2021 Volume 19 Issue 2 Pages 30-42
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.
