Search

Author(s): B Lovell [sup.1] , G Horan-Anderson [sup.1] , K McCarty [sup.1] , Mark A. Wetherell [sup.1] Author Affiliations: (1) https://ror.org/049e6bc10, grid.42629.3b, 0000 0001 2196 5555, Department of Psychology, Northumbria [...], Negative emotions are typically high, and typically stay high over time, in caregivers of children with autism. The severity of autism-related symptoms on the other hand tends to improve over time, reducing as the child gets older. Why caregivers' negative emotions continue to be high at a time when autism symptom severity is improving remains puzzling. This exploratory study asks whether prevalence-induced concept change (PICC) might provide one plausible explanation. A sample of N = 34 participants, of which 17 were caregivers of children with autism and 17 were non-caregiving controls, completed questionnaires assessing negative emotions. PICC was assessed via an online paradigm; participants were shown a face on screen for 500ms and asked, following its disappearance, whether it conveyed a negative (i.e., sad) or a neutral expression. Neutral faces mistaken for sad faces, as our outcome variable of interest, were summed across trials. The prevalence of negative faces was gradually reduced across four experimental blocks (50 trials per block). Mixed ANOVA yielded a significant main effect of block. That is, neutral faces were more likely to be mistaken for sad faces as sad faces became less prevalent across blocks. This pattern of change varied by group; caregivers were more likely to mistake neutral faces for sad faces as sad faces reduced in prevalence across blocks. Errors made by the control group did not vary across blocks. Caregivers' concept of 'negative, therefore, seems sensitive to change, redefining its parameters as negative events become less prevalent. PICC might explain why caregivers' negative emotions remain high when autism symptom severity, as one well-known predictor of those negative emotions, is reducing in prevalence. The implications of these findings for caregivers' psychological well-being and, by association, care recipient quality of life are considered.

Author(s): Aurora H. Brinkman [sup.1] , Tammy D. Barry [sup.1] , Rebecca A. Lindsey [sup.2] Author Affiliations: (1) https://ror.org/05dk0ce17, grid.30064.31, 0000 0001 2157 6568, Department of Psychology, Washington State University, [...], Caregivers of children with autism spectrum disorder (ASD) experience greater stress, expressed emotion (EE), and affiliate stigma than caregivers of children without ASD. Siblings of children with ASD often experience greater negative functioning than siblings of individuals without ASD. The current study found significant interrelations among symptom severity and externalizing behavior in children with ASD; parental stress, affiliate stigma, and EE; and TD sibling internalizing behavior. In addition, certain subcomponents of affiliate stigma predicted unique variance in EE and TD sibling internalizing behavior. Findings may increase understanding of psychosocial functioning in families with children with ASD and allow clinicians to improve outcomes for all family members. Limitations of the study included self-report data, limited sample diversity, and a cross-sectional design.

Author(s): Theresa Andrzejewski [sup.1] , Elizabeth A. DeLucia [sup.2] , Olivia Semones [sup.2] , Sanaa Khan [sup.2] , Christina G. McDonnell [sup.1] Author Affiliations: (1) grid.135963.b, 0000 0001 2109 0381, [...], Although there is an urgent need to develop trauma-informed services for autistic youth, little research has evaluated adverse childhood experiences (ACEs) in autistic youth from an intergenerational perspective. 242 caregivers of autistic (n = 117) and non-autistic (n = 125) youth reported on ACEs that they experienced in their own childhoods and ACEs experienced by their children, as well as measures of depression, stress, and child autistic traits and behavioral concerns. Autistic youth and their caregivers both experienced significantly higher rates of ACEs than the non-autistic dyads. Intergenerational continuity, the association between caregiver and child ACEs, was significantly stronger for autistic youth. ACEs showed differential patterns of associations with parent depressive symptoms and child autistic traits across groups.

