Social support moderates caregiver life satisfaction following traumatic brain injury

Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.     

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients’ unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients’ illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.     

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients' unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients' illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.     

Caregiving appraisal after traumatic brain injury: The effects of functional status, coping style, social support and family functioning

Perception of caregiving after traumatic brain injury (TBI) has been shown to be an important part of both survivor and family adjustment. The roles of coping style, family functioning, perceived social support and the TBI survivor's functional status have not been fully examined with respect to appraisal of caregiving. This study examined these factors with respect to both positive and negative appraisals of caregiving in four main areas: perceived burden, caregiving relationship satisfaction, beliefs about caregiving, and mastery with caregiving. Sixty primary caregivers of individuals who sustained a TBI within the last 6 months to 15 years were administered the Caregiver Appraisal Scale, as well as the Coping Inventory for Stressful Situations, a 21-item version of the Family Assessment Device, and the Social Provision Scale. These findings were examined in relation to the TBI survivor's scores on the Disability Rating Scale and the Functional Independence Measure at the same time points post-injury. Results revealed that the majority of caregivers in those with moderate to severe brain injuries experienced dissatisfaction with many aspects of caregiving, especially with respect to feelings of burden and mastery. Additionally, emotionally-focused coping, behavioral control issues with respect to family functioning, and perceived social support appear to be most highly related to perceptions of burden, whereas perceived social support alone was the strongest factor in one's perception of caregiving mastery and satisfaction with the caregiving relationship. Interestingly, caregiving ideology was most closely related to avoidance-oriented coping. These results have direct implications for the development of interventions for caregivers of persons with TBI, especially with respect for the need to assess coping style and the development of social support networks.     

Changes in social support and their impact on psychosocial outcome over a 5-year period for African American and White dementia caregivers

BACKGROUND: African Americans have been found to be more resilient to the caregiving role than Whites. Amount of social support and satisfaction with social support were studied as possible explanations for these racial differences. METHODS: Family caregivers of patients diagnosed as having dementia participated in a longitudinal study. There were 166 caregiver-patient dyads enrolled and annual follow-up assessments were completed. Linear random effects regression models examined the longitudinal trajectories of social support, depressive symptoms, and life satisfaction over 5 years of community follow-up. Social support was also included as a time-dependent predictor of depressive symptoms and life satisfaction. RESULTS: The number of helpful support persons available decreased significantly for both racial groups. African American caregivers reported more satisfaction with their social support networks than Whites. They also reported fewer depressive symptoms and higher levels of life satisfaction when compared to their White counterparts. Higher levels of satisfaction with social support were associated with fewer depressive symptoms and increased levels of life satisfaction and explained a portion of the racial differences on these measures of psychosocial outcome. CONCLUSIONS: The resilience of African American caregivers, as displayed by their fewer depressive symptoms and higher levels of life satisfaction, was partially explained by their higher levels of satisfaction with social support. Results suggest that health care providers should view low levels of social support as a possible precursor to poor psychological outcomes in caregivers. Future research should focus on social support and cultural variables that might explain racial differences in caregiver outcomes.     

Predictors of burden and depression among nursing home family caregivers

This study identified predictors of caregiver burden and depression among family caregivers to nursing home residents. Pearlin's stress process model was used as a theoretical framework. Structured interviews were conducted with 103 family caregivers to nursing home residents. Multiple regression analysis was used to determine the relationship of contextual variables (caregiver age, income, health), caregiving stressors (resident's memory and behaviour problems, caregiving tasks, satisfaction with nursing home), and social support with caregiver burden and depression. All three domains of predictor variables were significantly related to caregiver burden. Only contextual factors and social support predicted depression. Depression levels were elevated in this sample, with the mean falling above the cutoff for clinical depression. Family members of nursing home residents are at risk for caregiver burden and depression and each outcome has unique predictors in this population. Understanding factors associated with greater burden and depression can guide nursing home staff and mental health professionals in working with family members. Older family members, those in poor physical health or with low incomes are at highest risk, particularly for depression; while families of more impaired residents are at higher risk for burden. Social support is an important factor in alleviating burden and promoting positive mental health.     

