Relations among co-occurring psychopathology in youth with autism spectrum disorder,family resilience,and caregiver coping

BackgroundCo-occurring mental health problems are common in youth with autism spectrum disorder (ASD) and are associated with greater caregiver stress; however, it is not known whether such challenges overwhelm caregivers’ ability to cope. Research has demonstrated that families of children with ASD are able to demonstrate resilience; yet, whether family resilience functions as a compensatory or protective factor in ASD families has not been investigated. This study aimed to examine the relations among family resilience, co-occurring psychopathology in youth with ASD, and caregiver coping.MethodData from this study were obtained from the 2016–2018 National Survey of Children’s Health (NSCH). Multiple binary logistic regression was run to examine the associations among commonly co-occurring psychiatric disorders in youth with ASD (i.e., anxiety, depression, attention-deficit/hyperactivity disorder, and behavioral/conduct problems) and caregiver coping. Another multiple binary logistic regression was run to examine whether family resilience moderates the aforementioned relationships.ResultsYouth with ASD and co-occurring conduct problems or depression were significantly more likely to be cared for by adults who were not coping well. High family resilience was directly associated with lower odds of poor parental coping; nonetheless, co-occurring conduct problems and depression were still associated with worse coping of caregivers after accounting for family resilience.ConclusionsFindings indicate that co-occurring depression and conduct problems in ASD youth may overwhelm their caregivers’ coping resources. Results also suggest that interventions targeting family resilience may improve the coping of adults caring for children and adolescents with ASD.     

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.     

Highly resilient coping entails better perceived health,high social support and low morning cortisol levels in parents of children with autism spectrum disorder

The negative consequences of caring for people with developmental disabilities have been widely described. However, the ability to bounce back from the stress derived from care situations has been less studied. Those caregivers who have shown this ability are considered as resilient. This study aims to evaluate the relationship between resilience and self-reported health and cortisol awakening response (CAR) in a sample of caregivers of people with autism spectrum disorders (ASD). It also aims to evaluate the role of social support as a mediator in the association between resilience and health. Caregivers with higher resilience show better perceived health, lower morning cortisol levels, and less area under the curve with respect to ground (AUC_g). Social support was positively related to resilience and mediated the relationship between resilience and perceived health. This mediating effect was not found in the association between resilience and CAR. Resilience could be a protective factor that modulates the negative consequences of chronic stress in the care context. Social support could be an important variable mediating the effects of resilience on health outcomes in caregivers. All these results must be considered when implementing effective psychological programs for helping caregivers.     

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.     

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.     

Psychometric evaluation of the shortened resilience scale among Alzheimer's caregivers

The purpose of this study was to evaluate psychometric properties of the shortened Resilience Scale (15-item version RS15) among a sample of Alzheimer's caregivers. Self-reported data were collected from 229 participants at 2 Alzheimer's caregiver conferences. RS15 principal axis factoring indicated a single-dimensional solution with all items loaded. Reliability was strong. Convergent validity for the RS15 was suggested through its correlations with stress, family support, and friend support. Odds ratios showed significant likelihoods of high resilience given low stress and high social support. The results confirmed the RS15 to be a psychometrically sound measure that can be used to appraise the efficacy of adaptability among Alzheimer's caregivers.     

Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study.

OBJECTIVE: There are high rates of stress, distress, and psychological illness in family caregivers of people with dementia. Female caregivers and those caring for people with neuropsychiatric symptoms are particularly at risk. The authors report on the prevalence of anxiety and depression in a sample of family caregivers of people with Alzheimer disease (AD) and compare the characteristics of those who did or did not have those conditions. METHODS: A group of 153 people with AD and their caregivers were interviewed as part of a larger study of AD. RESULTS: In all, 23.5% of caregivers scored at or above caseness level for anxiety, and 10.5%, at levels for depression. Care-recipient (CR) activities of daily living (ADL) impairment, being a caregiver living with the CR, being a female caregiver, reporting a poorer quality of relationship with the CR, and caregivers reporting their health as being poor all predicted anxiety disorder. CR irritability, caregivers reporting poor health, and a poorer quality of relationship with the CR predicted depression. CONCLUSIONS: Clinicians should be aware of the high rates of anxiety as well as depressive symptoms in family caregivers of people with AD, especially in female caregivers. CRs and Caregivers' impaired physical health put them at risk for psychological morbidity and should be treated energetically. A poor-quality relationship between the caregiver and the CR predicts both caregiver depression and anxiety. Caregivers living with the CR are much more likely to be anxious than depressed.     

