Journal of Japanese Society of Genetic Nursing
Online ISSN : 2436-9098
Print ISSN : 1881-3267
ISSN-L : 1881-3267
Volume 16, Issue 1
Displaying 1-2 of 2 articles from this issue
  • Noriko Sasaki, Satoko Nakagomi
    2017 Volume 16 Issue 1 Pages 49-58
    Published: August 31, 2017
    Released on J-STAGE: February 23, 2024
    JOURNAL FREE ACCESS
  • Sachiko HOSOYA
    2017 Volume 16 Issue 1 Pages 59-69
    Published: August 31, 2017
    Released on J-STAGE: February 23, 2024
    JOURNAL FREE ACCESS

    Abstract This study aims at discussing necessary nursing care for marriage and reproduction of people with Thalassemia Major in The Islamic Republic of Iran. There are approximately 25,000 people with Thalassemia Major in Iran. Recent developments of medical treatment and self-care management have enabled patients of Thalassemia Major to have longer life expectancies, better prospects for higher education and professional occupations, and the chance to enjoy a married family life with children. However, having a genetic disease and some chronic symptoms caused by complications, they face difficulties in marriage and reproductive choices.

    The research was conducted in the city of Isfahan, which has the third biggest population in Iran. The research was based on three different methodologies; (1) literature study and field research to understand the context, (2) a questionnaire survey of 51 participants with Thalassemia Major who came to the Thalassemia ward for regular blood transfusion therapy, and (3) participant observation in the Thalassemia ward of a local hospital. The information gathered by literature study, field research, participant observation and free descriptions of the questionnaire survey was analyzed by the ethnographical method, and the data collected by questionnaire was calculated based on descriptive statistics.

    Considering the Iranian context of marriage and reproduction of people with Thalassemia Major and the results of the questionnaire survey of 51 patients in Isfahan, examples of 6 cases were examined, and necessary nursing care was considered, including the following 4 points.

    (1) Supporting patients in order to examine their fertility, and to make their decisions according to the results. (2) Providing information about genetic characteristics of Thalassemia, not only to the patients and their family members but also their future partners and their families. (3) Providing information about symptoms, complications, and treatments, which people with Thalassemia Major may have, to the future partners and their families. (4) Supporting patient’s self-determination by helping them to discuss their fertility problems, genetic characteristics, symptoms, complications, and medical treatments with their own family, or the partner and partner’s family.

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