Journal of Japanese Society of Genetic Nursing
Online ISSN : 2436-9098
Print ISSN : 1881-3267
ISSN-L : 1881-3267
Volume 19, Issue 2
Displaying 1-5 of 5 articles from this issue
  • Satoko Nakagomi, Chiaki Kitamura, Simon J. H. Elderton, Masato Nagayos ...
    Article type: Original Paper
    2021 Volume 19 Issue 2 Pages 30-42
    Published: March 31, 2021
    Released on J-STAGE: February 23, 2024

     This study aims to examine nursing care based on care needs after early diagnosis, through clarifying the perceptions of parents raising children with 22q11.2 deletion syndrome (22q11.2DS) regarding medical support after definitive diagnosis. The subjects were 61 individuals consisting of children and adults diagnosed with 22q11.2DS.

     Data was collected from a self-administered questionnaire prepared by the researchers. The first part of the questionnaire collected demographic data of subjects. The next 35 items of the questionnaire explored the respondent’s perceptions regarding medical support, including their feelings upon being informed about the syndrome at diagnosis, details of the medical support received so far, and the perceived challenges for the future. Some of these 35 items required free descriptive responses and others a 5 step Likert scale was used (Strongly disagree, disagree, neither agree nor disagree, agree, strongly agree).

     The average diagnosis time for subjects in this study was 1 year and 7 months (19±60months), and early diagnosis was viewed positively accompanied by hopes for better development through taking pre-emptive action. However, respondents felt that there is insufficient information before starting school regarding support available while attending school, and that there was no place that provides unified, comprehensive care.

      A place where consultation can be provided for symptom management, developmental support, remedial educational support and advice on reproductive issues, is required to support the care needs of children with 22q11.2DS.

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  • Akiko Tsubota, Akemi Isoyama
    2021 Volume 19 Issue 2 Pages 43-53
    Published: March 31, 2021
    Released on J-STAGE: February 23, 2024

    Purpose: To clarify the thoughts of parents of a first child with a chromosomal abnormality when considering prenatal testing during pregnancy of a second child

    Method: We conducted interviews with 11 parents of a first child with a chromosomal abnormality who subsequently had their second child. The results were analyzed with qualitative descriptive analysis.

    Results: Nine categories were extracted after analyzing the parents’ thoughts on prenatal testing. Parents of a first child with a chromosomal abnormality who subsequently had a second child felt that “their values had changed since before the birth of their first child.” During the pregnancy with the second child, the couple had “anxiety about the second child having disabilities and a desire to find out information about the fetus,”and “discussing, as a couple, the prospect of life if the second child also had a disability” while feeling “conflicted about prenatal testing.” The parents were also deciding whether or not to have prenatal testing while feeling that “their decision-making was influenced by the involvement of doctors.” The parents expressed that all life is important and that their first child is “The worries and joys of raising a child are no different from those of raising a normal child”. “their child is adorable with or without a disability,” but they also felt “the realistic burden of raising a child with a disability” and “struggled with a sense of inferiority for having a child with a disability” due to society’s negative view of disabilities.

    Discussion: Parents having a second child when the first child had a chromosomal abnormality felt anxious about the second child possibly also having disabilities and wanted to obtain information about the fetus. However, they also expressed feeling conflicted about using prenatal testing to determine whether the child would live, and having the test themselves. It was thought that the parents felt truly conflicted because they realized that their child was adorable even with a disability. They also struggled with a sense of inferiority for having a child with a disability due to negative views of disabilities in society, which was further affected by the availability of prenatal testing.

     It is essential to understand the position of parents of children with disabilities and to support their decision-making about prenatal testing, including their family members while remaining fully cognizant of their anxiety.

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  • Hiroko Asano, Satoko Nakagomi, Chieko Kukinaka, Noriko Sasaki, Chikaho ...
    2021 Volume 19 Issue 2 Pages 54-65
    Published: March 31, 2021
    Released on J-STAGE: February 23, 2024

    Purpose: The purpose of this study is to design a perinatal genetic nursing education program using the ARCS model as a support tool for midwifery care in the perinatal period and to evaluate the learning motivation of nurses participating in the program.

    Method: A perinatal genetic nursing education program on maternal nursing was provided to 15 Nurse Specialists in women’s health with the aim of developing their nursing skills regarding the following six tasks: 1) learning about the basics of genetic testing and genetic disorders, 2) providing consultations about fetal health at an early stage of pregnancy in antenatal care settings, 3) providing nursing for mothers diagnosed with a fetal abnormality, 4) providing support for rearing children with a congenital anomaly, 5) providing grief care for mothers dealing with miscarriage or stillbirth, and 6) providing support for parents feeling anxious about the next pregnancy. The education program was developed using the ARCS model and 1) prior learning about the tasks, 2) group training, and 3) group meeting one month after the training and individual reflection three months after the training were conducted. The teaching method used in the program, the learning materials, and the participants’ understanding after the program were assessed with the Japanese Version of the CIS Scale (Kawakami and Kogo, 2013), the IMMS scale (Keller, 2009/Suzuki, 2010; Japanese translated version), and the basic knowledge test, respectively. To assess what the nurses had learned, an original questionnaire about the learning progress in the six tasks was created and implemented. The questionnaire survey was conducted five times: before, at the start and end of the program, and 1 month and 3 months after the program.

    Results: It was shown that the teaching method and education materials of the program attracted “interest” from the participants and allowed them to recognize a “relevance” between learning and nursing practice. In addition, the participants felt “satisfied” with their review of nursing practice and their own learning progress after participating in the program. They, however, had low “confidence” about the clinical practice and learning after the program and had a low level of “satisfaction” about the volume of learning and assignments. Therefore, adjustments for the volume of learning and assignments of the program are considered necessary. Moreover, it appears that at the beginning of clinical nursing practice, it is necessary to support the planning of nursing according to the condition of the target and to offer opportunities to experience successful nursing practice.

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