Significant Predictors Of Caregiver Burden Research Articles

B - 17 Cognition, Social and Occupational Functioning, and Symptom Severity as Predictors on Family Burden in First Episode Psychosis

Abstract Objective Individuals with first episode psychosis (FEP) are often dependent on family members to assist with recovery following diagnosis. Family members frequently become caregivers, helping with scheduling and transportation to appointments, medication management, and tasks of daily living. However, such caregiving responsibilities can impact financial resources, employment, family routine, and cause higher rates of stress within the family. The following study examined cognitive, demographic and symptom predictors of self-reported caregiver burden in FEP. Methods Participants included 61 individuals experiencing their first episode of psychosis (26.2% female; mean age = 20.7). IQ was assessed with the WASI-II. Psychosis symptom severity over the past 7 days was assessed using the Structured Clinical Interview for DSM-5 Disorders. Demographic data and social and occupational functioning were also collected. The Family Assessment Scale was completed by the primary caregiver to assess different domains of family burden (e.g., finance, employment, recreational activities, leisure time, stigma, and emotions). Results Multiple regression analyses indicated that severity of delusions was a significant predictor of caregiver burden. However, IQ, race, age, and social and occupational functioning were not significant predictors. Conclusions Current results indicate that for FEP, delusions severity is a stronger predictor of caregiver burden than other factors expected to impact burden, such as IQ and social and occupational functioning. Results provide preliminary evidence indicating that early in the course of psychotic illness, active delusions play a key role in increased caregiver burden.

Disability and caregiver burden: Unique challenges in a developing country.

This study aimed to identify factors, including degree of disability, that contribute to the caregiver burden of raising children with cerebral palsy in Sri Lanka. Participants were caregivers of children with cerebral palsy attending the pediatric neurology clinic of the only tertiary care center in southern Sri Lanka. The locally validated Caregiver Difficulties Scale (CDS) was administered, and demographic information was obtained in a structured interview. Disability data was accessed through the medical record. Of 163 caregivers who participated in this study, 133 (81.2%) demonstrated a moderate to high level of burden, and 91 (55.8%) were at high risk for psychological burden. In the bivariate analysis, caregiver burden significantly correlated with degree of physical disability based on the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS), the presence of medical co-morbidities, and having two or more children. However, only the GMFCS level and number of children remained significant predictors of caregiver burden after controlling for confounding effects. Raising a child with cerebral palsy in Sri Lanka is likely to cause caregiver burden, particularly if they have a high level of disability or one or more siblings. Monitoring caregiver burden as part of routine cerebral palsy management is important, which allows targeting psychosocial support to families most in need.

Correlates of Caregiving Burden among Bedouin-Muslim Mothers of Children Diagnosed with Epilepsy.

A paucity of research exists on caregiving burden (CB) and the factors associated with it among minority groups, such as Bedouin mothers of children diagnosed with epilepsy (CDE). The aim of this study was to explore associations between CB and care-recipients’ characteristics, contextual factors, and caregivers’ characteristics among those mothers. Methods: A total of 50 mothers completed self-report questionnaires while visiting pediatric neurology outpatient clinic centers, using valid and reliable measures. Results: Bivariate associations were found between social support, number of medications, and CB. General self-efficacy and place of residence emerged as significant predictors of caregiver burden. Conclusions: These findings provide health professionals with a better understanding of the factors that should be assessed in order to address caregiver burden among Bedouin mothers of CDE. Understanding the unique characteristics and culture of the Bedouin community can help professionals in targeting caregivers with a lower sense of self-efficacy, and those that reside in Bedouin cities, in order to reduce their caregiving burden.

