Greater Caregiver Burden Research Articles

Burden of caregiving after a child’s in-hospital cardiac arrest

ObjectiveTo describe caregiver burden among those whose children survive in-hospital cardiac arrest and have high risk of neurologic disability, and explore factors associated with burden during the first year post-arrest. MethodsThe study is a secondary analysis of the Therapeutic Hypothermia after Paediatric Cardiac Arrest In-Hospital (THAPCA-IH) trial. 329 children who had an in-hospital cardiac arrest, chest compressions for >2 min, and mechanical ventilation after return of circulation were recruited to THAPCA-IH. Of these, 155 survived to one year, and caregivers of 138 were assessed for burden. Caregiver burden was assessed at baseline, and 3 and 12 months post-arrest using the Infant Toddler Quality of Life Questionnaire for children <5 years old and the Child Health Questionnaire for children >5 years. Child functioning was assessed using the Vineland Adaptive Behaviour Scales Second Edition (VABS-II), the Paediatric Overall Performance Category (POPC) and Paediatric Cerebral Performance Category (PCPC) scales, and caregiver perception of global functioning. ResultsOf 138 children, 77 (55.8%) were male, 77 (55.8%) were white, and 109 (79.0%) were <5 years old at the time of arrest. Caregiver burden was greater than reference norms at all time points. Worse POPC, PCPC and VABS-II scores at 3 months post-arrest were associated with greater caregiver burden at 12 months. Worse global functioning at 3 months was associated with greater burden at 12 months for children <5 years. ConclusionsCaregiver burden is substantial during the first year after paediatric in-hospital cardiac arrest, and associated with the extent of the child’s neurobehavioural dysfunction.

Family caregivers of elderly with dementia Relationship between religiosity, resilience, quality of life and burden.

ABSTRACTThere are gaps in knowledge regarding how the family caregiver deals with the burden of caring for elderly people with dementia.Objective:To evaluate the family caregivers’ perception of quality of life (QoL), burden, resilience and religiosity and relate them with cognitive aspects and occurrence of neuropsychiatric symptoms of elderly with dementia.Methods:Data from the QoL-AD scale, caregivers’ version, burden interview, resilience scale, Beck depression inventory and PDUREL of 50 family caregivers were correlated with disability assessment for dementia, neuropsychiatric inventory and clinical aspects of 50 elderly with dementia.Results:Linear regression showed that resilience is related with better perceived QoL (p<0.001), severity of dementia (p=0.008), higher intrinsic religiosity (IR) (p=0.044) and lower occurrence of depressive symptoms (p=0.001). Increased burden of family caregivers was associated with a higher occurrence of neuropsychiatric symptoms, education of the elder with dementia, and worse perceived QoL (p<0.001). Lower level of organizational religiosity was associated with severity of dementia.Conclusion:The most resilient caregivers had higher QoL and IR, fewer depressive symptoms, and cared for elders with more severe dementia. Cognitive and sociodemographic aspects, as well as neuropsychiatric symptoms, in the elderly with dementia were associated with QoL and greater caregiver burden.

Left dorsolateral prefrontal cortex atrophy is associated with frontal lobe function in Alzheimer's disease and contributes to caregiver burden.

Caregivers of patients with dementia experience physical and mental deterioration. We have previously reported a correlation between caregiver burden and the Frontal Assessment Battery (FAB) total scores of patients with Alzheimer's disease (AD), especially regarding the dependency factor from the Zarit Burden Interview. The present study aimed to identify an objective biomarker for predicting caregiver burden. The participants were 26 pairs of caregivers and patients with AD and mild-to-moderate dementia. Correlations between regional gray matter volumes in the patients with AD and the FAB total scores were explored by using whole-brain voxel-based morphometric analysis. Path analysis was used to estimate the relationships between regional gray matter volumes, FAB total scores, and caregiver burden based on the Zarit Burden Interview. The voxel-based morphometric revealed a significant positive correlation between the FAB total scores and the volume of the left dorsolateral prefrontal cortex. This positive correlation persisted after controlling for the effect of general cognitive dysfunction, which was assessed by using the Mini-Mental State Examination. Path analysis revealed that decreases in FAB scores, caused by reduced frontal lobe volumes, negatively affected caregiver burden. The present study revealed that frontal lobe function, based on FAB scores, was affected by the volume of the left dorsolateral prefrontal cortex. Decreased scores were associated with greater caregiver burden, especially for the dependency factor. These findings may facilitate the development of an objective biomarker for predicting caregiver burden.

