prior toand in the first year after a hospice patient’s death. Thestudy also evaluated the feasibility of the studyprotocol and determined the effect sizes in preparationfor a full-scale study.Design: The pilot study used a longitudinal,descriptive and comparative design.Setting and participants: Participants includedprimary family caregivers of patients admitted to ahospice in Oslo, Norway.Primary outcome: Caregiver sleep was measuredsubjectively with the Pittsburgh Sleep Quality Index(PSQI) and objectively using wrist actigraphy for 4nights and 3 days at three different times: during thehospice stay, and at 6 and 12 months after thepatient’s death.Results: 16 family caregivers (10 partners and 6 otherfamily members) completed the 1-year study protocol.Overall, sleep quality and quantity were stable overtime and at each assessment, approximately half of thesample had poor sleep quality, both by self-report andobjective measures. However, the sleep trajectoriesdiffered significantly over time, with older caregivers(≥65 years) having significantly longer sleep durationsthan younger caregivers (<65 years). Furthermore,sleep quality also differed over time depending on thecaregiver’s relationship to the patient, with partnercaregivers having significantly worse sleep quality thanother family caregivers.Conclusions: Caring for a dying family member isknown to interfere with sleep, yet little is known aboutbereaved caregivers. The results of this pilot studydemonstrate the feasibility of the longitudinal studyprotocol and indicate that sleep problems are commonfor caregivers and continue into the bereavementperiod, particularly for partner caregivers. Thecaregiver’s relationship to the patient may be animportant factor to consider in future studies.