Caregiver Sleep Research Articles

260 - Cross-Sectional Analysis of Sleep in Caregivers of Pediatric Stem Cell Transplant Patients: A Pilot Study

260 - Cross-Sectional Analysis of Sleep in Caregivers of Pediatric Stem Cell Transplant Patients: A Pilot Study

Sleep disturbances in caregivers of patients with advanced cancer: A systematic review.

Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer. An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: "sleep," "insomnia," "sleep disturbance," "circadian rhythm," "caregiver," "carer," "advanced cancer," "palliative cancer," and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded. Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours. Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.

The Quality of Sleep, Burden of Care and Psychological Distress in Caregivers of Patients with Stroke

Caring for patients with chronic medical disorders such as stroke is a very demanding task. Family caregivers suffer various negative health consequences in the course of rendering care for patients with stroke. There is paucity of research on the impact of caregiving on the quality of sleep of these caregivers. Aim: To assess the quality of sleep in caregivers of patients with stroke attending a tertiary teaching hospital in Lagos Nigeria. Also, to determine the factors associated with poor quality of sleep in the caregivers. The study also determined the relationship between quality of sleep, burden of care and psychological distress among the caregivers. Study design: Cross-sectional study. Methodology: Sixty-four informal caregivers of randomly selected patients with stroke attending the Medical Out-patients clinic of the Lagos University Teaching Hospital Idi-Araba, Lagos, South-Western, Nigeria. The quality of sleep of the participants was assessed using the Pittsburgh Sleep Quality Index (PSQI). Caregivers’ burden and psychological distress were assessed with Zarit Burden Interview (ZBI) and General Health Questionnaire-12 (GHQ-12) respectively. Data were obtained from all the participants via a face to face interview conducted by the researchers; additional clinical variables pertaining to the illness in the patients were obtained from the patients’ case files. Results: About 31.3% of the caregivers of patients with stroke had poor quality of sleep (global PSQI score > 5). On regression analysis, caregivers’ burden (p=0.004) and psychological distress in the caregivers (p=0.004) are the only factors that were independently associated with poor quality of sleep among the caregivers. Conclusion: Our findings bring to the fore the need to screen caregivers of patients with stroke for sleep problems and facilitate their access to relevant interventions.

Sleep in family caregivers of ICU survivors for two months post-ICU discharge

To describe changes in sleep quality in family caregivers of ICU survivors from the patients' ICU admission until two months post-ICU discharge. Descriptive repeated measure design. Academic hospital medical ICU. Subjective sleep quality (Pittsburgh Sleep Quality Index [PSQI]) and objective sleep/wake variables (SenseWear Armband™) were measured in family caregivers at patients' ICU admission, within two weeks post-ICU discharge and two months post-ICU discharge. In 28 family caregivers of ICU survivors, most caregivers reported poor sleep quality (i.e. PSQI >5) across the three time points (64.3% during patients' ICU admission, 53.6% at each post-ICU time point). Worse trends in sleep quality and objective sleep/wake pattern were observed in caregivers who were employed, and a non-spouse. There were trends of worsening sleep quality in caregivers of patients unable to return home within two months post-ICU discharge compared to patients able to return home. Poor sleep quality was highly prevalent and persisted in family caregivers of ICU survivors for two months post-ICU discharge. Our data support the need for a larger longitudinal study to examine risk factors associated with sleep quality in family caregivers of ICU survivors to develop targeted interventions.

Sleep Disturbance in Caregivers of Children With Respiratory and Atopic Disease

To examine sleep patterns and sleep disturbances in caregivers of children with chronic illness. Caregivers of children with atopic dermatitis (AD, n = 35), asthma (AS, n = 27), atopic dermatitis and asthma (AD + AS, n = 57), ventilator assistance (VENT, n = 61), or typically developing (HEALTHY, n = 63) completed the Pittsburgh Sleep Quality Index, the Insomnia Severity Index, and three items examining reasons for parent sleep disruption. Compared with healthy families, caregivers of children with chronic illness reported poorer sleep quality, more symptoms of insomnia, and chronic partial sleep deprivation. VENT and AD caregivers had higher rates of sleep disruptions due to caregiving, whereas AS caregivers reported more sleep disruptions from stress about the child's health. Deficient and poor-quality sleep in caregivers of children with chronic illness may have a significant impact on their health and well-being, as well as caregiving responsibilities. These data provide important information for pediatric psychologists working with these families.

