Caregiver burden after receiving a diagnosis of an autism spectrum disorder

The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation, i.e., severity of autistic symptoms, additional life demands, social support, appraisal, and coping strategies. Burden was measured across three domains: individual caregiver, marital relationship, and the family as a whole. Most families reported high levels of burden following their child's diagnosis. Symptom severity, additional pile-up demands, social support, and the use of passive avoidant coping strategies were strong and consistent predictors of increased burden.     

Psychological Burden in Stroke Survivors and Caregivers Dyads at the Rehabilitation Center of Kinshasa (Democratic Republic of Congo): A Cross-Sectional Study

IntroductionStroke is a major cause of burden which can lead to anxiety and depressive disorders in stroke patients and their caregivers. This study aimed to assess the burden of depression and anxiety and covariates as well as its association with functional disability level among stroke survivors and caregivers dyads.MethodsThis cross-sectional study assessed for anxiety and depressive symptoms, and perceived burden among survivors of stroke and their caregivers in the rehabilitation center of Kinshasa; using the Hospital Anxiety and Depression Scale to identify participants with anxiety and depression; the Zarit Burden Inventory to assess the burden of depression and anxiety; and the modified Rankin scale used to assess functional outcome or level of disability.ResultsEight in ten caregivers of stroke survivors perceived the burden, which took more expression of depression than anxiety, whereas three in ten stroke survivors had a burden expressed by symptoms consistent with depressive and anxiety disorders. Being married increases the risk of perceiving the burden among stroke survivors. We found a positive association between high level of burden and depression and anxiety among caretakers of stroke survivors. Moreover, our findings did not reveal a statistical association between the burden and level of dependence evaluated based on the severity of disability.ConclusionsThe psychological burden is higher among caregivers than stroke survivors. Specialized programs targeted the psychological distress, its association with anxiety and depressive symptoms; and the functional disability level of stroke survivors should be integrated into the rehabilitation center of patients with disabled illnesses. Our findings warrant further studies to test the impact of reducing psychological burden on functional disability.     

Understanding perceptions underlying the self-reported stress among parents of adolescents with autism spectrum disorder: Considerations for supporting families

BackgroundParents raising adolescents with autism spectrum disorder (ASD) often report higher stress than other parents. The influence of parents’ internal, or cognitive, experiences (i.e., their own perceptions) on this elevated stress has yet to be explored. Addressing this gap may reveal opportunities for enhancing support for families by elucidating malleable targets for reducing parents’ self-reported stress and/or informing family-focused intervention. The Double ABCX Model of Family Adaptation is a framework for understanding how perceptions, social support, and personal resources (i.e., coping) may affect stress.MethodsWe examined parents’ perceptions about ASD, perceived support, and coping among 214 parents of adolescents with ASD. Regression analyses were used to explore whether these factors were associated with parenting stress among those raising adolescents with ASD. Moderation effects of positive coping on the relationship between parent perceptions and parenting stress were also explored.ResultsParent perceptions about within family support, the extent of ASD symptom predictability, and treatment being able to ‘control’ ASD were related to parenting stress. However, positive coping did not moderate the relationship between these perceptions and parenting stress.ConclusionsStudy findings emphasize significant associations between specific parental perceptions and the self-reported stress among families of adolescents with ASD. Particularly important to parenting stress were how much parents’ perceived adequate support within the family, that treatment was useful for controlling their adolescent’s ASD, and that their adolescent’s symptoms were predictable. These findings suggest that the way parents think about their adolescents’ ASD and the adequacy of the support within their own families are associated with parenting stress, and therefore may serve as treatment targets for positively affecting whole family outcomes, as well as foundations for additional research.     

The predictors of distress in parents of children with autism spectrum disorder

Abstract

Background It is well recognised that parents of children with autism spectrum disorder (ASD) often experience clinically significant levels of stress and depression. This study examined which ASD characteristic best predicted parental distress.

Method Parents of 109 children aged between 4 and 12 (M age = 7.89, SD = 2.43) completed self-report measures of anxiety, depression, stress, and parenting-specific stress. They also completed rating scales regarding their child's ASD characteristics.

