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Abstract
Objective: Children with moderate to severe NF1 often experience significant pain and functional limitations. Family functioning and coping have been explored in other pediatric populations in relation to illness severity and psychosocial outcomes in other chronic illness populations. However, there has been little research on either family functioning or types of family coping strategies in NF1; it is important to understand how children with NF1 may be similar or different than other pediatric populations. The current study explores these relationships.
Methods: Data was drawn from a longitudinal NF1 natural history study at the National Cancer Institute. Parents of children ages 6-18 years (mean = 12.3 years) with NF1 and PNs completed the BASC-2, FAD, and F-COPES during a comprehensive psychological assessment at an outpatient visit. Nurse practitioners completed a rating scale of both visibility and severity.
Results: Parents reported relatively healthy family functioning (FAD: M =1.58, SD=0.46) and higher rates of coping than other pediatric samples. Internalizing symptoms were slightly but not clinically elevated. Children with greater disease severity had higher internalizing symptoms (r =0.28, p<.05). Families using more reframing coping had healthier family functioning (r=-0.51, p<.0001). Healthier family functioning was related to fewer child depressive symptoms (r=0.29, p<.05). No mediation analyses were significant. Reframing coping moderated the relationship between severity and child depressive symptoms. Family functioning also moderated the relationship between symptom visibility and internalizing.
Conclusions: The current sample of children with NF1 reflects primarily healthy functioning families who utilize more coping strategies than other pediatric samples. Internalizing behavior rates were similar to other samples and were higher in children with more severe NF symptoms. Healthier functioning families used more reframing and had children with less depression. Reframing strategies provided a buffer against internalizing symptoms. Family functioning appears to play an important role in protecting against internalizing symptoms. Children with more outwardly noticeable NF1 traits had more internalizing difficulties among families with less healthy functioning. Family functioning is important to assess in NF1 and provides support for interventions to improve family functioning and thus child outcomes.
