Family Management of Down Syndrome: Cross-Cultural Perspectives

Abstract

Aims With a worldwide incidence of one in every 1000 – 1100 live births, Down Syndrome (DS) is the most common genetic cause of intellectual disability. How families incorporate the child's special needs into everyday family life (family management) influences both child and family adaptation. The purpose of this analysis was to assess the internal consistency reliability of seven translations of the Family Management Measure (FaMM) and to examine cross-cultural differences in family management of DS. Methods 2740 parents of individuals with DS (2387 mothers and 353 fathers) from 11 countries completed the 53-item FaMM as part of a cross-cultural study of adaptation in families of individuals with DS. Selected descriptive statistics were computed. Reliability was assessed using Cronbach's alpha. Cross-cultural comparison of family management was addressed by rank ordering FaMM subscale means with a higher rank indicating greater ease in family management. Results Parents from Portugal, Spain and the US had mean scores reflecting greater ease in family management across all FaMM subscales; parents from Ireland, Italy, Korea, and Thailand had mean scores across all FaMM subscales indicating more problematic family management. The rankings for Brazil, Netherlands, and United Kingdom reflected areas of both management ease and difficulty. Conclusions Findings from this study suggest there are cross-cultural differences in family management of DS. More research is needed to fully understand if these differences are related to social determinants of health such as culture, societal attitudes towards DS and national approaches to integrating non-invasive prenatal testing into clinical practice.