Parent-reported sleep problems in school-aged children with fetal alcohol spectrum disorder: association with child behaviour,caregiver, and family functioning

Objective/backgroundSleep problems are a common clinically reported area of concern for children and adolescents with fetal alcohol spectrum disorder (FASD). However, limited empirical research has been undertaken investigating sleep problems for children with FASD. The current study aimed to examine the associations between parent-reported sleep problems in children with FASD and child behaviour, caregiver mental health and health-related quality of life and family functioning.Participants163 caregivers of children diagnosed with FASD aged 5–17 years were included in the current study.MethodCross-sectional online survey that collected information pertaining to child sleep problems (difficulty falling asleep, difficulty staying asleep and/or frequent waking during the night and waking early in the morning) and standardised caregiver reported measures of child behaviour, caregiver mental wellbeing, caregiver health-related quality of life, and family functioning.ResultsSleep problems were common, affecting 65.6% (n = 107) of participants. Difficulty falling asleep (56.4%) was the most common sleep problem encountered, followed by difficulty staying asleep (44.8%) and waking early (29.4%). Sleep problems were associated with increased rates of child behaviour problems and caregiver anxiety and negative impacts on caregiver and family quality of life.ConclusionSleep problems in children and adolescents with FASD are common and associated with poorer child, caregiver and family outcomes. Future research needs to determine whether effective identification and management of sleep problems can reduce adverse outcomes.     

Quality of life in patients with multiple sclerosis and caregivers. Predictive factors: An observational study

PurposeMultiple sclerosis (MS) is a neurodegenerative and autoimmune disease, which can significantly affect not only the quality of life (QoL) of affected people but also that of their careers who care for them. The main objective of this study was to assess the extent to which the patient's clinical, cognitive and psychological conditions affect his or her QoL and that of the caregiver.MethodsWe examined a number of patients with clinically defined MS. In this study 78 patient-assistant pairs were enrolled.ResultsOur results showed a significant correlation between the change in the patient's state of health and the quality of life of caregivers, especially in specific social and work areas. In addition, the age and the physical and mental health of patients emerged as predictive factors on the quality of caregivers.ConclusionsThis study has shown that degenerative and chronic diseases, such as multiple sclerosis, can be predictors of stress and poor quality of life for careers.Future studies should further clarify the impact that the psychological conditions of MS patients have on the quality of life of careers.     

Caregiver burden worsens in the second year after subthalamic nucleus deep brain stimulation for Parkinson's disease

BackgroundCaregiver burden (CB) in Parkinson's disease (PD) does not improve in the short term after bilateral subthalamic nucleus (STN) deep brain stimulation (DBS), despite motor improvement. This may be due to increased caregiver demands after surgery or the possibility that DBS unresponsive non-motor factors, such as executive dysfunction, contribute to CB.ObjectiveTo evaluate the trajectory of CB in year 2 following bilateral STN DBS surgery for PD, and to test whether post-operative CB changes correlate with changes in executive function in a subgroup with available neuropsychological testing.MethodsThis retrospective analysis included 35 patients with PD whose caregivers completed the Caregiver Burden Inventory (CBI) at baseline and between 9 and 24 months after bilateral STN DBS. 14 of these patients had neuropsychological testing both at baseline and within 6 months of their follow up CBI assessment.ResultsCBI scores showed worsened CB from baseline to follow-up (16.4–21.5, p = 0.006). There was no correlation between change in executive function and change in CBI in the smaller subsample.ConclusionCB worsens in the 2 years after bilateral STN DBS despite improvement in motor symptoms and is not associated with change in executive dysfunction in the setting of advancing PD. These findings have implications on pre-operative counselling for patients and caregivers considering DBS for PD.     

Caregivers of persons with Alzheimer's Disease: Cultural differences in perceived caregiver burden in Guatemala and Rhode Island

The intent of this study is to illustrate cultural differences in the amount of perceived burden for primary caregivers of persons with Alzheimer's Disease. Caregivers in Guatemala and Rhode Island were given a questionnaire exploring: caregiver well-being, available supports, traditional ideology, and perceived burden. The data indicate that Guatemalans have less institutional and more informal supports available, as compared with USA caregivers. Guatemalan caregivers brought patients to a doctor sooner after the appearance of their first symptoms (0.9±1.0 years versus 1.6±1.8 years) and had poorer perceived health than USA subjects, suggesting a higher level of caregiver burden. Cultural response bias however may account for the difference in perceived health.     

