Negative Caregiving Research Articles

A comparison of challenging and positive caregiving experiences for caregivers of individuals with schizophrenia spectrum and bipolar disorders

BackgroundCaregivers of people with serious mental illness experience challenges that may affect their mental health. Few researchers have explored whether positive or negative caregiver experiences differ due to disorder characteristics of the person receiving care. We aimed to determine whether caregiver appraisals and psychological functioning differed between caregivers of those diagnosed with schizophrenia spectrum (SSD) and bipolar disorder (BD). MethodsCaregivers of people with SSD and BD participated in an online self-report survey assessing appraisals, distress, anxiety, depression, and psychological wellbeing. Independent samples t-tests and multivariate generalised linear models determined group differences, and Pearson correlation coefficients and Fisher z-score transformations determined differences in the strength of correlations between groups. Results108 caregivers participated in the study. Caregivers of people with SSD reported significantly greater negative appraisals of the care recipient's negative symptoms and dependency. Caregivers did not differ on positive appraisals. Both groups reported moderate distress, mild anxiety and depression, and moderate psychological wellbeing, but did not differ. Higher negative caregiver appraisals were more strongly associated with higher distress, anxiety and depression, and lower psychological wellbeing, for caregivers of those with SSD than BD. LimitationsSmall between group sample sizes, and analyses may have been moderated by significant demographic differences between groups. ConclusionsCaregivers can experience difficulties associated with their role, and some differences may be attributed to the care recipient's disorder. Future research and interventions should consider specific disorder characteristics, such as symptom profiles, to better support caregivers in having their specific needs addressed whilst themselves providing care.

Healthcare Hardship of Adult Children Taking Care of Aging Parents.

Caring for aging parents is fulfilling for adult children but comes at the cost of impacting their health and finances. Employing Bronfenbrenner's bioecological model, this study examines the mediating role of healthcare hardship in the association between caregiving and health, while also investigating the sources of support that could mitigate the adverse effects of caregiving. Using the Survey of Health Retirement in Europe, the study reveals that while there is no sufficient evidence for a direct impact of caregiving on health through healthcare hardship, there is a significant link between caregiving and healthcare hardship. Additionally, having a support system is associated with reduced healthcare hardship. Notably, men seem to benefit more from social support compared to women. The study indicates that adult children make sacrifices, risking their own well-being to care for their parents. It emphasizes the importance of a strong support network to mitigate these negative caregiving effects.

The Predictive Power of Religious Coping on Care Burden, Depression, Stress, and Anxiety of Parents of Pediatric Oncology Patients in Turkey.

This study aimed to determine the predictive power of religious coping of parents of children with canceron caregiver burden, depression, anxiety, and stress in Turkey. It was designed as a descriptive and cross-sectional study, utilizing correlational analysis and regression models to explore associations between variables. Data were collected from 164 parents in the pediatric hematology-oncology clinics of a university hospital between November 2023 and March 2024. There was a negative correlation between caregiver burden score and negative and positive religious coping scores. Caregiver burden scores werepositively correlated with depression, anxiety, and stress scores. Results indicated that caregiver burden, education level, employment status, family structure, family income, and age at diagnosis significantly predicted positive religious coping. For negative religious coping, caregiver burden, education level, family structure, and family income were significant predictors. This suggests that religious coping may help reduce caregiver burden, underscoring the importance of promoting constructive coping strategies to support caregivers' well-being.

Caregiving Experiences as Mediators Between Caregiving Stressors and Anticipatory Grief in Severe Dementia: Findings From Longitudinal Path Analysis

ObjectivesFamily caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults’ behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers’ anticipatory grief, and its mediation by positive and negative caregiving experiences. DesignProspective cohort. SettingSingapore. ParticipantsAbout 169 family caregivers of older adults with severe dementia were surveyed every 4 months for 4 years (up to 13 surveys). MeasurementsWe measured anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form, negative caregiving experiences using the Caregiver Reaction Assessment scale, positive caregiving experiences using Gain in Alzheimer Care Instrument and behavioral symptoms using the Cohen-Mansfield Agitation Inventory. We implemented a cross-lagged panel model to test mediation, a form of longitudinal path analysis. ResultsAbout 35% of the caregivers reported high anticipatory grief at least once during the study period. Older adults’ behavioral symptoms had a significant direct effect (Standardized coefficient [95% confidence interval]: 0.12 [0.04, 0.21]) on caregivers’ anticipatory grief. Negative experiences mediated the significant indirect effect of older adults’ behavioral symptoms (0.16 [0.06, 0.25]) and coresidence (0.16 [0.07, 0.25]) on caregivers’ anticipatory grief. Positive caregiving experiences did not mediate any path. ConclusionsFindings indicate a temporal association between caregiving stressors and anticipatory grief, mediated by negative caregiving experiences. Routine screening for anticipatory grief, and interventions to address caregiver stressors and negative caregiving experiences may alleviate caregivers’ grief.

