Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study

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.