Adaptation in Families of Individuals With Down Syndrome: Findings From Twelve Countries

Purpose: The diagnosis of Down syndrome comes as a surprise to most parents. Parents of individuals with Down syndrome have reported experiencing the full range emotions. Negative emotions such as sadness, grief, fear, shock, anger, guilt, and denial are commonly reported. However, parents also report experiencing positive emotions such as love, hope, peace, and acceptance. There is growing evidence that many families successfully adapt to the ongoing challenges associated with raising an individual with Down syndrome. However, much of this evidence has come from studies conducted with parents of individuals with Down Syndrome who live in Western countries and samples for these studies have typically been limited to parents of individuals with Down syndrome from a single country. Moreover, in many of these studies a negative indicator of adaptation is used. That is, rather than assessing positive indicators of adaptation such as family functioning and parental well-being, researchers have assessed variables such as stress, burden, anxiety and depression. Therefore, the purpose of this study, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was to examine family functioning and parental well-being in families of individuals with Down syndrome from 12 countries. We also examined how family factors (i.e., family demands, family appraisal, family resources, and family problem-solving communication) influence family functioning and parental well-being.

Methods: Over 3000 parents from more than 50 countries have completed all or part of a survey of self-report questionnaires for our cross-cultural study concerning adaptation and resilience in families of individuals with Down syndrome. The survey included the following measures: Family Index of Regenerativity and Adaptation, Family Management Measure, Family Problem Solving Communication Index, Family Member Well-Being Index, and Brief Family Assessment Measure-General. For this presentation, we will focus on findings from parents in our 12 main countries (Argentina, Brazil, Ireland, Israel, Italy, Japan, Korea, Portugal, Spain, Thailand, United Kingdom, and USA). Only data from the 1,665 parents with no missing variables for the key variables were used in our analyses. Linear Mixed Models were used accounting for intra-familial correlation and constant variance for parents from the same family.

Results: Each predictor had a significant (p<0.001) effect on family functioning and parental well-being in the expected direction. An adaptive modeling process was used to reduce the model with all 10 predictors holding the covariates (gender, parent status, country) and the intercept fixed in the model. Family functioning (lower scores indicating better family functioning) was significantly better with greater Condition Management Ability (estimated slope -0.20, p<0.001), greater Mutuality when Partnered (estimated slope -0.08, p<0.001), greater Family Hardiness (estimated slope -0.40, p<0.001), and more Affirmative Communication (estimated slope -1.45, p<0.001) and significantly worse with greater Family Strains (estimated slope 0.08, p=0.003), greater Family Life Difficulty (estimated slope 0.09, p=0.005) and more Incendiary Communication (estimated slope 0.73, p<0.001). For parents from Korea, family functioning was significantly better than for US parents (estimated slope -3.04, p<0.001). Family functioning was significantly worse for parents from the following countries than it was for US parents: Brazil (estimated slope 10.2, p<0.001), Israel (estimated slope 4.91, p=0.001), Portugal (estimated slope 2.42, p=0.013), Spain (estimated slope 2.11, p=0.003), and Thailand (estimated slope 4.08, p <0.001). Family functioning got worse as the age of the child with Down syndrome increased (estimated slope 0.08, p=0.001). Parental well-being (higher scores indicating better parental well-being) was significantly better with greater Condition Management Ability (estimated slope 0.29, p<0.001) and greater Family Hardiness (estimated slope 0.40, p<0.001) and significantly worse with greater Family Strains (estimated slope -0.51, p<0.001), greater Condition Management Effort (estimated slope -0.54, p<0.001) and more Incendiary Communication (estimated slope -0.77, p<0.001). For parents in Thailand, parental well-being was significantly better than for US parents (estimated slope 4.48, p<0.001). For parents from Japan, parental well-being was significantly worse than for US parents (estimated slope -4.79, p<0.001)

Conclusion: While the experience of raising an individual with Down syndrome includes ongoing challenges, many families adapt well and some thrive. It is critical that health care providers provide accurate information concerning life with Down syndrome when they speak with new/expectant parents. Efforts to intervene with families of individuals with Down syndrome are likely to be more effective if health care professionals recognize how culture and family factors influence both family functioning and parental well-being. More cross-cultural research is needed to understand how social determinants of health, such as culture, societal attitudes towards Down syndrome and national approaches to integrating non-invasive prenatal testing into clinical practice, influence family functioning and parental well-being in families of individuals with Down syndrome.