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.     

Burden and quality of life in caregivers of persons with multiple sclerosis

Multiple sclerosis (MS) is the second most common cause of disability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients’ perception of their status of health and on subjective well-being or satisfaction with life. Subjective factors of QoL in MS patients include perception of symptoms, level of fitness, self-image, satisfaction with family life, work, the economic situation, interaction with other people, social support and life in general. Objective factors include the clinical picture of disease, social status, social and living conditions and the number and intensity of social contacts. While many generic and specific questionnaires have been developed to assess QoL in patients with MS, including general fatigue, there is a lack of specific questionnaires assessing QoL of caregivers.In this paper, a review of selected studies on QoL and caregiver burden in MS and a summary of the most popular questionnaires measuring burden and QoL are presented. Special attention is paid to the first questionnaire specific for QoL of carers of persons with MS, CAREQOL-MS by Benito-León et al.     

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.     

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.     

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.     

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.     

Predictors of Depressive Symptomatology Among Lower Social Class Caregivers of Persons with Chronic Mental Illness

This study examined the predictors of depressive symptomatology among caregivers of persons with chronic mental illness. Data were collected through in-person interviews with family caregivers of 103 adults with chronic mental illness who were served by mental health case management agencies. The results indicated that insufficiency of overall social support was the most powerful predictor of caregiver depressive symptomatology. In addition, caregiver burden had a significant unique contribution to caregiver depressive symptomatology, with higher levels of burden associated with greater levels of caregiver depressive symptomatology. Higher levels of client behavioral problems and insufficient support from family members and mental health professionals related to the caregiving role were associated with higher levels of caregiver depressive symptomatology through their associations with care-giver burden. Caregiver race was not significantly related to caregiver burden or to caregiver depressive symptomatology after controlling for other variables. Over two-fifths of White caregivers and over one-quarter of Black caregivers were at risk for clinical depression. Implications for practice and research are discussed.     

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.     

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.     

Emotional over-involvement can be deleterious for caregivers’ health

The study of emotional over-involvement (EOI) has focused primarily on its relationship with patients’ course of illness. We know little about the predictors and possible consequences of EOI for caregivers. Based on past research, we tested the hypotheses that EOI is associated with worse physical and psychological health among caregivers and examined whether caregiver burden and social support may mediate this relationship. Method In a sample of 37 Mexican American caregivers and their ill relatives recruited from two outpatient clinics, we examined the relationships between EOI, caregiver burden, caregivers’ level of social support, and caregivers’ health. Additionally, we examined whether caregiver burden and social support may mediate the relationship between EOI and caregivers’ health. Cross-sectional analysis indicates that at baseline EOI was not associated with caregiver burden or social support, but was related to worse current health. Longitudinal analysis, however, indicates that EOI at baseline was associated with greater burden, less instrumental support, and worse health among caregivers at follow-up. Moreover, objective burden and instrumental support mediated the relationship between EOI and several health outcomes. Consequently, EOI may be a marker of poor current health status and predicts worse future health among Mexican–American caregiving relatives of individuals with schizophrenia. Moreover, changes in burden and social support associated with EOI appear to mediate the relationship between EOI and several health outcomes among caregivers. These findings suggest that it might be important for family interventions to not only address the functioning of individuals with schizophrenia but also their caregiving relatives.     

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.     