Dyadic Ambivalence in Couples Managing Early-Stage Alzheimer's Disease: Linking Behavioral and Psychological Symptoms of Dementia to Life Satisfaction.

Caring for a spouse with Alzheimer's disease (AD) can elicit considerable distress but there are also positive moments. A growing body of work has examined caregivers' ambivalence in the care relationship and linked it to negative caregiver outcomes such as depression, but dyadic assessments of both parties' perspectives are missing. We examined ambivalence in both people with AD and their spousal caregivers, seeking to identify the correlates and well-being outcomes of such ambivalence in this unique context. Participants included 72 couples managing early-stage AD. People with AD and spousal caregivers independently self-reported positive and negative relationship qualities (used to indirectly calculate their ambivalence) and life satisfaction. Caregivers reported both partners' demographic characteristics and their spouses' behavioral and psychological symptoms of dementia (BPSD), focusing on memory-related behaviors and psychological symptoms. Path analyses revealed that the number and frequency of psychological symptoms in people with AD were positively associated with their own and caregivers' ambivalence. Caregivers' distress ratings of memory-related behaviors and psychological symptoms were positively associated with their ambivalence. Greater ambivalence was associated with lower life satisfaction in both spouses. BPSD directly affected both spouses' life satisfaction but there were also indirect effects via ambivalence. This study utilizes a dyadic approach to assess ambivalence in dementia care. Findings reveal the conflicting emotions that couples experience as they cope with early-stage AD, identify sources of such ambivalence, and shed light on the development of dyadic interventions that can promote positive outcomes in both partners.

Putting a Dollar Value on Informal Care Time Provided to People Living With Dementia: A Discrete Choice Experiment

ObjectivesInformal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. MethodsAttributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to “hours of care provided” and the “monetary compensation from the government.” A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. ResultsBased on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. ConclusionThe estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.

Low resilience is associated with worse health-related quality of life in caregivers of service members and veterans with traumatic brain injury: a longitudinal study.

To examine [a] the association of caregiver health-related quality of life (HRQOL) and service member/veteran (SMV) neurobehavioral outcomes with caregiver resilience; [b] longitudinal change in resilience at the group and individual level; and [c] the magnitude of change at the individual level. Caregivers (N = 232) of SMVs with traumatic brain injury completed a resilience measure, and 18 caregiver HRQOL and SMV neurobehavioral outcome measures at a baseline evaluation and follow-up evaluation three years later. Caregivers were divided into two resilience groups at baseline and follow-up: [1] Low Resilience (≤ 45T, baseline n = 99, follow-up n = 93) and [2] High Resilience (> 45T, baseline n = 133, follow-up n = 139). At baseline and follow-up, significant effects were found between Low and High Resilience groups for the majority of outcome measures. There were no significant differences in resilience from baseline to follow-up at the group-mean level. At the individual level, caregivers were classified into four longitudinal resilience groups: [1] Persistently Low Resilience (Baseline + Follow-up = Low Resilience, n = 60), [2] Reduced Resilience (Baseline = High Resilience + Follow-up = Low Resilience, n = 33), [3] Improved Resilience (Baseline = Low Resilience + Follow-up = High Resilience, n = 39), and [4] Persistently High Resilience (Baseline + Follow-up = High Resilience, n = 100). From baseline to follow-up, approximately a third of the Reduced and Improved Resilience groups reported a meaningful change in resilience (≥ 10T). Nearly all of the Persistently High and Persistently Low Resilience groups did not report meaningful change in resilience (< 10T). Resilience was not a fixed state for all caregivers. Early intervention may stall the negative caregiving stress-health trajectory and improve caregiver resilience.

Exploring the associations between competence in dementia care and work attitudes among formal caregivers in nursing homes.

Based on the two-factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations. A cross-sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study. Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China. The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction. The results demonstrate that the two-factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations. Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden. No patient or public contribution.