Spouses' quality of life 1 year after stroke: prediction at the start of clinical rehabilitation

BACKGROUND AND PURPOSE: The purpose of this prospective study was to identify early predictors of spouses' quality of life at 1 year after stroke. METHODS: At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed. RESULTS: About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified 'passive coping strategy of the caregiver' as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0-4% of the variance. CONCLUSIONS: A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.     

Caregiver burden during the year following severe traumatic brain injury

Fifty-two primary caregivers of people with a severe traumatic brain injury (TBI) were assessed at 6-months and 1-year postinjury. Caregiver appraisal of the person with TBI's physical, cognitive, emotional, behavioural, and social functioning was assessed. Caregiver psychosocial functioning and levels of subjective and objective burden were also assessed. Some aspects of the difficulties reported for the people with TBI remained stable, while others increased in frequency, over time. At 6-months postinjury, approximately one third of caregivers reported clinically significant symptoms of anxiety and depression, and poor social adjustment. By 1-year postinjury, the prevalence of anxiety and depression remained the same, although only one-quarter continued to report poor social adjustment. There was some evidence of adaptation by caregivers, as the frequency with which various types of objective burden were reported remained stable, while the distress caused by these decreased in the first year postinjury. It appears that the impact on caregivers of physical impairment is comparatively short-lived and that caregivers learn some practical ways to manage the behavioural problems of the people with TBI. Despite this, over time the person with TBI's behavioural and cognitive problems begins to play a larger role in the level of distress experienced by the caregiver. However, it is the person with TBI's social isolation that has a stable and consistent role in the experience of subjective burden for primary caregivers in the first year postinjury.     

Balancing act: the influence of adaptability and cohesion on satisfaction and communication in families facing TBI in Mexico

Much of what is known about family functioning in the face of traumatic brain injury (TBI) is based on research conducted in the United States. The purpose of this study was to (1) describe the levels of family adaptability, cohesion, communication, and satisfaction as reported by Mexican TBI survivors and their family caregivers, (2) test the hypothesis of the Circumplex Model that balanced families would exhibit better communication and greater satisfaction, and (3) explore how TBI survivors' and their family caregivers' perceptions of family adaptability and cohesion influenced their own and the other's perceptions of family communication and satisfaction. In the majority of dyads, both the TBI survivor and the family caregiver endorsed balanced family adaptability and cohesion. Both TBI survivors and their family caregivers reported a relatively high level of family communication and satisfaction. TBI survivors and family caregivers who reported greater levels of family adaptability and cohesion also endorsed better family communication and greater family satisfaction. In addition, individuals with TBI whose family caregiver endorsed balanced family adaptability and cohesion reported better family communication. Further, family caregivers of TBI survivors who reported balanced family adaptability and cohesion reported better family communication. Implications for research and practice are discussed.     

Perceived stress and resilience in Alzheimer's disease caregivers: testing moderation and mediation models of social support

Objective: The study examined whether social support functioned as a protective, resilience factor among Alzheimer's disease (AD) caregivers. Moderation and mediation models were used to test social support amid stress and resilience. Method: A cross-sectional analysis of self-reported data was conducted. Measures of demographics, perceived stress, family support, friend support, overall social support, and resilience were administered to caregiver attendees (N = 229) of two AD caregiver conferences. Hierarchical regression analysis showed the compounded impact of predictors on resilience. Odds ratios generated probability of high resilience given high stress and social supports. Social support moderation and mediation were tested via distinct series of regression equations. Path analyses illustrated effects on the models for significant moderation and/or mediation. Results: Stress negatively influenced and accounted for most variation in resilience. Social support positively influenced resilience, and caregivers with high family support had the highest probability of elevated resilience. Moderation was observed among all support factors. No social support fulfilled the complete mediation criteria. Conclusion: Evidence of social support as a protective, moderating factor yields implications for health care practitioners who deliver services to assist AD caregivers, particularly the promotion of identification and utilization of supportive familial and peer relations.     

