The magnitude of stress and associated health consequences experienced by caregivers compromises their ability to effectively provide care to children, especially children with disability. We used latent class analysis of data from the 2010 Ohio Family Health Survey and identified 3 distinct classes of caregivers based on patterns of responses to 15 financial and psychological stresses they experienced. Compared with children residing in households in which caregivers experienced very little or no stress, children with disability were twice as likely to reside with caregivers with high levels of financial stress and almost 3.5 times as likely to reside with caregivers with high levels of financial stress and very high levels of psychological stress than typically developing children. Reducing caregiver stress is a critical step to ensuring the best health outcomes possible for children with disability. We identify the heterogeneity that is present in the population of caregivers by virtue of patterns of responses to various financial and psychological stressors. Children with disability are more likely to live in households in which a greater number of stressors affect caregivers. Different confounders are also associated with the latent classes of stress we identify. This is an important implication when determining the right interventions to target to the right subpopulations.

Financial and psychological stressors associated with caring for children with disability.

Children and youth with special health care needs (CYSHCN) and their families may experience a variety of internal (ie, emotional and behavioral) and external (ie, interpersonal, financial, housing, and educational) psychosocial factors that can influence their health and wellness. Many CYSHCN and their families are resilient and thrive. Medical home teams can partner with CYSHCN and their families to screen for, evaluate, and promote psychosocial health to increase protective factors and ameliorate risk factors. Medical home teams can promote protective psychosocial factors as part of coordinated, comprehensive chronic care for CYSHCN and their families. A team-based care approach may entail collaboration across the care spectrum, including youth, families, behavioral health providers, specialists, child care providers, schools, social services, and other community agencies. The purpose of this clinical report is to raise awareness of the impact of psychosocial factors on the health and wellness of CYSHCN and their families. This clinical report provides guidance for pediatric providers to facilitate and coordinate care that can have a positive influence on the overall health, wellness, and quality of life of CYSHCN and their families.

/pdf/psychosocial-factors-in-children-and-youth-with-special-16ib3dvedv.pdf

Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families

This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5–15) of MCS children (likely mainly with mild to moderate ID) identified with ID (n = 257 siblings) or not (n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children’s adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores (OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive (OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment.

/pdf/a-population-based-study-of-the-behavioral-and-emotional-4no9ck2o4q.pdf

A population-based study of the behavioral and emotional adjustment of older siblings of children with and without intellectual disability

This report focuses on the effect of the presence of a disabled child in a family and in particular on its demographically relevant consequences in a comparative framework. Couples who rear a disabled child are more frequently unstable, more often forego their fertility intentions, more frequently suffer from economic difficulties, show more traditional gender role arrangements, are more frequently in bad health, and have lower well-being than families without disabilities. The consequences are also different for mothers and fathers: fathers of disabled children have fewer emotional exchanges, while mothers tend to suffer more in terms of social contact. Feelings of emptiness, loneliness and rejection are more typical of mothers with disabled children. This report contributes to the existing literature by showing that comparative large-scale surveys on topics other than disability (such as the Gender and Generation surveys) can be quite a rich source of information on the family life of disabled children.

/pdf/families-with-disabled-children-in-different-european-5awlbqzrdn.pdf

Families with disabled children in different European countries

Despite the prevalence of studies showing increased stress among mothers of individuals with autism spectrum disorders, few studies have examined general stress among typically developing siblings. This study used an online survey to compare the levels of self-reported stress between adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Sibling of individuals with autism reported significantly more overall stress than did siblings of individuals with Down syndrome, as well as more stress specifically attributed to the brother/sister with autism. The two groups did not differ on perceived social support from family and friends. In linear regression models, the disability group (autism vs Down syndrome) was significantly related to sibling stress above and beyond target child behavior problems, perceived social support, and demographic factors. These results help shed light on the daily experiences of adolescent siblings of individuals with autism and call for more research into potential interventions to address increased stress levels.

https://journals.sagepub.com/doi/pdf/10.1177/1362361317722432

Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome.

OBJECTIVE: The purpose of this study was to empirically test if siblings of children with disability had higher levels of parent-reported behavioral and emotional functional impairment compared with a peer group of siblings residing with only typically developing children.

METHODS: This was a retrospective secondary analysis of data from the Medical Expenditure Panel Survey. We included only households with at least 2 children to ensure sibling relationships. Two groups of siblings were formed: 245 siblings resided in households with a child with disability and 6564 siblings resided in households with typically developing children. Parents responded to questions from the Columbia Impairment Scale to identify functional impairment in their children.

RESULTS: On the basis of parent reports and after adjusting for sibling demographic characteristics and household background, siblings of children with disability were more likely than siblings residing with typically developing children to have problems with interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time ( P < .05). The percentage of siblings of children with disability classified with significant functional impairment was 16.0% at the first measurement period and 24.2% at the second ( P < .001). For siblings of typically developing children there was a smaller percentage increase from 9.5% to 10.3% ( P < .001).

CONCLUSIONS: Functional impairment is a key indicator for the need of mental health services and, as such, early assessment and interventions to limit increasing severity and short- to long-term consequences need to be addressed. Health care professionals need to consider a family-based health care approach for families raising children with disability.

* Abbreviations:
 CI — : confidence interval
 CIS — : Columbia Impairment Scale
 MEPS — : Medical Expenditure Panel Survey

/pdf/assessing-functional-impairment-in-siblings-living-with-4xhnr6pvcb.pdf

Assessing Functional Impairment in Siblings Living With Children With Disability

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Assessing Functional Impairment in Siblings Living With Children With Disability