Author(s): Jenelle Cocorpus [sup.1] , Julie Jun [sup.1] , Abby Basalely [sup.1] , Laura Castellanos [sup.1] , Pamela Singer [sup.1] , Rachel Frank [sup.1] , Olivia Bullaro [sup.1] , Shari [...], Background Pediatric chronic disease impacts the affected child and their family structure. There is limited literature investigating the psychosocial impact of nephrotic syndrome on families. Methods Caregivers of children with nephrotic syndrome completed two validated surveys: (1) Impact on Family (IOF) that evaluates the family impact (degree to which family is affected by a pediatric chronic illness) and (2) Coping Health Inventory for Parents (CHIP) that examines the coping patterns used by caregivers. Linear regression models were utilized to determine predictors of perceived family impact and coping patterns. Results Seventy-five caregivers of a child with nephrotic syndrome completed the surveys. On a scale from low impact to significant impact to very serious impact, results indicated that nephrotic syndrome had a significant impact on families (mean revised IOF total score 33.04 ± 9.38). Families in the steroid-resistant nephrotic syndrome (SRNS) group reported a higher financial impact compared to the steroid-sensitive nephrotic syndrome (SSNS) group (p = 0.03). Families in the frequently relapsing group (FRNS) reported a higher impact on the caregiver's ability to cope with the child's condition compared to the SRNS group (p = 0.02). Tacrolimus use was associated with increasing the perceived family impact ([beta] = 4.76, p = 0.046). CHIP scores indicated that caregivers did not cope well with family integration (component I) but coped well with social support (component II) and communication (component III). Conclusions Childhood nephrotic syndrome has a significant overall perceived impact on the family, and caregivers did not cope well regarding strengthening their family life. These findings can be used as outcome measures for future intervention studies to find solutions that would decrease the perceived family burden. Graphical Abstract A higher resolution version of the Graphical abstract is available as Supplementary information

Author(s): Yanfeng Xu [sup.1] , Qi Wu [sup.2] , Merav Jedwab [sup.3] , Sue E. Levkoff [sup.1] Author Affiliations: (1) grid.254567.7, 0000 0000 9075 106X, University of South Carolina College [...], Grandparent kinship caregivers may experience increased parenting stress and mental distress during the COVID-19 pandemic. It may lead to risky parenting behaviors, such as psychological aggression, corporal punishment, and neglectful behaviors towards their grandchildren. This study aims to examine (1) the relationships between parenting stress, mental health, and grandparent kinship caregivers' risky parenting practices, such as psychological aggression, corporal punishment, and neglectful behaviors towards their grandchildren during the COVID-19 pandemic, and (2) whether grandparent kinship caregivers' mental health is a potential mediator between parenting stress and caregivers' psychological aggression, corporal punishment, and neglectful behaviors. A cross-sectional survey among grandparent kinship caregivers (N = 362) was conducted in June 2020 in the United States. Descriptive analyses, negative binomial regression analyses, and mediation analyses were conducted using STATA 15.0. We found that (1) grandparent kinship caregivers' high parenting stress and low mental health were associated with more psychological aggression, corporal punishment, and neglectful parenting behaviors during COVID-19; and (2) grandparent kinship caregivers' mental health partially mediated the relationships between parenting stress and their psychological aggression, corporal punishment, and neglectful behaviors. Results suggest that decreasing grandparent kinship caregivers' parenting stress and improving their mental health are important for reducing child maltreatment risk during COVID-19.

Author(s): Patricia F. Kurtz [sup.1] [sup.2] , Craig W. Strohmeier [sup.1] [sup.2] , Jessica L. Becraft [sup.1] [sup.2] , Michelle D. Chin [sup.1] Author Affiliations: (1) grid.240023.7, 0000 0004 0427 [...], When individuals with autism and intellectual and developmental disabilities exhibit severe problem behavior, assessment and treatment are often warranted. Parents of such individuals are at high risk for developing parenting stress. In this study, 194 parents completed the Parenting Stress Index-Short Form at their child's time of admission to and discharge from inpatient or outpatient treatment for severe problem behavior. Parent stress was examined in relation to rate and function of child problem behavior as determined via functional analysis. Repeated measures analyses of variance were conducted, and differential effects were observed when child participants exhibited an attention, automatic, or mands function for problem behavior. These findings highlight the importance of considering function of problem behavior in relation to parenting stress.

Author(s): Isabela Ornelas Pereira [sup.1] , Ana C. F. S. Santelli [sup.2] , Priscila L. Leite [sup.3] , Jacob Attell [sup.4] [sup.5] , Jeanne Bertolli [sup.6] , Kim Kotzky [sup.7] [...], Background Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. Methods A cross-sectional study was carried out with 146 primary caregivers of children 15-26 months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará. Caregivers reported on their child's life and health, family circumstances and underwent screening for stress using the Parenting Stress Index-Short Form. Children were evaluated for developmental delays and clinical outcomes. Differences in the prevalence of risk factors between caregivers with high or clinically relevant stress and those with normal stress were evaluated. Results Of the 146 participants, 13% (n = 19) were classified as having high or clinically relevant stress, all of them mothers. The two risk factors significantly and independently associated with high levels of stress, compared with individuals with normal stress levels, were "reporting difficulty in covering basic expenses" (adjusted OR 3.6 (95% CI 1.1-11.8; p = 0.034)) and "having a child with sleep problems" (adjusted OR 10.4 (95% CI 1.3-81.7; p = 0.026)). Conclusions Some factors seem to contribute significantly more than others to the level of stress experienced by caregivers of children with evidence of Zika virus congenital infection. Interventions and preventive strategies should also target caregivers, who in turn will be able to respond to the unique characteristics of their child.

