Caregiver Burden Research Articles

Burden of care in caregivers of patients with schizophrenia in Greater Noida, U.P., India.

Schizophrenia is a serious mental illness that causes major functional impairments, raises the risk of disability, and reduces life expectancy. It affects around 7 in 1000 people b/w the age of 15 and 35 years. Schizophrenia poses a great challenge not only for the patient but also for the people and the society around the patient. Family members who serve as informal primary carers may suffer personal expenses as a result of providing care for those who have major mental illnesses. One outcome that is regularly studied is the caregiver burden or the challenges encountered in providing care. Burden of care in caregivers of patients with schizophrenia in Greater Noida, U.P, India. This cross-sectional study was carried out at the School of medical sciences and Research, Sharda University. We enrolled 100 caregivers and it is assessed through the burden assessment scale. Caregivers ranged in age from 20 to 85, with a mean age of 47 (SD=14.1). The male-to-female ratio was 1.7, with 63 men and 37 women present. The majority of the caregivers were parents (n=54), siblings (n=9), spouses (n=10), or their children (n=5). On the burden assessment scale, the severity of the burden was found on the basis of mild, moderate, severe, and very severe. It is important to understand the mental health of caregivers in order to develop an appropriate intervention to deal with their mental health problems. Therefore, this study highlighted the need for psychological interventions not only for the patients but also for caregivers.

Family Caregivers of Cancer Patients: Burdens and Support Preferences of Partner, Parent and Adult-Child Caregivers.

The aim of this study is to (1) identify similarities and differences in psychosocial burdens and support needs experienced by parent, partner and adult-child caregivers and (2) identify support needs of family caregivers regarding peer support programs. Semi-structured interviews (n=30) were conducted with family caregivers of cancer patients. Interviews were transcribed and analyzed by inductive content analysis to identify themes. Ten categories of burden were identified for all three groups of caregivers. Partners emphasized the time burden through caregiving, parents and adult-child caregivers accentuated the emotional burden. All caregivers wished for peer-to-peer exchange which will provide the feeling not to be alone, to share emotions and to prepare for what will come next. Preferences for matching with peers with similar prognosis for their sick relative and similar living conditions were found. Partner, parent and adult-child caregivers describe similar burdens of caregiving. They wish for peer support programs that allow them to share their experiences with persons who understand their situation. Therefore, caregivers desire a good match with peers to enhance the positive outcome of peer exchange.

Caring for Persons with Alzheimer's Disease during a Pandemic

The population experiencing Alzheimer's disease (AD) and their caregivers have been tremendously impacted by the global COVID-19 pandemic. Outpatient services became less accessible during the pandemic lockdown which caused increased caregiver burden more than usual. Further examination discovered that caregivers were unable to properly take care of themselves because of the need to provide around-the-clock care to loved ones, who pre-pandemic were able to receive supplemental caregiving services. The purpose of this integrative review was to provide a synthesis of information regarding caregiver experiences, during a time of limited resources, such as with the COVID-19 global pandemic. A comprehensive search of the literature databases Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline was completed yielding qualitative and mixed-methods studies. The literature search yielded 14 articles which met the criteria. Three themes emerged during this review. They include: Deprivation of self-care and social connectedness, Fragmented care and resources, and Improved policy development. Multiple gaps in caregiver needs have been identified throughout the literature. Outpatient services, home health aides, and respite care remain necessary elements of care for those with AD and for the relief of the caregiver. Forward planning should include government policies to support caregiving of those with AD, especially in the light of service restrictions or unavailable services.