Reaping caregiver feelings of gain: The roles of socio-emotional support and mastery

Objectives: Existing studies indicate that the presence of social support increases the likelihood of caregivers experiencing feelings of gain from caregiving; however, researchers have not yet investigated the mechanism through which social support is linked to caregiver feelings of gain. Informed by Bandura's Social Cognitive Theory, the present study investigated whether a sense of caregiving mastery serves as a key mechanism.

Method: Sixty-three family caregivers of dependent elders completed surveys to assess caregiver feelings of gain, socio-emotional support (from family, friends, spouse/partner) and mastery. To evaluate the hypothesized mediation model, a series of structural equation modeling (SEM) analyses were conducted with the maximum likelihood method by Lisrel 8.8.

Results: Socio-emotional support from family members was found to be an important resource for caregiver feelings of gain. SEM analyses further revealed that the mechanisms by which socio-emotional support influences caregiver feelings of gain vary depending on its source (i.e. family members, friends, and partners).

Conclusion: As hypothesized, caregiving mastery played a mediating role for non-partner family socio-emotional support whereas it did not for partner socio-emotional support. Based on availability or absence of specific sources of support, caregiver intervention programs should be individually tailored to enhance their potential impact.     

A Review of the Psychobiology of Dementia Caregiving: A Focus on Resilience Factors

The recent aging trend in the United States has resulted in exponential growth in the number of informal dementia caregivers. Caring for a family member with dementia has been associated with negative health outcomes that are likely related to physiologic changes resulting from stress. However, caregiving is not always associated with health morbidity. In this review, we highlight resilience factors that appear to have a beneficial relationship with health outcomes. Specifically, we highlight 11 studies that examined the relationship of one of three broad resilience domains (personal mastery, self-efficacy, and coping style) to caregiver health outcomes. Our main findings were that higher levels of personal mastery and self-efficacy, and increased use of positive coping strategies appear to have a protective effect on various health outcomes in dementia caregivers. Continued research is warranted to help guide prospective directions for caregiver interventions focusing on increasing caregiver resilience and the corresponding impact on caregiver health.     

Family caregiver support groups: spiritual reflections’ impact on stress management

Objectives: Caregiving for people with neurodegenerative disease (e.g. Alzheimer's disease (AD); frontotemporal dementia (FTD)) is provided primarily by the family care system. Caregiving is taxing and much of the caregiving research is guided by a stress/adaptation theoretical perspective. Within this theoretical model, the role of spirituality in rendering meaning to the caregiver role remains unexplored. We conducted a qualitative analysis of expressions of spirituality and its meaningfulness during the caregiving journey within the context of an online video conferencing support group intervention program.Methods: Eighteen AD and six FTD caregivers participated in the Caring for Others evidence-based program consisting of 10 weekly virtual online support group sessions facilitated by experienced gerontological social workers.Results: Content analysis of the video-recorded group interactions yielded recurrent themes of caregivers’ spiritual reflections and their associations with managing caregiver stress responses.Conclusion: The findings inform professional observations of the importance of spiritual beliefs in understanding how caregivers ascribe both positive and negative meanings to critical life events and their management.     

Depressive symptom trajectories and associated risks among bereaved Alzheimer disease caregivers.

OBJECTIVES: A recent study concluded that depressive symptoms among caregivers decline on average from before to after the Alzheimer disease (AD) patient's death. The present study sought to determine if subgroups of bereaved AD caregivers follow distinctive depressive symptom trajectories and the characteristics associated with membership in depressive symptom subgroups. DESIGN: Latent class mixture models sought to identify clusters of homogeneous participants in the Resources for Enhancing Alzheimer's Caregiver Health study-a multisite, randomized caregiver intervention trial. PARTICIPANTS: One hundred eighty-two community-based bereaved caregivers were included in the study. MEASUREMENTS: The Center for Epidemiologic Studies Depression Scale assessed depressive symptoms among the AD caregivers at baseline and three follow-up visits. RESULTS: Three postloss depressive symptom trajectories emerged: persistently syndromal depression (N = 30, 16.5%); syndromal-becoming-threshold level depression (N = 62, 34.0%); and persistently absent depression (N = 90, 49.5%). Lower income, higher preloss depression levels, greater caregiver behavioral burden, less family support, and adverse health behaviors (e.g., smoking, skipped meals, and lack of exercise) after loss were risk factors for syndromal and syndromal-becoming-threshold level depression after loss. CONCLUSIONS: Early intervention to reduce caregiving behavioral burden and enhance family support and promote healthier behaviors of bereaved AD caregivers may decrease the risk of syndromal or syndromal-becoming-threshold level depression after loss.     