Cross-country variations in the caregiver role: evidence from the ENTWINE-iCohort study

BackgroundGlobally, economically developed countries face similar ageing demographics and the challenge of a ‘care gap’, yet they vary due to different care and formal support systems, and different cultural and societal norms around illness and care. The aim of this exploratory study was to examine cross-country variations in caregiver motivations, willingness, values, meaning in life, illness beliefs, and experiences of wellbeing, gain, health-related quality of life, burden and depression, across 6 European countries and Israel. Cross-country differences in the above-mentioned informal caregiver experiences are rarely described.MethodsAn online survey (ENTWINE-iCohort) was conducted using validated measures wherever possible. This paper utilises data from 879 caregivers and seven countries (Greece, Italy, the Netherlands, Poland, Sweden, the UK, and Israel).ResultsNo consistent finding supporting the concurrent relationship between caregiver support policies/country culture and caregiver motivations/willingness was found. Caregivers in countries typically characterised by individualist cultures reported lower familism, higher self-enhancement values, and greater perceived illness threat compared to more collectivist countries. Search for meaning was higher in poorer countries than in wealthier countries. Higher negative caregiver experiences (e.g., burden) and lower positive experiences (e.g., wellbeing) were generally observed in countries with underdeveloped caregiver support as compared to countries with more developed formal support systems.ConclusionsCross-country variations can be explained to varying degrees by national policies around care (or their absence) and country cultural contexts. The results emphasise the importance of formal support services for achieving positive caregiver experiences, and help inform the development of policies and measures to support caregivers in Europe and Israel.

Role of child demographic, executive functions, and behavioral challenges on feelings about parenting among parents of youth with Down syndrome

BackgroundLiving with a child with Down syndrome (DS) influences the entire family, including caregivers. AimsThis study examined positive and negative caregiver feelings about parenting youth with DS and to what extent children's demographic, cognitive, behavioral characteristics, and co-occurring medical conditions are associated with those parental feelings. Specifically, the mediatory role of child behavioral challenges on the relationship between child executive functioning (EF) and parent feelings about parenting a child with DS was examined in a mediation analysis model. Methods and proceduresParents of 113 youth with DS aged 6 to 17 year rated their positive and negative feelings about parenting, and their child's behavioral challenges and EF. Outcomes and resultsExternalizing and Internalizing behavioral challenges and emotional and behavioral regulations of EF were significantly associated with positive and negative parent feelings. Child behavioral challenges fully mediated the relationship between child EF and caregiver feelings about parenting, after controlling for identified covariates of child demographics. Conclusions and implicationsFindings have implications for understanding the role of EF, through its impact on behavioral challenges, on the feelings of caregivers about parenting a child with DS. These findings play a role in understanding outcomes of interventions targeted at EF and behavioral challenges, in the context of other child variables.

Changes in Psychosocial Variables Among Caregivers of Patients With Schizophrenia: A Short-Term Follow-Up Study.

Caring for a person with schizophrenia entails considerable effort. The caregiving experience while caring for a person with schizophrenia has been described as both stressful and enriching. The literature on changes in caregiving experience with time has been fairly limited. The present analysis looks at the change in the caregiving experience of caregivers of patients with schizophrenia. This study had a sample of 50 caregivers of patients with schizophrenia who were followed up after a period of 6 to 10 months. Caregiving experience, knowledge of the mental illness, family functioning, coping, social support, psychological distress, quality of life, and spiritual, religious, and personal beliefs were assessed at the two time points. Among the negative caregiving experiences, caregivers' needfor back-upand patient dependency reduced significantly at follow-up as compared to baseline, though total negative or positive experiences of caregiving did not show a significant difference. Knowledge about mental illness did not significantly increase at follow-up, though issues related to poor communication and affective involvement in family functioning reduced over the period of time. Coping and social support remained largely the same, while psychological distress was reduced. All domains of quality of life improved over the follow-up period, while the hope, optimism, and inner peace aspects of spiritual, religious, and personal beliefs improved with time. Some aspects of caregiving experiences may change with time. As caregivers become more adjusted to caregiving roles, their distress may reduce, and their quality of life may improve.

