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29
th
CONGRESS OF THE ESPU
08:52–08:55
S21-10 (PP)
WHAT PARENTS OF CHILDREN WITH SPINA BIFIDA NEED :
A MIXED METHODS STUDY
Eun Kyoung CHOI
1
, Mina JANG
2
, Yoonhye JI
3
, Yong Seung LEE
4
, Sang Woon
KIM
4
and Sang Won HAN
4
1) Yonsei Univeristy, College of Nursing AND Mo-Im Kim Nursing Research Institute, Seoul, REPUBLIC OF KOREA
- 2) Yonsei University Graduate School, Department of Nursing, Seoul, REPUBLIC OF KOREA - 3) Severance
Children's Hospital, Department of Pediatric Urology, Seoul, REPUBLIC OF KOREA - 4) Yonsei University College
of Medicine, Department of Urology and Urological Science Institute, Seoul, REPUBLIC OF KOREA
PURPOSE
The aim of this study was to determine the needs of children with spina bifida and their fami-
lies from the perspectives of parents, and to help guide the development of health care service
recommendations.
MATERIAL AND METHODS
This study used an explanatory sequential mixed methods design. In the first phase, 161 parents of
children under 18 with spina bifida completed a needs assessment questionnaire from December
2016 to February 2017. The second phase consisted of focus group interviews with a total of
15 mothers categorized into 3 groups based on their children's developmental stages. In the third
phase, the quantitative and qualitative results were interpreted to develop overall themes.
RESULTS
In the quantitative evaluation, parents identified information as their greatest need, followed by
services and obstacles to care. In particular, on the information scale over 90 % of parents wanted
to know how the condition affects their children's physical and emotional growth and development.
The qualitative results identified different needs according to children's developmental stages.
Furthermore, additional needs were revealed under common themes: an improved bladder/bowel
disability awareness program for teachers, peers, the public, and even health care providers; and
a welfare policy for people with special conditions including educational support, convenient school
and public facilities for bladder and bowel management, and a partnership with professionals.
Mixed-methods analysis revealed that parents need development- and disease-specific informa-
tion, services, and policies.
CONCLUSIONS
The qualitative findings supported the quantitative findings regarding parental needs and expanded
them to include specific services and policies.
08:55–09:10
Discussion