혈우아동과 일반아동 어머니의 양육스트레스, 죄책감, 양육태도 및 부모역할만족도 비교1) 경희대학교 간호과학대학 교수, 2) 제주한라대학 전임강사 3) 경희대학교 간호과학대학 연구교수 투고일: 2008. 8. 20 1차심사완료일: 2008. 10. 10 2차심사완료일: 2008. 11. 3 최종심사완료일: 2008. 12. 4 • Address reprint requests to : Ji, Eun-Sun(Corresponding Author) College of Nursing Science, Kyung Hee University 1, Hoegi-dong, Dongdaemun-gu, Seoul 130-701 Tel: 82-16-693-1154 Abstract Purpose: Although Hemophilia is a relatively rare hereditary disease, and is treatable with blood products, the parenting stress and guilt of hemophilic patients and their mothers are always high. This study was done to assess the extent of parenting stress, guilt, parenting attitude and parenting satisfaction of mothers with a hemophilic child. Method: The participants in this study were 119 mothers with a hemophilic child who were registered members of the Korea Hemophilia Foundation, and 287 mothers with a healthy child. In order to measure the dimensions related to parenting stress, guilt, parenting attitude and parenting satisfaction, the Questionnaire on Parenting Stress Index, Maternal Guilt Scale, Parenting Attitude Scale & Parenting Satisfaction Scale were administered. We analysed the differences between mothers with a hemophilic child and a healthy child in the questionnaire scores using the SPSS program. Result: Parenting stress and guilt of mothers with a hemophilic child were higher than with a healthy child. Parenting attitude and parenting satisfaction of mothers with a hemophilic child were lower than with a healthy child. Conclusion:The results may help medical professionals understand mothers with a hemophilic child and give basic assistance to develop a nursing intervention by exploring possible ways to alleviate such parenting stress and guilt.

The results of this study indicate that young adults with hemophilia strive for living a life as a normal person. But there is a question whether it is good for their ultimate quality of life. The results indicate that our society needs to be more tolerant to differences that hemophiliacs have.