Care Burden and Psychological Resilience of Mothers Accompanying Their Children with Chronic Illnesses Hospitalized in Pediatric Wards

Abstract Background: Psychological resilience plays a pivotal role in managing the caregiving burden experienced by mothers of hospitalized young children with chronic illnesses. The resilience of these mothers is not only critical for their own mental health but also for the well-being and development of their child. Aim: This study aimed to assess the care burden, psychological resilience, and associated factors of mothers with hospitalized children aged 0-2 years who have chronic diseases. Materials and Methods: The participants included 134 mothers of hospitalized children. Data were gathered utilizing a personal information form, the Zarit Burden Interview, and the Brief Resilience Scale. Results: Working mothers with a bachelor’s degree had higher Zarit Burden Interview scores than non-working mothers. Mothers of children with epilepsy and neurological diseases had higher Zarit Burden Interview scores than those with other chronic diseases. Mothers receiving instrumental and spiritual support had significantly higher Brief Resilience Scale scores. Discussion: Among mothers who accompany their children with a chronic illness diagnosis in the hospital, those who are university graduates, employed, or have children diagnosed with epilepsy and neurological diseases are particularly at risk in terms of the burden of care and psychological resilience. Conclusion: Physicians and especially pediatric nurses can enhance the psychological resilience of these mothers identified as a risk group in this study and alleviate their care burden by providing instrumental and moral support in the clinical setting. The support given to these accompanying mothers can contribute more significantly to the child's quality of life and care.

Virtual Reality Combined With Psychoeducation to Improve Emotional Well-Being in Informal Caregivers of Alzheimer's Disease Patients: Rationale and Study Design of a Randomized Controlled Trial.

Care for community-dwelling people with dementia is frequently delegated to relatives, who find themselves in the role of informal caregivers with no practical management knowledge. This situation exposes caregivers to increased risk for emotional wellbeing. The current study aims to test whether the integration of the efficacy of an immersive virtual reality (VR) experience into an online psychoeducational program impacts caregiver empathy and therefore emotional wellbeing. One-hundred informal caregivers of mild-to-moderate Alzheimer's disease (AD) patients will be enrolled and randomly assigned to (i) an online psychoeducational program (control arm); or (ii) an online psychoeducational program integrated with VR (experimental arm). VR will consist of 360-degree videos involving the caregivers to an immersive experience of dementia symptoms from the patient's perspective. Before, after the intervention and after 2months, all participants will complete validated clinical scales for caregiver burden and anxiety (primary outcomes) and sense of competence and dispositional empathy (secondary outcomes). A subsample of 50 participants will also undergo MRI exam, including structural and functional (resting-state and task-functional MRI [fMRI]) sequences. The fMRI task paradigm will use emotional stimuli to evaluate the neural correlate of empathy, by stressing its cognitive and affective components. The main outcome will be the change in the clinical assessment; the secondary outcome will be the change in brain connectivity of networks subserving the empathic and emotional functioning. We expect that the psychoeducational program will decrease anxiety and stress, enabling caregivers to perceive themselves capable of managing AD patients at home, educating them on symptom handling and boosting their cognitive empathy. In the experimental intervention, the VR-based experience will act as an add-on to psychoeducation, leading to greater improvement in the assessed clinical dimensions. VR should, in fact, enable a deeper understanding of disease symptoms and improve caregivers' cognitive empathy. We expect that the experimental intervention will result in deeper comprehension of disease symptoms and further strengthen caregivers' cognitive empathy. At the neural level, we expect to observe increased activation in circuits subserving cognitive empathy and decreased activation in circuits underlying affective empathy. To the best of our knowledge, this will be the first randomized controlled trial assessing the effect of combining psychoeducational interventions with VR-based experience in caregivers, and assessing both clinical and imaging outcomes. Registered in ClinicalTrials.gov (NCT05780476).

Psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) with Type 1 Diabetes and Their Parents (P-PAID-C).