Care transitions across the continuum: Improving geriatric competence

The effect of shift work on nurses' sleep is well-studied, but there are other challenging aspects of health care work that might also affect the sleep of direct caregivers. This study examined the influence of the long-term care work environment on sleep quantity and quality of nursing assistants. A cross-sectional survey collected data from 650 nursing assistants in 15 long-term care facilities; 46% reported short sleep duration and 23% reported poor sleep quality. A simple additive index of the number of beneficial work features (up to 7) was constructed for analysis with Poisson regression. With each unit increase of beneficial work features, nursing assistants were 7% less likely to report short sleep duration and 17% less likely to report poor sleep quality. These results suggest that effective workplace interventions should address a variety of work stressors, not only work schedule arrangements, in order to improve nursing assistants' sleep health.

Sleep in caregivers: what we know and what we need to learn.

The number of informal caregivers providing assistance to adults is increasing commensurate with our aging society. Sleep disturbances are prevalent in caregivers and associated with negative physical, medical, and functional outcomes. Here, we describe the predisposing, precipitating, and perpetuating factors contributing to the development of sleep problems in caregivers, and discuss three understudied caregiving populations that have clinical importance and unique circumstances influencing sleep quality and health. There is clear evidence supporting the interaction between sleep loss, caregiving stress, and vulnerability to chronic disease. Telehealth and telemedicine sleep interventions for caregivers combined with assistive technologies targeting care-receivers have potential to be more individualized, affordable, and widely accessible than traditional in-person insomnia treatment approaches. Limited data exist describing the etiology and treatment of sleep problems in caregivers of veterans, medical patients newly discharged from the hospital, and developmentally disabled adults. There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

Sleep Quality in Family Caregivers of Individuals With Dementia: A Concept Analysis.

Poor sleep quality in family caregivers may impact their health status and cause quality of life to decline. Nurses are conducting an increasing number of studies that use sleep quality or related concepts as a main indicator to assess caregiver's sleep. Therefore, a clear understanding of sleep quality and how it is different from other relevant sleep domains is essential. This article aimed to analyze the concept of sleep quality using the steps outlined by Walker and Avant. Findings include (a) attributes of sleep quality including subjective perception of sleep, sleep hours, and evaluation of activity after awaking; (b) antecedents of sleep quality including the ability to get naturally into the sleep cycle and status of conscious state; and (c) consequences of sleep quality including bio-psycho-social and global dimensions of health. This article intends to help clinicians and researchers better understand and define sleep quality in dementia caregivers.

Contributing influences of work environment on sleep quantity and quality of nursing assistants in long-term care facilities: A cross-sectional study

The effect of shift work on nurses' sleep is well-studied, but there are other challenging aspects of health care work that might also affect the sleep of direct caregivers. This study examined the influence of the long-term care work environment on sleep quantity and quality of nursing assistants. A cross-sectional survey collected data from 650 nursing assistants in 15 long-term care facilities; 46% reported short sleep duration and 23% reported poor sleep quality. A simple additive index of the number of beneficial work features (up to 7) was constructed for analysis with Poisson regression. With each unit increase of beneficial work features, nursing assistants were 7% less likely to report short sleep duration and 17% less likely to report poor sleep quality. These results suggest that effective workplace interventions should address a variety of work stressors, not only work schedule arrangements, in order to improve nursing assistants' sleep health.

The impact of effective paediatric adherence promotion interventions: systematic review and meta-analysis.

Understanding the impact of effective paediatric adherence promotion interventions on patients, families and the healthcare system is necessary to inform efforts to improve healthcare quality and control costs. Building on previous research suggesting that improving adherence may have far-reaching benefits, the objective of this study was to quantify the impact of effective adherence promotion interventions for children and adolescents with a chronic medical condition on patients, families and the healthcare system. Authors systematically reviewed articles indexed in PubMed, PsycINFO and CINAHL to identify randomized controlled trials of paediatric adherence promotion interventions. Interventions that improved paediatric adherence and examined patient-level, family-level or healthcare system-level outcomes in children and adolescents (M age ≤ 18 years) with a chronic medical condition were included. Two authors independently extracted and classified outcome variables as patient-level (quality of life and disease-related activity restrictions), micro-level (family functioning, family conflict, caregiver quality of life, caregiver sleep interruption, caregiver days away from work and patient missed school days) or macro-level variables (emergency department visits, hospitalizations, outpatient visits and urgent care visits). Outcome variables detailed in previously published reviews (i.e. disease severity) were excluded. Twenty studies representing 19 unique samples met inclusion criteria. An additional eight articles representing trials that did not significantly improve adherence were included in post hoc analyses. Compared with control interventions, effective paediatric adherence promotion interventions improved patient quality of life and family-level outcomes and decreased healthcare utilization among children and adolescents with a chronic medical condition. Interdisciplinary efforts to improve healthcare quality and reduce spending among children and adolescents with a chronic medical condition may be enhanced by incorporating effective paediatric adherence promotion interventions. As relatively few chronic medical conditions were represented in included studies, future research should examine the impact of paediatric adherence promotion interventions in other populations.