Results This study found that the child's behavioural and emotional impairments predicted the parents’ overall levels of distress (i.e., stress/tension, anxiety, and depression), but not the stress associated with parenting. Instead, the child's social impairment severity was found to predict parenting-specific stress.

Conclusion This study highlights the pervasive influence of ASD symptomatology on the mental wellbeing of the parents and the importance of assisting parents to cope with the behavioural and social impairments of their child.     

Psychological variables as correlates of adjustment in mothers of children with intellectual disabilities: cross-sectional and longitudinal relationships

Background Existing research studies suggest that parenting a child with intellectual disabilities (ID) can be a stressful experience. However, there are few data addressing the question of how or why parents might experience considerable distress. In the present study, psychological variables (acceptance, mindfulness, avoidant coping) are explored that may explain some variance in maternal distress. Method Questionnaire data were gathered from mothers of children attending special schools at two time points, 18 months apart (n = 91 at Time 1; n = 57 at Time 2). In addition to measures of the child's functioning, the questionnaire pack included: a measure of acceptance of unwanted thoughts/feelings; a measure of attention to the present (mindfulness); a measure of active avoidance coping; measures of maternal anxiety, depression and stress; and a measure of mothers' positive perceptions of their child. Results In cross‐sectional analysis, acceptance was negatively associated with maternal anxiety, depression and stress, such that mothers who were generally more accepting reported fewer psychological adjustment problems. Longitudinal analysis showed that acceptance is bidirectionally related to anxiety and depression. Mindfulness was not significantly related to maternal distress, and avoidance coping was positively cross‐sectionally associated with depression only. There were no associations between psychological variables and maternal positive perceptions. Conclusions These data suggest that acceptance, in particular, may be a construct that explains some variance in maternal distress. Further research could focus on the utility of acceptance‐based interventions (e.g. Acceptance and Commitment Therapy) in the support of families with a child with ID.     

Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease

OBJECTIVES: There have been few longitudinal studies investigating the impact of coping on psychological morbidity in caregivers of people with dementia. Findings have been inconsistent and little attention has been paid to anxiety in caregivers. We explored the hypothesis that the relationship between caregiver burden and anxiety and depression is mediated by coping style. METHODS: As part of the LASER-AD study, 93 (73.8%) people with Alzheimer's disease and their family caregivers recruited at baseline were re-interviewed 1 year later. Sampling aimed to ensure that the participants were representative of people living in the UK with Alzheimer's disease in terms of dementia severity, gender and care setting. We used the Hospital Anxiety and Depression Scale, the Zarit Burden scale and the Brief COPE to measure coping strategies. RESULTS: Using fewer emotion-focused strategies and more problem-focused strategies (but not dysfunctional strategies) mediated the relationship between caregiver burden and anxiety a year later, after controlling for potential confounders, in a well-fitting structural equation model (chi(2) = 0.93, df = 3, p = 0.82; NFI = 1.0, RFI = 0.97, IFI = 1.0, TLI = 1.1, RMSEA = 0.0). Using fewer emotion focused strategies also predicted higher psychological morbidity in general. The hypothesised relationship was not proved for depression. CONCLUSIONS: Using emotion-focussed coping strategies in response to caregiver burden seemed to protect caregivers from developing higher anxiety levels a year later; however using problem-focussed strategies did not. Our results suggest that a psychological intervention package to emphasise emotion-focused coping may be a rational approach to reduce anxiety in dementia caregivers. Studies are needed to test such interventions. Copyright (c) 2008 John Wiley & Sons, Ltd.     

Coping,distress, and well-being in mothers of children with autism

As is the case in stress research generally, studies examining the relationship between coping and mental health outcomes in parents of children with autism frequently classify parental coping methods as being either problem- or emotion-focused. We argue that this dichotomization of coping strategies oversimplifies the way parents respond to their child's autism. In the present study, the coping methods employed by 113 mothers of children with autism were investigated using the Brief COPE (Carver et al., 1989). Exploratory factor analysis of Brief COPE subscales identified four reliable coping dimensions: engagement coping, distraction coping, disengagement coping, and cognitive reframing coping. In addition, using multiple regression, we examined the relationship of coping strategies to negative and positive maternal outcomes (depression, anger, and well-being). In general, maternal use of avoidant coping (distraction and disengagement) was found to be associated with increased levels of maternal depression and anger, while use of cognitive reframing was associated with higher levels of maternal well-being. In several instances, child characteristics, particularly severity of child maladaptive behavior, moderated the effect of coping on maternal outcomes. Study findings are discussed in light of previous research in the area; in addition, study limitations and clinical implications are highlighted.     