Caregiving Burden and self-care among European-American and Chinese-American family caregivers of people with mental illness

ABSTRACT Family caregivers (FCs) of persons with mental illness (PMI) often experience caregiving burdens that contribute to poor mental health. As compared to European-American FCs, Asian-American FCs may experience greater caregiving burden due to an increased likelihood of cohabiting with PMIs. Yet, limited research exists on the caregiving experience of Asian-American FCs and on how self-care practice and social support mediate caregiver burden among FCs of PMIs. Using a cross-sectional mixed-method design this study explored the impact of caregiving burden on mental health outcomes among Chinese-American and European-American FCs. The quantitative data showed similar caregiving burden between the two groups and a partial mediation role for self-care practice on FCs’ mental health. The qualitative data showed that FCs from the two groups utilized different types of social support. Findings suggest the need for mental health professionals to develop intervention programs to enhance self-care practices and social support for FCs when working with PMIs.

Visual hallucinations in Alzheimer's disease is significantly associated with clinical diagnostic features of dementia with Lewy bodies.

Visual hallucinations (VHs) are among the most striking features of dementia with Lewy bodies (DLB). Given that Lewy body pathology is frequently observed in the brains of patients with AD, we aimed to study factors associated with VHs in AD and examine their association with DLB features. This cross-sectional study enrolled a consecutive series of AD patients who visited the dementia clinic of a regional hospital. Clinically diagnosed possible or probable DLB cases were excluded. VH frequency and associated factors including age, sex, education, disease severity, DLB features, vascular risk factors, cognitive function, and neuropsychiatric symptoms were compared between AD patients with VHs (VH+) and those without VHs (VH−). Among a total of 295 patients analyzed, 42 (14.2%) had VHs. After adjusting for age, sex, and disease severity, DLB features including fluctuations in cognition scores, rapid-eye-movement behavioral disorder (RBD), and severe neuroleptic sensitivity were more frequent in the VH+ group. Furthermore, depression score, total Neuropsychiatric Inventory (NPI) score, and total caregiver burden score as assessed by the NPI were higher in the VH+ group. Among neuropsychiatric symptoms, delusions, hallucinations in the non-visual domains, anxiety, and disinhibition were more frequent in the VH+ group. Conversely, none of the vascular risk factors (VRFs) or cognitive domains of the Cognitive Abilities Screening Instrument (CASI) was associated with VHs in AD. In summary, VHs, albeit occurring at a low rate, had a high impact on AD. Diagnostic features of DLB, including fluctuations, RBD, and severe neuroleptic sensitivity were significantly associated with VHs in AD. AD patients with VHs tended to have more severe neuropsychiatric symptoms and greater caregiver burden.

Psychosis and Clinical Outcomes in Alzheimer Disease: A Longitudinal Study

Psychotic symptoms are a common feature in Alzheimer disease (AD), occurring in approximately 40% of patients. These symptoms are associated with worse clinical outcomes. Comparatively little research, however, has distinguished delusions and hallucinations, which may have distinct clinical, neuropathological, and genetic correlates. To address this, the current study examined the clinical outcomes associated with delusions and hallucinations in AD. Three-year observational study. Nine memory clinics in Australia. A total of 445 patients with AD. Measures of neuropsychiatric symptoms, dementia severity, cognition, function, caregiver burden, and medication use were completed annually for 3 years with additional assessments at 3 months and 6 months in the first year. Mortality data were obtained from state registries approximately 5 years after the study. Of 445 patients, 102 (22.9%) developed only delusions, 39 (8.8%) developed only hallucinations, and 84 (18.9%) developed both symptoms. Delusions and hallucinations were both associated with greater dementia severity, poorer cognition and function, higher levels of other neuropsychiatric symptoms, and greater caregiver burden. The presence of both symptoms was associated with worse outcomes than only one of these symptoms. Delusions, both by themselves and in combination with hallucinations, predicted institutionalization. Antipsychotic medication use predicted mortality. Delusions and hallucinations independently and in combination are associated with poor clinical outcomes. The findings highlight the challenges managing these patients, particularly given the high levels of caregiver burden associated with psychotic symptoms and the likely mortality arising from antipsychotic medication.