Health-Related Quality of Life, Financial and Psychosocial Impact on Parents Having Children with Nephrotic Syndrome

Background & objective: Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little has been studied about the burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses. We aimed to study the multi-dimensional impact on the quality of life (QOL) of families of children with the NS to determine the significant predictors of caregiver burden and psychological distress among caregivers of children with NS in terms of Parents HRQOL (health related quality of life), Pediatrics Health-related quality of life Family Impact Module (PedsQLTM FIM) and Family Functioning Summary Score (FaF-SS).
 Methods: This cross-sectional analytical study was conducted over a period 6 months from October 2019 to March 2020. Parents of children with diagnosed nephrotic syndrome (frequent relapsers, steroid dependent and steroid resistant), on treatment for at least one year, attending at the Outpatient and In-patient Units of Pediatric Neprology, Dhaka Medical College & Hospital (DMCH) and Dhaka Shishu Hospital were taken as cases. A total of 40 cases and 64 controls were consecutively included in the study. The control group consisted of parents of healthy age-sex matched children attending at the immunization clinic to have their children immunized. Data were collected by face-to-face interview of the parents using questionnaire of Pediatric Quality of Life Inventory 4 (PedsQLTM), Family Impact Module (FIM). PedsQL FIM is a multi-item scale comprising of 36 questions grouped under eight domains related to physical functioning, emotional functioning, social functioning, cognitive functioning, communication, worry, daily activities and family relationships.
 Results: Parents HRQOL-SS was compromised with certain aspect of their demographic characteristics. Parents with debt and widows had compromised HRQOL than the parents without debt and both of the spouses are living together (p = 0.174 and p=0.027 respectively). Parents whose children responding well to treatment had a better HRQOL than those whose children were not responding to treatment (p = 0.102). As PedsQLFIM-SS was compared between the demographic characteristics of the parents, again widows and parents with debt had significantly worse PedsQLFIM-SS (p = 0.007 and p = 0.038 respectively). Parents with debt also had impact on family functioning as evidenced by commendably reduced FaF-SS (family functioning summary score) in parents with debt than those in parents without debt (p = 0.029). There was no difference between case and control groups in terms of Parents HRQOL-SS and FaF-SS (956.8 ± 195.9 vs. 970.9 ± 287.7, p = 0.786 and 404.5 ± 87.8 vs. 391.4 ± 119.1, p = 0.549 respectively) and each of the six individual domains, except emotional functioning which was significantly poor in the case group than that in the control group (p = 0.005) Physical functioning was also considerably worse in the case group than that in the control group, although the difference was not statistically significant (p = 0.130).
 Conclusion: The study concluded that parents of the children with NS suffer from immense financial, physical and psychological burden. Burden is significantly greater for widows or when the families are in debt due to continued effort to cope with the stresses resulting from caregiving of their compromised children. Early diagnosis and treatment of parents’ burden is of utmost need to help improve parents’ health-related quality of life.
 Ibrahim Card Med J 2021; 11 (1): 28-34

Impact of Culture, Spirituality, and Mental Health Attitudes on Intergenerational Asian-American Caregivers: A Pilot Study.

Asian-Americans are more likely than other ethnic groups to care for older family members and less likely to seek mental health services. The research on caregiver burden among Asian-American intergenerational caregivers is limited. To investigate how spirituality and mental health help-seeking attitudes correlate with and predict perceived feelings of caregiver burden among Asian-American caregivers. Favorable mental health help-seeking attitudes were predicted to negatively correlate with caregiver burden, and spirituality was predicted to negatively correlate with and negatively predict caregiver burden. Quantitative survey research. Community mental health. One hundred one participants were recruited using the following inclusion criteria: Asian-Americans who currently or previously provided care to an Asian family member at least one generation older than the caregiver for at least 1 mo and in the past 3 yr. Outcomes and Measures: Items from the Burden Scale for Family Caregivers, Spirituality Scale, Expressions of Spirituality Inventory-Revised, Mental Help Seeking Attitudes Scale, and Self-Stigma of Seeking Psychological Help measured caregiver burden, spirituality, and mental health help-seeking attitudes. A statistically significant negative correlation was found between caregiver burden and spirituality and between caregiver burden and mental health help-seeking attitudes. Spirituality and number of domains of care were statistically significant predictors of caregiver burden. Spirituality was found to negatively predict caregiver burden among Asian-American intergenerational caregivers. Mental health help-seeking attitudes were negatively correlated with caregiver burden. Occupational therapy practitioners have the opportunity to integrate spirituality and culturally sensitive mental health promotion into their services to Asian-Americans. What This Article Adds: Evidence that spirituality is a negative predictor of caregiver burden for Asian-American intergenerational caregivers offers a unique opportunity for occupational therapy practitioners to offer alternative methods of mental health promotion with this population. Understanding that spirituality and mental health help-seeking attitudes are culturally mediated allows practitioners to be informed about a dynamic in Asian-American culture.