Satisfaction of caregivers of patients with schizophrenia in Finland

OBJECTIVE: The aims of the study were to determine whether the caregivers of discharged patients with schizophrenia were satisfied with their situation in general and with psychiatric services in particular and to examine the factors associated with caregiver satisfaction. METHODS: The data were drawn from a national project designed to study the treatment and life situation of deinstitutionalized schizophrenia patients in Finland. The patients were discharged from psychiatric hospitals in 1986, and both the patients (N=775) and their caregivers (N=545) were interviewed after a three-year follow-up. RESULTS: One-fifth of the caregivers were dissatisfied with the situation in general, and one-third were dissatisfied with the psychiatric services the patient received. Caregivers were more likely to be dissatisfied with the situation if they lived with the patient and if the patient's functional state was poor or the patient's use of services, particularly medication and rehabilitation, was low. Caregivers were likely to be dissatisfied with the psychiatric services if the patient had severe psychotic symptoms and poor "maintenance of grip on life" or if the patient was given less psychiatric care and rehabilitation or used more social services. CONCLUSIONS: The satisfaction of caregivers of persons with mental illness appears to have two dimensions. First, caregivers need to be accepted and treated as active partners in the patients' care and rehabilitation. Second, the burden on the families of persons with mental illness can be alleviated with long-term rehabilitation and care to help patients gain as high a functional state as possible.     

Predictors of positive and negative appraisal among Cuban American caregivers of Alzheimer's disease patients

OBJECTIVE: This study investigated predictors of positive (satisfaction) and negative (burden) appraisal among Cuban American (CA) caregivers of Alzheimer's disease (AD) patients. DESIGN: Cross-sectional study of AD patients and their family caregivers. SETTING: A university-affiliated outpatient memory disorders clinic. SUBJECTS: A convenience sample of 40 CA family caregivers of patients diagnosed with probable or possible AD according to NINCDS-ADRDA diagnostic criteria. MEASURES: AD patients: Mini-Mental State Examination (MMSE), Blessed Dementia Scale (BDS) and the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD). Caregivers: Caregiving Burden Scale (CBS), Caregiving Satisfaction Scale (CSS), Perceived Emotional Support scale (PES) and the Short Form-36 Health Survey-General Health Index (GH). RESULTS: Appraised burden was predicted by increased patient behavioral pathology, female caregiver gender and lower levels of perceived emotional support. The association between older caregiver age and increased burden approached significance. Older caregiver age and higher levels of perceived social support were shown to predict appraised satisfaction. Post-hoc analyses also indicated that length of residence in the United States, a measure of acculturation, was not associated with positive or negative appraisal. CONCLUSION: Appraised burden and satisfaction represent important outcomes of dementia care that show relations with distinct factors among CA caregivers. It is clear that further research is warranted in order to ascertain the relationship of ethnicity or culture to the process and psychological consequences of dementia caregiving. Continued investigations into predictors of caregiving satisfaction are also recommended.     

A stress and coping model of adjustment to caring for an adult with mental illness

This study investigated the utility of a stress and coping framework for identifying factors associated with adjustment to informal caregiving to adults with mental illness. Relations between stress and coping predictors and negative (distress) and positive (positive affect, life satisfaction, benefit finding, health) carer adjustment outcomes were examined. A total of 114 caregivers completed questionnaires. Predictors included relevant background variables (carer and care recipient characteristics and caregiving context), coping resources (optimism, social support, carer-care recipient relationship quality), appraisal (threat, control, challenge) and coping strategies (problem-focused, avoidance, acceptance, meaning-focused). Results indicated that after controlling for relevant background variables (burden, caregiving frequency, care recipient symptom unpredictability), better caregiver adjustment was related to higher social support and optimism, better quality of carer-care recipient relationship, lower threat and higher challenge appraisals, and less reliance on avoidance coping, as hypothesised. Coping resources emerged as the most consistent predictor of adjustment. Findings support the utility of stress and coping theory in identifying risk and protective factors associated with adaptation to caring for an adult with mental illness.     

Predictors of Subjective Well-being among Individuals with Multiple Sclerosis

Neuropsychological and psychosocial predictors of subjective well-being (SWB) were examined among 74 persons with multiple sclerosis (MS). The multidimensional construct of SWB was assessed by self-report measures of acute psychological distress, global life satisfaction, and health-related quality of life (HRQoL). Objective disease-related indices were obtained from medical records and neuropsychological testing. Unawareness of deficit, a frequent aspect of executive function impairments in MS, was measured as the discrepancy between patient self-report of functional abilities and a caregiver's report of the patient's abilities. Results indicate that a substantial proportion of patients experienced diminished SWB and that disease characteristics such as duration and severity have differential relationships to SWB outcomes. Multiple regression analyses indicated that, in the context of a combined predictive model, social support and unawareness of deficit provided unique information in predicting all three aspects of SWB, beyond that accounted for by disease characteristics. Both social support and unawareness of deficit were associated with positive well-being outcomes. Neuropsychological impairment was adversely related to life satisfaction and HRQoL, but it did not add unique information to the prediction of these outcomes. The findings present a unique view of SWB among individuals with MS in the absence of acute exacerbation of the illness.     

