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.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

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.     

Constipation prevalence and perceptions: Comparison of children and adolescents with ASD and other developmental-behavioral disorders

BackgroundFew studies have compared youth constipation in autism spectrum disorder (ASD) to constipation in other developmental-behavioral (DB) disorders.MethodsChildren and caregivers presenting to a DB pediatrics and psychology clinic completed written questionnaires on constipation. Comparison groups were ASD vs without ASD and caregiver vs child responses. Binary logistic regression were conducted to compare categorical variables.ResultsCaregivers of 169 toilet trained children and 26 non-toilet trained children completed the survey; 30 % of the toilet trained and 62 % of the non-toilet trained children had ASD. 88 toilet trained children completed the survey. Based on caregiver response, toilet trained youth with ASD were more likely to have been constipated in the past and to currently or previously taken medication to manage constipation. In both the total toilet trained and non-toilet trained sample, more caregivers endorsed their child meeting Rome IV criteria for functional constipation than endorsed current constipation. 37 % of parent/child pairs disagreed on whether the child met the Rome IV criteria. Caregivers of toilet trained youth with ASD were more likely to endorse specific barriers and impairment due to managing constipation in comparison to caregivers of youth without ASD.ConclusionsChildren with ASD may be at a higher lifetime risk of constipation and of needing medication compared to children with other DB disorders. Providers should use thorough questions to identify constipation and gather information from both caregiver and child when possible. Clinicians should consider targeting behavioral treatment recommendations to perceived caregiver concerns.     

A comparison of family financial and employment impacts of fragile X syndrome,autism spectrum disorders,and intellectual disability

This study compares the family financial and employment impacts of having a child with fragile X syndrome (FXS), autism spectrum disorder (ASD), or intellectual disabilities (ID). Data from a 2011 national survey of families of children with FXS were matched with data from the National Survey of Children with Special Health Care Needs 2009–2010 to form four analytic groups: children with FXS (n = 189), children with special health care needs with ASD only (n = 185), ID only (n = 177), or both ASD and ID (n = 178). Comparable percentages of parents of children with FXS (60%) and parents of children with both ASD and ID (52%) reported that their families experienced a financial burden as a result of the condition, both of which were higher than the percentages of parents of children with ASD only (39%) or ID only (29%). Comparable percentages of parents of children with FXS (40%) and parents of children with both ASD and ID (46%) reported quitting employment because of the condition, both of which were higher than the percentages of parents of children with ID only (25%) or ASD only (25%). In multivariate analyses controlling for co-occurring conditions and functional difficulties and stratified by age, adjusted odds ratios for the FXS group aged 12–17 years were significantly elevated for financial burden (2.73, 95% CI 1.29–5.77), quitting employment (2.58, 95% CI 1.18–5.65) and reduced hours of work (4.34, 95% CI 2.08–9.06) relative to children with ASD only. Among children aged 5–11 years, the adjusted odds ratios for the FXS group were elevated but statistically insignificant for financial burden (1.63, 95% CI 0.85–3.14) and reducing hours of work (1.34, 95% CI 0.68–2.63) relative to children with ASD only. Regardless of condition, co-occurring anxiety or seizures, limits in thinking, reasoning, or learning ability, and more irritability were significantly associated with more caregiver financial and employment impacts. Proper management of anxiety or seizures and functional difficulties of children with FXS or other developmental disabilities may be important in alleviating adverse family caregiver impacts.     

Variability in adaptive behaviour in young children with autism spectrum disorder

ABSTRACT

Background Understanding adaptive behaviour variability in children with autism spectrum disorder (ASD) may have important implications for early intervention. The purpose of this study was to explore whether autism symptom severity and caregiver depression affected adaptive behaviour in young children with ASD.

Method Data were collected from 60 primary caregivers of children aged 2–6 years with ASD. A factorial multivariate analysis of covariance was conducted to investigate if different levels of autism symptom severity and caregiver depression affected communication, socialisation, and daily living skills, after controlling for child age.