Author(s): Claudia I. Iacob [sup.1] , Eugen Avram [sup.1] , Daniel Cojocaru [sup.1] , Ioana R. Podina [sup.1] Author Affiliations: (1) grid.5100.4, 0000 0001 2322 497X, Faculty of Psychology and [...], The aim of this meta-analysis was to investigate factors associated with resilience in familial caregivers of children with developmental disabilities. The protocol was registered in the PROSPERO database, with the registration number CRD42018105180. Several electronic databases were searched for studies. A random-effects meta-analysis was performed on 26 selected studies that associated resilience to an array of other variables (i.e., psychological distress, social support, coping, perceived health, life satisfaction). Overall, the significant pooled effect sizes were small to medium, ranging from r = 0.291 for coping to r = 0.442 for social support. Although the literature on the topic has improved, there is a lot of study heterogeneity and the need for focusing on male caregivers becomes evident.

Author(s): Dana Ketcher [sup.1] , Ryan Trettevik [sup.2] , Susan T. Vadaparampil [sup.1] , Richard E. Heyman [sup.3] , Lee Ellington [sup.4] , Maija Reblin [sup.1] Author Affiliations: (1) grid.468198.a, [...], Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health.

Author(s): L. Kalb [sup.1] [sup.2] [sup.4] , L. Jacobson [sup.1] [sup.3] , C. Zisman [sup.1] , E. Mahone [sup.1] [sup.3] , R. Landa [sup.2] [sup.3] , G. Azad [sup.2] [sup.4] [...], The goal of this study was to examine caregiver agreement to hear about local research opportunities by joining a clinical research registry. Data from this cross-sectional study were gathered, between 2014 and 2017, across two outpatient clinics: (1) a multidisciplinary Autism Spectrum Disorder (ASD) clinic (N = 5228) and (2) a general psychology clinic serving youth with, or at risk for, a neurodevelopmental disorder (NDD; N = 5040). Overall, more than 8 in 10 caregivers agreed to join the registry. Several child clinical characteristics, as well as racial and sociodemographic factors, were predictive of parental agreement. Findings suggest caregivers of youth with ASD and NDD are amenable to joining the local research enterprise, however further work is needed to understand why some caregivers decline.

Author(s): Chris Papadopoulos [sup.1] , Annemarie Lodder [sup.1] , Georgina Constantinou [sup.1] , Gurch Randhawa [sup.1] Author Affiliations: (Aff1) 0000 0000 9882 7057, grid.15034.33, University of Bedfordshire, , Putteridge Bury [...], Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.

Author(s): Jane B. Lane [sup.1] , Amber R. Salter [sup.2] , Nancy E. Jones [sup.3] , Gary Cutter [sup.2] , Joseph Horrigan [sup.4] , Steve A. Skinner [sup.5] , Walter [...], Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher's exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach's alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder.

Author(s): Julianne C. H. Flanagan[sup.1] [sup.2] , Tami P. Sullivan[sup.1] , Christian M. Connell[sup.1] Author Affiliations: (1) Yale University School of Medicine, New Haven, CT, USA (2) Department of Psychiatry [...], Intimate partner violence (IPV) victimization, substance misuse, and depression are highly prevalent among female caregivers involved with child protective services (CPS). Understanding heterogeneity in the occurrence of these problems is essential to improving pathways to intervention. Latent class analysis was employed to determine whether homogeneous subgroups of female caregivers who experience different patterns of IPV victimization, substance misuse, and depression exist. A restricted three-class solution best fit the data. A substantial number of female caregivers comprises the high-risk subgroup (33 %) in which caregivers reported high rates of IPV victimization, substance misuse, and depression. Avery small proportion comprised the no-risk subgroup (9 %). Findings emphasize heterogeneity among female caregivers based on these risk factors, which may have implications for practitioners, CPS caseworkers, and researchers.