Pediatric Cardiology and Cardiac Surgery
Vol.26 No.4 2010 (290-297)

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Masako Aoki,1) Makoto Nakazawa,2) Chihiro Hinuma,1) Miyuki Sekimori1) and Chieko Kimura3)

1)Tokyo Women’s Medical University School of Nursing, Tokyo, 2)Pediatric and Lifelong Congenital Cardiology Institute, Southern Tohoku General Hospital, Fukushima, and 3)St. Luke’s College of Nursing, Graduate School, Tokyo, Japan


Purpose: The aim of this study is to clarify the difficulties experienced by mothers in understanding the condition of their children with congenital heart disease.
Methods: Eight mothers (age range 20–42 years) whose children had congenital heart disease and experienced surgical treatments early in their lives were enrolled and individually interviewed. Taped and transcribed data from the interviews were analyzed using inductive qualitative methods.
Results: The analyzed interview data revealed that the mothers had significant difficulty originating from the following seven categories; 1) No or limited knowledge at the start, 2) Physical and/or mental unpreparedness to accept their children’s disease, 3) Lack of detailed information materials supporting their understanding, 4) No control cohort to compare their children’s condition for better understanding, 5) Uncertain perspectives felt by the mothers regarding their children’s future, 6) Hesitation in expressing their desire or need to obtain information from medical personnel, and 7) Incomplete understanding resulting from their hesitation.
Conclusion: The difficulties experienced by the mothers originated not only in their physical or mental conditions, but also in the discrepancy between their desire or need and actual knowledge or available information, and in limited understanding of their children’s disease, required medical/surgical treatments or future prognoses. To facilitate their good understanding of their children’s condition through informed consent, the related medical personnel needs to be aware of the following issues: 1) Supporting their knowledge as well as considering their physical and mental conditions, 2) Providing sufficient information resources with supplementary explanations to help their understanding and imaging, 3) Encouraging the mothers in expressing their thoughts or opinions.