Stressors, Positive and Negative Caregiving Appraisals, and Caregiver Psychological Well‐Being: The Moderating Role of Stages of Dementia

Caregiving is a process affected by both caregiver and care recipients and contains both positive and negative experiences. However, there is a lack of theories that capture the impact of the progression of dementia on family caregiving. This study proposed and examined a dementia caregiver process two‐factor (DCPT) model. Specifically, we explored (a) the relationship between the severity of caregiving stressors and caregiver psychological well‐being, along with the mediating role of positive aspects of caregiving (PAC) and caregiving burden, and (b) the moderating role of stages of dementia. Data were obtained from a two‐wave longitudinal data collected from 328 adult–child dementia caregivers in Hong Kong. Multiple group analysis was used to examine the proposed hypotheses. Results show that PAC and burden both significantly mediated the relationship between care recipients’ neuropsychiatric symptoms (NPS) and caregiver depressive symptoms and life satisfaction. Stages of dementia significantly moderated the relationship between PAC and caregiver depressive symptoms, with PAC associated with lesser depressive symptoms only among caregivers of those with middle‐ or late‐stage dementia. In sum, the dementia caregiver process two‐factor model proposed in this study was supported by our empirical data. This theory and the study results underscore the importance of both PAC and burden and capture the specificity of the caregiving process in different dementia stages. Findings in this study suggest the need to develop tailored interventions that can better accommodate caregivers with diverse characteristics and adapt to the entire disease trajectory.

EFFECT OF A COVID-19-RELATED LOCKDOWN ON MIDDLE-AGED AND OLDER FAMILY CAREGIVERS IN SINGAPORE

Abstract Lockdowns, while limiting COVID-19 transmission, can affect care provision by family caregivers and their caregiving experience. We assessed, among 1094 family caregivers aged 50-79 years in Singapore, the (1) perceived effect of nationwide lockdown on their care provision, (2) correlates of different perceptions, and (3) association of the perceptions with negative and positive caregiving experiences. Caregivers reported whether their care provision became harder, easier, or remained the same during versus before the lockdown. Multinomial logistic regression assessed the association of caregiver, care-recipient, and caregiving-context characteristics with their perceptions. Linear regression models examined the association of their perceptions with subsequent negative and positive caregiving experiences. Care provision became harder for 36%, easier for 18% and remained the same for 46% caregivers. Care provision becoming harder (versus same) was more likely for caregivers who were male, Chinese, in worse health, caring for care-recipients with functional limitations, without caregiving support from cohabiting family before the lockdown, and with caregiving support from non-cohabiting family before the lockdown. Care provision becoming easier (versus same) was less likely among caregivers who were of higher age, unemployed, socially isolated and whose care-recipients had functional limitations. Caregivers for whom care provision became harder were worse off in negative caregiving experiences. A nationwide lockdown did not make care provision harder for all caregivers. However, those for whom it did had greater negative caregiving experiences. Heterogeneity of the effect of lockdowns and offering flexibility to non-cohabiting family who support caregiving should be considerations when implementing such disruptions.

THE “GOOD” CAREGIVER: DOES FILIAL PIETY NECESSITATE SELF-SACRIFICE?

Abstract Family caregiving policies that amplify the enactment of ‘filial piety’ – respect and care towards parents, grandparents and older persons – are especially pronounced in Asian societies, where caring for older family members is culturally expected and appraised yet is associated with stress and burden. Numerous studies have shown that fulfilment of filial piety contributes to better psychological outcomes for caregivers while mismatched filial expectations contribute to poorer psychological outcomes. However, few studies acknowledge how filial care varies according to individual resources and socio-cultural contexts. We seek to understand how family caregivers negotiate their self-determination through filial care, which contributes to positive and negative caregiving experiences. We conducted in-depth interviews with 34 caregivers of older persons with functional limitations in Singapore, purposefully selected based on varying positive and negative caregiving experiences. For caregivers with predominantly negative caregiving experiences, filial care was seen as an act of sacrifice and expectation of duty, with low autonomy to exercise self-determination. In comparison, caregivers with predominantly positive caregiving experiences described filial care as an act of sincere love cultivated through close relationships with their care-recipient, and aligned to their self-determination. Strong family support was also evident in the latter. Treating filial piety as a ‘natural desire to care for parents’ obscures efforts required to amplify positive caregiving experiences while normalisation of self-sacrifice and suffering hinders caregivers from expressing burden and accessing support. A nuanced understanding of how caregivers negotiate filial care can inform policy interventions to empower caregivers and care-recipients and enhance intergenerational relationships.

