Key result
Parenting a child with Marfan syndrome was not associated with increased clinical distress compared to parenting healthy children (33% vs 42% in mothers; 28% vs 32% in fathers).
Why the study?
In Marfan syndrome, both parent and children are often affected, which may increase distress in parents.
Does parenting a child with Marfan syndrome increase overall distress and everyday problems compared to parenting healthy children?
Cross-Sectional (n=1,201)
Does parenting a child with Marfan syndrome increase overall distress and everyday problems compared to parenting healthy children?
Parents of children with Marfan syndrome do not experience higher levels of clinical distress compared to parents of healthy children, though about one-third still report clinical distress.
Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening-questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0-10; ≥4 denoting "clinical distress") and everyday problems (score 0-36). Data were compared to 1,134 control-group-parents of healthy children. Mothers reported significantly less overall distress (2, 1-4 vs. 3, 1-6; p = .049; r = -.07) and total everyday problems (3, 0-6 vs. 4, 1-8; p = .03; r = -.08) compared to control-group-mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0-4 vs. 3.5, 2-5; p = .039; r = -.17). No significant differences were found between the father-groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control-group-parents. No differences in percentages of clinical distress were reported between mothers and control-group-mothers (33 vs. 42%); fathers and control-group-fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one-third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
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Warnink‐Kavelaars et al. (2020) conducted a cross-sectional in Marfan syndrome (n=1,201). Parenting a child with Marfan syndrome vs. Parenting healthy children was evaluated on Clinical distress in mothers (score ≥4 on the Distress thermometer). Parenting a child with Marfan syndrome was not associated with increased clinical distress compared to parenting healthy children (33% vs 42% in mothers; 28% vs 32% in fathers).
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