Children with Type 1 diabetes (T1D) and their parent-caregivers often experience diabetes distress due to the daily demands of diabetes management. Regular screening for diabetes distress is needed to prevent the deterioration of metabolic control and the development of mental health disorders. The aim of this analysis was to examine the psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) and for caregiver burden in Parents (P-PAID-C). Data were collected from 136 children aged 7-12 years (46.7% females) and 304 parents (Mage = 42.9 (SD 6.1) years; 78% mothers) by using linguistically translated questionnaires in a multicenter study. Confirmatory factor analysis and correlational analyses were conducted. Results confirmed the two-factor model for the PAID-C and the four-factor model for the P-PAID-C with a slight modification. Cronbach's αs for children and parents were 0.88 and 0.92, respectively. The PAID-C and P-PAID-C scores had small positive associations with HbA1c (rs = .220 and .139, respectively, all p < .05) and strong inverse association with the KIDSCREEN-10 index (r = -.643 and -.520, respectively, all p < .001). P-PAID-C scores increased with increasing depressive symptoms measured in nine-item Patient Health Questionnaire among parents (rs = .534, p < .001). The scores produced by the German PAID-C and P-PAID-C were reliable and valid in measuring diabetes burdens. These German versions of PAID can be utilized to assess diabetes-specific distress and to design interventions for children and their parents experiencing high levels of diabetes distress. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

The perceptions and experiences of caregivers of patients with dysphagia: A qualitative meta-synthesis.

To understand the perceptions and experiences of family caregivers of adult patients with dysphagia. Dysphagia is a common symptom and burdens caregivers greatly. There is a growing body of studies concentrating on caregivers and caregiving experiences. However, no qualitative meta-synthesis has been conducted to explore the perceptions and experiences of family caregivers. A qualitative meta-ethnography. A search was conducted for relevant articles in six electronic databases (PubMed, Web of Science, CINAHL, Ovid, Cochrane Library, ProQuest) and two Chinese databases (CNKI, Wanfang Data) from inception to February 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to evaluate study quality. The meta-ethnographic method was used to synthesize data from qualitative studies. The study was reported according to EQUATOR guidelines. Eleven studies were included and three themes emerged: (1) emotion and perception, (2) change and challenge (3) adaption and coping. This review highlighted the challenges and positive coping experienced by caregivers. Findings directly inform the development and implementation of supportive interventions to reduce caregivers' stress and promote adaptive coping. Pay attention to the needs of family caregivers of dysphagia. Family caregivers' perceived severity of dysphagia requires assessment. Caregivers need knowledge, support, and guidance to reduce their burden and fulfill their role.

The Effect of Home Education Provided to Caregivers of Children with Cancer on Caregiving Burden, Depression and Life Satisfaction

Aim: In this study; It was aimed to reduce the care burden, decrease depression levels and increase life satisfaction by providing training to the caregivers of children with cancer. Method: The research was designed as pre-test post-test, single group and semi-experimental. The target population of the study consisted of family members who give care for children with cancer patients. The study was conducted with 30 family members between May 2017 and September 2018, without using the sampling method, who met the criteria for participation in the study. "Information Forms Describing Patients and Caregivers, Caregiving Burden Scale, Beck Depression Scale and Life Satisfaction Scale" were used in data collection. In analysis the data; percent distribution and t test in independent groups was used. Results: In the study, the caregivers' total mean score on the Caregiving Burden Scale was found to be 53.63±11.67 before the training and 44.76±6.99 after the training. Beck Depression Scale total score average before 13.23±5.01 and after training It was found to be 9.03±3.66. The mean total score of the Life Satisfaction Scale was found to be 20.16±7.01 before the training and 25.23±5.22 after the training. These differences between the average scores were determined to be statistically significant (p&amp;lt;0.01). Conclusion: It has been found that education given to caregivers of children with cancer is effective in reducing the burden on caregivers, decreasing their depression levels, and increasing their life satisfaction.