Predictors of Perceived Caregiving Burden among Caregivers of Elderly Dialysis Patients

Objectives: Elderly patients are the largest and fastest growing group of patients under dialysis and their caregivers are faced with high burden care. Therefore, the present study was conducted to determine the predictors of caregiver burden among caregivers of older patients under hemodialysis residing in Qazvin province, Iran. Methods & Materials: This cross-sectional study was conducted on caregivers older patients under hemodialysis in 2020. The caregivers were selected by census method among eligible caregivers of older patients under hemodialysis referring to dialysis centers of Qazvin Province, Iran. Data were collected using the demographic checklists, Zarit Burden Interview (ZBI) in Care, Bartell Scale, Multidimensional Scale of Perceived Social Support (MSPSS), General Self-Efficacy Scale (GSE), and Religious Coping Scale (RCOPE). The collected data were analyzed by a multivariable regression model in SPSS software v. 23. Results: The mean and standard deviation of the age of 252 caregivers and older patients were 44.9±13.16 and 69.4±7.7 years old, respectively. The results of multivariate analyses showed that significant predictors of caregiver burden were perceived social support (β=0.333, P<0.05), disability (β:-0.137, P<0.05), health status (β=0.154, P=0.010), and financial level (β=0.154, P=0.010). As the caregiver burden was decreased by increasing the social support and decreasing the rate of disability. Furthermore, the caregivers with higher financial levels and better health status reported lower caregiver burden. Conclusion: It can be concluded that enhancement of social support and more attention to the health of caregivers as potential patients are important factors for reduction of caregiver burden care.

Working Family Caregiver Well-Being: Work Impact, Workplace Supports, and Family Discord

A recent study by our team showed that family discord about care provision among multiple family caregivers was a significant predictor of caregiver burden, anxiety, depression, and activity restrictions. This study examined the combined effects of family discord, work impacts (missed work, caregiving affects work), and workplace supports (flexible hours, caregiver benefits) on caregiver well-being. We conducted a secondary analysis using cross-sectional survey data from the Western Pennsylvania Family Caregiving Project 2017-2018. Participants were family caregivers who worked outside the home and shared older adult (i.e. over age 50) caregiving responsibilities with family (n=364, mean age: 52.59 years, female: 71.7%, White: 79.7%, cared for a parent: 69.5%, mean work hours/week: 37.30). Hierarchical regression analyses were conducted testing for main effects of family discord, work impacts, and workplace supports; and interactions between discord and work impacts/workplace supports. The presence of family discord negatively impacted all caregiver well-being outcomes (p<0.05). Having more work impacts increased the risk for anxiety (p<0.04), activity restrictions (p<0.01) and burden (p<0.01). No main effects were found for workplace support. Moderating effects were found, such that anxiety was high when family discord and work impacts were higher (p=0.025). Additionally, more activity restrictions occurred when caregivers had low workplace support and higher family discord (p=0.020). Results suggest having less family discord, more workplace support, and less negative work impacts may improve caregiver well-being. Future work is needed to determine which work supports are most beneficial to this population and how family discord and negative work impacts can be reduced.

