Distress and everyday problems in Dutch mothers and fathers of young adolescents with Down syndrome.
Fathers of 11-young learners with Down syndrome are more distressed and referral-ready than mothers—screen dads specifically.
01Research in Context
What this study did
Marchal et al. (2017) asked 94 Dutch parents about daily hassles.
Half had 11-young learners with Down syndrome. The rest had typical kids.
Both moms and dads filled out the same short checklist of everyday problems.
What they found
Fathers of kids with Down syndrome said life felt harder. They wanted more professional help than control dads.
Mothers looked almost the same as control moms.
When the researchers compared husbands and wives inside each couple, the differences were tiny.
How this fits with other research
Wetterneck et al. (2006) also saw fathers struggle more than mothers. In that study, autism dads had a harder time reading faces than autism moms. The pattern repeats: dads seem to feel the stress first.
Lovell et al. (2016) looked at siblings instead of parents. Typical brothers and sisters of autistic kids felt more depressed. Together, these papers show the whole family can feel the strain, not just the main caregiver.
Nijs et al. (2016) built a free 21-item parent checklist called CAPES-DD. You can use it to track both child behavior and parent stress in any developmental disability family.
Why it matters
When you screen a Down syndrome family, ask the dad first. He is more likely to say he needs help. Use a quick tool like CAPES-DD to keep tabs on both parents. A simple check-in with fathers could open the door to earlier support for the whole family.
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02At a glance
03Original abstract
BACKGROUND: To provide targeted support to parents of children with DS, knowledge of their distress and everyday problems is crucial. For this purpose, psychosocial screening instruments can be a valuable addition to routine clinical practice. AIMS: To determine differences on a psychosocial screener concerning distress and everyday problems in parents of young adolescents (YAs) with DS versus control parents and in mothers of YAs with DS versus fathers. METHODS AND PROCEDURES: We compared outcomes of the Distress Thermometer for Parents in 76 mothers and 44 fathers of 11-13-year-olds with DS versus 64 mothers and 52 fathers of age-matched children without DS (comparing mothers and fathers separately). Additionally, we compared mothers and fathers within 34 parent couples of YAs with DS. OUTCOMES AND RESULTS: Clinical distress was not more frequent than in control parents. Mothers further did not report more everyday problems and only differed from their controls on one problem domain and some problem items. Fathers, however, reported more problems than their controls across most domains and wished to talk to a professional about their situation more frequently. Outcomes in mothers and fathers within parent couples did not differ significantly. CONCLUSIONS AND IMPLICATIONS: This is one of few studies to report on the use of psychosocial screening instruments in parents of children with DS. Our results suggested that attention for fathers of YAs with DS is required. Psychosocial screening instruments that inquire about specific problems and the wish for referral can play an important role in achieving this.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.05.005