Stress processes in caring for an end-of-life family member: Application of a theoretical model

Objectives: Family caregivers play a vital role in maintaining the lives of individuals with advanced illness living in the community. However, the responsibility of caregiving for an end-of-life family member can have profound consequences on the psychological, physical and financial well-being of the caregiver. While the literature has identified caregiver stress or strain as a complex process with multiple contributing factors, few comprehensive studies exist. This study examined a wide range of theory-driven variables contributing to family caregiver stress.

Method: Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index.

Results: The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health.

Conclusion: This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.     

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.     

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population

Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers.

Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted.

Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p?p?p?r?=??2.97). Presence of depression (p?r?=?0.381) was positively correlated and family caregiver role was negatively correlated (p?r?=??0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers.

Conclusions: The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.     

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.     

Differences in stress and coping models of emotional distress among Korean, Korean-American and White-American caregivers

This study compares path models of emotional distress among three groups of caregivers for elderly patients with dementia: 64 Koreans residing in Korea, and 53 Korean-Americans and 54 White-Americans living in the USA. The results support a common core model throughout the three groups: patient's disruptive behavior leads to caregiver burden, which then affects caregivers' depression and anxiety. Instrumental support was found to be an important factor for Korean caregivers and emotional support was important for Korean-Americans. Only Korean-American caregivers appraised all three patient's problems--patient's disruptive behaviors, memory problems, and depression as burdensome. These findings suggest that stress and coping processes in caregivers from different cultures involve a common core with important differences in the effects of the patient's problems and of social support.     

Problematic Social Media Use and Social Connectedness in Adolescence: The Mediating and Moderating Role of Family Life Satisfaction

Problematic social media use (PSMU) among adolescents has become an area of increasing research interest in recent years. It is known that PSMU is negatively associated with social connectedness. The present study examined the role of family life satisfaction in this relationship by investigating its mediating and moderating role in the relationship between problematic social use and social connectedness. The present study comprised 549 adolescents (296 girls and 253 boys) who had used social media for at least 1 year and had at least one social media account. The measures used included the Social Media Disorder Scale, Social Connectedness Scale, and Family Life Satisfaction Scale. Mediation and moderation analyses were performed using Hayes’s Process program. Regression analysis showed that PSMU negatively predicted family life satisfaction and social connectedness. In addition, family life satisfaction and PSMU predicted social connectedness. Mediation analysis showed that family life satisfaction had a significant mediation effect in the relationship between PSMU and social connectedness. Family life satisfaction was partially mediated in the relationship between PSMU and social connectedness. Moderation analysis showed that family life satisfaction did not have a significant effect on the relationship between PSMU and social connectedness. The study suggests that family life satisfaction is a meaningful mediator (but not a moderator) in the relationship between problematic social media use and social connectedness.

     

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.     

Social resourcefulness: Its relationship to social support and wellbeing among caregivers of dementia victims

Social resourcefulness refers to the behaviors, covert and overt, which an individual uses to establish and maintain supportive relationships. This study examines how social resourcefulness relates to social support and wellbeing in persons under the chronic stress of caring for a family member with dementia. Social resourcefulness is significantly associated with social support and with caregiver wellbeing (caregiver depression, caregiver quality of life, perceived benefits from caregiving, and perceived health status). Regression analyses revealed that social resourcefulness remained significantly related to caregiver outcomes after controlling for several covariates (care-recipient's memory and behavior problems, caregiver age, and caregiver health status). Results support the role of social competence in creating helpful social relationships and extend previous research by identifying specific help-seeking and help-maintaining behaviors associated with support and wellbeing in a high-risk population.     

Care recipients' psychological well-being: the role of sense of control and caregiver type

The current study tested mediation and moderation hypotheses to examine the link between caregiver type, sense of control, and depressive symptoms in older adult care recipients. All recipients (127 older adults, aged 60-98) reported at least one instrumental activity of daily living impairment and 75% reported at least one activity of daily living limitation. Results indicated that care recipients' depressive symptoms varied by caregiver type and level of sense of control. Recipients with low sense of control and family caregivers reported higher depressive symptoms than those with a low sense of control and non-family caregivers. The findings suggest that although some care recipients have caregivers they may yet experience poor psychological well-being. Implications for practitioners are that in addition to their medical and physical health needs, the psychological well-being of care recipients is also important to consider.