The relationship of health behaviors with sleep and fatigue in transplant caregivers.

The burden and psychological impact of providing care to a loved one with cancer is significant and associated with a number of problems including sleep disturbance and fatigue. While engaging in healthy behaviors such as proper nutrition, exercise, and stress reduction may improve sleep and fatigue, few studies have focused on this relationship. The objective of this study is to examine the relationship of health behaviors with sleep quality and fatigue in transplant caregivers. Data were analyzed from a cross-sectional survey of 78 caregivers of patients undergoing allogeneic hematopoietic stem cell transplantation. Measures included: Health-Promoting Lifestyle Profile II (HPLP-II), Brief Symptom Inventory (Distress), Caregiver Reaction Assessment (Caregiver Burden), Pittsburgh Sleep Quality Index, and the Multidimensional Fatigue Symptom Inventory Short-Form. Controlling for age, gender, BMI, burden and distress, health behaviors predicted sleep quality (B = -0.408, p = 0.021) and fatigue (B = -0.966, p < 0.001). Stress management (B = -0.450, p = 0.001), nutrition (B = -0.249, p = 0.048), and interpersonal relationships (B = -0.319, p = 0.049) were the HPLP-II subscales that significantly predicted sleep quality; nearly every HPLP-II subscale predicted fatigue. Despite the burden and distress associated with caregiving, engaging in healthy behaviors may help to improve sleep and fatigue in transplant caregivers. Published 2015. This article is a U.S. Government work and is in the public domain in the USA.

Sleep disturbance in family caregivers of children who depend on medical technology: A systematic review.

Society relies on family caregivers of children who depend on medical technology (e.g. mechanical ventilation), to provide highly skilled and vigilant care in their homes 24 hours per day. Sleep disturbance is among the most common complaints of these caregivers. The purpose of this review is to systematically examine studies reporting on sleep outcomes in family caregivers of technology dependent children. All relevant databases were systematically searched: MEDLINE, EMBASE, PsycINFO and CINAHL. Given the heterogeneity of the studies, a qualitative analysis was completed and thus results of this review are presented as a narrative. Thirteen studies were retrieved that met eligibility criteria for inclusion. All of the studies reported on family caregivers of children with medical complexity living at home. Moreover, all of the studies relied entirely on self-report, not objective sleep measures. No intervention studies were found. Sleep disturbance was found to be common (51-100%) along with caregiver reports of poor sleep quality. Sleep quantity was seldom measured, but was found in the few studies that did, to be approximately 6 hours, or less than recommendations for optimal health and daytime function. Multiple caregiver, child and environmental factors were also identified that may negatively influence caregiver sleep, health and daytime function. Findings of this review suggest that family caregivers of children with medical complexity who depend on medical technology achieve poor sleep quality and quantity that may place them at risk of the negative consequences of sleep deprivation. Recommendations for practice include that health care providers routinely assess for sleep disturbance in this vulnerable population. The review also suggests that studies using objective sleep measurement are needed to more fully characterize sleep and inform the development of targeted interventions to promote sleep in family caregivers of technology dependent children.

48. Is caregiver sleep related to allogeneic hematopoietic stems cell transplant engraftment?

Caregiving for hematopoietic stem cell transplant patients (HSCTp) is burdensome resulting in inadequate self-care, possibly leading to negative patient outcome. This potential Caregiver–HSCTp relationship was examined through assessment of caregiver objective and subjective sleep measures. We hypothesized that better caregiver sleep would be related to shorter time to patient engraftment (TtoE). Dyads ( N = 109) were HSCTp (M (SD) age = 48.2(12.7)) and caregivers (M (SD) age = 52.7(12.6)). Linear regression controlled for clinically relevant patient variables (age, sex, pre-transplant treatment intensity, clinical status). Better caregiver subjective sleep quality (Pittsburgh Sleep Quality Index) and objective sleep efficiency (SE; actigraphy) collected prior to engraftment significantly predicted TtoE (std beta’s = .20 and −.30 respectively; p ’s < .05). Objective SE remained a significant predictor of TtoE after additionally controlling for sleep medications (std beta = −.29; p < .05), explaining an additional 8% of the variance (total R squared = 24%). Further, the timespan of sleep assessment relative to engraftment (M (SD) days = 18.5(12.1)) was controlled for to address the potential bidirectional relationship (e.g., shorter TtoE led to better caregiver sleep), and significant effects of caregiver SE remained (std beta = −.18; p < .05). These data highlight potential influences of caregiver self-care, specifically sleep, on HSCTp outcome. Future research should examine potential mediators of this relationship as well as addressing caregivers’ psychological well-being and sleep disturbance during the process of HSCT. (Supported by NIH grant CA126971 and PCORI contract CE-1304-6208.)

