The COVID-19 Pandemic Eroded System Support But Not Social Solidarity

While the World has been busy mitigating the disastrous health and economic effects of the novel coronavirus, a less direct, but not less concerning peril has largely remained unexplored: the COVID-19 crisis may disrupt some of the most fundamental social and political relationships in democratic societies. We interviewed samples resembling the national population of Denmark, Hungary, Italy and the US three times: in April, June and December of 2020 (14K observations). We employed a broad set of survey questions tapping into perceptions about the two major relationships structuring society: Horizontal relationships between citizens, and vertical relationships between citizens and the state. We benchmarked these data against pre-COVID levels measured in the World Values Survey and the European Values Survey. We present strikingly similar findings across the four diverse countries. We show that support for the political system has markedly decreased already by April and fell further till December. Exploiting the panel setup, we demonstrate that within-respondent increases in indicators of pandemic fatigue (specifically, the perceived subjective burden of the pandemic and feelings of anomie) correspond to decreases in system support and increases in extreme anti-systemic attitudes. Meanwhile, we find much smaller changes in social solidarity and trust compared to pre-pandemic levels, and we find that these attitudes are largely unaffected by pandemic burden. Our results imply that the pandemic is not only a health-crisis, but poses a substantial challenge to the relationship between citizens and the state.

The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Background/Objective: Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of other conditions. The primary objective of this analysis is to determine the relationship between caregiver anticipatory grief and dementia severity, as measured by the Anticipatory Grief Scale (AGS) and Dementia Severity Rating Scale (DSRS), respectively. Methods: Multiple regression analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) trial; an RCT testing an ACT intervention for ADRD caregiver anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient and clinically significant anxiety (GAD7 score >10). Results: The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature. Multiple regression models showed a caregivers’ anticipatory grief is not significantly associated with the patients’ dementia severity as measured by the Dementia Severity Rating Scale (t=0.87). Results also revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (t=< 0.1). Conclusion and Potential Impact: Understanding these relationships contributes to better understanding ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

Can we determine burdensome transitions in the last year of life based on time of occurrence and frequency? An explanatory mixed-methods study

Objective Burdensome transitions are typically defined as having a transition in the last three days or multiple hospitalizations in the last three months of life, which is seldom verified with qualitative accounts from persons concerned. This study analyses types and frequencies of transitions in the last year of life and indicators of burdensome transitions from the perspective of bereaved relatives. Method Cross-sectional explanatory mixed-methods study with 351 surveyed and 41 interviewed bereaved relatives in a German urban area. Frequencies, t-tests, and Spearman correlations were computed for quantitative data. Qualitative data were analyzed using content analysis with provisional and descriptive coding/subcoding. Results Transitions rise sharply during the last year of life. 8.2% of patients experience a transition in the last three days and 7.8% three or more hospitalizations in the last three months of life. An empathetic way of telling patients about the prospect of death is associated with fewer transitions in the last month of life (r = 0.185, p = 0.046). Professionals being aware of the preferred place of death corresponds to fewer hospitalizations in the last three months of life (1.28 vs. 0.97, p = 0.021). Qualitative data do not confirm that burden in transitions is linked to having transitions in the last three days or multiple hospitalizations in the last three months of life. Burden is associated with (1) late and non-empathetic communication about the prospect of death, (2) not coordinating care across settings, and (3) not considering patients’ preferences. Significance of results Time of occurrence and frequency appear to be imperfect proxies for burdensome transitions. The subjective burden seems to be associated rather with insufficient information, preparation, and management of transitions.

The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of those with mild cognitive impairment, implying a relationship between disease severity and caregiver anticipatory grief. Analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregiver (TACTICs) trial; an RCT evaluating an ACT intervention for ADRD caregivers with anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient, and clinically significant anxiety (GAD7 score &gt;10). The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature (74.9). Using multiple regression models, we determined a caregivers’ anticipatory grief, as measured by the anticipatory grief scale, is not significantly associated with the patients’ dementia severity, as measured by the Dementia Severity Rating Scale (DSRS) (p=0.66), Results revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (p&lt; 0.01). Understanding these relationships contributes to a better understanding of ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

Examining the Influence of Social Interactions and Community Resources on Caregivers’ Burden in Stroke Settings: A Prospective Cohort Study

Since the introduction of the integrated care model, understanding how social interactions and community resources can alleviate caregivers’ burden is vital to minimizing negative patients’ outcomes. This study (n = 214) examined the associations between these factors and caregivers’ burden in stroke settings. It used 3-month and 1-year post-stroke data collected from five tertiary hospitals. Subjective and objective caregivers’ burdens were measured using Zarit burden interview and Oberst caregiving burden scale respectively. The independent variables examined were quality of care relationship, care management strategies for managing patients’ behaviour, family caregiving conflict, formal service usage and assistance to the caregiver. Significant associations were determined using mixed effect modified Poisson regressions. For both types of burden, the scores were slightly higher at 3 months as compared to 1 year. Poorer care-relationship (relative risk: 0.81, 95% confidence interval (CI): 0.70–0.94) and adopting positive care management strategies (relative risk: 1.05, 95% CI: 1.02–1.07) were independently associated with a high subjective burden. Providing assistance to caregivers (relative risk: 2.45, 95% CI: 1.72–3.29) and adopting positive care management strategies (relative risk: 1.03, 95% CI: 1.02–1.04) were independently associated with a high objective burden. Adopting positive care management strategies at 3 months had a significant indirect effect (standardised β: 0.11, 95% CI: 0.01 to 0.20) on high objective burden at one year. Healthcare providers should be aware that excessive care management strategies and assistance from family members may add to caregivers’ burden.

