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

Abstract

ObjectivesThis 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.DesignThe pilot study used a longitudinal, descriptive and comparative design.Setting and participantsParticipants included primary family caregivers of patients admitted to a hospice in Oslo, Norway.Primary outcomeCaregiver 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.Results16 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.ConclusionsCaring 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.

Role of poor sleep in determining distress in caregivers of individuals with early psychosis

“…The Pittsburgh Sleep Quality Index (PSQI) is a screening tool for sleep dysfunction in non‐clinical and clinical samples, and comparisons can be made across populations in terms of global PSQI scores (Buysse, Reynolds III, Monk, Berman, & Kupfer, ; Mollayeva et al, ). Several studies have reported sound reliability and validity for the 19‐item self‐report measure (Mollayeva et al, ), and the scale has been used effectively in studies of caregivers (e.g., Lerdal et al, ). An overall score is generated from 7 subcomponents that assess: sleep duration, sleep latency, habitual sleep efficiency, sleep disturbances, use of sleep medication, daytime dysfunction and subjective sleep quality.…”

“…Several studies have reported sound reliability and validity for the 19-item self-report measure (Mollayeva et al, 2016), and the scale has been used effectively in studies of caregivers (e.g., Lerdal et al, 2016). An overall score is generated from 7 subcomponents that assess: sleep duration, sleep latency, habitual sleep efficiency, sleep disturbances, use of sleep medication, daytime dysfunction and subjective sleep quality.…”

Sleep Pattern and Predictors of Sleep Disturbance Among Family Caregivers of Terminal Ill Patients With Cancer in Taiwan: A Longitudinal Study

“…Sleep problems commonly have a negative impact on the health and well-being of FCs. [9][10][11] Sleep disturbance is used to describe the symptoms of perceived or actual alteration of sleep patterns. 12 The criteria for sleep disturbance include sleeping for less than 7 hours, sleep latency of more than 20 minutes, wake after sleep onset (WASO) of more than 10%, daytime napping of more than 2 hours, and a sleep efficiency of less than 80%.…”

“…23 Individuals with sleep disturbance may be at risk of depression, 15,24 anxiety, 21 immune deficiency, 25 cardiovascular disease, 26 and a poor quality of life. 27 Although several studies have investigated the sleep quality of FCs 10,18 and the risk factors for sleep disturbance, 11,15 few studies have followed up FCs until the patients' death to explore the changes in sleep quality throughout the patients' dying process, and no study has comprehensively included the predisposing, precipitating, and perpetuating factors in investigating factors affecting the sleep quality of FCs.…”

Changes over time in family members of adults with mild traumatic brain injury

“…The MCID in a sample of patients with sleep disturbance is -3 (Hughes et al, 2009). With proven reliability and validity (Mollayeva et al, 2016), the PSQI has been used effectively in longitudinal studies of caregiver outcomes (Lerdal et al, 2016).…”