Caregiver Strain Research Articles

Exploring the Lived Experiences of Family Caregivers Who Provided End-of-Life Care to Hemodialysis Patients: A Phenomenological Study in Iran

Background: Providing end-of-life care involves offering care and support to patients with advanced incurable diseases who are in their final stages of life. Family caregivers of these patients often dedicate substantial time to their care, which can significantly impact their physical and psychological well-being. Objectives: This study aimed to explore the lived experiences of family caregivers providing care for hemodialysis patients at the end of life. Methods: This qualitative study employed a descriptive phenomenological design. To ensure information-rich samples, nine family caregivers of hemodialysis patients at the end of life were selected from two dialysis centers using a purposive sampling method. Data collection involved conducting in-depth, semi-structured, face-to-face interviews, which were digitally recorded for accuracy. Analysis was conducted using van Kaam's seven-step method. Results: Nine family caregivers, including 3 men and 6 women, participated in this study. They had a mean age of 59.44 years, and on average, they had been caring for their patients for 6.33 years. Four main themes and twelve sub-themes emerged from the analysis of the interviews. These themes, as well as their sub-themes, were: (1) complex care (individual-social struggles and healthcare hurdles); (2) care as an opportunity for skill development (experience of spirituality and development of mental capacity); (3) care as a chain of caregivers (ignorance of the caregiver, lifestyle adjustments, persistent concerns, questioning circumstances, and mental strain due to prolonged care); and (4) moments of misfortune (emotional exhaustion from witnessing the patient's physical deterioration, a sense of helplessness regarding the patient's mental and cognitive state, and a sense of helplessness regarding the patient's mental and cognitive state). Conclusions: Caregivers expressed a spectrum of both positive and negative experiences. While some viewed their role as fostering intellectual growth and development, others described feelings of confinement, entrapment, and sacrifice. Further comprehensive research is required to determine the factors contributing to this diversity of perspectives.

Ghrelin for Neuroprotection in Post-Cardiac Arrest Coma: a one-year follow-up of cognitive and psychosocial outcomes.

Effective treatments to improve brain recovery after cardiac arrest are needed. Ghrelin showed efficacy in experimental models and was associated with lower neuron specific enolase levels in the clinical Ghrelin in Coma (GRECO) trial. Here we present cognitive and psychosocial outcomes at one-year follow-up. GRECO was a phase 2 multicenter, double-blind, randomized, placebo-controlled trial in comatose patients after cardiac arrest. The intervention was intravenous acyl-ghrelin 600 μg twice daily or placebo for one week, starting within 12 hours after the arrest. Patients were assessed after one year using cognitive tests and questionnaires measuring participation, health-related quality of life, mood, and caregiver strain. Composite z-scores of the cognitive tests were computed by comparing the scores to those of a norm-population and averaging the tests for memory, attention and executive functioning separately. Groups were compared based on composite z-scores and cutoff scores for psychosocial outcomes. Of the 160 participants originally included, 66 of the 85 participants who survived to one year after OHCA completed the psychosocial and cognitive follow-up. The intervention group scored numerically higher across all cognitive domains compared to the control group, but the differences were not statistically significant (memory median = -.850 vs. -1.385, U = 424.5, p = .587; attention median = -.733 vs. -.717, U = 420.5, p = .548; executive functioning median = -.311 vs. -.369, U = 408.5, p = .323). There were significantly fewer signs of depression in the intervention group, U = 322.5, p = .014. This predefined secondary analysis found that ghrelin treatment was associated with non-significantly but consistently better cognitive outcomes and significantly fewer signs of depression. This is in line with the primary outcomes. Clinicaltrialsregister.eu: EUCTR2018-000005-23-NL.

Child's Externalizing and Internalizing Problems and Caregiver Strain: Mediation of Child's Executive Functions.

