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Background <p>Informal caregivers of adults with autism spectrum disorders (ASD) face multidimensional stressors that can negatively impact their physical, social, and emotional well-being. This scoping review aimed to systematically map available evidence on the burden dimensions and support interventions for informal caregivers of adults with ASD.</p> Methods <p>Following PRISMA-ScR guidelines, we searched PubMed, CINAHL, and Scopus (2015–2025), supplemented by gray literature and manual searches. Using PCC criteria (Population: informal caregivers of adults ≥ 18 years with ASD; Concept: burden dimensions and support interventions; Context: all healthcare/social care settings), we included empirical studies, clinical guidelines, and policy documents addressing caregiver needs. Data were charted using a standardized form based on Novak and Guest’s multidimensional burden framework (time-dependence, developmental, physical, social, emotional burden) and Marsack and Hopp’s financial burden dimension. Thematic analysis was conducted by the primary reviewer with team consultation for unclear cases.</p> Results <p>Thirty-one sources from 16 countries were included (24 empirical studies, 7 systematic reviews/meta-analyses, and 27 evidence-based guidelines). All sources addressed multiple burden dimensions: time-dependence (100%), emotional (100%), social (97%), physical (94%), developmental (87%), and financial burden (68%). Most frequently recommended interventions included education/training programs (90%), social support systems (84%), respite services (77%), and psychological support (74%). Significant research gaps were identified in longitudinal studies (only 16% of empirical studies), cultural adaptation of interventions, and comprehensive financial impact assessment.</p> Conclusions <p>Informal caregivers of adults with ASD experience multidimensional burden requiring comprehensive, culturally sensitive support interventions. This review provides the first systematic international mapping of caregiver burden dimensions specifically for adult ASD populations, distinguishing adult caregiving contexts from pediatric research. Future research should prioritize longitudinal intervention studies and culturally adapted support programs.</p>

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Needs, Challenges, Burdens and Interventions for Informal Caregivers of Adults with Autism Spectrum Disorders (ASD): A Scoping Review

  • 期刊论文

  • 发表日期：

    2026年3月28日

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  • Matthias Prommersberger,
  • Markus Witzmann,
  • Tobias Schuwerk

摘要

Background

Informal caregivers of adults with autism spectrum disorders (ASD) face multidimensional stressors that can negatively impact their physical, social, and emotional well-being. This scoping review aimed to systematically map available evidence on the burden dimensions and support interventions for informal caregivers of adults with ASD.

Methods

Following PRISMA-ScR guidelines, we searched PubMed, CINAHL, and Scopus (2015–2025), supplemented by gray literature and manual searches. Using PCC criteria (Population: informal caregivers of adults ≥ 18 years with ASD; Concept: burden dimensions and support interventions; Context: all healthcare/social care settings), we included empirical studies, clinical guidelines, and policy documents addressing caregiver needs. Data were charted using a standardized form based on Novak and Guest’s multidimensional burden framework (time-dependence, developmental, physical, social, emotional burden) and Marsack and Hopp’s financial burden dimension. Thematic analysis was conducted by the primary reviewer with team consultation for unclear cases.

Results

Thirty-one sources from 16 countries were included (24 empirical studies, 7 systematic reviews/meta-analyses, and 27 evidence-based guidelines). All sources addressed multiple burden dimensions: time-dependence (100%), emotional (100%), social (97%), physical (94%), developmental (87%), and financial burden (68%). Most frequently recommended interventions included education/training programs (90%), social support systems (84%), respite services (77%), and psychological support (74%). Significant research gaps were identified in longitudinal studies (only 16% of empirical studies), cultural adaptation of interventions, and comprehensive financial impact assessment.

Conclusions

Informal caregivers of adults with ASD experience multidimensional burden requiring comprehensive, culturally sensitive support interventions. This review provides the first systematic international mapping of caregiver burden dimensions specifically for adult ASD populations, distinguishing adult caregiving contexts from pediatric research. Future research should prioritize longitudinal intervention studies and culturally adapted support programs.