<p>There is scarce evidence on how families of autistic children in Sweden create and sustain everyday routines that are meaningful to their goals and values, congruent with all family members’ needs and interests, and fit with the existing resources. This study explored sustainability of daily routines and patterns of accommodations in families of autistic preschool-aged children with or without intellectual disability from culturally, ethnically, and linguistically diverse backgrounds. Eleven parents participated in semi-structured, ecocultural family interviews (EFI). Researchers used the EFI codebook to rate the intensity of family accommodation activities and sustainability of their daily routines, and then conducted a thematic analysis of the results. Findings show that families’ accommodation activities varied in intensity in multiple ecocultural domains – from low levels to high – depending on available resources and children’s needs. For the majority of families, irrespective of their cultural background, three overarching themes of family accommodations were identified: (1) mother involvement and commitment; (2) being socially isolated; and (3) importance of public services and professionals’ support. Most families had a moderate-high level of sustainability of routines demonstrating some resilience and adaptive responses to challenges such as limited social support, financial difficulties, balancing career and childcare, or dissatisfaction with provision of educational or healthcare services. Consistent with the Ecocultural theoretical framework, this study’s findings have practical implications for designing individualized and sustainable interventions for autistic children and their families that are meaningful, congruent, and ecologically fit.</p>

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Accommodations and Sustainability of Daily Routines in Culturally Diverse Families of Autistic Children

  • Rano Zakirova-Engstrand,
  • Jenny Wilder

摘要

There is scarce evidence on how families of autistic children in Sweden create and sustain everyday routines that are meaningful to their goals and values, congruent with all family members’ needs and interests, and fit with the existing resources. This study explored sustainability of daily routines and patterns of accommodations in families of autistic preschool-aged children with or without intellectual disability from culturally, ethnically, and linguistically diverse backgrounds. Eleven parents participated in semi-structured, ecocultural family interviews (EFI). Researchers used the EFI codebook to rate the intensity of family accommodation activities and sustainability of their daily routines, and then conducted a thematic analysis of the results. Findings show that families’ accommodation activities varied in intensity in multiple ecocultural domains – from low levels to high – depending on available resources and children’s needs. For the majority of families, irrespective of their cultural background, three overarching themes of family accommodations were identified: (1) mother involvement and commitment; (2) being socially isolated; and (3) importance of public services and professionals’ support. Most families had a moderate-high level of sustainability of routines demonstrating some resilience and adaptive responses to challenges such as limited social support, financial difficulties, balancing career and childcare, or dissatisfaction with provision of educational or healthcare services. Consistent with the Ecocultural theoretical framework, this study’s findings have practical implications for designing individualized and sustainable interventions for autistic children and their families that are meaningful, congruent, and ecologically fit.