Predictors of subjective well-being among individuals with multiple sclerosis

Neuropsychological and psychosocial predictors of subjective well-being (SWB) were examined among 74 persons with multiple sclerosis (MS). The multidimensional construct of SWB was assessed by self-report measures of acute psychological distress, global life satisfaction, and health-related quality of life (HRQoL). Objective disease-related indices were obtained from medical records and neuropsychological testing. Unawareness of deficit, a frequent aspect of executive function impairments in MS, was measured as the discrepancy between patient self-report of functional abilities and a caregiver's report of the patient's abilities. Results indicate that a substantial proportion of patients experienced diminished SWB and that disease characteristics such as duration and severity have differential relationships to SWB outcomes. Multiple regression analyses indicated that, in the context of a combined predictive model, social support and unawareness of deficit provided unique information in predicting all three aspects of SWB, beyond that accounted for by disease characteristics. Both social support and unawareness of deficit were associated with positive well-being outcomes. Neuropsychological impairment was adversely related to life satisfaction and HRQoL, but it did not add unique information to the prediction of these outcomes. The findings present a unique view of SWB among individuals with MS in the absence of acute exacerbation of the illness.     

Coping and its correlates among caregivers of patients with bipolar disorder: a preliminary study

Objectives:  In contrast to schizophrenia, coping patterns of caregivers of bipolar patients have not received much attention. Previous evidence suggests that demographic factors, illness variables, caregiver burden, appraisal, etc can significantly influence coping styles. This study thus attempted to examine coping and its correlates in caregivers of bipolar patients, in comparison with schizophrenia.
Method:  Structured assessments of dysfunction, burden, appraisal, social support available, and coping styles were carried out in caregivers of 38 bipolar patients and 20 patients with schizophrenia (ICD – 10 diagnoses).
Results:  Caregivers used a wide variety of coping strategies, both problem and emotion-focused. In bipolar disorder, demographic parameters, illness duration, levels of dysfunction, burden and social support, and appraisal by caregivers demonstrated significant associations with coping styles of caregivers. Problem-focused coping strategies were more common in caregivers of bipolar patients and emotion-focused strategies in caregivers of schizophrenic patients. These differences appeared to be linked to differences in caregiver-burden and appraisal between the two groups.
Conclusions:  Appraisal by, and burden on caregivers play a major role in determining their style of coping. These factors largely accounted for the differences in coping observed between caregivers of patients of bipolar disorder and schizophrenia, in this study. Reducing burden on caregivers and enhancing their awareness of illness could lead to adoption of more adaptive coping styles by them.     

Parent caregiver adjustment to cancer of an adult child

OBJECTIVE: The objective of this study is to assess which contextual variables (parent caregiver, social support, age and gender) and objective variables (type of diagnosis, stage of illness and patient distress) affected the adjustment to illness of parent caregivers of an adult married ill child. METHOD: Forty-one parent caregivers of an adult married cancer-diagnosed child completed a questionnaire that measured psychological adjustment (Brief Symptom Inventory, BSI), psychosocial adjustment to illness (Psychosocial Adjustment to Illness Scale, PAIS) and social support (MSSPS). RESULTS: Preliminary findings indicate that social support and the patient's psychological distress were the main effects on the parents' psychological adjustment to the illness. CONCLUSION: A psychosocial intervention program for parents is needed so as to reduce their distress arising from the stress of the illness.     

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.