Prevalence of mild behavioral impairment in mild cognitive impairment and subjective cognitive decline, and its association with caregiver burden.

Mild behavioral impairment (MBI) describes later life acquired, sustained neuropsychiatric symptoms (NPS) in cognitively normal individuals or those with mild cognitive impairment (MCI), as an at-risk state for incident cognitive decline and dementia. We developed an operational definition of MBI and tested whether the presence of MBI was related to caregiver burden in patients with subjective cognitive decline (SCD) or MCI assessed at a memory clinic. MBI was assessed in 282 consecutive memory clinic patients with SCD (n = 119) or MCI (n = 163) in accordance with the International Society to Advance Alzheimer's Research and Treatment - Alzheimer's Association (ISTAART-AA) research diagnostic criteria. We operationalized a definition of MBI using the Neuropsychiatric Inventory Questionnaire (NPI-Q). Caregiver burden was assessed using the Zarit caregiver burden scale. Generalized linear regression was used to model the effect of MBI domains on caregiver burden. While MBI was more prevalent in MCI (85.3%) than in SCD (76.5%), this difference was not statistically significant (p = 0.06). Prevalence estimates across MBI domains were affective dysregulation (77.8%); impulse control (64.4%); decreased motivation (51.7%); social inappropriateness (27.8%); and abnormal perception or thought content (8.7%). Affective dysregulation (p = 0.03) and decreased motivation (p=0.01) were more prevalent in MCI than SCD patients. Caregiver burden was 3.35 times higher when MBI was present after controlling for age, education, sex, and MCI (p < 0.0001). MBI was common in memory clinic patients without dementia and was associated with greater caregiver burden. These data show that MBI is a common and clinically relevant syndrome.

A narrative literature review of depression following traumatic brain injury: prevalence, impact, and management challenges.

Depression is one of the most common conditions to emerge after traumatic brain injury (TBI), and despite its potentially serious consequences it remains undertreated. Treatment for post-traumatic depression (PTD) is complicated due to the multifactorial etiology of PTD, ranging from biological pathways to psychosocial adjustment. Identifying the unique, personalized factors contributing to the development of PTD could improve long-term treatment and management for individuals with TBI. The purpose of this narrative literature review was to summarize the prevalence and impact of PTD among those with moderate to severe TBI and to discuss current challenges in its management. Overall, PTD has an estimated point prevalence of 30%, with 50% of individuals with moderate to severe TBI experiencing an episode of PTD in the first year after injury alone. PTD has significant implications for health, leading to more hospitalizations and greater caregiver burden, for participation, reducing rates of return to work and affecting social relationships, and for quality of life. PTD may develop directly or indirectly as a result of biological changes after injury, most notably post-injury inflammation, or through psychological and psychosocial factors, including pre injury personal characteristics and post-injury adjustment to disability. Current evidence for effective treatments is limited, although the strongest evidence supports antidepressants and cognitive behavioral interventions. More personalized approaches to treatment and further research into unique therapy combinations may improve the management of PTD and improve the health, functioning, and quality of life for individuals with TBI.

Multidimensional determinants of the caregiving burden among Chinese male caregivers of older family members in Hong Kong

ABSTRACTObjectives: The objective of this study was to examine multidimensional determinants of the caregiving burden among Chinese male caregivers of older family members in Hong Kong. Based on a modified stress process model, this study explored how background and contextual factors (demographic characteristics and mental health status of caregivers, caregiving-related factors, and support and services), primary stressors (degree of care dependency and special care needs), and secondary stressors (self-efficacy and gender role conflict) might affect the caregiving burden among male caregivers. Method: A questionnaire survey was completed by 204 male caregivers who considered themselves as primary caregivers for older family members with care needs aged 60 and over. Descriptive, bivariate, and multivariate analyses were conducted. Results: Being the son of the care receiver, the presence of depressive symptoms, a higher degree of gender role conflict, a lower degree of caregiving self-efficacy, and the use of support and services all predicted greater caregiving burden among male caregivers. Conclusion: This study established a modified stress process model specifically for male caregivers. Gender role conflict and caregiving self-efficacy were introduced into the model as secondary stressors and found to be significantly associated with the degree of caregiving burden. The findings of this study could inform the development of services and interventions to reduce the caregiving burden among male caregivers.

