Purpose and Background: When a child is diagnosed with epilepsy, not only has the child’s life been disrupted but also the family’s sense of normalcy. Although there is considerable literature discussing family concerns and social support issues in families with chronically ill children, a major gap lies in the exploration of how the specifics of childhood epilepsy affect parents and family operations. The purpose of this study was to identify psychosocial care needs of parents of children with epilepsy. Methods: Utilizing the Family Systems Nursing theory as a framework, this correlation study examined the relationships among social and community support, family needs, family empowerment, and family quality of life in 29 primary caregivers of a child with epilepsy. Results: These families felt highly supported; they had low needs and high perceptions of empowerment. There was a negative association between social supports and the total family needs survey scale and the subscales of financial support, help regarding explaining to others, and professional support. There was no association between family empowerment or quality of life with parental perceptions of social support. Conclusion: In general, as parental perceptions of family needs increased, perceptions of familial social supports decreased. Further research is recommended to investigate varying socioeconomic status effects in families with children with pediatric epilepsy.
Questions or comments about this article may be directed to Kim A. Decker, PhD RN CNS, at firstname.lastname@example.org. She is a Clinical Assistant Professor, Indiana University School of Nursing, Bloomington, IN.
Wendy R. Miller, PhD RN CCRN, is Assistant Professor, Indiana University School of Nursing, Bloomington, IN.
Janice M. Buelow, PhD RN FAAN, is Professor, Indiana University School of Nursing, Indianapolis, IN.
The authors declare no conflicts of interest.