BMC public health · 2026
When "Integration" fails to address loneliness: interventional challenges of parent-led organizations for autistic children's social/emotional loneliness and health equity in China.
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Wang Xi, Guo Xiaoli
Аннотация
BACKGROUND: Loneliness is a key driver of health inequities faced by autistic children. However, research on how parent-led organizations align their goals to address loneliness remains scarce.
METHODS: Between 2021 and 2024, a qualitative study was conducted in three Chinese cities, utilizing semi-structured interviews with 37 stakeholders and participatory observations.
RESULTS: Parent-led organizational interventions exhibited three interrelated goals: shifting from individual family-based strategies (exemplified by but not limited to 'having a second child for companionship') to collective 'outings for social interaction outside the home' (with peer companionship programs as organizational alternatives); avoiding the stigma of loneliness by framing interventions as social integration, which obscures links between loneliness and health; and prioritizing parents' social reintegration over autistic children's loneliness needs. Limitations of these intervention goals, potentially weakening intervention efficacy and failing to create conditions conducive to reducing loneliness-related health disparities, are shaped by China's social transformation: collectivist values emphasize interdependence, driving demand for integration; limited formal welfare pushes parents to organize; and stigma around autism discourages explicit discussion of loneliness.
CONCLUSIONS: This study highlights the uniqueness of China's parent-led intervention model-characterized by cultural adaptation, stigma mitigation, and dual support for both autistic children and parents-compared to Western models that focus more on professionalized services. While parent-led organizations fill essential gaps through culturally grounded, peer-supported pathways that formal services often cannot reach, distinguishing between social and emotional loneliness and centering autistic children's heterogeneous needs are critical to refining these interventions and fostering meaningful belonging.
METHODS: Between 2021 and 2024, a qualitative study was conducted in three Chinese cities, utilizing semi-structured interviews with 37 stakeholders and participatory observations.
RESULTS: Parent-led organizational interventions exhibited three interrelated goals: shifting from individual family-based strategies (exemplified by but not limited to 'having a second child for companionship') to collective 'outings for social interaction outside the home' (with peer companionship programs as organizational alternatives); avoiding the stigma of loneliness by framing interventions as social integration, which obscures links between loneliness and health; and prioritizing parents' social reintegration over autistic children's loneliness needs. Limitations of these intervention goals, potentially weakening intervention efficacy and failing to create conditions conducive to reducing loneliness-related health disparities, are shaped by China's social transformation: collectivist values emphasize interdependence, driving demand for integration; limited formal welfare pushes parents to organize; and stigma around autism discourages explicit discussion of loneliness.
CONCLUSIONS: This study highlights the uniqueness of China's parent-led intervention model-characterized by cultural adaptation, stigma mitigation, and dual support for both autistic children and parents-compared to Western models that focus more on professionalized services. While parent-led organizations fill essential gaps through culturally grounded, peer-supported pathways that formal services often cannot reach, distinguishing between social and emotional loneliness and centering autistic children's heterogeneous needs are critical to refining these interventions and fostering meaningful belonging.