Management of Depression in Parkinson’s Disease

Management of Depression in Parkinson’s Disease

Gender differences in caregiving among family - caregivers of people with mental illnesses.

All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly assuming roles as caregivers. However, the experience of men while providing care has not been explored adequately. The impact of gender on caregiving outcomes may be mediated by several other variables including patient-related factors, socio-demographic variables, and effects of kinship status, culture and ethnicity, but these have seldom been considered in the research on gender differences. Finally, it is apparent that methodological variations in samples, designs and assessments between studies contribute a great deal to the observed gender differences. This review highlights all these issues and concludes that there is much need for further research in this area if the true nature of gender differences in family-caregiving of mental illnesses is to be discerned.

Measuring the expressed emotion in Chinese family caregivers of persons with dementia: Validation of a Chinese version of the Family Attitude Scale

BackgroundExpressed emotion (EE) captures the affective quality of the relationship between family caregivers and their care recipients and is known to increase the risk of poor health outcomes for caregiving dyads. Little is known about expressed emotion in the context of caregiving for persons with dementia, especially in non-Western cultures. The Family Attitude Scale (FAS) is a psychometrically sound self-reporting measure for EE. Its use in the examination of caregiving for patients with dementia has not yet been explored. ObjectivesThis study was performed to examine the psychometric properties of the Chinese version of the FAS (FAS-C) in Chinese caregivers of relatives with dementia, and its validity in predicting severe depressive symptoms among the caregivers. MethodsThe FAS was translated into Chinese using Brislin's model. Two expert panels evaluated the semantic equivalence and content validity of this Chinese version (FAS-C), respectively. A total of 123 Chinese primary caregivers of relatives with dementia were recruited from three elderly community care centers in Hong Kong. The FAS-C was administered with the Chinese versions of the 5-item Mental Health Inventory (MHI-5), the Zarit Burden Interview (ZBI) and the Revised Memory and Behavioral Problem Checklist (RMBPC). ResultsThe FAS-C had excellent semantic equivalence with the original version and a content validity index of 0.92. Exploratory factor analysis identified a three-factor structure for the FAS-C (hostile acts, criticism and distancing). Cronbach's alpha of the FAS-C was 0.92. Pearson's correlation indicated that there were significant associations between a higher score on the FAS-C and greater caregiver burden (r=0.66, p<0.001), poorer mental health of the caregivers (r=−0.65, p<0.001) and a higher level of dementia-related symptoms (frequency of symptoms: r=0.45, p<0.001; symptom disturbance: r=0.51, p<0.001), which serves to suggest its construct validity. For detecting severe depressive symptoms of the family caregivers, the receiving operating characteristics (ROC) curve had an area under curve of 0.78 (95% confidence interval (CI)=0.69–0.87, p<0.0001). The optimal cut-off score was >47 with a sensitivity of 0.720 (95% CI=0.506–0.879) and specificity of 0.742 (95% CI=0.643–0.826). ConclusionsThe FAS-C is a reliable and valid measure to assess the affective quality of the relationship between Chinese caregivers and their relatives with dementia. It also has acceptable predictability in identifying family caregivers with severe depressive symptoms.

Associations and implications of low health literacy in Parkinson's Disease.

Low health literacy (HL) indicates a limited ability to understand and use basic information to make appropriate healthcare decisions. While low HL is associated with higher morbidity, mortality, and healthcare costs in multiple chronic conditions, little is known about HL and its associations in Parkinson's disease (PD). Cross-sectional study of non-demented adults with PD participating in the National Parkinson Foundation Parkinson's Outcomes Project at the University of Pennsylvania. Subjects were administered two brief HL assessments-the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF), a word-recognition test, and the Newest Vital Sign (NVS), a test of literacy, numeracy and understanding of health information-as well as demographic and clinical questionnaires. Adverse outcomes included falls in the 3 months preceding the study visit, and hospital admissions, emergency room visits, infections, or injuries in the preceding year. Caregiver burden was measured using the Multidimensional Caregiver Strain Index. 168 subjects completed both HL screens (mean 65.8 years, 65.5% male, 65.2% Hoehn & Yahr Stage 2). Using the REALM-SF, 97.6% of subjects had adequate HL. Using the NVS, however, 29.8% had low HL, which was associated with older age, lower education, male gender, greater disease severity, and poorer cognition. Low HL was associated with hospital admission and increased caregiver burden. Low HL is common and associated with greater caregiver burden and a higher likelihood of hospitalization in patients with PD. Since HL is associated with both disease severity and adverse outcomes, it may be an important, modifiable contributor to morbidity.

