The impact of raising a child with autism spectrum disorder (ASD) is frequently accompanied by elevated caregiver stress. Examining the variables that predict these elevated rates will help us understand how caregiver stress is impacted by and impacts child behaviors. This study explored how restricted and repetitive behaviors (RRBs) contributed concurrently and longitudinally to caregiver stress in a large sample of preschoolers with ASD using parallel process multilevel growth models. Results indicated that initial rates of and change in RRBs predicted fluctuations in caregiver stress over time. When caregivers reported increased child RRBs, this was mirrored by increases in caregiver stress. Our data support the importance of targeted treatments for RRBs as change in this domain may lead to improvements in caregiver wellbeing.

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Children with psychologically vulnerable caregivers may be at risk for being labeled as having behavior problems when typical behaviors are viewed by their caregivers as problematic. Research examining the accuracy of the caregivers’ perceptions of children’s behaviors is limited. The purpose of this study was to use the Resiliency Model of Family Stress, Adjustment, and Adaptation to explore family and female caregiver factors associated with appraisals of children’s behaviors, the extent to which these appraisals may be distorted and children’s level of risk of having behavioral problems. A cross-sectional, correlational design was used. Data were collected from female caregivers of preschoolers. Reliable and valid instruments measured family factors, demographic characteristics, comfort in parenting, appraisal of behaviors, daily stress, parenting stress, depressive symptoms, social support, ratings of children’s behaviors, and distortion in the ratings. Analyses included ANOVA, ANCOVA, Chi-square, simultaneous and hierarchical linear regressions. Results indicated that family typology was not associated with the female caregivers’ appraisals of children’s behaviors or distortion of caregivers’ ratings of behaviors; however, it was associated with risk of having children with behavioral problems. In the simultaneous regressions models, greater discomfort with parenting and greater perceived daily stress were associated with more negative appraisals of children’s behaviors by the female caregivers and Caucasian race and higher distortion in behavioral ratings were associated with higher risk of behavioral problems in children. Social support did not buffer the effects of caregiver depression on appraisals of children’s behaviors or level of risk of children having behavioral problems.

With three homogenous caregiver groups (i.e., Alzheimer's caregivers, grandparents raising grandchildren, parents), caregiving styles were explored to determine their reliability and validity, their unique role in predicting caregiver outcomes, and their differences between groups of caregivers. A conceptual framework was adapted to determine the impact of contextual variables, caregiving styles, caregiver appraisal, and mediating variables on caregiving outcomes. A more concise version of the Caregiving Style Scale (CSS) was developed with 49 items yielding an internal consistency coefficient of .74. As expected, three caregiving styles emerged and were positively related to the parallel parenting styles. Across the caregiver samples, there were positive relationships among caregiving style dimensions within the same caregiving style, while those from opposing caregiving styles tended to have negative relationships indicating good convergent and discriminant validity. Authoritative caregiving style dimensions were generally associated with healthier functioning, while authoritarian and permissive caregiving style dimensions were correlated with less healthy functioning. Caregiving style dimensions were among the predictors of several outcome measures, highlighting the importance of their placement in the conceptual framework for caregiver stress and coping. Generally, an unexpected finding was that authoritative caregiving style dimensions tended to predict less adaptive caregiving outcomes, particularly for parents and grandparents, while the impact upon caregiver well-being by authoritarian caregiving style dimensions varied throughout the caregiver groups. Results further indicated that different groups of caregivers tend to take on different caregiving styles, with grandparents and parents tending to differ significantly from Alzheimer's caregivers in their approaches to caregiving.

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Caregivers of individuals with autism often report increased levels of stress and a lack of social support to help them cope with various stressors as they provide care. Without coping mechanisms or social support, as individuals with autism present various behavioral and emotional challenges, caregivers can experience a decline in well-being. Thus, the purpose of this qualitative study was to explore the processes that caregivers of individuals between the ages of 9-18 diagnosed with autism use to cope with stress and social support in Southeast Georgia. Grounded theory was used to describe the perceived thoughts caregivers have about stress and well-being and how they gain control over their situation through adaptation. Individual semi-structured interviews were used to collect data from 20 caregivers of children (ages 9-18) with at least a moderate to severe autism spectrum disorder. Findings reveal that caregivers used problem-focused coping in the identification of stressors that impacted them physically and emotionally. The degree to which stress impacts a caregivers' life is dependent on the way caregivers respond to the stressor. Because coping strategies play a role in response to stress, those strategies led to the development of a theoretical model that aim to understand the processes that generate a response to stress. Data were coded and organized into themes using open and axial coding procedures; a theory was then generated using selective coding, yielding a theory of caregiver coping processes. The improved understanding of the challenges that caregivers face as they provide care for individuals with autism holds potential to minimize the negative outcomes of stressors and harness the potential for more positive coping mechanisms to improve caregiver well-being and promote positive social change.

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Yes / Objectives: The capability to ‘live well’ in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver’s perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life. Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver’s perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia. Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (−1.98; 95% CI: −2.89, −1.07), high perceived social restrictions (−2.04; 95% CI: −2.94, −1.14) and low caregiving competence (−2.01; 95% CI: −2.95, −1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia. Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers. / The IDEAL study is funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’.

Yes / The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed. / The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The IDEAL study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. m. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001.

The aim of this study was to examine the relationship between the stressors of caregiving for a schizophrenic patient and related outcomes. The Caregiver Stress Model was used as the conceptual framework for the current study. The sample of the study was composed of 98 Turkish caregivers of schizophrenic patients who were treated at psychiatry clinics of hospitals in Ankara. Twelve mediation models were tested using marital satisfaction and social support as mediators. The models contained primary stressor (basic needs), secondary stressor (activities of living), and intrapsychic strain (parental efficacy) as independent variables / and depression and general psychological health as dependent variables. The results suggested both social support and marital satisfaction as significant mediators of the relationships of both primary and secondary stressors with the outcome variables / however, social support and marital satisfaction were not significant mediators of the relationships between parental efficacy and outcome variables. The significant implications and limitations of the study were also discussed.