The aim of the study is to explore the role of child's executive functions in the relation between child's externalizing and internalizing problems and caregiver strain in early school age children. The caregiver strain refers to providing nurture and care for a dependent family member. A sample includes 175 caregiver-child dyads and 36 school teachers. Participants completed the Family Strain Index which measures caregiver strain or burden (caregivers), the Strengths and Difficulties Questionnaire which measures child's externalizing and internalizing problems (teachers), and behavioral tasks that measure executive functions (children). Using structural equation modelling, the analysis resulted in a full mediation of the child's externalizing problems on the caregiver strain by child's executive functions. However, the association of child's internalizing problems with caregiver strain has not been confirmed. These results indicate that better child's executive functions buffer the negative effect of child's externalizing problems on caregiver perceived burden. Based on these results, we can suggest that interventions should be focused on programmes to improve the child's executive functions in the family and educational context, along with caregiver training aimed at providing emotional and social support, or individual therapy.

Characterizing two hybrid exercise-cognitive training interventions with neurophysiological and behavioral indexes in post-stroke patients with cognitive dysfunction: a randomized controlled trial.

Combined exercise and cognitive training have been evidenced to be effective in cognitive and physical functions in post-stroke survivors. Recent interest has gradually shifted to technology-aided cognitive rehabilitation. However, clear neural makers or comprehensive behavioral indexes used for evaluating rehabilitation remain unexplored. The study aimed to examine the effects of two types of combined exercise-cognitive training on stroke patients with cognitive dysfunction, focusing on neural and behavioral markers. 39 patients were randomly assigned to sequential exercise-cognitive training, simultaneous exercise-cognitive training or active control groups and underwent 60 minutes/day training, 3 days/week, for 12 weeks. 29 patients ultimately completed the training. The markers/indexes included cognitive function, physical function, instrumental activities of daily living, and caregiver strain. Cognitive function included working memory task performance, neurophysiological markers, and cognitive indexes. The results indicated no d-prime difference between groups after the training. The simultaneous training demonstrated significant improvements in the neurophysiological marker of P300 and theta coherence compared to the other groups. Moreover, the simultaneous training also led to significant enhancements in physical function, as measured by the Rivermead Mobility Index, comparing to the other groups. Further analysis contrasting the two exercise-cognitive trainings revealed that improvements in cognition and multifaceted domains (i.e., instrumental activities of daily living and caregiver strain) were manifested in the simultaneous training. Together with the neural markers identified in the current interventions, the differential impacts of the two interventions indicates the potential of technology-driven and personalized rehabilitation in post-stroke patients.

Factors associated with caregiver strain among mothers and fathers of children with advanced cancer.

To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain. Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers (n = 55; 87% White) and fathers (n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role. Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress. In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.

X- vs. Y-chromosome influences on human behavior: a deep phenotypic comparison of psychopathology in XXY and XYY syndromes

BackgroundDo different genetic disorders impart different psychiatric risk profiles? This question has major implications for biological and translational aspects of psychiatry, but has been difficult to tackle given limited access to shared batteries of fine-grained clinical data across genetic disorders.MethodsUsing a new suite of generalizable analytic approaches, we examine gold-standard diagnostic ratings, scores on 66 dimensional measures of psychopathology, and measures of cognition and functioning in two different sex chromosome aneuploidies (SCAs)—Klinefelter (XXY/KS) and XYY syndrome (n = 102 and 64 vs. n = 74 and 60 matched XY controls, total n = 300). We focus on SCAs for their high collective prevalence, informativeness regarding differential X- vs. Y-chromosome effects, and potential relevance for normative sex differences.ResultsWe show that XXY/KS elevates rates for most psychiatric diagnoses as previously reported for XYY, but disproportionately so for anxiety disorders. Fine-mapping across all 66 traits provides a detailed profile of psychopathology in XXY/KS which is strongly correlated with that of XYY (r = .75 across traits) and robust to ascertainment biases, but reveals: (i) a greater penetrance of XYY than KS/XXY for most traits except mood/anxiety problems, and (ii) a disproportionate impact of XYY vs. XXY/KS on social problems. XXY/KS and XYY showed a similar coupling of psychopathology with adaptive function and caregiver strain, but not IQ.ConclusionsThis work provides new tools for deep-phenotypic comparisons of genetic disorders in psychiatry and uses these to detail unique and shared effects of the X- and Y-chromosome on human behavior.