RACIAL DIFFERENCES IN CAREGIVER BURDEN AMONG BLACK/AFRICAN AMERICAN AND WHITE ALL-CAUSE CAREGIVERS

Abstract Introduction As life expectancy and the numbers of older adults in our society continue to rise, serving as a caregiver is more common. Caregivers assist with a variety of daily tasks as changes in functional status occur. The Stress Process Model informs that there are potential buffers to negative caregiver outcomes including religious commitment or involvement and cultural justifications for caregiving. Previously, research has shown that caregivers may turn to religion and cultural practices to cope with or explain their roles. Methods This investigation examines racial differences in caregiver burden and the potential roles of caregiver religiosity and cultural justifications for caregiving as moderators of this effect. Individuals providing care for an adult age 45 and older for at least five hours per week were recruited. Results The sample size for this study was 80 and included 49 Black/African American caregivers (61.25%) and 31 White caregivers (38.75%) between the ages of 23 and 78. Multiple regression models with age, gender, income difficulty, and race as predictors revealed that Black/African American caregivers reported lower levels of caregiver burden compared to White caregivers, p &amp;lt; .05. Additional interaction terms added to the model revealed that religious commitment or involvement and cultural justifications for caregiving did not moderate the effect of race on caregiver burden. Conclusion The initial findings of this investigation may be the result of the study’s small sample size and insufficient power. Recruitment is ongoing to help identify factors to potentially explain why Black/African American caregivers report less caregiver burden.

Dementia Caregiving 101: The effect of a pilot virtual dementia caregiving course on caregiver role preparedness and self‐efficacy

AbstractBackgroundDementia affects approximately 6.5 million people over the age of 65 in the US, most of whom are cared for at home by family members. Dementia caregivers (CGs) have reported inadequate perceived role preparedness and self‐efficacy, in addition to burden, depression, and anxiety that is disproportionate to CGs of those without dementia. We created a virtual Dementia Caregiving 101 course offering psychoeducation and skills training through an immersive structured program. The virtual platform was designed to improve access to dementia caregiving education for the rural CGs we serve. Goals of this course were to increase CG role preparedness and self‐efficacy by providing information about dementia and an overview of the caregiving experience.MethodPrior to the first class, CGs were administered questionnaires to assess role preparedness and self‐efficacy. Two intervention groups were then conducted simultaneously for ten weeks. Post‐intervention data regarding role preparedness, self‐efficacy, and course feedback were collected.ResultFifteen CGs enrolled in the course. Four CGs were lost to follow up by the time of post‐group data collection, and one CG’s data was excluded whose scores were significantly discrepant from the overall pattern (this person joined by phone instead of by video). CGs included spouses/significant others (n = 5), former spouses (n = 1), siblings (n = 2), and adult children (n = 2). CGs ranged in age from 58‐76 (age M = 69.2; SD = 6.4). Diagnoses of CG’s loved ones included vascular dementia (n = 4), Alzheimer’s disease (n = 2), and unspecified dementia/no diagnosis given (n = 4). Total session attendance was high (M = 7.8; SD = 1.9; range = 5‐10). Following course completion, CGs reported an overall increase in role preparedness (Pre‐course score = 175; Post‐course score = 198) and self‐efficacy (Pre‐course score = 417; Post‐course score = 482). Qualitative analysis of CG feedback revealed high satisfaction with the course overall, with particular emphasis on usefulness of the manual, convenience of the virtual platform, and the opportunity to learn from other CGs.ConclusionThe Dementia Caregiving 101 virtual course appears to be an accessible and effective program for improving CG role preparedness and self‐efficacy, which are important factors in reducing negative CG outcomes. Our preliminary results are encouraging and underscore the benefits of virtual skills‐based interventions for dementia CGs.

Factors Influencing the Quality of Life of Family Caregivers of Stroke Patients: A Cross-Sectional Survey

Purpose: This study aimed to explore the quality of life of family caregivers of stroke patients and investigate how resilience, uncertainty, caregiving appraisal, and patients’ cognitive and functional status affect caregivers’ quality of life. Methods: This descriptive cross-sectional study was conducted between October 2018 and November 2020. In total, 199 family caregivers completed self-reported questionnaires, while their family members who had been diagnosed with stroke within the past 6 months underwent nurse-assisted assessments. The data collected were analyzed using descriptive statistics, comparative analysis, and multiple regression analysis. Results: Most caregivers were female (82.4%) who provided care to stroke patients in the first 6 months after their diagnosis (mean duration: 65.11±34.50 days). More than half of the patients exhibited mild cognitive impairment (63.8%) and varying degrees of functional dependence (67.3%). Family caregiver’s quality of life was significantly associated with the functional dependence of the patient (β=.56), the duration since diagnosis (β=.16), support from other family members (β=-.25), the caregiver’s gender (β=.13), religious affiliation (β=-.19), employment status (β=.14), and caregiving appraisal (β=-.18). These variables explained approximately 61% of the variance in family caregivers’ quality of life. Conclusion: The findings show a decline in the quality of life of family caregivers in the first 6 months after patients had a stroke for the first time. They also emphasize the importance of considering negative caregiving appraisal, patient’s functional dependence, and limited support for caregivers in future intervention research aimed at enhancing caregivers’ quality of life.

