Purpose
The purpose of the study was to identify and describe the caregiving difficulties that mothers of children with spina bifida experience from their own perspectives.
Methods
A qualitative descriptive study was designed. Data were collected from five mini-focus group interviews and four individual interviews using open-ended questions. Nineteen mothers of children with mild spina bifida participated in the study during 2014-2015. Data were analyzed using qualitative content analysis to identify major difficulties perceived by the mothers.
Results
Five domains were identified with 12 subdomains. “Daily routine continence management” describes difficulties arising in bladder and bowel management for the child with spina bifida. “Management of school life of child” deals with difficulties in relation to the school facilities, such as the toilets, as well as teachers and friends. “Relationship with family and neighbors” illustrates problems in relations with their spouse, normal children, relatives and neighbors. “Maintaining physical and psychological health” includes physical and psychological problems of the mothers. “Finance” describes economic burden that the mothers face in the management of child’s illness.
Conclusion
The findings from this study provide insight into the practical issues related to the management of chronic conditions of children with spina bifida from the mothers’ perspectives.

Citations

• Factors associated with transition readiness among adolescents and young adults with spina bifida in South Korea
  Eun Kyoung Choi, Yoonhye Ji, Eunyoung Jung, Eunjeong Bae
  Journal of Child Health Care.2024;[Epub]     CrossRef
• Illness Experiences of Adults with Spina Bifida: Protecting the Whole Self
  Seoung-Wha Lim, Myungsun Yi
  Asian Nursing Research.2021; 15(1): 67.     CrossRef