The role of sleep in Juvenile idiopathic arthritis patients and their caregivers.

Juvenile idiopathic arthritis is a chronic disease that may lead to various consequences for patients and caregivers, especially in relation to sleep quality. Sleep is an essential process for homeostasis of the organism. In general, caregivers of children with JIA are more susceptible to these sleep disorders and a lower quality of life. This impairment in sleep can potentially affect the health of caregiver. For this reason, it is very important to continue to evaluate the quality of sleep in caregivers and how to support these JIA children’s caregivers more effectively.

Sleep in Persons With Frontotemporal Dementia and Their Family Caregivers

Dementia is associated with disruptions in sleep and sleep quality for patients and their family caregivers. Little is known about the impact of frontotemporal dementia (FTD) on sleep. The purpose of this study was to characterize sleep in patients with FTD and their family caregivers. Twenty-two patient-caregiver dyads were enrolled: Thirteen behavioral variant FTD (bvFTD) and nine semantic dementia (SD). Sleep and sleep quality data were collected for 2 weeks using diaries and Actiwatches. Patients with bvFTD and SD spent more time in bed at night compared to their caregivers. Nighttime behaviors were reported more frequently by caregivers for the bvFTD patients and strongly correlated with caregiver distress. Actigraphy data showed normal sleep efficiency and timing of the nighttime sleep period for both patients and their caregivers. Caregivers of patients with bvFTD reported poorer sleep quality compared to the SD caregivers. A greater number of bvFTD caregivers compared to SD reported negative aspects of sleep quality for themselves and used sleep medications more frequently. The clinical manifestations of bvFTD appear to be associated with different and more distressing impacts on the caregiver sleep quality than SD.

Impaired Autonomic Nervous System Activity During Sleep in Family Caregivers of Ambulatory Dementia Patients in Japan

The number of dementia patients requiring care is rapidly increasing in Japan. Consequently, a large percentage of family members, including spouses and children of those with dementia, are assuming the role of primary caregiver. Many caregivers develop health problems including sleep disorders. Some report poor quality of sleep even when sleep duration is normal. In the present study, we used actigraphy and heart rate variability spectral analysis to assess autonomic nervous system activity and quality of sleep in family caregivers of people with ambulatory dementia. The 20 caregivers who participated in our study exhibited significantly higher levels of sympathetic nervous system activity during sleep than noncaregivers. This abnormal activity was most prominent during the first half of the sleep period and was not related to overall sleep duration. We propose that relaxation is inhibited during the first half of the sleep period in this caregiver population. This may be due to increased stress, as caregivers of people with ambulatory dementia may worry about their patients waking and wandering at night, potentially injuring themselves. Our findings indicate a need for increased support for caregivers of people with dementia, including the assessment and treatment of sleep disorders.

Sleep disturbances in Malaysian children with cerebral palsy

The aim of the study was to compare the frequency and type of sleep disturbances in a group of Malaysian children aged 4 to 18 years with cerebral palsy (CP) with their nearest-age, able-bodied siblings and to identify factors associated with sleep disturbances. The study was a case-control study of 109 children with CP (61 males, 48 females; mean age 9 y, SD 3 y 11 mo, range 4-18 y) and their healthy siblings (56 males, 53 females; mean age 10 y, SD 3 y 9 mo, range 4-18 y). The Sleep Disturbances Scale for Children (SDSC) questionnaire was completed by the main caregiver. In children with CP, multiple regression analysis was be used to determine factors related to higher Total SDSC sleep scores. Ninety-seven children (89%) had spastic CP, 10 (9%) had dyskinetic CP, and two (2%) had mixed CP. Based on the Gross Motor Function Classification System (GMFSC), 34 patients (31%) were at GMFSC level I or II, 10 patients (9%) at level III, and 65 patients (60%) at level IV or V. Children with CP scored significantly higher than their siblings on Total SDSC and four SDSC subscale scores - difficulty in initiating and maintaining sleep, sleep breathing disorders, sleep-wake transition disorders, and sleep hyperhidrosis. Caregiver sleep duration of less than 7 hours (p=0.02) and caregiver sleep latency of more than 30 minutes (p=0.03) were significantly associated with higher Total SDSC scores. Co-sleeping was not a significant factor. Sleep disturbances are more common in children with CP than in their siblings. Attention should be given to caregiver sleep when evaluating sleep disturbances in children with CP as this factor was shown to be associated with higher Total SDSC scores.