Results Findings suggest that only autism symptom severity accounted for significant variance in adaptive behaviour, with socialisation being most impacted. Although more than half of the caregivers reported heightened depressive symptoms, caregiver depression was not related to adaptive behaviour.

Conclusions Findings highlight the level of functional impairment that young children with ASD experience in relation to autism symptom severity.     

Parent-reported sleep problems in school-aged children with fetal alcohol spectrum disorder: association with child behaviour,caregiver, and family functioning

Objective/backgroundSleep problems are a common clinically reported area of concern for children and adolescents with fetal alcohol spectrum disorder (FASD). However, limited empirical research has been undertaken investigating sleep problems for children with FASD. The current study aimed to examine the associations between parent-reported sleep problems in children with FASD and child behaviour, caregiver mental health and health-related quality of life and family functioning.Participants163 caregivers of children diagnosed with FASD aged 5–17 years were included in the current study.MethodCross-sectional online survey that collected information pertaining to child sleep problems (difficulty falling asleep, difficulty staying asleep and/or frequent waking during the night and waking early in the morning) and standardised caregiver reported measures of child behaviour, caregiver mental wellbeing, caregiver health-related quality of life, and family functioning.ResultsSleep problems were common, affecting 65.6% (n = 107) of participants. Difficulty falling asleep (56.4%) was the most common sleep problem encountered, followed by difficulty staying asleep (44.8%) and waking early (29.4%). Sleep problems were associated with increased rates of child behaviour problems and caregiver anxiety and negative impacts on caregiver and family quality of life.ConclusionSleep problems in children and adolescents with FASD are common and associated with poorer child, caregiver and family outcomes. Future research needs to determine whether effective identification and management of sleep problems can reduce adverse outcomes.     

Affective problems,gastrointestinal symptoms,sleep problems,and challenging behaviour in children and adolescents with autism spectrum disorder

BackgroundPeople with autism spectrum disorder (ASD) can experience affective problems, gastrointestinal (GI) symptoms, sleep problems, and challenging behaviour. This study identified the frequency of affective problems and explored how they related to co-occurring conditions in children and adolescents with ASD.MethodParticipants were children and adolescents diagnosed with ASD using DSM-IV-TR criteria (n = 95), 40 % (n = 38) of whom also had a diagnosis of intellectual disability (ID). The following scales were completed by the participants’ parents or guardians: Child Behaviour Checklist (CBCL), Gastrointestinal Symptoms Inventory, Children’s Sleep Habits Questionnaire (CSHQ), and the Behaviour Problems Inventory-Short Form (BPI-S). Pearson’s correlations and independent sample t-tests were used to examine the relationships between variables. Two hierarchal multiple regressions examined predictors for affective problems in preschool and school-aged children with ASD.ResultsParticipants scored in the clinical range (69.5 %) and borderline range (10.5 %) for affective problems. Significant positive relationships were found between affective problems and sleep problems, GI symptoms, and challenging behaviour. ID and gender predicted affective problems in preschool aged children. In school-aged children, affective problems were predicted by ID, sleep problems, and aggressive/destructive behaviour severity. However, only 25 % of the variance in affective problems was accounted for.ConclusionsFuture research is needed to understand how affective problems are impacted by co-occurring conditions in children and adolescents with ASD. Affective problems are prevalent in this population and the quality of life for individuals may be improved if practitioners consider co-occurring conditions during clinical practice.     

Co-occurring behavioral difficulties in children with severe feeding problems: A descriptive study

