Junko Okuyama, Shunichi Funakoshi, Shintaro Amae, Takamichi Kamiyama, Takashi Ueno and Yutaka Hayashi
Objective: To study the coping pattern of a mother of a child with multiple congenital anomalies (MCAs) based on interview data.
Methods: The mother of a child born at Tohoku University Hospital, Japan, who was diagnosed with MCAs at 3 days of age and subsequently underwent surgery at 7 months, was asked to be interviewed. She answered semi structured interviews at the hospital when the child was two years old and again when the child was five years old. Psychological assessment with the State-Trait Anxiety Inventory (STAI) and the Self-rating Depression Scale (SDS) was conducted before each interview.
Results: Psychological assessment showed that the mother had high levels of anxiety and depression when the child was two and when the child was five years old. The interview data showed that when the mother first learned that her baby had MCAs, her initial reaction was (1) shock. She then felt (2) Absent-minded. (3) Responsibility to take care of her child. (4) Depression, (5) Defense against acceptance of child’s disease as it is. The mother had this sequence of thoughts and emotions between the times of diagnosis of MCAs up through the time of surgery. In the first stage of coping, the mother showed defense against learning as much as possible about her child’s disease and MCAs. In the second stage of coping, the mother reported (when the child was five years old) that she felt that she had some control over her child’s situation. The mother started to accept her child’s disease as she as possible and learned what would be happened to her child.
Conclusion: The mother of the child with MCAs was in a severe psychological condition over at least five years since diagnosis. In order to alleviate the psychological stress on mothers of a child with MCAs or other congenital disease, it is useful to educate the mother so that she can understand her child’s disease. However, it is difficult for parents without medical knowledge to understand a complicated disease such as MCAs. Providers need more training to educate parents with MCAs.