Utilising dyads in medicines optimisation and illness management research

There has been much growth in the interest in and use of family-level and dyadic level theories and methodologies to explore the influence of social relationships on health and the influence of health on social relationships. Social relationships include those with romantic partners, friends, siblings, children and care professionals these individuals play a significant role in the physical health, mental health and well-being of a patient. An important part of this includes medicines optimisation and illness management. Studying health and well-being and consideration of both partners in the context of these close social relationships is clearly important in health research; as such both partners become the unit of study – also known as a dyad. The aim of this paper is to provide an introduction and overview as to how dyads might be used in medicines optimisation and illness management research. This aim will be achieved through the following objectives: dyadic study designs used in health research; some of the challenges that can occur in recruitment and data collection and strategies that can be used to overcome them; dyadic data analysis: some methodological and substantive considerations that require consideration when using dyadic data analysis.     

What are the theoretical concepts that can be applied in therapeutic counselling?

The therapeutic counselling of chronically ill patients has been undergoing developments over the last 20 years. From an intuitive and empirical base, it has now achieved a system of standardisation that can serve as a guarantee of effectiveness. Training facilities for this specific mode of healing accept many types of practitioners who have chosen to work in this field. The most widespread theoretical constructs are essentially derived from psychopedagogical models that tend to encourage the development of knowledge and training of how to dispense treatment, while ignoring the clinical type of approach that is based on relationships. This report presents a critical assessment of the most frequently used clinical models as well as some of the more innovative approaches.     

Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings

Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers’ and dependents’ characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan.     

Quality Improvement Initiative to Reduce Nighttime Noise in a Transplantation and Cellular Therapy Unit

Sleep is an essential biologic function vital for physiologic rest, healing, and emotional well-being. Sleep disruption is commonly seen in patients and caregivers with lengthy hospital stays such as patients undergoing hematopoietic stem cell transplantation and cellular therapy (TCT). Sleep disruption can lead to increased stress and fatigue, affecting caregivers’ ability to support their loved one. The global aim of our quality improvement initiative was to improve sleep quality in TCT patients and caregivers. The smart aim of our project was to decrease nighttime hallway noise from 47 dB to 43 dB and decrease the number of overnight noise peaks greater than 60 dB from 865 to 432 in 6 months. Through a cross-sectional quantitative and qualitative evaluation of sleep we had previously identified poor sleep quality, and with a cross-sectional focus group analysis of patients, caregivers, and medical staff we identified the factors associated with poor sleep. Hallway noise was a major factor. A simplified failure mode analysis identified 4 main key drivers; unobtrusive nighttime cleaning process, nighttime awareness maintenance system, quiet nighttime nursing system, and reliable nighttime awareness system. Several plan-do-study-act interventions took place and were adopted. From January to June 2018 the overnight mean decibel level decreased from 47 dB to 44 dB (6% reduction). Overnight noise spikes above 60 dB decreased from a mean of 865 spikes to a mean of 463 spikes (46% reduction). With a quality improvement initiative, we identified the causes of hallway nighttime hospital unit noise that negatively impact sleep and through a team-based approach performed interventions that successfully mitigated these factors.     

A Meta-analytic Study of Predictors for Informal Caregiver Burden in Patients With Stroke

Background

Several studies have reported on predictors for caregiver burden in patients with stroke, but the magnitude of the impact of these variables remains unclear. The aim of the study was to determine the magnitude of relationship between each predictor and caregiver burden.

Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden

ABSTRACT

Objectives: Current research suggests that dementia care management (DCM) can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n = 317 dyads of caregivers and community-dwelling people with dementia (PwD) participated in a general practitioner-based, cluster-randomized intervention trial (Identifier:NCT01401582) with two arms and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions.

Results: Caregivers in the intervention ‘DCM’ group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e. emotional support), caregivers’ subjective burden due to behavior change (i.e. cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e. financial losses) compared to caregivers in the control ‘care as usual’ group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower family dementia caregivers' burden in multifaceted dimensions.