BackgroundRecent literature highlights the association between behavioral difficulties and the presence of feeding problems in children with an Autism Spectrum Disorder (ASD) relative to children with ASD without feeding problems. However, it is not clear to what extent behavior problems (outside of the meal setting) occur in children with feeding problems without comorbid ASD.AimsThe purpose is to describe co-occurring behavioral difficulties of a sample of children with severe food refusal/selectivity and examine potential predictors of behavioral difficulties outside of the meal context.Method and proceduresThe medical charts of fifty-four patients were reviewed and data were collected on the frequency of caregiver coaching and/or behavioral intervention outside of the meal context. Age, presence of developmental delay/autism, and type of feeding problem were examined as potential predictors of behavioral support.Outcome and resultsApproximately half of the sample received coaching or individualized intervention. The percentage of caregivers who received individualize coaching were similar across groups. Younger age at admission was a predictor of individual caregiver coaching. Presence of delay/ASD, age, and type of feeding problems were not significant predictors for individualized treatment programing.Conclusion and implicationsThese data provide evidence of difficult caregiver-child interactions that occurs outside of the meal context for some children with severe feeding difficulties and suggest that this association may not be exclusive to children with ASD.     

A community-based sleep educational intervention for children with autism spectrum disorder

BackgroundSleep problems are common in children with autism spectrum disorder (ASD). Sleep education, effective in improving sleep in ASD, may be difficult to access. We determined if community-based pediatric therapists could successfully deliver sleep educational interventions to caregivers of children with ASD.MethodsA seven-week feasibility study was conducted consisting of 10 children and caregivers. This feasibility study informed the development of a 16-week preliminary effectiveness study, which consisted of 33 children and caregivers. Children, ages 2–12 years, with a clinical diagnosis of autism and caregiver-reported sleep onset delay of 30 min were included. Community therapists underwent comprehensive training in sleep education and then met with caregiver participants to provide sleep education to each family. Semi-structured qualitative interviews were conducted with all families who completed study procedures.In the feasibility and preliminary effectiveness studies, child participants wore an actigraphy watch (at baseline and after sleep education) and caregivers completed the Child Sleep Habits Questionnaire and Family Inventory of Sleep Habits at baseline and after sleep education; the Child Behavior Checklist was also completed by caregivers in the preliminary effectiveness study.ResultsEducator fidelity to the manualized curriculum was maintained. Caregivers showed appropriate understanding, comfort, and implementation of the curriculum. Qualitative and quantitative measures, including caregiver surveys and actigraphy, showed improvements in child sleep and behavior.ConclusionsCommunity-based therapists can successfully deliver sleep education to families of children with ASD, which has favorable implications for improving access to care in this population.     

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

BackgroundPediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.MethodThe relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.ResultsComponents of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.ConclusionUltimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.     

Toilet training interventions for children with autism spectrum disorder: A systematic review

BackgroundChildren on the autism spectrum can often reach independence in toileting at a later age than nonautistic children, which impacts their health outcomes, independence and social participation. This study aimed to systematically review evidence-based toilet training interventions for children on the autism spectrum, and assess the quality of existing evidence.MethodGuided by the PRISMA statement, a search of scholarly databases was conducted and the study characteristics, methodological quality and intervention components of included studies were examined.ResultsThis systematic review identified 26 studies that evaluated toilet training interventions for children on the autism spectrum. Results identified that while Azrin and Foxx’s (1971) Rapid Toilet Training approach is most widely researched for children on the autism spectrum, investigating the effects of current toilet training approaches is limited by small sample sizes, low-level study designs and variable methods of reporting outcomes.ConclusionGreater consideration of parent-child communication, children’s developmental and toileting skill level may facilitate development of toileting approaches that better meet the needs of children on the autism spectrum and their families.     

Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder

ObjectiveIndividuals with FASD experience neurodevelopmental impairments and adverse outcomes, which can result in stress on the caregiver. However, there is little research on the needs of caregivers supporting individuals with FASD and whether they are associated with caregiver stress.Method125 caregivers of individuals with FASD completed a survey with questions adapted from the Family Caregiver Survey and the Perceived Stress Scale.ResultsCaregivers reported a range of needs and concerns, and high levels of stress. In many areas of caregiver well-being concerns tended to be higher among caregivers with adolescents and adults compared to those with children. Foster parents reported fewer well-being concerns than biological/kinship and adoptive parents. Caregivers who cared for the individuals for longer periods of time reported the most well-being concerns and lowest satisfaction with supports. Caregivers with the lowest income reported higher levels of stress than those with higher incomes. Higher reported stress was highly correlated with more needs/concerns.ConclusionsCaregivers of individuals with FASD have multiple areas of need and concern, and experience high levels of stress. Reducing demands on caregivers and providing resources may help reduce caregiver needs and stress, particularly for those caring for adolescents and adults, and those with lower incomes.     