Alternative pharmacological treatment options for agitation in Alzheimer’s disease

In patients with dementia and Alzheimer’s disease (AD), treatment of neuropsychiatric symptoms (NPS) is a major concern in the management of these devastating diseases. Among NPS in AD, agitation and aggression are common with earlier institutionalization, increased morbidity and mortality, and greater caregiver burden. Pharmacological treatments for AD-related agitation, specifically off-label use of atypical antipsychotics, showed only modest improvements, with increased side-effect burden and risk of mortality. Non-pharmacological treatment approaches have become the preferred firstline option. However, when such treatments fail, pharmacological options are often used. Therefore, there is an urgent need to identify effective and safe pharmacological treatments for agitation/aggression in AD and dementia. Unfortunately, progresses have been slow, with a small number of methodologically heterogeneous randomized controlled trials (RCTs), with disappointing results. However, evidence coming from recently completed RCTs on novel or repositioned drugs (mibampator, dextromethorphan/ quinidine, cannabinoids, and citalopram) showed some promise in treating agitation in AD, but still with safety concerns. Further evidence will come from ongoing Phase II and III trials on promising novel drugs for treating these distressing symptoms in patients with AD and dementia.

Family Accommodation of Child and Adolescent Anxiety: Mechanisms, Assessment, and Treatment.

Anxiety disorders are the most common mental health concern for youth. Unfortunately, a substantial number of children and adolescents do not respond positively to current evidence-based interventions and/or relapse. As pediatric anxiety disorders are fundamentally a systemic phenomenon, focusing on the ways in which parents become involved in their children's anxiety symptoms may be a promising alternative approach to treatment. To inform psychiatric mental health nurse practitioners (PMHNPs) about the phenomenology, associated neurobiology, and assessment of family accommodation (FA) as well as clinical interventions targeting FA. FA refers to ways that parents adapt their own behaviors to reduce their children's anxiety-related distress. A literature search was performed using Psyc-INFO and PubMed. Current findings indicate a high prevalence of FA associated with pediatric anxiety disorders. FA has a potentially deleterious impact on course of illness and treatment response and is associated with greater caregiver burden. Potential neurobiological underpinnings of FA include dysregulation of parent cortico-limbic circuitry and the oxytocinergic system. PMHNPs are in a unique position to identify families engaged in problematic FA, educate their clientele, provide psychotherapy services with the goal of reducing FA, and consult with multidisciplinary team members.

Do caregiving burden and satisfaction predict loneliness in older care recipients?

Objectives: The goal of this study was to assess the extent to which caregiving burden and satisfaction of primary family caregivers in Israel predict loneliness among their older care recipients.Method: The study included a convenience sample of 325 dyads of respondents. The short version of Zarit Caregiving Burden Interview and Lawton Caregiving Appraisal measures were used to assess caregiving burden and satisfaction; the de Jong Gierveld Loneliness Scale was used to assess care recipient's loneliness.Results: The results showed that greater caregiving burden was significantly correlated with increased loneliness, whereas greater caregiving satisfaction was significantly correlated with lower levels of loneliness.Conclusion: The literature has broadly addressed the association between caregiving burden and satisfaction and the caregivers’ well-being, whereas this association with regard to care recipients’ well-being has been barely examined. The multivariate analyses showed that caregiving burden was insignificant in explaining loneliness, whereas greater caregiving satisfaction was found significant in explaining lower levels of loneliness. The results and implications for further research and practice are discussed.