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics,caregiving burden,family functioning,and social and professional support

Objective: Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL.

Methods: 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed.

Results: Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD?=?3.7), 13.3 (SD?=?4.2), 11.0 (SD?=?4.7) and 13.5 (SD?=?3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis.

Conclusions: There is a significant association between the caregiver’s burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.     

Effects of home, outside leisure, social, and peer activity on psychological health among Japanese family caregivers

Objective: Previous research has indicated that informal caregivers’ personal activities are disrupted by their caregiving role, leading to psychological stress and lower life satisfaction. However, the extent to which engagement in personal activities affects caregivers’ psychological health remains unclear. This study examines the relationship between different types and frequencies of activities and both positive and negative parameters of the psychological health of caregivers.

Methods: A mail survey was conducted with 727 family caregivers of older persons using adult day-care services in the Tokyo metropolitan area. Perceived caregiver burden, care satisfaction, life satisfaction, and depression were used as psychological health outcomes. Engagement in home, outside leisure, social, and peer activities, as well as caregiver and care-recipient characteristics and caregiving situations, were assessed using a multivariate regression analysis.

Results: Engagement in home activities was related to lower scores on burden and depression and greater care satisfaction after controlling for care needs and caregiver characteristics, and social and peer activities were associated with greater life satisfaction. More frequent engagement was also associated with better psychological health, but a moderate involvement in home activities was most strongly associated with better care satisfaction. The amount of outside leisure activity was not significantly related to any of the outcomes.

Conclusion: This study shows that activity type and frequency are associated with caregivers’ psychological health, extending previous findings and providing practical implications for the support of family caregivers through programs to improve their participation in specific types of activities.     

Caregiver Burden During the Year Following Severe Traumatic Brain Injury

Fifty-two primary caregivers of people with a severe traumatic brain injury (TBI) were assessed at 6-months and 1-year postinjury. Caregiver appraisal of the person with TBI's physical, cognitive, emotional, behavioural, and social functioning was assessed. Caregiver psychosocial functioning and levels of subjective and objective burden were also assessed. Some aspects of the difficulties reported for the people with TBI remained stable, while others increased in frequency, over time. At 6-months postinjury, approximately one third of caregivers reported clinically significant symptoms of anxiety and depression, and poor social adjustment. By 1-year postinjury, the prevalence of anxiety and depression remained the same, although only one-quarter continued to report poor social adjustment. There was some evidence of adaptation by care-givers, as the frequency with which various types of objective burden were reported remained stable, while the distress caused by these decreased in the first year postinjury. It appears that the impact on caregivers of physical impairment is comparatively short-lived and that caregivers learn some practical ways to manage the behavioural problems of the people with TBI. Despite this, over time the person with TBI's behavioural and cognitive problems begins to play a larger role in the level of distress experienced by the caregiver. However, it is the person with TBI's social isolation that has a stable and consistent role in the experience of subjective burden for primary caregivers in the first year postinjury.     

Premorbid relationship satisfaction and caregiver burden in dementia caregivers

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.     

Individual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients

Dementia patient (n = 72) and caregiver characteristics and individual quality of life (IQoL) factors distinguishing low- and high-burden caregivers were evaluated. Measures included patient cognitive, functional and behavioural status, and caregiver burden, well-being, social support appraisal and IQoL. The caregivers were divided by median split into low- and high-burden groups. In the high-burden group daughters were over-represented, psychological morbidity was higher, QoL was lower, the patients were more behaviourally disturbed, and there was a trend towards more negative appraisal of informal social support. Of the many QoL factors elicited from caregivers, only 'time for self' and 'finances' differed significantly between the groups. A need for more time away from the patient is a major QoL concern for highly burdened caregivers, and a perceived lack of adequate informal support and/or financial constraints are contributory factors.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

Impact of traumatic brain injury on social cognition in adolescents and contribution of other higher order cognitive functions

