Mothers and fathers of young Dutch adolescents with Down syndrome: Health related quality of life and family functioning.
Parents of young teens with Down syndrome feel family strain yet keep stable life quality, so target family routines, not just the child.
01Research in Context
What this study did
Marchal et al. (2016) asked Dutch moms and dads of 11- to 13-year-olds with Down syndrome how they felt.
They used short surveys on health-related quality of life and family functioning.
The same parents answered twice, one year apart, to see if things changed.
What they found
Parents said family life was often strained.
Yet their own quality-of-life scores stayed steady and fairly high.
Nothing moved up or down over the year.
How this fits with other research
Demello et al. (1992) saw the same thing in American dads: more coping efforts but still positive adaptation.
Fisch (1998) looked only at Greek moms and found big stress from time demands.
That sounds worse, but the studies asked different questions. Pieter asked about overall life quality; S asked about daily hassles.
Cramm et al. (2009) add another twist. Once mom’s age and child skills are counted, the so-called Down syndrome advantage fades.
So steady quality of life does not mean zero problems; it means parents adjust without crashing.
Why it matters
You can reassure families that a Down syndrome diagnosis does not doom parent well-being.
Still, build in family-functioning supports—respite, sibling groups, couple nights—because strain is real.
Track both daily hassles and overall life satisfaction to see the full picture.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add one quick family-functioning check-in question to your parent greeting: “What was hardest about family life this week?”
02At a glance
03Original abstract
BACKGROUND: Like any child, children with Down syndrome (DS) affect the lives of their families. Most studies focus on the adaptation of parents and families of young children with DS, while relatively few studies include the perspective of fathers. AIMS: To determine 1) whether mothers and fathers of 11 to 13-year-olds with DS differ from reference parents in health related quality of life (HRQoL) and family functioning, and 2) whether HRQoL in parents of children with DS changes over time, from when the child was 6-8 years old to when the child was 11-13 years old. METHODS: 80 mothers and 44 fathers completed HRQoL and family functioning questionnaires. 58 parents (53 mothers) had completed the HRQoL-questionnaire in a previous study. RESULTS: Mothers differed from reference mothers in one HRQoL-domain (Sexuality), while fathers' HRQoL did not significantly differ from reference fathers. Both mothers and fathers scored in the (sub)clinical range more frequently than reference parents in Total family functioning, and in the domains Partner relation and Social network. Furthermore, fathers scored in the (sub)clinical range more frequently than reference parents in Responsiveness and Organization. HRQoL showed no significant change over time. CONCLUSIONS AND IMPLICATIONS: Our findings indicate frequent family functioning problems but few HRQoL problems in parents and families of children with DS. In offering care, a family based approach with special attention for partner relation and social functioning is needed.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.09.014