Caregiver Burden for Patients with Dementia with or Without Hiring Foreign Health Aides: A Cross-Sectional Study in a Northern Taiwan Memory Clinic

Background: The aim of the present study was to determine the prevalence, profile, and severity of dementia and the relative impact of these factors on caregiver burden in a selected population of persons with dementia and their caregivers. Methods: A convenience sample of 100 outpatients and their family caregivers dyads who presented to a memory clinic in one medical center during one consecutive year were recruited. The diagnosis and severity of dementia were determined according to the Diagnostic and Statistical Manual of Mental Disorders, Version IV, Text Revision. The clinical dementia rating scale, mini‑mental status examination, and Clinical Global Impression of severity were also administered. The caregiver strain index was used to assess caregiver burden. Results: Caregiver burden is related to the severity of dementia, impairment of cognitive function, and severity of neuropsychiatric symptoms. The caregivers who were younger, nonspousal family members, had a poor relationship with the dementia patient, and psychosomatic symptoms after caring for the patient, or provided longer hours of care‑giving, experienced greater strains. Hiring foreign helpers was not associated with a lower caregiver burden. Conclusions: Greater caregiver burden is associated with several factors related to persons with dementia and their caregivers. A possible over‑burden on caregivers should be of concern in Taiwan. Hiring foreign helpers was not associated with a lower caregiver burden.

Use of Zarit Burden Interview in analysis of family caregivers' perception among Taiwanese caring with hospitalized relatives.

This study was conducted to examine the relationships between family caregivers' perception of caregiving and its influencing factors among Taiwanese with hospitalized relatives. The study used a cross-sectional and descriptive correlational design. A convenience sample of 200 primary caregivers of hospitalized patients diagnosed with cancer, stroke and chronic illness was recruited in a Taiwanese Medical Center; this focus was chosen because cancer, stroke and chronic illness generally require long term care. Data were collected by structured questionnaires. Pearson product-moment correlation and stepwise multiple regression analyses were used to analyse the results of this study. Family caregivers who lacked family support and whose patients' ADL (activities of daily living) dependency was increasing experienced a greater caregiving burden. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower caregiving burden. Quality of relationship, lack of family support and patients' ADL dependency accounted for 43% of the Zarit Burden Interview variance. The results indicated that family caregivers' perception of caregiving included sacrifice, strain, embarrassment, anger and loss of control. It is vital for nurses to understand these caregiving perceptions and their related factors to provide a holistic care plan.

Analysis of burden in caregivers of people with Alzheimer's disease using self-report and supervision hours.

This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer's disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden. GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity. 1497 community-dwelling AD patients and their primary caregivers. Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden. Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time. Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden.

Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma.

Children's health-related quality of life (HrQoL) and psychological problems are important outcomes to consider in clinical decision making in paediatric asthma. However, children's and parents' reports often differ. The present study aimed to examine the levels of agreement/disagreement between children's and parents' reports of HrQoL and psychological problems and to identify socio-demographic, clinical and family variables associated with the extent and direction of (dis)agreement. The sample comprised 279 dyads of Portuguese children with asthma who were between 8 and 18 years of age (M = 12.13; SD = 2.56) and one of their parents. The participants completed self- and proxy-reported questionnaires on paediatric generic HrQoL (KIDSCREEN-10), chronic-generic HrQoL (DISABKIDS-37) and psychological problems (Strengths and Difficulties Questionnaire). Children's and parents' perceptions of family relationships were measured with the Family Environment Scale and the caregiving burden was assessed using the Revised Burden Measure. The child-parent agreement on reported HrQoL and psychological problems was poor to moderate (intraclass correlation coefficients between 0.32 and 0.47). The rates of child-parent discrepancies ranged between 52.7% (psychological problems) and 68.8% (generic HrQoL), with 50.5% and 31.5% of the parents reporting worse generic and chronic-generic HrQoL, respectively, and 33.3% reporting more psychological problems than their children. The extent and direction of disagreement were better explained by family factors than by socio-demographic and clinical variables: a greater caregiving burden was associated with increased discrepancies in both directions and children's and parents' perceptions of less positive family relationships were associated with discrepancies in different directions. Routine assessment of paediatric HrQoL and psychological problems in healthcare and research contexts should include self- and parent-reported data as complementary sources of information, and also consider the family context. The additional cost of conducting a more in-depth assessment of paediatric adaptation outcomes can be offset through more efficient allocation of health resources.