Fathers' and mothers' perceptions of their child and maternal depressive symptoms

Fathers' reports concerning their children have seldom been considered in the previous studies on maternal depression and child development. The literature on parental reports in general suggests that discrepancies in mothers' and fathers' perceptions are associated with the psychological state of the parent and the gender of the child. As part of a prospective follow-up study, fathers' and mothers' perceptions of children's social competence and behavioural/ emotional problems were assessed by the Child Behavior Checklists (CBCLs) when the firstborn children were 8–9 years old. The depressive symptoms of the mothers were screened by the Edinburgh Postnatal Depression Scale (EPDS) at the same time point. The level of children's social competence and behavioural/emotional problems reported by the fathers were analysed by background factors. The reports of both parents were explored by the gender of the child and by the presence of maternal depressive symptoms. The concordance of parental reports concerning child's social competence was high, but fathers usually reported lower problem levels than mothers, particularly for boys' problems. The presence of maternal depressive symptoms was associated with child's high problem levels from both fathers' and mothers' perspective. Parental ratings of children's externalizing problems in particular were associated with high maternal depressive symptom level.     

The interplay of parental support,parental pressure and test anxiety – Gender differences in adolescents

This study examined gender-specific relationships between adolescents' perceptions of school-related support/pressure from their parents and test anxiety. A sample of German students (N = 845; M_age = 15.32; SD = .49) completed questionnaires that measured their perceived parental support/pressure (for mother and father separately) as well as the four main components of test anxiety (worry, interference, lack of confidence, and emotionality). Gender-specific relations were identified using multigroup structural equation modeling: For girls, perceived maternal pressure was positively associated with emotionality and interference; for boys, perceived father pressure and father support were positively associated with interference and worry, respectively. For both genders, perceived mother pressure and support were related to lack of confidence. Our findings suggest that adolescents' perceptions of maternal attitudes are associated with students' self-confidence irrespective of the child's gender, whereas the remaining facets of test anxiety follow same-sex trajectories between perceived parental attitudes and adolescents' test anxiety.     

Stress, coping, and depression in non-ulcer dyspepsia patients

Thirty adults with upper gastrointestinal symptoms in the absence of structural organic disease diagnosed with non-ulcer dyspepsia (NUD) were compared to 30 healthy adults who had visited the hepatobiliary clinic for medical evaluation of non-organic complaints without NUD. Medical investigation in both groups were negative. Before independent gastrointestinal physicians conducted diagnostic evaluations, all subjects were evaluated for anxiety and depressive symptoms, stressful life events, coping style, and social support. The measures included Symptom Checklist 90-Revised (SCL-90-R), Beck Depression Inventory (BDI), Spielberger State-Trait Anxiety Inventory (STAI), Ways of Coping Checklist, and Interpersonal Support Evaluation List, and a self-report questionnaire, which measured the quantity of perceived stressful life events. The NUD patients reported significantly more symptoms of depression, more perceived stressful life events, less problem-focused coping, and less social support than the control subjects. Depressive symptoms were negatively correlated with interpersonal support, whereas, problem-focused coping was positively correlated with interpersonal support in the NUD patients. The two groups did not differ significantly in terms of anxiety and emotion-focused coping. The implications of these findings for the diagnosis and treatment of NUD are discussed.     

A cross-sectional study of coping resources and mental health of Chinese older adults in the United States

ABSTRACT

Objectives: This study examined the potential influence of coping resources at individual (sense of mastery), family (spousal and family support, children's filial piety), and community levels (community cohesion) on the mental health (depression, anxiety) of U.S. Chinese older adults.

