Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study

Anners Lerdal, Kari Slåtten, Elisabeth Saghaug, Ellen Karine Grov, Are Peder Normann, Kathryn A Lee, Bjørn Bjorvatn, Caryl L Gay, Anners Lerdal, Kari Slåtten, Elisabeth Saghaug, Ellen Karine Grov, Are Peder Normann, Kathryn A Lee, Bjørn Bjorvatn, Caryl L Gay

Abstract

Objectives: This pilot study aimed to describe the sleep of partners and other family caregivers prior to and in the first year after a hospice patient's death. The study also evaluated the feasibility of the study protocol and determined the effect sizes in preparation for a full-scale study.

Design: The pilot study used a longitudinal, descriptive and comparative design.

Setting and participants: Participants included primary family caregivers of patients admitted to a hospice in Oslo, Norway.

Primary outcome: Caregiver sleep was measured subjectively with the Pittsburgh Sleep Quality Index (PSQI) and objectively using wrist actigraphy for 4 nights and 3 days at three different times: during the hospice stay, and at 6 and 12 months after the patient's death.

Results: 16 family caregivers (10 partners and 6 other family members) completed the 1-year study protocol. Overall, sleep quality and quantity were stable over time and at each assessment, approximately half of the sample had poor sleep quality, both by self-report and objective measures. However, the sleep trajectories differed significantly over time, with older caregivers (≥ 65 years) having significantly longer sleep durations than younger caregivers (<65 years). Furthermore, sleep quality also differed over time depending on the caregiver's relationship to the patient, with partner caregivers having significantly worse sleep quality than other family caregivers.

Conclusions: Caring for a dying family member is known to interfere with sleep, yet little is known about bereaved caregivers. The results of this pilot study demonstrate the feasibility of the longitudinal study protocol and indicate that sleep problems are common for caregivers and continue into the bereavement period, particularly for partner caregivers. The caregiver's relationship to the patient may be an important factor to consider in future studies.

Keywords: MENTAL HEALTH; ONCOLOGY; sleep.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Figures

Figure 1
Figure 1
Flowchart showing the recruitment of patient-caregiver dyads.
Figure 2
Figure 2
Night-time sleep duration over time by caregiver age group. Older caregivers obtained consistently more sleep at night compared to younger caregivers (effect of age group: F[1,14]=6.55, p=0.023, η2=0.32).
Figure 3
Figure 3
Self-reported sleep quality over time by caregiver type, adjusting for caregiver age. Partner caregivers reported consistently worse sleep quality over time compared to other family caregivers (effect of caregiver type: F[1,13] =5.18, p=0.040, η2=0.29). Covariate of caregiver age evaluated at a mean value of 58.6 years.
Figure 4
Figure 4
Objectively measured sleep disruption over time by caregiver type, adjusting for caregiver age. Partners had less sleep disruption than other family caregivers while the patient was in hospice, but the sleep disruption improved over time for other family caregivers and worsened for partner caregivers (interaction effect of time by caregiver type: F[2,26]=7.76, p=0.002, η2=0.37). Covariate of caregiver age evaluated as a mean value of 58.6 years.

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