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

ABSTRACT

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.