Examining psychosocial vulnerability in caregivers of individuals with a chronic haematological malignancy. A cross sectional survey.

ObjectiveTo investigate psychosocial vulnerability in informal caregivers of chronic haematological cancer patients and determine the level of psychosocial vulnerability among carers of people living with a CHM. MethodsAn international cross – sectional study including caregivers of individuals with a chronic haematological cancer (n=64) from Ireland (n=29), Australia (n=21), the UK (n=4), the USA (n=4), and India (n=6). Caregivers completed scales for loneliness, resilience, stress and caregiver strain using the UCLA scale, BRS scale, PSS scale and MCSI scale. Descriptive statistics and non-parametric techniques were used. ResultsThe results show that younger carers (aged between 18-40) report higher levels of loneliness, stress and caregiver strain. Carers who have left their paid employment due to caregiving and are in receipt of carers’ allowance or social welfare report high levels of loneliness and caregiver strain. Lower stress levels were reported in those who received paid professional caring support. Finally, higher levels of loneliness in carers were associated with the patient currently being on some form of treatment and higher levels of caregiver strain were associated with caring for someone for more than 8 hours per day and having all social, mental, and financial areas of life affected ConclusionCaregivers of patients with chronic haematological cancers experience psychosocial vulnerability, which is associated with their age, socioeconomic status, gender and health and wellbeing.

Association Between Caregiver Strain and Emergency Health Care Resource Utilization in Survivors of Critical Illness

Association Between Caregiver Strain and Emergency Health Care Resource Utilization in Survivors of Critical Illness

Health of the Pandemic Dementia Paid Staff and Unpaid Caregiver Workforce in Congregate Care and Community Settings

ObjectivesThe objective of this study was to assess the impact of the pandemic on the health, well-being, and access to services of paid staff and unpaid caregivers of persons living with dementia. DesignQuestionnaires were developed to capture the experiences of paid staff and unpaid caregivers throughout the pandemic, leveraging a pre-existing clinical trial collaborative. SettingCommunity and long-term care locations in Miami, Florida, Boston, Massachusetts, and the greater Baltimore, Maryland, and D.C. areas. ParticipantsPaid staff from Miami Jewish and Benchmark who worked with patients with dementia during the first two years of the pandemic. Unpaid caregivers who lived within the catchment area of the study sites and provided care for community-based persons with dementia. MeasurementsMeasures included the Coronavirus Impact Scale, the Herth Hope Index, NPI-Q, the Modified Caregiver Strain Index, PHQ-8, items about workplace changes, caregiving relationship, and changes to caregiver support. ResultsPaid staff were statistically more likely to have been exposed to, tested for, hospitalized, or seriously ill with COVID-19 and indicated moderate to severe impacts to medical and mental health services compared to unpaid caregivers. Unpaid caregivers exhibited significantly higher rates of depressive symptom severity and overall lower scores on the Herth Hope Scale compared to paid staff. ConclusionsOur findings suggest that the pandemic had significant impacts on the mental health and general well-being of unpaid caregivers. While notable that paid staff suffered from increased exposure and decreased access to services, policies supporting both workforces should respond to the unique outcomes that each faced, post-pandemic.

Easing Caregiver Strain: The Power of Health Check-ups

Against the backdrop of global aging and escalating pressures on family caregiving, this study delves into the impact of health check-ups for the elderly on alleviating the objective burden of family caregiving by analyzing China's Free Health Check-up Program (FHCP). Using an unbalanced panel dataset spanning 2011, 2013, 2015, 2018, and 2020, comprising approximately 35,000 observations of the elderly population aged 65 and above, the research employs the Difference-in-Differences method. The research reveals a significant 9.18% reduction in family caregiving time following the implementation of FHCP, primarily attributed to the enhancement of the elderly's self-care abilities and health awareness. This study elucidates, for the first time, the efficacy and mechanisms of health check-ups in alleviating caregiving objective burdens, providing evidence for the formulation of pertinent policies. It underscores the significance of routine health check-ups as a public health intervention in supporting family caregivers and addressing the challenges of aging.