The experiences of adult children caring for a parent with Korsakoff’s syndrome

Background: Korsakoff’s syndrome (KS) is a debilitating psychoneurological disorder that can occur in adults with alcohol use disorder (AUD). People with KS experience a sudden onset of symptoms including confabulation, anterograde and retrograde amnesias, apathy, issues with vision and gait, and lack of insight. Frequently an adult child of the parent with alcohol-induced KS becomes the caregiver, regardless of the status or quality of the relationship with their parent. While there is a rich literature base in the areas of adult children of parents with AUD and caregiving, there are no studies that have explored the experiences of adult children caring for a parent with alcohol-induced KS. This study aimed to explore the experiences of adult children who provide care for a parent or parental figure suffering from alcohol-induced Korsakoff syndrome (KS). Method: This study used a generic qualitative approach with thematic analysis using both in person and web-based video interview methods and field notes to address this gap in the literature. Eight individuals participated in the study, men (n=2) and women (n=6), with participants ranging in age from 31 to 43 years (average age 37 years). Results: Five themes emerged: addiction and the adult child, experiencing caregiver burden, experiencing a variety of emotions, professional healthcare experiences, and observations of symptoms. These themes emerged over seven anchor events in their caregiving experiences: interactions with their parent pre-diagnosis, parent’s medical emergency, hospitalization, diagnosis, housing, legal, and financial. Conclusion: The results provide a foundation for future research in the areas of KS, caregiving, and adult children of parents with AUD. They also provide a basis to inform the development of interventions with this population and demonstrate a need for more awareness of KS among healthcare professionals.

Predicting informal dementia caregivers’ desire to institutionalize through mining data from an eHealth platform

BackgroundDementia is a leading factor in the institutionalization of older adults. Informal caregivers’ desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers’ DI by mining data from an eHealth platform in a high-prevalence dementia country.MethodsCross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions.ResultsCaregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers’ perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1–2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86).ConclusionsThis study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing.

Psychosocial burden in mothers with epilepsy and their caregiver: Feasibility and preliminary results of a digital screening procedure

ObjectiveThe present study aims to evaluate the feasibility of utilizing a digital procedure to screen for anxiety and depression as well as impairments in psychosocial aspects, such as social support, social activity and quality of life (QoL) in women with epilepsy (WWE) after childbirth. Furthermore, the study intends to digitally screen for burden of the respective caregivers in WWE compared to a healthy control group. Materials and methodsThis comparative cross-sectional study was conducted in the post-partum period on 30 WWE and 33 healthy controls who gave birth between 01/2018 and 05/2021. Additionally, 24 caregivers of WWE and 26 caregivers of healthy mothers took part in this study. Information on psychosocial health and psychosocial burden was collected digitally using the short version of the Social Support Questionnaire, the Social Activity Self-Report Scale and the Hospital Anxiety and Depression Scale. The caregiver burden was digitally assessed with the Zarit Burden Scale in its German adaptation (i.e., Zarit Burden Interview and the Family Burden Questionnaire). Furthermore, QoL was assessed with the QOLIE-31 (Quality of Life in Epilepsy Inventory) in WWE and with the Life Satisfaction Questionnaire in healthy controls. ResultsWhen comparing WWE and healthy controls, the groups were comparable on psychosocial aspects, such as self-reported social support, anxiety, depression and social activity, when assessed with self-report measures in a digital screening procedure.Although not significantly different between groups, anxiety, depression, self-reported social support and social activity were correlated with overall QoL in both, WWE and healthy controls.Caregivers of WWE and healthy controls were neither significantly different in their objective burden nor in their subjective burden as reported in digitally applied self-report measures. ConclusionAlthough not significantly different between groups, given the correlation between psychosocial aspects and QoL, it is worthwhile to include these aspects in standard clinical screening extending beyond the screening of anxiety and depression in WWE.Overall, the preliminary psychosocial data presented in this study suggest that a digital assessment of psychosocial burden seems reasonable in WWE and warrants integration into further research and clinical practice.Nevertheless, since no significant differences concerning psychosocial aspects were found in the present study, one may argue that highly specialized clinical care, as provided in the present study, may counteract potential psychosocial impairment experienced by WWE who do not receive such specialized care.Hence, further investigations outside of specialized outpatient clinics as well as prospective investigations of subjective factors that may dynamically change during pregnancy ought to be addressed in clinical practice and research for improving care during and after pregnancy in WWE.

