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

Shivers, Carolyn M.; McGregor, Casey M.; Hough, Ashlea

doi:10.1177/1362361317722432

Cited by 31 publications

(26 citation statements)

References 58 publications

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“…Furthermore, certain parent-mediated interventions (e.g., psychoeducational interventions) may also have an influence on functioning, thus increasing parental self-efficacy (Karst et al, 2015). Interventions should also include all the members of the family, including siblings (Shivers et al, 2019; Tudor et al, 2018) and grandparents (Hillman et al, 2017), given that enhancing the resilience of the whole family would be beneficial for the family as a system.…”

Section: Discussionmentioning

confidence: 99%

Parental stress and resilience in autism spectrum disorder and Down syndrome

Cerezuela

Andrés

Pérez-Molina

et al. 2020

Journal of Family Issues

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The aim of this study was to compare parental stress and resilience in parents of children with autism spectrum disorder (ASD), Down syndrome (DS), and typical development (TD), and analyze the relationship between these two constructs. A total of 97 parents participated (ASD: n = 32, DS: n = 23, and TD: n = 42). The instruments used were the Parental Stress Index and the Resilience Scale. The ASD group obtained higher parental stress related to the child’s characteristics but not related to the parents’ characteristics. The three groups obtained moderate resilience, and high resilience was associated with low parental stress in the ASD and DS groups. The higher parental stress obtained in the ASD group, compared to the DS group, was not associated with aspects related to the parents or demographic and social factors of the families but rather with aspects related to the child and the characteristics of each disorder, as perceived by the parents.

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Section: Discussionmentioning

confidence: 99%

Parental stress and resilience in autism spectrum disorder and Down syndrome

Cerezuela

Andrés

Pérez-Molina

et al. 2020

Journal of Family Issues

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“…The most common comparison groups for ASD-Sib studies include the general population (e.g., normed samples from standardized measures; e.g., Hastings 2003), siblings of individuals without any disabilities (TD-Sibs; e.g., Kaminsky and Dewey 2002), siblings of individuals with physical illness or disabilities (PI-Sibs: e.g., Kao et al 2009), and siblings of individuals with other intellectual or developmental disabilities (IDD-Sibs; e.g., De Caroli and Sagone 2013). Of the latter group, siblings of individuals with Down syndrome (DS-Sibs; e.g., Shivers et al 2017) may be of particular interest, as families of individuals with DS often report more positive outcomes and fewer negative outcomes than families of individuals with other IDD, a phenomenon known as the Down syndrome advantage (Hodapp et al 2001). Ultimately, each comparison group offers a different picture and different advantages and disadvantages for the attempted contextualization of the ASD-Sib experience.…”

Section: Potential Moderatorsmentioning

confidence: 99%

Functioning Among Typically Developing Siblings of Individuals with Autism Spectrum Disorder: A Meta-Analysis

Shivers

Jackson

McGregor

2018

Clin Child Fam Psychol Rev

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The literature on typically developing siblings of individuals with autism spectrum disorder (ASD-Sibs) provides inconsistent results, with some studies reporting ASD-Sibs are more likely to have negative outcomes than comparison groups, and others reporting no significant differences. Therefore, the purpose of this study was to meta-analytically aggregate study effect sizes to more accurately calculate the degree to which ASD-Sibs function similarly or differently compared to siblings of people who do not have ASD. Studies were eligible for inclusion if they had a sample of ASD-Sibs older than 5; reported on emotional, psychological, behavioral, or social functioning; and provided information necessary for calculating relevant effect sizes. Results from 69 independent samples indicated that ASD-Sibs have significantly more negative outcomes than comparison groups overall (g = - 0.26); specific areas of functioning in which ASD-Sibs fared worse include internalizing behavior problems, psychological functioning, beliefs, social functioning, and the sibling relationship, but no significant differences in adjustment, attention/hyperactivity, externalizing behavior problems, coping, or family functioning. Noteworthy sub-areas of functioning in which ASD-Sibs also fared worse included beliefs about disability (g = - 0.56), anxiety symptoms (g = - 0.25), and depression symptoms (g = - 0.36). In terms of comparison group, ASD-Sibs had significantly lower functioning than siblings of individuals with other intellectual and developmental disabilities (g = - 0.31), including Down syndrome (g = - 0.40) and siblings of individuals without any disabilities (g = - 0.31). Clinicians and service providers should work to ensure that ASD-Sibs are included in family interventions and support strategies, and researchers should further explore individual differences that may relate to enhanced or impaired functioning in ASD-Sibs.

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“…For example, the increased family stress and mental health difficulties experienced by parents raising a child on the autism spectrum have been well documented [ 40 – 42 ]. Most recently, the impact of autism on other siblings in the family has been explored, with adolescent siblings of individuals on the spectrum self-reporting higher levels of stress than siblings of individuals with Down Syndrome [ 43 ]. Interventions are often cantered on supporting the individual living with autism; however, parents in the current study expressed a desire for interventions to support the health and well-being of the other children in their families, whose needs often come second to the needs of their children on the spectrum: “there are other children in the family but often it is the one with the highest needs [child on the spectrum] that is the focus”.…”

Section: Discussionmentioning

confidence: 99%

Listening to parents to understand their priorities for autism research

Clark

Adams

2020

PLoS ONE

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Involving the autism community in research increases the real-world translation and impact of findings. The current study explored the research priorities of parents of school-aged children on the autism spectrum across the home, school, and community settings. A combination of content analysis of an online questionnaire (n = 134) and Q-sort methodology (n = 9) was used. The most commonly identified research priorities in the online questionnaire were child health and well-being (home setting), socialisation and social support (school), and community awareness and understanding of autism (community). The Q-sort method highlighted different top priorities, with understanding the parent, sibling, child and family impact and stress the highest ranked priority for home, teacher/staff education and support for the school, and recognizing and supporting anxiety for the community. The implications of the findings are discussed in relation to shifting the framework of autism research to align research agendas with parental priorities.

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

Cited by 31 publications

References 58 publications

Parental stress and resilience in autism spectrum disorder and Down syndrome

Parental stress and resilience in autism spectrum disorder and Down syndrome

Functioning Among Typically Developing Siblings of Individuals with Autism Spectrum Disorder: A Meta-Analysis

Listening to parents to understand their priorities for autism research

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