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Association between distress and knowledge among parents of autistic children.

ABSTRACT: Understanding the overall utility of biological testing for autism spectrum disorder (ASD) is essential for the development and integration of biomarkers into routine care. One measure related to the overall utility of biological testing is the knowledge that a person has about the condition he/she suffers from. However, a major gap towards understanding the role of knowledge in overall utility is the absence of studies that have assessed knowledge of autism along with its predictors within a representative sample of families within the context of routine care. The objective of this study was to measure knowledge of ASD among families within the routine care pathway for biological testing in ASD by examining the association between knowledge with potential correlates of knowledge namely sociodemographic factors, parental stress and distress, and time since diagnosis among parents whose child with ASD is undergoing clinical genetic testing. Parents of a child diagnosed with ASD (n = 85, Mage = 39.0, SD = 7.7) participating in an ongoing prospective genomics study completed the ASD Quiz prior to undergoing genetic testing for clinical and research purposes. Parents also completed self-reported measures of stress and distress. Parent stress and distress was each independently correlated with knowledge of ASD, rs ? 0.26, ps < 0.05. Stepwise regression analysis revealed a significant model accounting for 7.8% of the variance in knowledge, F (1, 82) = 8.02, p = 0.006. The only factor significantly associated with knowledge was parental distress, ? = 0.30, p = 0.006. Parental stress, time since diagnosis, and sociodemographic factors were not significant predictors in this model. We concluded that families require tailored support prior to undergoing genetic testing to address either knowledge gaps or high distress. Ongoing appraisal of the testing process among families of diverse backgrounds is essential in offering optimal care for families undergoing genetic testing.

SUBMITTER: Yusuf A

PROVIDER: S-EPMC6763195 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Association between distress and knowledge among parents of autistic children.

Yusuf Afiqah A Peltekova Iskra I Savion-Lemieux Tal T Frei Jennifer J Bruno Ruth R Joober Ridha R Howe Jennifer J Scherer Stephen W SW Elsabbagh Mayada M

PloS one 20190926 9

Understanding the overall utility of biological testing for autism spectrum disorder (ASD) is essential for the development and integration of biomarkers into routine care. One measure related to the overall utility of biological testing is the knowledge that a person has about the condition he/she suffers from. However, a major gap towards understanding the role of knowledge in overall utility is the absence of studies that have assessed knowledge of autism along with its predictors within a re ...[more]

PMID: 31557237

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Project description:BackgroundParents of autistic children experience increased levels of caregiver strain and adverse mental health outcomes, even in comparison to parents of children with other neurodevelopmental disabilities. Previous studies have largely attributed these increased levels of mental health concerns to their child behavioral concerns and autism symptomatology, but less attention has been given to other potential child factors, such as child adaptive functioning. Additionally, little is known about potential protective factors, such as parents' emotion regulation (ER) abilities, that may ameliorate the experience of caregiver strain, anxiety, and depression.ObjectiveThe current study examined the impact of child characteristics (restricted and repetitive behaviors, adaptive functioning and behavioral concerns) on parent mental health outcomes (caregiver strain, anxiety, depression and wellbeing). Additionally, we explore parents' ER abilities as a moderator of the impact of child characteristic on parents' mental health outcomes.ResultsResults of linear mixed effect models indicated a significant relationship between parents' ER abilities and all four parent outcomes. Additionally, children's adaptive functioning abilities and repetitive behaviors (RRBs) were significant predictors of caregiving strain. Parents' ER abilities were a significant moderator of the effect of children's repetitive behaviors and adaptive functioning challenges on caregiver strain, such that better ER abilities mitigated the impact of child clinical factors on caregiver strain. Finally, a significant difference was detected for mothers' and fathers' mental health, with mothers reporting higher caregiver strain, and more symptoms of anxiety and depression than did fathers.ConclusionThis study leveraged a large sample of autistic children and their biological parents to examine the relationship between children's clinical characteristics and parents' psychological wellbeing. Results indicate that, although parents of autistic children do experience high rates of internalizing mental health concerns that relate to child adaptive functioning and RRBs, parent ER abilities act as a protective factor against parents' adverse mental health outcomes. Further, mothers in our sample reported significantly higher rates of depression, anxiety, and caregiver strain, as compared with fathers.

Project description:Background & aimsEarly gesture plays an important role in prelinguistic/emerging linguistic communication and may provide insight into a child's social communication skills before the emergence of spoken language. Social interactionist theories suggest children learn to gesture through daily interactions with their social environment (e.g., their parents). As such, it is important to understand how parents gesture within interactions with their children when studying child gesture. Parents of typically developing (TD) children exhibit cross-racial/ethnic differences in gesture rate. Correlations between parent and child gesture rates arise prior to the first birthday, although TD children at this developmental level do not yet consistently exhibit the same cross-racial/ethnic differences as their parents. While these relationships have been explored in TD children, less is known about the gesture production of young autistic children and their parents. Further, studies of autistic children have historically been conducted with predominantly White, English-speaking participants. As a result, there is little data regarding the gesture production of young autistic children and their parents from diverse racial/ethnic backgrounds. In the present study, we examined the gesture rates of racially/ethnically diverse autistic children and their parents. Specifically, we explored (1) cross-racial/ethnic differences in the gesture rate of parents of autistic children, (2) the correlation between parent and child gesture rates, and (3) cross-racial/ethnic differences in the gesture rates of autistic children.MethodsParticipants were 77 racially/ethnically diverse cognitively and linguistically impaired autistic children (age 18 to 57 months) and a parent who participated in one of two larger intervention studies. Naturalistic parent-child and structured clinician-child interactions were video recorded at baseline. Parent and child gesture rate (number of gestures produced per 10 min) were extracted from these recordings.Results(1) Parents exhibited cross-racial/ethnic differences in gesture rate such that Hispanic parents gestured more frequently than Black/African American parents, replicating previous findings in parents of TD children. Further, South Asian parents gestured more than Black/African American parents. (2) The gesture rate of autistic children was not correlated with parent gesture, a finding that differs from TD children of a similar developmental level. (3) Autistic children did not exhibit the same cross-racial/ethnic differences in gesture rate as their parents, a result consistent with findings from TD children.ConclusionsParents of autistic children-like parents of TD children-exhibit cross-racial/ethnic differences in gesture rate. However, parent and child gesture rates were not related in the present study. Thus, while parents of autistic children from different ethnic/racial backgrounds appear to be conveying differences in gestural communication to their children, these differences are not yet evident in child gesture.ImplicationsOur findings enhance our understanding of the early gesture production of racially/ethnically diverse autistic children in the prelinguistic/emerging linguistic stage of development, as well as the role of parent gesture. More research is needed with developmentally more advanced autistic children, as these relationships may change with development.

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Association between distress and knowledge among parents of autistic children.

Publications

Association between distress and knowledge among parents of autistic children.

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