Background Informal caregiving for individuals with autism spectrum disorder (ASD) poses significant challenges for family members. No comprehensive investigation in Germany that systematically integrates quantitative and qualitative perspectives. Methods As part of a nationwide online survey [<CitationRef CitationID="CR31">31</CitationRef>] conducted from December 2024 to March 2025 (N = 660 participants), 326 complete quantitative datasets from caregivers of adults with ASD were obtained using standardized instruments: the iMTA Valuation of Informal Care Questionnaire (iVICQ) for evaluating informal caregiving [<CitationRef CitationID="CR13">13</CitationRef>], the multidimensional Caregiver Burden model by Novak and Guest [<CitationRef CitationID="CR30">30</CitationRef>], and the short questionnaire on social participation KsT‑5 [<CitationRef CitationID="CR4">4</CitationRef>, <CitationRef CitationID="CR30">30</CitationRef>]. Of the total sample, 526 participants (79.7%) responded to at least one open-ended text field, which were analyzed using structured qualitative content analysis according to Mayring [<CitationRef CitationID="CR27">27</CitationRef>] in MAXQDA 24 (VERBI Software GmbH, Berlin, Germany) (Cohen’s κ = 0.87) [<CitationRef CitationID="CR27">27</CitationRef>]. Integration of quantitative and qualitative findings was achieved through systematic triangulation [<CitationRef CitationID="CR8">8</CitationRef>, <CitationRef CitationID="CR11">11</CitationRef>]. Results Caregivers reported an average weekly care load of 50.8 h (standard deviation = 28.3 h) over an average duration of 17.2 years. Analysis according to Novak and Guest [<CitationRef CitationID="CR30">30</CitationRef>] indicated high burden levels: 93.8% reported time-dependent, 87.4% developmental, and 82.1% emotional burden above the critical threshold (≥ 4 on a 7-point scale). The economic value of this care was estimated at € 36,4 billion annually. Qualitative analysis (n = 2770 segments) substantially enriched the quantitative picture: 64.3% of coded statements referred to systemic deficits rather than caregiving itself. Caregivers articulated existential concerns about the future, financial worries regarding old-age poverty, and systematic frustration with bureaucracy. Triangulation revealed that quantitatively measured burden is primarily attributed qualitatively to avoidable systemic deficits rather than ASD caregiving itself. Conclusion This study is the first in Germany to document the multidimensional burden of informal caregivers with ASD through the systematic integration of quantitative and qualitative data. Qualitative findings indicate that the observed burden is largely attributable to systemic shortcomings (lack of ASD-specific support, bureaucracy, insufficient recognition) rather than caregiving per se. These results underscore the need for structural reforms. The stark contrast between the economic value of caregiving and the experienced social marginalization calls for a paradigmatic shift.

Multidimensionale Belastungen informell pflegender Angehöriger von Menschen mit Autismus-Spektrum-Störung: Eine Mixed-methods-Studie

期刊论文
发表日期：

2026年5月11日

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Matthias Prommersberger,
Markus Witzmann,
Tobias Schuwerk

摘要

Background

Informal caregiving for individuals with autism spectrum disorder (ASD) poses significant challenges for family members. No comprehensive investigation in Germany that systematically integrates quantitative and qualitative perspectives.

Methods

As part of a nationwide online survey [31] conducted from December 2024 to March 2025 (N = 660 participants), 326 complete quantitative datasets from caregivers of adults with ASD were obtained using standardized instruments: the iMTA Valuation of Informal Care Questionnaire (iVICQ) for evaluating informal caregiving [13], the multidimensional Caregiver Burden model by Novak and Guest [30], and the short questionnaire on social participation KsT‑5 [4, 30]. Of the total sample, 526 participants (79.7%) responded to at least one open-ended text field, which were analyzed using structured qualitative content analysis according to Mayring [27] in MAXQDA 24 (VERBI Software GmbH, Berlin, Germany) (Cohen’s κ = 0.87) [27]. Integration of quantitative and qualitative findings was achieved through systematic triangulation [8, 11].

Results

Caregivers reported an average weekly care load of 50.8 h (standard deviation = 28.3 h) over an average duration of 17.2 years. Analysis according to Novak and Guest [30] indicated high burden levels: 93.8% reported time-dependent, 87.4% developmental, and 82.1% emotional burden above the critical threshold (≥ 4 on a 7-point scale). The economic value of this care was estimated at € 36,4 billion annually. Qualitative analysis (n = 2770 segments) substantially enriched the quantitative picture: 64.3% of coded statements referred to systemic deficits rather than caregiving itself. Caregivers articulated existential concerns about the future, financial worries regarding old-age poverty, and systematic frustration with bureaucracy. Triangulation revealed that quantitatively measured burden is primarily attributed qualitatively to avoidable systemic deficits rather than ASD caregiving itself.

Conclusion

This study is the first in Germany to document the multidimensional burden of informal caregivers with ASD through the systematic integration of quantitative and qualitative data. Qualitative findings indicate that the observed burden is largely attributable to systemic shortcomings (lack of ASD-specific support, bureaucracy, insufficient recognition) rather than caregiving per se. These results underscore the need for structural reforms. The stark contrast between the economic value of caregiving and the experienced social marginalization calls for a paradigmatic shift.