Look on the bright side: the relation between family values, positive aspects of care and caregiver burden

Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care.

Burden and dimension of social quality of life related to Disaster Preparedness among family Caregivers with chronic kidney disease

Bacground: Caregivers of chronic diseases patients have an important role in emergency and disaster preparedness. However, the lack of understanding of the relation of the caregiver’s burden, dimension of quality of life, and disaster preparedness for personal caregivers with chronic kidney disease. Aim: This study aimed to examine caregivers' burden, dimension of quality of life, and disaster preparedness of personal caregivers with chronic kidney disease. Methods: A Cross-sectional study design was adopted in this study. Accidental sample approach was used from January up to April 2024. The Zarit Burden Interview (ZBI), the World Health Organization Quality of Life-Brief Version (WHOQOL-BREF), and the Disaster Preparedness Evaluation Tool Indonesian Version (DPET-I) were used to assess the study variables. Linear regression was used to examine caregivers' burden, dimension of quality of life and, disaster preparedness of family caregivers of chronic kidney diseases patients. Results: Sixty family caregivers were included in this study with a family caregiver mean aged 51.8 years old. Sixty percent are male family caregivers. There were significant factors such as caregiver burden (β=0.45; p=0.008) and social dimension of the quality of life (β=0.19; p=0.04) for disaster preparedness of family caregivers with chronic kidney disease. Conclusions: The caregiver’s burden and the social dimension of quality of life confirmed the factor associated with disaster preparedness of family caregivers with chronic kidney disease. Burden care and, social dimension of quality-of-life management for caregivers and, including family caregivers for the education of disaster preparedness are recommended to increase disaster preparedness of family caregivers with chronic kidney disease.

Self-care in patients affected by inflammatory bowel disease and caregiver contribution to self-care (IBD-SELF): a protocol for a longitudinal observational study

IntroductionSupporting patient self-care and the contribution of their caregivers is crucial in chronic illness care. Inflammatory bowel disease (IBD) is a chronic condition whose prevalence is expected to double, especially...

Caregiver Experience Survey of Anti-Vascular Endothelial Growth Factor Treatment for Diabetic Macular Edema and Neovascular Age-Related Macular Degeneration

Introduction: Diabetic macular edema (DME) and neovascular age-related macular degeneration (nAMD) require frequent anti-vascular endothelial growth factor (VEGF) treatment and monitoring visits. We aimed to understand the burden of treatment on caregivers. Methods: This multinational, noninterventional study used a cross-sectional survey of adult patients with DME or nAMD treated with anti-VEGF injections in the USA, Canada, France, Italy, Spain, and the UK. The survey assessed caregivers’ sociodemographic characteristics, patient relationships, patients’ clinical history and treatment experiences, caregivers’ experiences, and the Caregiver Reaction Assessment of caregiving burden. Results: Caregivers for patients with DME (n = 30) and nAMD (n = 95) completed surveys. Mean ± standard deviation (SD) age was 64.0 ± 13.4 years, and most were female (71.2%), white (70.4%), married (66.4%), and from Europe (67.2%). Most were caring for their mother/father or partner/spouse (85.6%). Mean ± SD length of time as a caregiver was 9.1 ± 10.0 years. Caregivers estimated they provided support for 4.2 ± 2.9 days/week and 6.0 ± 7.1 h/day on average. Nearly half of caregivers (45.6%) reported some impairment in daily activities, and more than two-thirds (70.5%) of working caregivers (n = 44) reported work absenteeism due to anti-VEGF treatment/monitoring appointments. At least one treatment barrier was reported by 66.7% and 50.5% of caregivers of patients with DME and nAMD, respectively, which were related to coronavirus disease 2019- (38.4%), clinic- (18.4%), social-/health- (13.6%), treatment- (10.4%), or financial-related factors (4.8%). Caregiver Reaction Assessment scores indicated mild-to-moderate burden, with higher caregiver schedule disruption scores associated with an increasing number of anti-VEGF treatment/monitoring visits among DME caregivers (r = 0.61). Conclusion: Caregivers devote substantial time to caregiving, leading to schedule disruptions and absenteeism for some working caregivers. Positive and negative impacts on caregiver mental health were reported.

