Insomnia Symptoms Among Hospice Family Caregivers: Prevalence and Association with Caregiver Mental and Physical Health, Quality of Life, and Caregiver Burden

Abstract

Background Poor sleep exacerbates mental health problems and reduces quality-of-life (QOL) but prevalence of insomnia symptoms among hospice family caregivers and associations of poor sleep with caregiver health and QOL outcomes are not known. Objective To describe prevalence of insomnia symptoms among hospice family caregivers and compare anxiety, depression, self-rated health, QOL, and caregiver burden between hospice family caregivers with and without insomnia symptoms. Methods Descriptive sub-study using data collected during baseline interviews of hospice family caregivers involved in a randomized clinical trial in Midwestern United States (xxxxxxxx). Caregivers were dichotomized based on Insomnia Severity Index (ISI) scores (8+ indicated insomnia symptoms). Results Among 57 hospice family caregivers, the mean ISI score was 8.2; nearly half (49.1%) experienced insomnia symptoms. Compared to caregivers without insomnia symptoms, caregivers with insomnia symptoms reported 2.4 times greater mean anxiety scores (4.7 vs 11.4); 3.5 times greater mean depression scores (3.1 vs 10.7); 2.1 times greater caregiver burden scores (5.6 vs 11.8); and 1.3 times lower self-rated health (3.5 vs 2.8); 1.3 times lower total QOL scores (29.3 vs 22.6); including differences in emotional QOL (7.9 vs 2.2), social QOL (7.2 vs 3.0), and physical QOL (7.4 vs 5.3). Conclusions Hospice family caregivers experience high prevalence of insomnia symptoms; caregivers with insomnia symptoms report worse anxiety, depression, caregiver burden, QOL, self-rated health. Clinicians must screen hospice caregivers for poor sleep and mental health and offer supportive interventions that improve their sleep and health. Policy makers must expand hospice benefits to better support family caregivers.

“It was terrible, I didn’t sleep for two years”: A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life

“…Another recent study found that compared to family caregivers of terminally-ill persons without insomnia symptoms, caregivers with insomnia symptoms reported 2.4 times greater mean anxiety scores, 3.5 times greater mean depression scores, 2.1 times greater caregiver burden scores, 1.3 times lower self-rated health scores, and 1.3 times lower total quality-of-life scores (including significantly lower scores in emotional, social, and physical quality-of-life). 26 Furthermore, poor sleep and anxiety symptoms have been found to be associated with poorer health in hospice family caregivers. 18 Research is needed to understand how end-of-life caregiving may be a morbid risk factor for caregiver health and what can be done to mitigate physical and mental health risks.…”

“…In some ways, hospice family caregivers and new parents are similar: caregiving needs of babies and dying persons are significant and the stresses of caregiving combined with poor sleep have been found to affect the mental health of new mothers 53,54 and hospice family caregivers. 17,26,32 In postpartum women, poor sleep has been found to be independently associated with increased depression and anxiety symptoms. 55,56 For this reason, there is a growing movement to treat and prevent mental health disorders in postpartum women by targeting insomnia with cognitive behavioral therapy.…”

“…Although all caregivers may feel a loss of freedoms that pre-existed caregiving, the nature of terminal caregiving is one of profound loss and anticipating death, 57 whereas joy and enhanced capacity are more likely to accompany the stresses of adapting to parenthood. 58 Perhaps due to the different purposes of their caregiving, end-of-life family caregivers are more likely than new parents to experience significant mental health disturbances, including higher rates of anxiety and depression, 17,26,32 the profound stress of sadness, 59,60 predeath grief or anticipated grief, 61–67 psychological distress, 68 and unmet needs for social support. 65,69 In addition, end-of-life caregivers can generally anticipate their sleep worsening as illness progresses, whereas new parents can generally anticipate sleep improving as their child develops.…”

“…15 In-home end-of-life caregiving contributes to myriad challenges for family caregivers, [16][17][18][19][20] including difficulty sleeping. [21][22][23][24][25] Nearly half of family caregivers of in-home hospice patients ("hospice family caregivers") report insomnia symptoms, 26 with prevalence higher among caregivers of patients with advanced cancer, 72% or more of whom report moderate to severe sleep disturbances. 22 As death approaches, family caregivers of home-based terminally-ill persons experience declines in sleep duration and increases in daytime dysfunction 22,27 and other negative effects, including worse physical health, anxiety and depression, increased caregiver mortality, lower caregiver quality of life, and greater caregiver burden.…”

“…22 As death approaches, family caregivers of home-based terminally-ill persons experience declines in sleep duration and increases in daytime dysfunction 22,27 and other negative effects, including worse physical health, anxiety and depression, increased caregiver mortality, lower caregiver quality of life, and greater caregiver burden. 21–23,28–30 Poor sleep during caregiving is well-documented, specifically among cancer caregivers, 22,24 but few studies have explored caregivers’ narrative experiences and perceptions of sleep during the period leading up to a patient’s death, when (sometimes scary) care needs intensify overnight and caregiver distress increases, 27,31 exacerbating already higher than average rates of anxiety, 26,32,33 depression, 26,32,33 and psychological distress 34 among hospice family caregivers. Given high prevalence of mental health disorders in hospice family caregivers and well-established relationships between mental health disorders and sleep disorders, 35–37 research is needed to understand how end-of-life family caregivers perceive their sleep experiences in the context of mental health, physical health, and functionality.…”