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Background: Illness uncertainty in parents of children with congenital adrenal hyperplasia (CAH) refers to parents' inability to create meaning in events related to their children having CAH. This may influence their role in caring for children with CAH. Objective: The study aimed to determine factors associated with illness uncertainty experienced by parents of children with CAH in a developing country. Methods: A cross-sectional study was conducted on 80 parents (43 mothers and 37 fathers) of children with CAH, selected using consecutive sampling methods. The Parent's Perception of Uncertainty Scale (PPUS) was used to measure the illness uncertainty levels. Data were collected from March 2020 to October 2020. Independent t-test and chi-square test were used to determine factors (parent's gender, age, educational level, monthly household income, number of children with CAH, history of child death due to CAH, child's age when first diagnosed with CAH, duration of therapy, gender change, type of CAH (salt wasting/SW or simple virilizing/SV), current gender, and genitoplasty) influencing illness uncertainty in parents. Results: The mean scores of PPUS were 42.3 ± 12.91, and the majority of parents had a low PPUS score (49; 61%). Parents of children with SW-CAH showed higher uncertainty (44.2 ± 12.77) than those with SV-CAH (32.6 ± 8.86; p = 0.003). Parents who lost their children due to CAH were more likely to report a moderate illness uncertainty than parents who never experienced child mortality due to CAH (χ2(1, 80) = 4.893; p = 0.027). Conclusion: The factors significantly affecting uncertainty in parents of children with CAH determined in this study might help healthcare professionals, including nurses, to play a pivotal role in giving pertinent information regarding their children's health, disease, and therapy to help manage parental uncertainty.
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INTRODUCTION: Congenital heart defect (CHD) is a significant cause of neonatal and infant mortality. We aimed to evaluate the incidence and pregnancy outcome of foetuses diagnosed with chromosomally normal CHD in KK Women's and Children's Hospital (KKH), Singapore, in 2008-2009. METHODS: We reviewed the medical records of pregnant women who underwent first trimester screening and were diagnosed with foetal CHD at KKH. Additional information was obtained from the Birth Defect Registry for the period 2008-2009. Foetuses with abnormal karyotype or minor lesions not expected to be detected by ultrasonography were excluded. RESULTS: 38 out of 9,834 euploid foetuses were diagnosed with CHD. Major defects were found in 26 (68%) foetuses, while 12 (32%) had minor CHDs. Tetralogy of Fallot, atrioventricular septal defect, hypoplastic left heart syndrome, transposition of the great arteries and ventricular septal defect constituted the five most common major CHDs observed. In 14 (54%) foetuses with prenatally diagnosed major CHD, the outcome was termination of pregnancy, while 12 (46%) pregnancies continued to birth. Among the live-born babies with major CHD, eight (67%) underwent surgery. CONCLUSION: The incidence of non-chromosomal major CHD in Singapore was about 2.6 per 1,000 foetuses. A detection rate of 88.5% was achieved for major CHD during the study period. Advances in CHD management have thrown up new challenges for clinicians in the area of diagnosis, treatment and ethics. Therefore, it may be beneficial to constitute a regulatory entity as a fundamental guide to improve the future management of foetuses diagnosed with CHD.