A systematic review and meta-analysis of randomized controlled trials to reduce burden, stress, and strain in informal stroke caregivers

Objectives To understand the nature and effectiveness of interventions aimed at improving informal stroke caregiver burden, stress, and strain. Data sources In line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, a systematic search of CENTRAL, CINAHL, MEDLINE, Embase, APA PsycInfo, and Web of Science was conducted in May 2022. Review methods Studies were eligible if they included an intervention designed for informal stroke caregivers, reported on caregiver burden, strain, or stress, were published in English, and used a randomized controlled trial design. An updated search was conducted in June 2024. The methodological quality of studies was appraised using the Cochrane risk-of-bias tool for randomized trials. The data were pooled, and a meta-analysis was completed for caregiver burden and strain outcomes. Results Nineteen studies met inclusion criteria and were meta-analyzed. Interventions ranged from 4 days to 12 months. Most studies incorporated educational and/or support components. Meta-analyses revealed nonsignificant effects on caregiver burden or strain. Significant between-group differences for caregiver strain and burden were, however, found in seven studies. Conclusion Limited studies, small sample sizes, and conflicting results made definitive conclusions on the most effective intervention characteristics for improving caregiver outcomes difficult. Of the 19 studies, seven found significant between-group differences for caregiver outcomes postintervention, and these tended to incorporate educational components and comprised between seven and nine sessions. Further high-quality research is required to identify optimal format, duration, and frequency for improving caregiver outcomes.

Geographical location as a determinant of caregiver burden: a rural-urban analysis of the informal caregiving, health, and healthcare survey in Ghana

BackgroundThe caregiving scholarship widely acknowledges informal caregivers’ contributions to maintaining older adults’ health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana.MethodsThis study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less.ResultsThe results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (β = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: β = 12.63; SE = 1.65; fair: β = 9.56; SE = 1.07; good: β = 11.00; SE = 0.61, very good: β = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: β = 13.88; SE = 2.4; fair: β = 6.11; SE = 1.62; good: β = 9.97; SE = 0.96, very good: β = 6.06; SE = 0.71) and urban (poor/very poor: β = 11.86; SE = 2.25; fair: β = 12.33; SE = 1.42; good: β = 11.80; SE = 0.79, very good: β = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (β = -2.92, p-value < 0.01) and for both rural (β = -3.20; p-value < 0.01) and urban (β =-2.70; p-value < 0.01) participants.ConclusionThe findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries.

Caregiver burden and depression among lesbian, gay, bisexual, and other nonheterosexual individuals in the United States: Analysis of BRFSS 2015–2018

AbstractThe number of caregivers in the US continues to rise. However, the epidemiology and mental health among lesbian, gay, bisexual, and other nonheterosexual (LGB+) caregivers remain unknown. We aimed to characterize the epidemiology of caregiving burden/information among LGB+ caregivers in the United States, as well as to examine depression and related risk factors. By using the data from the 2015–2018 Behavioral Risk Factor Surveillance System (BRFSS), we conducted weighted hierarchical logistic regression models to explore the associations between depression, caregiving information, health behaviors, sex, and sexual orientation among an estimated population of 9,521,313 LGB+ caregivers. Among the caregivers aged 18–79 years, 4.81% identified as LGB+. Notably, 19.21% of the caregivers reported experiencing depression, with distinctive rates observed among male LGB+ caregivers and female LGB+ caregivers were 38.22% and 51.43%, respectively. Meanwhile, nearly 45.00% of male LGB+ caregivers offered care to nonrelatives, a significantly higher rate compared to their heterosexual counterparts (23.32%, p &lt; 0.001). The logistic regression models revealed that both male LGB+ caregivers (odds ratio [OR]: 3.56; 95% confidence interval [CI]: 1.45–8.77) and female LGB+ caregivers (OR: 2.38; 95% CI: 1.00–5.63) exhibited a higher likelihood of reporting depression compared to male heterosexual peers. Additionally, caregivers seeking support services for their caregiving responsibilities were more likely to report depression (OR: 1.47; 95% CI: 1.12–1.94). Our study revealed higher caregiving burden and depression among LGB+ caregivers in the United States, warranting further research and targeted support to address their unique challenges and improve services to caregivers.

