Mothers' experiences of parenting a child with chromosomal structural abnormalities: The journey to acceptance.

PURPOSE: This study aimed to investigate the process mothers go through in coming to terms with raising a child with chromosomal structural abnormalities. METHODS: Sixteen mothers living in Japan were interviewed and a modified grounded theory approach was used for the analysis. RESULTS: A total of 35 concepts, nine subcategories, and six categories were extracted. The six categories were: (a) Concern about abnormalities; (b) A healthy child is considered as a standard; (c) Deepening attachment to the child; (d) Acceptance of the child as s/he is; (e) Changing attitude toward disabilities; (f) Creating a frontier for other mothers. The parenting journey meant that parents did not move in a straightforward way from the beginning of the process to the endpoint but instead moved between "Deepening attachment to the child" and "Acceptance of the child as s/he is" before they moved ahead. CONCLUSION: Having support and meeting peers of mothers with similar issues is essential for mothers to review their perspectives that healthy children are the standard against which to measure their child and to motivate them to raise their children, but it was extremely difficult to have such opportunities due to rarity of the disorder. It is crucial to accumulate more practical information so that mothers can access and use it. Mothers also need support to enhance their self-worth while giving due consideration to the possibility that they may be conscious of being stigmatized. Nurses need to advocate for these children and families to get the appropriate help, understanding and support.

Developing competencies in genetics nursing: Education intervention for perinatal and pediatric nurses.

Nurses need to be appropriately trained in genetics to provide clinical care based on best practice for patients and families. This exploratory study describes an educational intervention using authentic stimulus material centered on a clinical case study of a family with a baby with Down syndrome. Quantitative and qualitative data were collected from a sample of 15 nurses and 27 students from three universities in Japan before and after completing an entry-level workshop on competency-based genetics nursing. Participants reported increased perceived genetics knowledge and clinical confidence. Despite more than 90% of the participants reporting that they understood the underlying genetics knowledge, their confidence and the ethical aspects of genetics nursing had not been promoted after the seminar. In contrast, the reflections, coded into three categories, showed they recognized families' needs for psychological support, family decision making, and protection and privacy and suggested that nurses had undergone a profound shift in understanding about these issues. Although indicating that a single seminar was insufficient, the study findings will be useful to develop educational materials on genetics for both students and nurses.

Experiences regarding maternal age-specific risks and prenatal testing of women of advanced maternal age in Japan.

The number of pregnant women of advanced maternal age has increased worldwide. Women in this group have an increased chance of fetal abnormality. To explore Japanese women's experiences regarding maternal age-specific risks and prenatal testing, we conducted a descriptive qualitative study. Semi-structured interviews were conducted with 16 women aged 35 years or over who had given birth within the previous three months to a healthy, term infant. Thematic analysis of transcribed interview data was performed and three major themes were identified: inadequate understanding of genetic risks; insufficiently informed choice regarding prenatal testing; and need for more information from health professionals. Some participants were not aware of maternal age-specific risks to the fetus. Many took their cues from health professionals and did not raise the topic themselves, but would have considered prenatal testing if made aware of the risks. Nurses, midwives and other health professionals need to adequately inform pregnant women about the genetic risks to the fetus and offer testing at an appropriate stage early in the pregnancy.

Japanese women's attitudes towards routine ultrasound screening during pregnancy.

Because there are few published studies from Eastern countries concerning women's experiences of prenatal ultrasound scans, this study investigated this topic in 238 Japanese women in three different prenatal settings. A cross-sectional questionnaire of 33 items was administered to 261 women at 14-37 weeks gestation with no known obstetrical risk, after their ultrasounds. The main reasons for the ultrasounds were evaluation of fetal growth (100%, n = 238); obstetrical conditions (n = 228, 96%); and fetal abnormalities (91%, n = 217). With increasing maternal age, participants worried more about obstetric problems or fetal abnormalities. Many were interested in fetal viability in early pregnancy, and obstetric problems or fetal abnormality in late pregnancy. While most (n = 234, 98%) looked forward to having scans, the majority (n = 235, 99%) wanted to know if their baby had an anomaly, and 72% (n = 171) worried about the detection of abnormalities. Only 50% (n = 118) had obtained information from their care provider. To assist with women's decision-making, prenatal care providers should provide quality information and understand the factors that influence women's concerns.

Genetic competence of midwives in the UK and Japan.

In the UK and Japan, midwives provide health services for women with concerns about a genetic condition or who are considering antenatal screening. In both countries, competences related to genetic health care have been devised but there is little evidence about midwifery competence in practice. A systematic literature review was undertaken to determine the extent to which midwives are achieving the genetic competences that are prescribed for their practice. English and Japanese literature from January 1999 to March 2009 was retrieved. Original studies or reviews, in which an aspect of midwifery practice was related to genetic competences, were eligible for inclusion. After a critical appraisal, six UK and five Japanese papers were eligible for inclusion. The findings indicated that midwives are not achieving the competences, nor are they confident about their genetics knowledge. Moreover, women are not being supported to make informed decisions regarding antenatal screening. We have confirmed that little research is being undertaken in both countries regarding competency achievement in practice. Changes to midwifery curricula and further continuing education are required to ensure that midwives are able to provide effective care regarding genetics.