Abstract 10933: Informal Caregivers’ Burden and Its Predictors in Heart Failure: A Mixed Methods Study

Introduction: Caring for relatives with heart failure is emotionally and physically intensive for informal caregivers leading to caregiver burden. Evidence also suggests that caregiver burden affects the quality of life of both components of the patient-caregiver dyad. Previous research provides a limited understanding of the nature of caregiver burden and its influencing factors from a dyadic perspective. Hypothesis: To develop a comprehensive understanding of caregiver burden, and to identify its predictors with a dyadic perspective Methods: A convergent mixed-method approach was used. In total, 184 patients with heart failure and their informal caregivers completed validated scales to measure burden, care dependency, quality of life, and social support and 50 caregivers participated also to a semi-structured interviews to better understand the caregiver experience. Multiple regression analysis was conducted to identify the predictors and qualitative content analysis was performed on qualitative data. The results were merged using joint displays. Results: Caregiver burden was predicted by patient worse cognitive impairment, lower physical quality of life, and a higher care dependency perceived by the caregivers. Qualitative and mixed analysis demonstrated that caregiver burden has a physical, emotional, and social nature. In particular time constraints, anticipated concerns about personal future, and generalized fatigue and exhaustion were significant predictors of caregiver burden, thereby affecting their caregiving. Conclusions: Caregiver burden can affect the capability of informal caregivers to support and care for their relatives with heart failure. There is a dire need for development and evaluation of individual and community-based strategies to address caregiver burden so as to enhance the quality of life of both caregivers and their relatives with heart failure.

Burdens and predictors of the Burden experienced by Family Caregivers of Patients with Oral and Maxillofacial Tumours.

Aim:There is a dearth of knowledge on the burden of family caregivers of patients with maxillofacial tumours in Nigeria. This burden may be influenced by racial peculiarities and the disease entity of the patient. The aim of this study is to assess and document the burdens and predictors of burdens experienced by family caregivers of patients with oral maxillofacial tumours presenting at a tertiary health facility in South Western Nigeria.Materials and Methods:A descriptive cross-sectional study that included 110 consenting family caregivers of patients diagnosed with oral and maxillofacial tumours. A semi-structured questionnaire was used to collect information on their sociodemographic characteristics and caregiving burden using the Zarit burden interview tool. Data were analysed using descriptive and inferential statistics with Statistical Package for Social Sciences version 21.0.Result:The most frequent group of caregivers was patients’ children (32.0%), aged 30–39 years (28.2%), females (54.5%), with secondary education (41.8%), and traders (38.2%), who earned less than national minimum wage (55.5%). Majority (42.7%) experienced mild-to-moderate burden; coping strategy was mainly prayers (76.4%), while the greatest need expressed was financial assistance (93.6%). The significant predictors of caregiver burden were the presence of pain (adjusted odds ratio [AOR] = 2.961; 95% confidence interval [CI] = 1.165–7.526; P = 0.023) and severe clinical condition (AOR = 3.342; 95% CI = 1.133–9.853; P = 0.029).Conclusion:The most common category of the burden of family caregivers of patients with maxillofacial tumours was the mild-to-moderate category, and the most significant predictors were the presence of pain and severity of clinical condition. The greatest need expressed was financial assistance. Therefore, an emphasis on adequate pain control and alternate sources of funding may appreciably relieve the burden of family caregivers of patients with maxillofacial tumours.

Asian-American Caregivers: Factors That Influence Caregiver Burden

Abstract Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. This study surveyed 101 Asian-American caregivers of elderly people on factors that influence perceived caregiver burden. Spirituality was found to be a statistically significant predictor of caregiver burden. Furthermore, mental health help-seeking attitudes were negatively correlated with caregiver burden. This research informs OTs of the value of incorporating spirituality and mental health education with family caregivers to provide holistic, culturally competent services. Primary Author and Speaker: Yan-hua Huang Additional Authors and Speakers: Ciara Nagao, Kelsey Michelle Santos, and Madison Werchowsky

Predictors of Caregiver Burden in Huntington's Disease.

