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Background <p>Informal family caregivers of people with autism spectrum disorder (ASD) face unique challenges beyond traditional care concepts. Systematic studies on multidimensional burden and its impact on health and social participation are lacking in Germany.</p> Methods <p>Nationwide online survey (December 2024–March 2025) with&#xa0;660 participants. After systematic analysis of missing values,&#xa0;326 complete datasets (49.4%) were available. Six burden dimensions according to Novak and Guest, social participation, health status, and economic value of care were assessed.</p> Results <p>Average caregiving time was&#xa0;50.8 h per week. High burden levels were found for time-dependent (93.8%), developmental (87.4%), and emotional dimensions (82.1%). Caregiver burden correlated significantly negatively with health status (Spearman rank correlation r<sub>s</sub> = − 0.298, <i>p</i> = 0.001) and happiness (r<sub>s</sub> = − 0.467, <i>p</i> = 0.001). Sole caregivers (45.4%) showed higher burden. Social participation was substantially restricted. The economic value totals&#xa0;36.4 billion euros annually.</p> Conclusion <p>This study provides the first comprehensive documentation of multidimensional burden and systematic participation restrictions among informal ASD family caregivers in Germany. ASD-specific respite services, financial support, and structural reforms are urgently needed.</p>

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Belastungen und soziale Teilhabe informell pflegender Angehöriger von Menschen mit Autismus-Spektrum-Störung: Eine bundesweite Online-Befragung

  • 期刊论文

  • 发表日期：

    2026年1月14日

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  • Matthias Prommersberger,
  • Markus Witzmann,
  • Tobias Schuwerk

摘要

Background

Informal family caregivers of people with autism spectrum disorder (ASD) face unique challenges beyond traditional care concepts. Systematic studies on multidimensional burden and its impact on health and social participation are lacking in Germany.

Methods

Nationwide online survey (December 2024–March 2025) with 660 participants. After systematic analysis of missing values, 326 complete datasets (49.4%) were available. Six burden dimensions according to Novak and Guest, social participation, health status, and economic value of care were assessed.

Results

Average caregiving time was 50.8 h per week. High burden levels were found for time-dependent (93.8%), developmental (87.4%), and emotional dimensions (82.1%). Caregiver burden correlated significantly negatively with health status (Spearman rank correlation rs = − 0.298, p = 0.001) and happiness (rs = − 0.467, p = 0.001). Sole caregivers (45.4%) showed higher burden. Social participation was substantially restricted. The economic value totals 36.4 billion euros annually.

Conclusion

This study provides the first comprehensive documentation of multidimensional burden and systematic participation restrictions among informal ASD family caregivers in Germany. ASD-specific respite services, financial support, and structural reforms are urgently needed.