Predictors of Support Service Interest and Participation by Families of Children with Spina Bifida

Abstract

Nurses who work with families of children with spina bifida know that parents need psychosocial support, but may not know whom to target with limited support service resources. The purpose of this study was to identify predictors of both support service interest and participation. The caretakers of 60 children with spina bifida (myelomeningocele), 1 to 17 years of age, attending an interdisciplinary outpatient spina bifida clinic, were interviewed. Potential predictors of service interest and participation included socioeconomic status (SES), social support, parent demographics, and severity of the child's impairment. Service interest was measured using a survey that quantified the amount of interest in supportive and recreational services. Families were then categorized as participants versus nonparticipants based on whether they actually requested and utilized available support services. Parents whose children had more medical problems reported higher interest in both recreational and supportive parent-to-parent services. Although earlier research suggests that SES and distance from home affect stress and should be related to interest in support services, the correlational results of this study suggested no relationship between these variables and support service interest or participation. Closer examination indicated that there might be a nonlinear relationship, such that middle SES families were more interested than either upper or lower SES families, and were more likely to participate in available programs.