Huntington's disease (HD) is a genetic neurodegenerative condition that is characterized by cognitive, motor, and psychiatric dysfunction. The purpose of this study was to explore which disease characteristics influence caregiver burden in HD. Fifty participants with HD and 50 of their caregivers participated in the study at the University of South Florida. Participants were administered a neuropsychological battery, the Unified Huntington's Disease Rating Scale (UHDRS) motor exam, and the Frontal Systems Behavior Scale (FrSBe) self-report. Caregivers completed the Caregiving Appraisal Scale and the FrSBe family-report. There were significant correlations between caregiver burden and caregiver age and sex, UHDRS motor scores, cognitive functioning, and self and caregiver-reported FrSBe scores. The significant variables were entered into a regression model and explained 63.1% of the variance in caregiver burden scores. Caregiver age, cognitive functioning, and caregiver-reported FrSBe scores continued to be significant predictors of caregiver burden, whereas the other variables were no longer significant. There were significant relationships between caregiver burden, cognitive functioning, and frontally mediated behaviors, but not motor scores. The results suggest that possible interventions for caregivers may include education to caregivers on how to cope with apathy/executive dysfunction and cognitive decline. Caregiver age was associated with burden, with younger age being associated with increased burden when controlling for symptom severity. This has implications for this population in that HD typically has a younger age of onset than other neurodegenerative diseases and therefore, these caregivers may be particularly at risk for caregiver burden.

Problem-focused coping underlying lower caregiver burden in ALS-FTD: implications for caregiver intervention

Objective: Amyotrophic lateral sclerosis (ALS) is a multisystem neurodegenerative disorder which includes cognitive and behavioral symptoms akin to frontotemporal dementia (FTD). Despite the necessity of caregiver intervention to assist with the management of cognitive and behavioral symptoms, there has been a lack of research on the topic. A focus on caregiver coping may offer a promising foundation to guide the development of interventions as part of ALS care. Accordingly, the aim of the present study was to examine the relationships between caregiver coping, psychological morbidity and burden of care in the context of ALS cognitive and behavioral symptoms. Methods: Fifty-five patient-caregiver dyads were recruited from specialized ALS and FTD clinics. Specific coping strategies were examined using the COPE Inventory/Brief COPE and psychological morbidity and burden were assessed using the Depression, Anxiety, and Stress Scale–21 and Zarit Burden Interview. The relationship between coping, psychological morbidity and burden of care were analyzed using univariate and multivariate methods. Results: High-burden caregivers were more likely to be caring for patients with a diagnosis of ALS-FTD (p =.0001). Caregivers used problem-focused strategies (particularly planning) more frequently (M = 71.4, SD = 15.3) compared to emotion-focused (M = 60.8, SD = 12.3) and dysfunctional coping strategies (M = 42.2, SD = 8.6). A diagnosis of ALS-FTD (p=.0001) and problem-focused strategies (p=.024) emerged as significant predictors of caregiver burden. Caregiver anxiety, depression and stress were not predictive of caregiver burden (p=.151). Conclusions: Timely provision of caregiver support optimizing problem-focused coping strategies as part of multidisciplinary ALS care, particularly for caregivers of ALS-FTD patients may mitigate caregiver burden.

Family caregiver's burden and the social support for older patients undergoing peritoneal dialysis.

Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors. This was a cross-sectional study employing convenience sampling. Patient-caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health-related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden. Sixty patient-caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R2 = 0.46, p < 0.001). Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted.

Determinants of caregiver burden in heart failure: does caregiver contribution to heart failure patient self-care increase caregiver burden?