Methods: The data were derived from the Population Study of Chinese Elderly in Chicago (N= 3,159). Negative binomial regressions were performed to predict depression and anxiety, respectively, by entering the three sets of coping resources separately and jointly, controlling for socio-demographic and acculturation variables.

Results: Stronger sense of mastery and greater perception of children's filial piety were associated with better mental health outcomes. Spousal support was not associated with any mental health outomes, and family support was actually assciated with greater depression and anxiety. Stronger community cohesion was associated with fewer depressive symptoms but greater anxiety.

Conclusion: Older immigrants’ sense of control and perception that children adhere to traditional family norms are important mental health protective factors. Whereas depending on families for support may compromise their well-being, community cohesion could be a double-edged sword for their mental health. Future studies shall further disentangle the associations among sense of mastery, reliance on family and ethnic enclaves for support, and older immigrants’ well-being.     

Suicidal ideation in family carers of people with dementia

Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.

Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.

Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.     

Psychopathological status, behavior problems, and family adjustment of Kuwaiti children whose fathers were involved in the first gulf war

Objectives

Following the end of the Gulf War that resulted in the liberation of Kuwait, there are no reports on the impact of veterans' traumatic exposure and posttraumatic stress disorder (PTSD) on their children. We compared the severity of anxiety, depression, deviant behavior and poor family adjustment among the children of a stratified random sample of four groups of Kuwaiti military men, viz: the retired; an active -in-the-army group (AIA) (involved in duties at the rear); an in-battle group (IB) (involved in combat); and a prisoners -of- war (POWs) group. Also, we assessed the association of father's PTSD/combat status and mother's characteristics with child psychosocial outcomes.

Method

Subjects were interviewed at home, 6 years after the war, using: the Child Behavior Index to assess anxiety, depression, and adaptive behavior; Rutter Scale A2 for deviant behavior; and Family Adjustment Device for adjustment at home. Both parents were assessed for PTSD.

Results

The 489 offspring (250 m, 239 f; mean age 13.8 yrs) belonged to 166 father-mother pairs. Children of POWs tended to have higher anxiety, depression, and abnormal behavior scores. Those whose fathers had PTSD had significantly higher depression scores. However, children of fathers with both PTSD and POW status (N = 43) did not have significantly different outcome scores than the other father PTSD/combat status groups. Mother's PTSD, anxiety, depression and social status were significantly associated with all the child outcome variables. Parental age, child's age and child's level of education were significant covariates. Although children with both parents having PTSD had significantly higher anxiety/depression scores, the mother's anxiety was the most frequent and important predictor of child outcome variables. The frequency of abnormal test scores was: 14% for anxiety/depression, and 17% for deviant behavior.

Conclusion

Our findings support the impression that child emotional experiences in vulnerable family situations transcend culture and are associated with the particular behavior of significant adults in the child's life. The primacy of the mother's influence has implications for interventions to improve the psychological functioning of children in such families. Mental health education for these families has the potential to help those in difficulty.     

Gender and developmental effects on perceived stress, coping, somatic symptoms and psychological disorders among children and adolescents

The aim of this one-year longitudinal study was to investigate gender and developmental effects on perceived stress related to interpersonal stressors, coping strategies, somatic symptoms and psychological disorders. Additionally, associations of perceived stress and coping styles at the first assessment with psychological problems at the second measurement were examined. In total, N = 169 Austrian children and adolescents (ages 10 to 13 years) participated in this self-report study. Compared to male children and adolescents, female counterparts scored higher on perceived stress related to interpersonal stressors and on social support but evaluated a lower amount of distraction. Moreover, girls reported higher levels of somatic symptoms and anxiety/depression. Boys showed a developmental increase in anger control problems and both genders showed developmental increases in antisocial behavior. Low levels of the emotion-focused coping strategies distraction and minimization were related longitudinally to emotional and behavioral disorders. The results support gender-adjusted stress management programs applied in the primary and secondary prevention.     