Early emotional caregiving environment and associations with memory performance and hippocampal volume in adolescents with prenatal drug exposure

Early adversities, including prenatal drug exposure (PDE) and a negative postnatal emotional caregiving environment, impact children’s long-term development. The protracted developmental course of memory and its underlying neural systems offer a valuable framework for understanding the longitudinal associations of pre- and postnatal factors on children with PDE. This study longitudinally examines memory and hippocampal development in 69 parent–child dyads to investigate how the early caregiving emotional environment affects children with PDE’s neural and cognitive systems. Measures of physical health, drug exposure, caregiver stress, depression, and distress were collected between 0 and 24 months At age 14 years, adolescents completed multiple measures of episodic memory, and at ages 14 and 18 years, adolescents underwent magnetic resonance imaging (MRI) scans. Latent constructs of episodic memory and the caregiving environment were created using Confirmatory Factor Analysis. Multiple regressions revealed a negative emotional caregiving environment during infancy was associated with poor memory performance and smaller left hippocampal volumes at 14 years. Better memory performance at 14 years predicted larger right hippocampal volume at 18 years. At 18 years, the association between the emotional caregiving environment and hippocampal volume was moderated by sex, such that a negative emotional caregiving environment was associated with larger left hippocampal volumes in males but not females. Findings suggest that the postnatal caregiving environment may modulate the effects of PDE across development, influencing neurocognitive development.

노인을 돌보는 가족돌봄자의 돌봄부담-디스트레스 관계에서 가족관계망의 감사와 지원의 효과

The purpose of this study was to examine the relationship between caregiver burden and distress among caregivers of older adults and to identify the family gratitude and family support that moderate the relationship between caregiver burden and distress. Caregiver burden was assessed based on the amount of total caregiving time (per week), the gap between the amount of actual and desired caregiving time, and the negative caregiving experiences. Family characteristics were analyzed based on social support theory and social recognition theory to investigate whether family gratitude and economic support from family members moderate the caregiver burden-stress relationship. The analysis was conducted on 501 primary caregivers for older adults from the 2018 National Survey of Family Caregiving. The results of this study are as follows: First, when controlling for other characteristics, family caregivers who reported more negative caregiving experiences (e.g. demanding care, constant surveillance, interference from others) experienced higher levels of distress when their actual caregiving time exceeded their preferred caregiving time. Secondly, primary caregivers who perceived gratitude from their families appeared lower levels of distress. Moreover, the interaction effect between caregiving time gap and acknowledgment was significant, indicating that the recognition of gratitude from family members is meaningful in moderating the distress of primary caregivers in stressful situations. Thirdly, the interaction effect between negative caregiving experiences and economic support was also significant, suggesting that the intensity of distress caused by negative caregiving experiences can be reduced through the financial support provided by family members.

Disrupted Lives: Caregivers' Experiences of In-Hospital Cardiac Arrest Survivors' Recovery 5 Years Later.

Background Survivors of in-hospital cardiac arrest (IHCA) experience ongoing physical and cognitive impairments, often requiring support from a caregiver at home afterwards. Caregivers are important in the survivor's recovery, yet there is little research specifically focused on their experiences once the survivor is discharged home. In this study, we highlight how caregivers for veteran IHCA survivors described and experienced their caregiver role, the strategies they used to fulfill their role, and the additional needs they still have years after the IHCA event. Methods and Results Between March and July 2019, semistructured telephone interviews were conducted with 12 caregivers for veteran IHCA survivors. Interviews were transcribed, and content analysis was performed. Patterns within the data were further analyzed and grouped into themes. A predominant theme of "disruption" was identified across 3 different domains including the following: (1) disruption in caregiver's life, (2) disruption in caregiver-patient relationship, and (3) disruption in caregiver's well-being. Disruption was associated with both positive and negative caregiver experiences. Strategies caregivers used and resources they felt would have helped them adjust to their caregiver role were also identified. Conclusions Caregivers for veteran IHCA survivors experienced a disruption in many facets of their lives. Caregivers felt the veterans' IHCA impacted various aspects of their lives, and they continued to need additional support in order to care for the IHCA survivor and themselves. Although some were able to procure coping strategies, such as counseling and engaging in stress-relieving activities, most indicated additional help and resources were still needed.