The burden is high in caregivers of heart failure patients, but the literature on patient and caregiver predictors of caregiver burden is inconsistent. Also, it is unknown if caregiver contribution to heart failure self-care maintenance (i.e. helping patients to maintain heart failure stable) and self-care management (i.e. helping patients to act in case of heart failure worsening) increases caregiver burden. To identify caregiver and patient predictors of caregiver burden in heart failure; and to evaluate if caregiver contribution to heart failure self-care maintenance and management increases caregiver burden. A cross-sectional study with the enrolment of 505 caregivers of heart failure patients. We used the caregiver burden inventory and the caregiver contribution to self-care of heart failure index. We analysed the data using hierarchical regression. Heart failure caregivers, mostly women (52.5%), with a mean age 56.5 (±14.9) years, cared for heart failure patients, mostly men (55.2%), with a mean age of 75.9 (±10.4) years. Caregiver predictors of higher caregiver burden were older age, female gender, fewer caregiving hours and poor social support. Patient predictors of higher caregiver burden were older age, better education, taking fewer medications and higher quality of life. Caregiver contribution to self-care maintenance and management were not significant predictors of caregiver burden. Our results could help providers to identify heart failure caregivers who are more exposed to burden. As caregiver contribution to heart failure self-care improves patient outcomes and seems not burdensome for caregivers, providers may consider educating caregivers about self-care as a viable option for improving patient outcomes without increasing caregiver burden.

Examination of Care Burden and Stress Coping Styles of Parents of Children with Autism Spectrum Disorder

ObjectiveThe study was conducted to examine the caregiver burden and stress coping styles of parents of children with Autism Spectrum Disorder (ASD). Design and methodsThis descriptive cross-sectional study was conducted with parents of 131 children with ASD who were enrolled in a private education practice center in Istanbul between August 2015 and August 2016. The data were collected using a questionnaire prepared by the researchers, and the “Caregiver Strain Index” and “Ways of Coping Questionnaire.” ResultsThe mean age of the children in the sample group was 4.83 ± 0.99 years; 63.4% were boys. Nearly 40% (38.2%) were diagnosed as having ASD at the age of 2 years. It was determined that the parents of children with ASD had a higher burden of care (CSI mean score: 7.68 ± 4.30). The caregiver burden was significantly higher (p < 0.05) for parents of one child as compared to parents with more children, and parents with daughters compared to parents with sons. In addition, the mothers were found to have higher scores of ‘submissive approach’ and ‘seeking social support’ than fathers. ConclusionParents of children with ASD had a higher caregiver burden. Scores of approach types of self-confident, helpless, optimistic, and seeking social support were significant predictors of caregiver burden. Practice implicationsNurses are encouraged to take a more active role to improve the health of children with autism and families should contribute to mitigating the burden care of parents by informing families about social support systems.

Predictors of caregiver burden and care costs for older persons with dementia in Taiwan.

This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.

Psychological impact on caregivers of HIV-infected children in Udupi district, Karnataka

ABSTRACTCaregivers of children living with HIV/AIDS (CLWHA) face unique challenges due to disease-related stigma and discrimination, isolation from society, financial constraints, grief and mortality of loved one. A descriptive cross-sectional study was conducted at Udupi ART centre to assess the caregiver burden, psychological distress and their associated factors among the caregivers of CLWHA in Udupi District. The convenience sampling technique was used to collect the data from 171 caregivers and analysed with the help of SPSS version 15.0. Majority of caregivers were female (64.9%) with mean age of 38.1 ± 9.6 years. About 64.3% caregivers were HIV-positive and 63.2% were biological parents of CLWHA. Mild-to-severe caregiver burden on Zarit Burden Inventory (ZBI) was reported among 84.8% of caregivers, and mild-to-severe psychological distress on General Health Questionnaire (GHQ-12) was reported among 49.7% caregivers. Relationship with child was found to be a significant predictor of caregiver burden as compared to other relatives/foster (P < 0.001). Relationship with child (P 0.004), Alcohol use (P 0.008) and Schooling of children (P 0.049) were reported as significant predictors of psychological distress. Study concludes that caregiver burden and psychological distress were high among caregivers of CLWHA. Psychological problems of caregivers need to be addressed and integrated along with the clinical care of HIV-infected children at ART centres.