Self-perceived quality of life, cognitive and behavioural impairment in amyotrophic lateral sclerosis

BackgroundSelf-perceived quality of life (QoL) is important in amyotrophic lateral sclerosis (ALS). Although caregiver burden and strain have been related to cognitive and behavioural impairment, there has been no comprehensive research looking at these impairments and how they may influence self-perceived QoL subdomains.AimsTo explore how cognitive and behavioural impairment are related to different areas of self-perceived QoL using disease-specific measures.MethodsThis was a quantitative, cross-sectional, observational cohort study, utilising existing specialist ALS clinic data. Clinical and demographic variables were available as well as multidimensional measures, ALS-specific QoL Short Form (ALSsQoL-SF) results and the data from the Edinburgh Cognitive and Behavioural ALS Screen (ECAS). Group comparison and regression analyses were performed.ResultsData from 121 participants with ALS were analysed. 61.2% (N = 74) had either cognitive and/or behavioural impairment, with 28.9% (N = 35) with cognitive impairment (ALSci), 14.1% (N = 17) with behavioural impairment (ALSbi) and 18.2% (N = 22) with both (ALScbi). 38.8% (N = 47) were classified as having no impairments (ALSni). Those with ALSbi had significantly lower QoL in the domains of negative emotions and the interaction with people and the environment compared to those with ALSci and ALSni (ps < 0.05). Further, those with ALScbi had significantly lower QoL in the intimacy domains than those with ALSci and ALSni (ps < 0.05). Regression analysis showed specific cognitive and behavioural (inclusive of psychosis) predictors associated with specific QoL subdomains.ConclusionsBehavioural impairments effect QoL in specific subdomains, namely relating to internalising (negative emotions) and externalising (interaction with people and the environment subdomains, intimacy).

Psychological screening of significant others during spinal cord injury rehabilitation.

Retrospective cohort study. Determine the course of burden and psychological distress of significant others (SOs) during initial spinal cord injury (SCI) rehabilitation and to predict the caregiver's burden at discharge with characteristics of SOs and persons with SCI (PSCIs) at the start of rehabilitation. Rehabilitation centerSint Maartenskliniek, Nijmegen, The Netherlands. All PSCIs admitted for initial rehabilitation between October 2020 and December 2022 were included. One of their SOs were asked to complete a set of screening questionnaires, collected in our routine context of care. A total of 181 PSCIs (62% male, average age 60 years, 80% incomplete SCI, 60% paraplegia and 32 days after injury) and 158 SOs (40% male, average age 57 years) were screened at admission, and 145 and 93 at discharge, respectively. For SOs, the average caregiver's burden and feelings of depression and anxiety did not change during admission. The caregiver's burden score at discharge was best predicted by the burden score at admission, explaining 20% (P < 0.001) of the variance. An additional 13% (P = 0.02) of the variance was explained by other SO and PSCI variables gathered in this study. The caregiver's burden in this group of SOs during rehabilitation, was higher than that of a representative group in the chronic phase. On both assessments, around 20% scored above the cutoff. Scores of psychological distress are comparable to former studies. Standard screening of SOs during initial SCI rehabilitation is important to help the interdisciplinary team identify SOs at risk, and target their treatment during inpatient rehabilitation.