Parents of Preterm Infants Have Limited Knowledge of ROP
American Journal of Ophthalmology, July 2018
Lack of parental knowledge about retinopathy of prematurity (ROP) may lead to delays in screening and treatment of infants. Eneriz-Wiemer et al. assessed parents’ knowledge and education relating to ROP and found that many parents had not been aware of the condition, particularly those with limited English proficiency and low health literacy.
The authors’ cross-sectional study included English-or Spanish-speaking parents of very low-birth-weight infants (<1,500 g). The infants were treated at 1 of 4 high-acuity neonatal intensive care units from September 2013 to April 2015. Parents were asked if they knew about ROP and, if so, how they had learned about the disease. They also were asked about their experiences in obtaining outpatient ROP follow-up care for their infants. Multivariate analysis was used to determine whether parents’ knowledge of ROP correlated with factors such as English proficiency, health literacy, education modality (verbal, written, online, video), and the occurrence (or not) of a hospital transfer before discharge.
Of the 194 parents who consented to participate, 131 (68%) completed the survey. Overall, 18% had limited English proficiency as well as low health literacy; 26% had limited English proficiency only; and 37% had low health literacy only. Among respondents, 17% did not know that ROP is an eye disease, and 38% did not know that major risk factors are prematurity and very low birth weight. Sixty-two percent received verbal information about ROP, and 56% received written information. Few parents used online resources (12%) or videos (3%). Half of the parents reported that they received information about their infant’s retinopathy status at discharge. Limited English proficiency (vs. proficiency) and low health literacy (vs. higher literacy) correlated with less knowledge of ROP. No particular modality of education was associated with greater knowledge of ROP.
This study demonstrates that many parents lack knowledge of ROP and thus are unaware of the risks and consequences of this disease. Popular passive learning tools such as verbal or written information may not be effective for people with language or health literacy barriers; however, active learning techniques that employ visual imagery, video, or interactive web-based applications may be suitable. Future research should include active learning methods and address best practices for teaching parents about ROP.
The original article can be found here.