The Lived Experiences of Family Members of a Sibling with Borderline Personality Disorder in South Africa: A Qualitative Study

Background: Family members of people living with borderline personality disorder (BPD) experience a considerable objective and subjective burden. This article aims to report on a study that explored family members’ lived experiences of having a sibling with BPD in South Africa.Method: This qualitative study used in-depth phenomenological individual interviews, supported by participant observations and field notes for data collection. Data were analysed using Tesch’s thematic coding.Results: Seven participants were interviewed, and three themes emerged from the collected data. The study revealed that participants experienced multiple challenges in understanding, gaining control, and struggling to cope with their own lives. Participants also experienced the impact of a lack of communication and education. Lastly, the study revealed that the participants used individual coping mechanisms to cope with having a sibling with BPD.Conclusions: This research illuminated the challenges experienced by family members of a sibling with BPD. These findings provide a basis for recommendations for mental health nurses to promote the mental health of affected family members.

A typology of caregiving spouses of geriatric patients without dementia: caring, worried, desperate

Background An increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers’ health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia. Objectives The aim of this study is to explore the burden and coping strategies of caregiving spouses of geriatric patients without dementia and with a hospitalization within the last year. To help explore this population, a typology is presented that has been based on reported perceptions of home care burden and individual coping strategies. Furthermore, a case study is presented for each type of spousal caregiver. Methods The study used a concurrent mixed method design with a sample of nine spousal caregivers (mean age: 78.9 years). Four women and five men were recruited in an acute hospital setting during the TIGER study. Quantitative data were collected using a self-questionnaire and qualitative data were gathered through nine problem-centered interviews with spousal caregivers. The latter were subsequently analyzed utilizing the structured content analysis method. The data were then summarized to nine individual cases. Finally, the results were clustered using the empirically grounded construction of types and typologies. Each type of spousal caregiver is presented by a case study. Results Three types of caregiving spouses were identified: “The Caring Partner”, “The Worried Manager” and “The Desperate Overburdened”. These types differ primarily in the level of subjective burden and caregiving stress, the coping strategies, the motivation for caregiving, and expressed emotions. Conclusions The development of this new typology of caregiving spouses could help health care professionals better understand caregiving arrangements and thus provide more targeted advice. Trial registration The TIGER study was registered with clinicaltrials.gov: NCT03513159. Registered on April 17, 2018.

Mental well-being during the first months of Covid-19 in adults and children: behavioral evidence and neural precursors

Pandemics such as the Covid-19 pandemic have shown to impact our physical and mental well-being, with particular challenges for children and families. We describe data from 43 adults (31♀, ages = 22–51; 21 mothers) and 26 children (10♀, ages = 7–17 years) including pre-pandemic brain function and seven assessment points during the first months of the pandemic. We investigated (1) changes in child and adult well-being, (2) mother–child associations of mental well-being, and (3) associations between pre-pandemic brain activation during mentalizing and later fears or burden. In adults the prevalence of clinically significant anxiety-levels was 34.88% and subthreshold depression 32.56%. Caregiver burden in parents was moderately elevated. Overall, scores of depression, anxiety, and caregiver burden decreased across the 11 weeks after Covid-19-onset. Children’s behavioral and emotional problems during Covid-19 did not significantly differ from pre-pandemic levels and decreased during restrictions. Mothers’ subjective burden of care was associated with children’s emotional and behavioral problems, while depression levels in mothers were related to children’s mood. Furthermore, meeting friends was a significant predictor of children’s mood during early restrictions. Pre-pandemic neural correlates of mentalizing in prefrontal regions preceded later development of fear of illnesses and viruses in all participants, while temporoparietal activation preceded higher subjective burden in mothers.

Burden on caregivers of schizophrenia outpatients in Brazil: Relationship to symptomatology and functioning

Background: To investigate the objective and subjective burden on caregivers of schizophrenia outpatients and their associations with sociodemographic factors, symptomatology, and functioning. Methods: This study included 60 schizophrenic outpatients aged 18 to 65 years who were clinically stable for at least 6 months, and 60 caregivers aged 18 to 80 years who were in contact with the patient for ⩾30 hours/week. The patients were assessed using a sociodemographic questionnaire, the Clinical Global Impression Scale for Schizophrenia (CGI-SCH), and the Personal and Social Performance scale (PSP). The caregivers were assessed using a sociodemographic questionnaire and the Family Burden Interview Schedule, Brazilian version (FBIS-BR). Results: The objective burden was positively correlated with CGI-SCH cognitive symptom scores ( p = .032) and number of hours spent weekly with the patient ( p = .028), and negatively correlated with PSP score ( r = −.346, p = .007). The subjective burden showed a negative correlation with age of disease onset ( r = −.338, p = .08). The independent variables included in the regression model were family income ( p = .005), PSP score ( p = .009), patient marital status ( p = .012), patient gender ( p = .046), and reception of financial benefit ( p = .027) for objective burden; and disease duration ( p = .045) and father/mother or sibling relationship ( p = .001) for subjective burden. The coefficient of determination ( R2) of the linear regression model for objective burden was 39.4%; subjective burden, 21.6%. Conclusion: Caring for female, single patients with longer disease duration, more severe cognitive symptoms, impaired functioning, and more caregiving time required per week were associated with higher caregiver burden levels.