The Impact of COVID-19 on People with Mild Cognitive Impairment/Dementia and Their Caregivers. The Role of a Remote Neuropsychological Evaluation: Commentary

The COVID-19 pandemic has significantly impacted individuals with Mild Cognitive Impairment (MCI) and dementia, as well as their caregivers. This commentary explores the multifaceted effects of the pandemic on this vulnerable population, including accelerated cognitive decline, increased behavioral symptoms and heightened caregiver strain.

"They forget that I'm a human being"-ward round communication with older patients living with frailty and informal caregivers: a qualitative study.

Skilful communication prompts quality patient care. Informal caregivers occupy a crucial role when caring for hospitalised older patients living with frailty. However, skilful communication with both patients and informal caregivers during ward rounds has not been studied. Thus, we aimed to explore communication preferences of patients and informal caregivers during ward rounds. We conducted semi-structured interviews with hospitalized patients and informal caregivers until information redundancy occurred. We used inductive coding of the transcribed interviews followed by a reflexive thematic analysis. The study included 15 patients and 15 informal caregivers. Patients had a median age of 85years (range 75-100years) and seven patients were females. Informal caregivers' median age were 45years (range 38-80years) and 13 were females. Three themes were generated: (1) building relationships and conveying information, (2) alleviating informal caregiver strain and (3) sharing the decision-making process. Themes highlighted the importance of collaborative and empathetic approaches in healthcare interactions, emphasizing interpersonal communication skills, such as fostering professional relationships. The interviews unveiled informal caregiver burden stemming from disempowerment during hospital discharge process and managing mistrust within the healthcare system. The shared decision-making process should address patients' and informal caregivers' needs and circumstances. Communication preferences of a population of older patients living with frailty and informal caregivers during ward rounds encompass interpersonal communication, demonstrating ample time, and being seen as a human being. Informal caregivers value being included in the decision-making process. Skilful communication includes for doctors to recognize informal caregivers' narratives and burdens.

1490P Health-related quality of life of cancer patients on chemotherapy and its relationship with caregiver strain: A cross-sectional analytical study

1490P Health-related quality of life of cancer patients on chemotherapy and its relationship with caregiver strain: A cross-sectional analytical study

Predictors of caregiver burden in Alzheimer’s disease: Caregiver stress, life satisfaction and quality of life levels

Objective: The purpose of this study was to determine the impact of socio-demographic and health characteristics, caregiving stress, life satisfaction, and quality of life on the caregiving burden in caregivers of Alzheimer’s patient. Methods: This study is a descriptive-correlational type study. A total of 146 individuals who are caregivers of Alzheimer’s patient constitute the sampling of the study. The Zarit Burden Interview, Caregiver Strain Index, Satisfaction with Life Scale, and SF-36 Quality of Life. Results: The care burden mean score of caregivers was 61.29±10.3. It was determined that age (β=0.648), caring duration (β=0.429), gender(β=0.672), marital status(β=0.936), educational status(β=0.863), the affinity of the caregiver with the patient(β=0.734), working status(β=0.524), perceived income adequacy(β=0.926), perceived health condition(β=0.682), presence of chronic disease(β=0.529), caregiving stress(β=0.633), life satisfaction score(β=-0.775), physical subscale score (β=-0.824) and mental subscale score(β=-0.489) quality of life had an influence on the caregiving burden (p&lt;0.001). It was determined that the effective determining factors account for 76.4% of the variation in the caregiving burden. Conclusions: The caregivers of Alzheimer’s disease patients have a high caring burden. In addition to the socio-demographic and health characteristics of caregivers, caregiving stress, life satisfaction, and quality of life are important determinants of the caring burden.