The effects of coping style,social support,and behavioral problems on the well-being of mothers of children with Autism Spectrum Disorders in Lebanon

The present study examined the effects of coping styles, social support, and child's behavioral symptoms on the well-being of 65 mothers of children with Autism Spectrum Disorders (ASD) in Lebanon. Comparisons to the well-being of 98 mothers of typically developing children were also drawn. Regression analyses showed that disengagement and distraction coping predicted poor well-being, whereas cognitive reframing showed a correlation with better well-being levels. A significant correlation was found between child's behavioral problems and maternal well-being. T-test analyses revealed that mothers of children with ASD differed in terms of coping styles used. Additionally, mothers of children with ASD showed lower levels of perceived social support. Well-being was significantly better for mothers of typically developing children. Study limitations and implications are discussed.     

The psychological costs of comparisons: Parents' social comparison moderates the links between family management of epilepsy and children's outcomes

Parents play a key role in how children deal with epilepsy. When diagnosed with health conditions, people seek comparison information from fellow patients and families, and this information has consequences for how they evaluate their situation. This study examined the moderating role of parents' social comparison orientation in the associations between family management (parental perceptions of family life difficulties and child's daily life) and adaptation outcomes of children with epilepsy (HRQoL and perceived stigma). Participants included 201 dyads of children with epilepsy and either their mother or father. The results showed that when parents perceived higher difficulties managing their child's epilepsy and/or reported that their child was more affected by this condition, children reported higher perceived stigma and worse HRQoL only when parents had a higher social comparison orientation. Our results are innovative in showing that when parents have a higher social comparison orientation, their children may be at increased risk of poorer outcomes.     

Association of restless legs syndrome,pain, and mood disorders in parkinson's disease

Purpose/Aims: The objectives of the study were to analyze the association between Parkinson's disease and restless legs syndrome, and to explore the relationship between mood disorder comorbidity (anxiety and depression), pain, and restless legs syndrome. Methods: This study included 123 Parkinson's disease patients and 123 non-Parkinson's disease patients matched for age and gender, and evaluated for anxiety severity, depression severity, pain severity, pain interference, pain disability, and restless legs syndrome prevalence. This was performed using semi-structured interviews and a neurological examination through the restless legs syndrome diagnostic criteria and the following inventories; Hospital Anxiety and Depression Scale, Brief Pain Inventory, and Pain Disability Index. Results: Parkinson's disease patients had significantly greater anxiety severity, depression severity, pain severity, pain interference, pain disability, and restless legs syndrome prevalence in comparison to controls. In addition, Parkinson's disease patients’ comorbid for anxiety and depression had significantly greater pain severity, pain interference, and pain disability, but not RLS prevalence, in comparison to Parkinson's disease only, Parkinson's disease anxiety, and Parkinson's disease depression patients. Conclusions: Pain interference, pain severity, and pain disability is greater among Parkinson's disease patients with anxiety and depression, in comparison to Parkinson's disease patients without anxiety and depression. On the contrary, the prevalence of restless legs syndrome was not found to be relevant.     

Predictors of life disability in trichotillomania

BackgroundLimited research has investigated disability and functional impairment in trichotillomania (TTM) subjects. This study examined the relationships between hair pulling (HP) style and severity and disability while controlling for mood severity. Disability was measured in individual life areas (work, social, and family/home life) instead of as a total disability score as in previous studies.MethodsOne hundred fifty three adult hair pullers completed several structured interviews and self-report instruments. HP style and severity, as well as depression, anxiety, and stress were correlated with work, social, and family/home life impairment on the Sheehan Disability Scale (SDS). Multiple regression analyses were performed to determine significant predictors of life impairment.ResultsDepressive severity was a significant predictor for all SDS life areas. In addition, interference/avoidance associated with HP was a predictor for work and social life disability. Distress from HP was a significant predictor of social and family/home life disability. Focused HP score and anxiety were significant predictors of family/home life disability.ConclusionsAs expected, depression in hair pullers predicted disability across life domains. Avoiding work and social situations can seriously impair functioning in those life domains. Severity of distress and worry about HP may be most elevated in social situations with friends and family and thus predict impairment in those areas. Finally, since HP often occurs at home, time spent in focused hair pulling would have a greater negative impact on family and home responsibilities than social and work life.