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Multidimensional Burden on Family Caregivers of Adults with Autism Spectrum Disorder: A Scoping Review

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Title: Multidimensional Burden on Family Caregivers of Adults with Autism Spectrum Disorder: A Scoping Review
Language: English
Authors: Sophia Dückert (ORCID 0000-0002-2953-2487), Petia Gewohn, Hannah König, Daniel Schöttle, Alexander Konnopka, Pascal Rahlff, Kai Vogeley, Holger Schulz, Nicole David, Judith Peth
Source: Review Journal of Autism and Developmental Disorders. 2025 12(4):723-740.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 18
Publication Date: 2025
Document Type: Journal Articles
Information Analyses
Descriptors: Caregivers, Adults, Autism Spectrum Disorders, Stress Variables, Stress Management, Intervention, Quality of Life, Mental Health, Outcomes of Treatment
DOI: 10.1007/s40489-023-00414-1
ISSN: 2195-7177
2195-7185
Abstract: Family caregivers often play a critical role in supporting their relative(s) with autism spectrum disorder (ASD) across the lifespan. This can lead to great burdens on family caregivers themselves. However, to date, the potential burden on family caregivers has not been in the focus of research, particularly, with respect to caregiver burden as relatives with ASD advance to adulthood. Thus, this scoping review aimed to (a) systematically map research regarding multiple dimensions of caregiver burden on family caregivers of adults with ASD (i.e., time dependence, developmental, physical, social, emotional, and financial burden) and (b) identify interventions designed to reduce such burden. A total of N = 33 eligible studies highlighted the impact of caregiving demands for adults with ASD, mainly focusing on emotional burden of caregiving (n = 27), reporting decreased mental quality of life and mental health. Findings gave indications on all other dimensions of caregiver burden, but evidence is lacking. No study was identified that provided evidence for specific interventions to reduce or to prevent caregiver burden. Findings highlighted the urgent need for more research on this topic and the development of strategies to support family caregivers of adults with ASD.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1502403
Database: ERIC
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  Data: Multidimensional Burden on Family Caregivers of Adults with Autism Spectrum Disorder: A Scoping Review
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  Data: <searchLink fieldCode="AR" term="%22Sophia+Dückert%22">Sophia Dückert</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-2953-2487">0000-0002-2953-2487</externalLink>)<br /><searchLink fieldCode="AR" term="%22Petia+Gewohn%22">Petia Gewohn</searchLink><br /><searchLink fieldCode="AR" term="%22Hannah+König%22">Hannah König</searchLink><br /><searchLink fieldCode="AR" term="%22Daniel+Schöttle%22">Daniel Schöttle</searchLink><br /><searchLink fieldCode="AR" term="%22Alexander+Konnopka%22">Alexander Konnopka</searchLink><br /><searchLink fieldCode="AR" term="%22Pascal+Rahlff%22">Pascal Rahlff</searchLink><br /><searchLink fieldCode="AR" term="%22Kai+Vogeley%22">Kai Vogeley</searchLink><br /><searchLink fieldCode="AR" term="%22Holger+Schulz%22">Holger Schulz</searchLink><br /><searchLink fieldCode="AR" term="%22Nicole+David%22">Nicole David</searchLink><br /><searchLink fieldCode="AR" term="%22Judith+Peth%22">Judith Peth</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Review+Journal+of+Autism+and+Developmental+Disorders%22"><i>Review Journal of Autism and Developmental Disorders</i></searchLink>. 2025 12(4):723-740.
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  Data: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
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  Data: <searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Variables%22">Stress Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Management%22">Stress Management</searchLink><br /><searchLink fieldCode="DE" term="%22Intervention%22">Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink><br /><searchLink fieldCode="DE" term="%22Outcomes+of+Treatment%22">Outcomes of Treatment</searchLink>
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  Data: 10.1007/s40489-023-00414-1
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  Data: 2195-7177<br />2195-7185
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  Data: Family caregivers often play a critical role in supporting their relative(s) with autism spectrum disorder (ASD) across the lifespan. This can lead to great burdens on family caregivers themselves. However, to date, the potential burden on family caregivers has not been in the focus of research, particularly, with respect to caregiver burden as relatives with ASD advance to adulthood. Thus, this scoping review aimed to (a) systematically map research regarding multiple dimensions of caregiver burden on family caregivers of adults with ASD (i.e., time dependence, developmental, physical, social, emotional, and financial burden) and (b) identify interventions designed to reduce such burden. A total of N = 33 eligible studies highlighted the impact of caregiving demands for adults with ASD, mainly focusing on emotional burden of caregiving (n = 27), reporting decreased mental quality of life and mental health. Findings gave indications on all other dimensions of caregiver burden, but evidence is lacking. No study was identified that provided evidence for specific interventions to reduce or to prevent caregiver burden. Findings highlighted the urgent need for more research on this topic and the development of strategies to support family caregivers of adults with ASD.
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