Family functioning in families with a child with Down syndrome: a mixed methods approach.
Child behavior, not the Down-syndrome label, drives family strain—so zero-in on those autism-like behaviors in your behavior plan.
01Research in Context
What this study did
Syriopoulou-Delli et al. (2012) interviewed the families who have a child with Down syndrome. They asked about daily routines, stress, and how the family gets along. They also gave standard surveys on family and marital adjustment.
The team mixed numbers and open answers. They wanted to see if autism-like behaviors in the child hurt overall family life.
What they found
Families scored near normal on total family and marriage tests. Yet the same parents said meltdowns, rigidity, or social withdrawal did wear them down. Mixed methods let the small sample show both views.
In short: big picture looks fine, but child behavior still chips away at daily joy.
How this fits with other research
Busch et al. (2010) found mothers of kids with Down syndrome felt less stress than mothers of kids with autism. K et al. now add that, within Down-syndrome homes, it is the autism-like behaviors—not the diagnosis itself—that stress the family. The two studies line up.
Lanfranchi et al. (2012) surveyed many genetic syndromes and also saw Down-syndrome parents report the lowest stress. K et al. deepen that view by showing stress still tracks child behavior inside the Down-syndrome group.
Amaral et al. (2017) showed some children with Down syndrome meet ASD screen criteria but have milder social deficits. K et al. link those milder, yet real, social quirks to day-to-day family wear-and-tear.
Why it matters
You do not need to label the whole family as ‘dysfunctional.’ Instead, target the specific autism-like behaviors you see—repetitive play, food rigidity, or social withdrawal. A short FBA and a few replacement skills can drop family stress fast, even if the child’s IQ stays the same.
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02At a glance
03Original abstract
BACKGROUND: This study aimed to explore the factors that predict functioning in families with a child with Down syndrome using a mixed methods design. The quantitative component examined the effect of maladaptive and autism-spectrum behaviours on the functioning of the family while the qualitative component explored the impact of having a child with Down syndrome on family holidays, family activities and general family functioning. METHODS: Participants in this study were 224 primary caregivers of children with Down syndrome aged 4-25 years (57.1% male; 42.9% female) currently residing in Western Australia (74.0% in metropolitan Perth and 26.0% in rural Western Australia). RESULTS: Maladaptive and autism-spectrum behaviour were associated with poorer family functioning. Mean total scores on the measures of family functioning and marital adjustment were comparable to that of families of typically developing children. Consistent with the quantitative findings, normality was the most common theme to emerge in the qualitative data. Child problem behaviours were also identified by parents/carers as having a negative impact on the family. CONCLUSIONS: This study has implications for the development of programs to support families with a child with Down syndrome and may dispel some of the myths surrounding the impact of intellectual disability on the family.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2012.01561.x