Illness intrusiveness in parents of youth with type 1 diabetes

OBJECTIVE: Type 1 diabetes in youth has a wide-ranging impact on families. This study aimed at a better understanding of experiences and difficulties that parents may encounter in their lives. Parental illness intrusiveness (ie, a parent's perception that the illness of one's child interferes with one's personal life) was prospectively examined in mothers and fathers.

METHODS: Parental dyads (n = 291) completed four annual questionnaires on parental illness intrusiveness, depressive symptoms, and treatment adherence of their child. Youth reported on their treatment adherence.

RESULTS: First, cross-lagged models showed that mothers' illness intrusiveness predicted relative increases in both mothers' and fathers' illness intrusiveness over time. Similar effects were found for fathers. Second, paired-samplest tests revealed higher illness intrusiveness in mothers at baseline. Latent growth curve modeling showed that mothers' illness intrusiveness generally decreased over time, while fathers' illness intrusiveness remained constant. Third, from a person-centered approach, multivariate latent class growth analysis identified three classes of parental couples: one with low and decreasing illness intrusiveness (54%), one with slightly elevated illness intrusiveness that remained stable over time (37%), and one with high illness intrusiveness that decreased in mothers but remained stable in fathers (9%). More parental depressive symptoms were reported in this latter class, while treatment adherence did not differ among the classes.

CONCLUSIONS: Most parents in this sample reported rather low illness intrusiveness over time, yet some experienced a major impact of the illness. Examining parental illness intrusiveness may provide a better understanding of the specific challenges parents are confronted with.