Effect of home-based light treatment on persons with dementia and their caregivers.

Sleep disorders are problematic for persons with dementia and their family caregivers. This randomized controlled trial with crossover evaluated the effects of an innovative blue-white light therapy on 17 pairs of home-dwelling persons with dementia and their caregivers. Subjects with dementia received blue-white light and control ('red-yellow' light) for six weeks separated by a four-week washout. Neither actigraphic nor most self-reported sleep measures significantly differed for subjects with dementia. For caregivers, both sleep and role strain improved. No evidence of retinal light toxicity was observed. Six weeks of modest doses of blue-white light appear to improve sleep in caregivers but not in persons with dementia. Greater or prolonged circadian stimulation may be needed to determine if light is an effective treatment for persons with dementia.

Sleep disorders in children with cerebral palsy and its correlation with sleep disturbance in primary caregivers and other associated factors.

Aims:To observe prevalence of sleep disturbance (SD) in cerebral palsy (CP) children in a specific age-group and its correlation with SD in primary caregivers and other associated factors.Materials and Methods:This was a prospective cross-sectional study. SD assessed using Sleep Disturbance Scale for Children (SDSC) in CP children and Pittsburgh Sleep Quality Index (PSQI) in caregivers. Fifty cases of clinically diagnosed CP [27 females, mean age: 107.9 ΁ 29.5 months (range: 78-180 months)] fulfilling criteria were included.Results:Eighteen (36%) children had pathological sleep total score (TS) and Disorders of Initiating and Maintaining Sleep (DIMS) was the commonest SD (n = 25, 50%). All primary caregivers were mothers. Twenty-five (50%) mothers had SD on PSQI scale. DIMS, Disorders of Excessive Somnolence (DES), and TS had significant correlation with PSQI (P < 0.05). Disorders of Arousal (DA) and TS had significant correlation with seizures (P < 0.05) in CP children. Bed-sharing had significant correlation with SD in caregivers (P < 0.001) but not with CP children. No significant correlation was observed between SD in CP and gross motor function (Gross Motor Function Classification System), use of orthoses, and dental caries.Interpretation:Children with CP have underreported significant SD, which negatively impacts caregiver's sleep also. Seizure disorders and medications contribute significantly to SD.

Sleep disturbances and predictive factors in caregivers of patients with mild cognitive impairment and dementia.

Background and PurposeWe examined the characteristics of sleep disturbances and sleep patterns in the caregivers of patients with amnestic mild cognitive impairment (aMCI) and dementia.MethodsWe prospectively studied 132 patients (60 with aMCI and 72 with dementia) and their caregivers, and 52 noncaregiver controls. All caregivers and controls completed several sleep questionnaires, including the Pittsburgh Sleep Quality Index (PSQI). The patients were administered neuropsychological tests and the neuropsychiatric inventory to evaluate their behavioral and neuropsychiatric symptoms of dementia (BPSD).ResultsThe PSQI global score was 6.25±3.88 (mean±SD) for the dementia caregivers and 5.47±3.53 for the aMCI caregivers. The Insomnia Severity Index (ISI) and short form of the Geriatric Depression Scale (GDS-S) predicted higher PSQI global scores in aMCI caregivers, and higher scores for the ISI, Epworth Sleepiness Scale (ESS), and GDS-S in dementia caregivers. BPSD, including not only agitation, depression, and appetite change in dementia patients, but also depression, apathy, and disinhibition in aMCI patients, was related to impaired sleep quality of caregivers, but nighttime behavior was not. Age and gender were not risk factors for disturbed sleep quality.ConclusionsDementia and aMCI caregivers exhibit impaired quality of sleep versus non-caregivers. ISI, GDS-S, and ESS scores are strong indicators of poor sleep in dementia caregivers. In addition, some BPSD and parts of the neuropsychological tests may be predictive factors of sleep disturbance in dementia caregivers.