Parents' Needs Concerning Their Children with Spina Bifida in South Korea: A Mixed Method Study

Abstract

PURPOSE: This study aimed to determine the needs of children with spina bifida (SB) and their families from their parents' perspective in South Korea.

DESIGN AND METHODS: This was a convergent mixed methods study design. From December 2016 to February 2017, parents of children with SB participated in a quantitative prospective observational study (N = 164), using the Family Needs Assessment Tool. Qualitative focus group interviews were conducted, according to three developmental stages (N = 15) in May 2017. Integrated analyses were conducted jointly by merging the quantitative and qualitative findings.

RESULTS: Quantitative findings revealed very high parental needs in three assessment domains: information, healthcare service/program, and difficulties related to healthcare. Ten qualitative themes were identified in these 3 domains. Quantitative and qualitative methods enabled more extensive findings. Comparison and merging of the data resulted in six confirmed and four expanded findings. In particular, we identified the need for a child-focused self-management program, a bladder/bowel disability awareness program, welfare policies, and partnership with healthcare professionals as the expanded findings.

CONCLUSION: This mixed method study provided empirical evidence to help better understand the complex needs of parents of children with SB.

PRACTICE IMPLICATIONS: When developing and providing healthcare education and service to families of children with SB, especially, in countries where SB educational programs have not been established yet, it is important to develop them based on their own needs, which may vary based on the child's developmental stage and socio-cultural characteristics.