Abstract

Background There is growing evidence that while some families of individuals with Down Syndrome (DS) find it difficult to adapt to the ongoing challenges associated with raising an individual with DS, others adapt successfully and some even thrive. However, few studies have examined the experiences of families living in different countries. Therefore, the aim of this study was to examine the influence of family factors on adaptation in families of individuals with DS living in four countries. Methods The guiding framework for this study was the Resiliency Model of Stress, Adjustment and Adaptation. Over 800 parents of individuals with DS from Ireland, Portugal, UK, and USA completed a survey which included these measures: Family Index of Regenerativity and Adaptation- General; Family Management Measure; Family Problem Solving Communication Index and the Brief Family Assessment Measure. Linear mixed modelling was used accounting for intra-familial correlation and constant variance for the two parents. An adaptive modelling process was also used. Results Family functioning was worse with greater family strains and incendiary communication and with lower condition management ability, affirming communication, and family hardiness. Parent wellbeing was worse with greater condition management effort, family strains, family stressors and incendiary communication and with lower condition management ability and family hardiness. Conclusion Findings contribute to our understanding of the underlying processes associated with differing outcomes in families of individuals with DS. Efforts to intervene will be more effective if clinicians recognise how culture and family factors interact and shape how families respond.

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