Social cognition impairments can contribute to social participation difficulties following traumatic brain injury (TBI). However, little attention has been given to these impairments during adolescence, a period of life when peer relationships are central. The aim of the current study was to examine the impact of a moderate to severe TBI sustained in adolescence on multiple facets of social cognition. Twenty-three adolescents who had sustained a moderate-to-severe TBI were compared with a group of 23 typically developing peers. The Integrated Social Cognition Battery (mentalising, social knowledge, emotion recognition) and the Interpersonal Reactivity Index were administered, along with non-social cognition tests (selective attention, working memory, executive functions), IQ estimation, and a socio-demographic questionnaire. Adolescents with TBI reported having a significantly lower ability to take other people's perspectives versus controls. They also presented significantly lower levels of mentalising. After controlling for non-social higher-order cognitive variables, the group effect on mentalising remained marginally significant, whereas the effect on perspective taking remained significant. Our findings suggest the presence of primary deficits in social cognition following TBI in adolescence. These deficits could partially underlie the social reintegration difficulties encountered following TBI. A systematic assessment of social cognition in clinical practice is necessary.     

Factors associated with stigma among caregivers of patients with bipolar disorder in the STEP-BD study

OBJECTIVE: Little is known about the factors contributing to mental illness stigma among caregivers of people with bipolar disorder. METHODS: A total of 500 caregivers of patients participating in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) study were interviewed in a cross-sectional design on measures of stigma, mood, burden, and coping. Relatives and friends with bipolar disorder were assessed on measures of diagnosis and clinical status, determined by a days-well measure derived from psychiatrist ratings of DSM-IV episode status. Because patients' clinical status varied widely, separate models were run for patients who were euthymic for at least three-fourths of the past year (well group) and for those who met criteria for an affective episode for at least one-fourth of the previous year (unwell group). Stepwise multiple regression was used to identify patient, illness, and caregiver characteristics associated with caregiver stigma. RESULTS: In the unwell group, greater mental illness stigma was associated with bipolar I (versus II) disorder, less social support for the caregiver, fewer caregiver social interactions, and being a caregiver of Hispanic descent. In the well group, greater stigma was associated with being a caregiver who is the adult child of a parent with bipolar disorder, who has a college education, who has fewer social interactions, and who cares for a female bipolar patient. CONCLUSIONS: Mental illness stigma was found to be prevalent among caregivers of persons with bipolar disorder who have active symptoms as well as for caregivers of those who have remitted symptoms. Stigma is typically associated with factors identifying patients as "different" during symptomatic periods. Research is needed to understand how the stigma experienced by caregivers during stable phases of illness differs from the stigma experienced during patients' illness states.     

Caregiver-burden in parkinson's disease is closely associated with psychiatric symptoms, falls, and disability

The majority of care of patients with Parkinson's disease (PD) is provided by informal caregivers; their caregiving not only offers physical and emotional support for patients but also plays a large economic role and prevents early nursing home placement. In order to support caregivers in this role, it is necessary to understand the extent of caregiver-burden and factors associated with increased caregiver-burden and distress. We therefore conducted a postal survey in 123 caregivers of patients with PD to assess caregiver-burden and factors associated with it. The majority of caregivers were female (66%). Over 40% of caregivers indicated that their health had suffered as a result of caregiving, almost half had increased depression scores, and two-thirds reported that their social life had suffered. After adjustment of disease duration, there was no difference in caregiver-burden between younger and older caregivers, or between male and female caregivers. Caregiver-burden increased with increasing disability and symptoms of PD, particularly with mental health problems such as depression, hallucinations, or confusion, and with falls. Caregiver-burden scores also correlated significantly with the patients' depression and quality of life scores, and with caregivers' own satisfaction with their marital and sexual relationship. We conclude that more attention should be paid to caregivers' emotional and physical health, particularly in advancing PD with psychiatric complications and falls. These findings also demonstrate that caregiver and patient quality of life are closely linked and emphasize the importance of including caregiver-burden among the problems associated with PD in order to improve patient and caregiver lives.