The Impact of Disasters on Stress Levels of Caregivers of Children with Special Needs: A Comparative Study

Aim: Caring needs of children with special needs increase the stress levels of caregivers for many reasons. The aim of this study was to examine, compare, and provide recommendations regarding the stress levels, factors influencing stress levels, and coping strategies among caregivers of both healthy and special needs children during disaster periods. Method: This research was planned as a cross-sectional study. The survey, which was created in an electronic environment, disseminated to as many people as possible across the country via e-mail, various communication networks, and social media. After the demographic information of 261 caregivers were recorded, the Depression Anxiety Stress Scale 21, the Caregiver Strain Index, and the Ways of Coping Inventory Questionnaire were administered. Results: While the stress level was high (Mean±SD:7.67±3.98) in the caregivers of children with special needs, this level was within the normal limits (Mean±SD:6.44±3.61) in the caregivers of healthy children. There was a significant difference between the groups (p:0.009). In terms of coping with stress, caregivers of children with special needs were found to prefer emotion-focused/passive approaches, and there was a difference between the groups (p:0.000). Conclusion: The restrictive conditions during disaster period can impact the mental health of caregivers of special needs children, and there are several factors involved in this process. In line with this, we believe that specific policies and strategies need to be developed to support the mental health of caregivers of special needs children during extraordinary situations such as disaster scenarios.

Changes in Health Indicators Among Caregivers - United States, 2015-2016 to 2021-2022.

Caregivers provide support to persons who might otherwise require placement in long-term care facilities. Approximately one in five U.S. adults provides care to family members or friends who have a chronic health condition or disability. Promoting the well-being of this large segment of the population is a public health priority as recognized by the 2022 National Strategy to Support Family Caregivers. Although negative associations between caregiving and caregiver health are known, changes in the health status of caregivers over time are not. Data from the 2015-2016 and 2021-2022 Behavioral Risk Factor Surveillance System were analyzed to compare changes in the prevalence of 19 health indicators among cross-sectional samples of caregivers and noncaregivers at different time points. Caregivers experienced improvements in prevalence of four health indicators, whereas six worsened. Some health indicators, such as cigarette smoking, improved for both caregivers and noncaregivers, although smoking prevalence remained higher for caregivers (16.6% versus 11.7%). Prevalence of lifetime depression increased for both groups and remained higher among caregivers (25.6%) than among noncaregivers (18.6%). During 2021-2022, age-adjusted estimates for caregivers were unfavorable for 13 of the 19 health indicators when compared with noncaregivers. Strategies for supporting caregivers are available, and integrating these with existing programs to address mental health and chronic diseases among this population might improve caregiver well-being. For example, many community organizations support caregivers by offering interventions designed to relieve caregiver strain, including skills training, support groups, and care coordination.

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

To understand the nature and effectiveness of interventions aimed at improving informal stroke caregiver burden, stress, and strain. 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. 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. 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. 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.

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).

Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study.

Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

The Relationship Between Social Support and Stress in Family Caregivers of Stroke Patients.

BACKGROUND: Stroke is a significant cause of disability. Family Informal caregivers face numerous stressors. This study examines whether social support during hospitalization would mediate the relationship between care time per day and stress in family caregivers of stroke patients. METHODS: A cross-sectional study design in Taiwan recruited 137 family caregivers. Descriptive information forms, the Caregiver Strain Index, and the Social Support Scale were used to collect data. RESULTS: Social support was negatively correlated with stress (r = -0.23, P = .006). By contrast, caregiving hours and physical support were significantly associated with psychological stress. Physical support mediated the association between caregiving hours and psychological stress (95% CI = 0.000-0.005), accounting for 22.02% of the total effect. CONCLUSION: Social support decreased family caregiver stress, notably psychological stress, due to prolonged care of 18 hours per day in the hospital. Physical support resources to alleviate caregiver stress.