The quality of life of parents of children with autism spectrum disorder: A systematic review

BackgroundPrevious research has raised concerns about the quality of life (QoL) of parents of children with autism spectrum disorder (ASD). A better understanding of parental QoL can inform clinicians and policymakers and lead to improved outcomes for both parents and children.AimsThis review aimed to systematically examine studies measuring the QoL among parents of children with ASD (<18 years) and to investigate its parental, child-related and contextual associated factors.MethodologyAn electronic database search was conducted using Medline, Psycinfo, Embase, CINAHL, Biosis, ASSIA, Social Services Abstracts, Sociological Abstracts and Open grey.ResultsThis review indicated poorer QoL among parents of children with ASD compared to parents of typically developing children or to population norms. Variables associated with lower parental QoL within this group included child behavioural difficulties, unemployment, being a mother and lack of social support.ConclusionThis review verified previous reports on lower QoL among parents of children with ASD and highlighted potential areas of support. Implications for future research, policy and practice are discussed.     

An investigation of the association between seizures,autism symptomology,and developmental functioning in young children

ABSTRACT

Objective: The aim of the present study was to explore whether a history of seizures was associated with autism symptom severity and developmental functioning in young children.

Methods: Autism symptom severity and developmental functioning were compared between children with and without a history or seizures who either had atypical development or met criteria for autism spectrum disorder (ASD) based on review of records by a licensed clinical psychologist.

Results: Parents of children who met criteria for ASD reported lower levels of autism symptomology when the child had a history of seizures, while the opposite trend was found for children with atypical development. Participants without ASD or seizures had greater developmental functioning than the other groups.

Conclusion: The present study emphasizes the need for early identification and diagnosis of both ASD and seizure disorders, as timely intervention for these two conditions may be related to improved outcomes for young children.     

Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers.

Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms.

Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners’ ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up.

Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress.

Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.     

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.     

Caregiver perspectives on interventions for behavior challenges in autistic children

BackgroundChildren with an autism spectrum disorder (ASD) diagnosis have high rates of behaviors such as aggression, oppositional behaviors, and tantrums. Despite effectiveness of interventions for these behavior challenges in a considerable number of autistic children, there is little information on stakeholder perspectives about available interventions. The present study preliminarily characterized caregiver perspectives on intervention for behavior challenges in school-age autistic children.Method321 caregivers of autistic children completed a survey about interventions used to address behavior challenges. Kruskal-Wallis rank-sum tests and subsequent pairwise comparisons using a Wilcoxon rank-sum test with False-Discovery Rate-adjusted p-values (q<0.05) were conducted for caregiver ratings of interventions. Thematic analysis was conducted for caregivers’ open-ended suggestions for improving interventions.ResultsCaregivers indicated limited approval of attempted interventions. For children with an IQ ≥ 70, the omnibus test was significant for caregiver ratings of intervention helpfulness (χ²(8) = 38.707, q<0.001, ε² = 0.017) with medications and Collaborative & Proactive Solutions (CPS; Greene, 2010) therapy rated highest, and was significant for caregiver ratings of amount of improvement maintained over time (χ²(8) = 46.013, q<0.001, ε² = 0.020) with medications, CPS, applied behavioral analysis (ABA), and “other interventions” rated highest. For children with an IQ < 70, pairwise tests revealed no significant differences. Caregivers suggested improvements at the systems, provider, caregiver/family, and child/intervention levels.ConclusionsCaregivers’ limited approval of interventions used to address behavior challenges suggests the need for improved intervention options. While medications and ABA are standard-of-care interventions, CPS may be a caregiver-preferred and efficacious option that is underutilized among autistic children with an IQ ≥ 70.