Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD

Taylor, Julie Lounds; Pezzimenti, Florencia; Burke, Meghan; DaWalt, Leann Smith; Lee, Chung Eun; Rabideau, Carol

doi:10.1007/s10803-021-05128-z

Cited by 16 publications

(27 citation statements)

References 27 publications

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“…In our study we report lower ratings of caregiver participation in virtual CST compared to in-person CST, mirrored by qualitative findings of emotional distance and impotence perceived by facilitators and caregiver difficulties in creating meaningful relationships in virtual CST. These findings are in line with those of Montiel-Nava et al ( 2022 ), who reported that parents receiving CST remotely in rural Missouri seemed more focused understanding the content than in sharing experiences with other parents, and of Taylor et al ( 2021 ), who reported greater reluctance to ask questions, participate in group discussions and connect with other participants in parents enrolled in an online parent training than in those receiving the corresponding in-person training. However, it is important to consider that our findings may also have been affected by emotional reactions to isolation during the pandemic.…”

Section: Discussionsupporting

confidence: 88%

“…We not only report high levels of caregiver adherence, not different from those of in-person CST, but also fewer parent-reported ‘contextual’ barriers, such as lack of time or the presence of unexpected circumstances, compared to in-person CST. This may be explained by the restrictions to social gatherings in response to the pandemic, which despite their negative effects on parental stress (Bentenuto et al, 2021 ; Kong, 2021 ; Manning et al, 2021 ; White et al, 2021 ), also reduced commitments, evening activities and travel (Taylor et al, 2021 ) allowing families to spend more time together. It is also noteworthy that there were no differences in reported ‘enactment’ barriers (difficulties in understanding and confidently apply the intervention strategies) in the home practice between the online- and in-person CST.…”

Section: Discussionmentioning

confidence: 99%

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Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy

Ferrante

Sorgato

Fioravanti

et al. 2022

J Autism Dev Disord

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Feasibility, acceptability and effectiveness data of a virtual adaptation of the WHO Caregiver Skills Training (CST; n = 25) were compared with those of a pilot RCT of CST delivered in person (n = 43) against treatment as usual (TAU; n = 43). Virtual CST was delivered with high levels of integrity, but received lower ratings in some caregiver- and facilitator-rated acceptability and feasibility dimensions. Qualitative analysis identified both benefits (flexibility, convenience, clinical usefulness) and challenges, (technological issues, distraction from family members, emotional distance). Virtual and in-person CST improved significantly more on caregiver competence than TAU; there were no other significant effects. Potential for use of virtual CST as a clinical response in contexts where in-person delivery is not possible is discussed.

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Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy

Ferrante

Sorgato

Fioravanti

et al. 2022

J Autism Dev Disord

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“…Identifying these gaps in Medicaid coverage could help interpret service use and spending research findings by characterizing individuals whose service use is not measured and by capturing cost and distress experienced by disenrolled individuals. Examining underdocumented autistic transition-age youth health care experiences has also been a priority for numerous advocacy and policy groups (Nicholas et al, 2017; Taylor et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

Medicaid Disruption Among Transition-Age Youth on the Autism Spectrum

et al. 2021

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Enrollment in Medicaid facilitates access to needed services among transition-age youth on the autism spectrum and youth with intellectual disability (ID). There are long-standing programs to ensure that individuals with ID remain enrolled as they age; similar programs for autistic youth are newer, not as widespread, and may not be as effective. We compared Medicaid disenrollment and re-enrollment between transition-age youth on the autism spectrum, youth with ID, and youth with both diagnoses using a national claims-based prospective cohort study from 2008 through 2012. Autistic youth were most likely to disenroll and least likely to re-enroll. Disenrollment peaked for all three groups at ages 19 and 21. Transition-age youth on the autism spectrum experience more disruptions in access to Medicaid-reimbursed services than youth with ID. More equitable Medicaid enrollment options for autistic individuals are needed to ensure their access to critical health care as they age.

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“…Our findings suggest that youth whose parents are advocating less often or less effectively might also be at-risk for service disparities; however, a youth’s access to services should not hinge on their parent’s ability to advocate on their behalf. Thus, there is a need for professionals and advocates who can assist individuals and families in navigating service systems (for examples of service advocacy programs, see Burke et al, 2016; Taylor et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum

Lee

Burke

DaWalt

et al. 2021

Autism

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Youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. Correlates of service access identified in the literature—such as family resources, race/ethnicity, or youth functioning—can be difficult to change and may not be feasible targets for intervention. This study focused on a potential contributor to service access that is malleable: parental advocacy. Specifically, we examined the association between parental advocacy activities and number of services among transition-aged youth with ASD, after accounting for indicators of youth functioning and family demographic variables (high school exit, co-occurring intellectual disability, social impairments, adaptive behaviors, race/ethnicity, state of residence, family income, and parental depression). Participants included 185 families of youth with ASD who are part of an ongoing randomized controlled trial. Data were collected at baseline (prior to intervention) via parental questionnaire and structured interview. Using hierarchical regression analyses, we found that parental advocacy activities were significantly and strongly associated with service receipt after controlling for youth functioning and family demographic factors. Youth whose parents are less involved in advocacy activities might be at-risk for service disparities. To close the gaps for service disparities, future interventions may target parental advocacy skills. Lay abstract It can be difficult for youth on the autism spectrum to get the services they need after they leave high school. Because of this, many studies have examined the different factors that are related to service access. These studies have shown that youth on the autism spectrum who belong to an underrepresented racial or ethnic group or whose families have lower incomes are less likely to receive the services that they need. However, it is difficult or impossible to change things like race/ethnicity or family income. It is important to also identify factors that might improve service access that we can change. One potential factor that fits into this category is parental advocacy activities. Using data collected from 185 parents of youth on the autism spectrum, we found that more parental advocacy activities were related to youth receiving more services, even after accounting for variables related to the functioning of the youth (e.g. whether they have an intellectual disability, their autism symptom severity) and demographic information about the family (e.g. state in which they live, parental race/ethnicity, and family income). Our findings suggest that building parental advocacy skills may be one important way to increase the number of services that youth on the autism spectrum receive as they transition to adulthood.

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Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD

Cited by 16 publications

References 27 publications

Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy

Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy

Medicaid Disruption Among Transition-Age Youth on the Autism Spectrum

The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum

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