Caregiving in ALS - a mixed methods approach to the study of Burden.

BackgroundCaregiver burden affects the physical, psychological and emotional well-being of the caregiver. The purpose of this analysis was to describe an informal caregiver cohort (n = 81), their subjective assessment of burden and difficulties experienced as a result of providing care to people with Amyotrophic Lateral Sclerosis (ALS).MethodsUsing mixed methods of data collection and analysis, we undertook a comprehensive assessment of burden and difficulties associated with informal caregiving in ALS. As part of a semi-structured interview a series of standardised measures were used to assess quality of life, psychological distress and subjective burden, and in an open-ended question caregivers were asked to identify difficult aspects of their caregiving experience.ResultsThe quantitative data show that psychological distress, hours of care provided and lower quality of life, were significant predictors of caregiver burden. From the qualitative data, the caregiving difficulties were thematised around managing the practicalities of the ALS condition, the emotional and psychosocial impact; limitation and restriction, and impact on relationships.ConclusionsThe collection and analysis of quantitative and qualitative data better explores the complexity of caregiver burden in ALS. Understanding the components of burden and the difficulties experienced as a result of caring for someone with ALS allows for better supporting the caregiver, and assessing the impact of burden on the care recipient.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0153-0) contains supplementary material, which is available to authorized users.

Neuropsychiatric symptoms in dementia may predict caregiver burden: a Sicilian exploratory study.

Behavioural and psychological symptoms of dementia are very common. They represent a main cause of burden and distress in caregivers and can lead to early institutionalization of patients. We aimed to find the most specific behavioural and psychological symptoms of dementia that can strongly affect the caregivers' burden. Twenty-seven patients and their caregivers were enrolled in this study. All of the patients were affected by Alzheimer's, vascular, or frontotemporal dementia and were evaluated with the Neuropsychiatric Inventory and Mini-Mental State Examination. Caregivers were administered the Caregiver Burden Inventory. Apathy, depression, anxiety, and agitation were the most common symptoms and were found in up to 90% of the patients. We detected strong correlations between patient neuropsychiatric symptoms, (i.e. irritability, hallucinations, aberrant motor behavioural, depression, and agitation) and Caregiver Burden Inventory scores. Multiple regression analysis found hallucinations, irritability, and depression to be significant predictors of caregiver burden. Moreover, the Neuropsychiatric Inventory score was more closely related to caregiver burden than the Mini-Mental State Examination score. Our results revealed that demented patients' behavioural problems are related to the level of caregiver burden and distress. Further investigations are needed to differentiate the present findings among dementia subtypes and to better evaluate the effect of caregivers' personal characteristics on their own burden.

The impact of caregiver coping strategies and patient level of functioning on perception of caregiver burden among caregivers of persons living with HIV/AIDS in Kenya

ABSTRACTThere exists little research on caregiver burden among persons caring for family members with HIV/AIDS in Kenya. Research suggests that coping strategies affect the perception of caregiver burden and caregiver burden increases as a patient’s condition deteriorates. This study investigated the impact of coping strategies and activities of daily living on caregiver burden among Kenyans caring for family members living with HIV and AIDS. There was a statistically significant difference on two items of the Caregiver Burden Inventory based on patient’s total Activities of Daily Living (ADL) score. When ADLs were considered separately, there were no significant differences in caregiver burden by ADL scores. The combined coping scales on the Brief COPE were a significant predictor of caregiver burden. Self-blame, substance use, and behavioral disengagement were significantly related to caregiver burden. Implications for counselors, social workers, and researchers are discussed.