Hsing-Yi Yu
Chang Gung University, Taiwan
Title: Parents’ experiences of living with children with intermittent exotropia
Biography
Biography: Hsing-Yi Yu
Abstract
Background: Intermittent exotropia typically occurs during early childhood. Most children undergo corrective surgery before 7 years of age to avoid negative reactions from their classmates. Parents are responsible for maintaining their child’s visual acuity and for making decisions regarding disease treatment. Few studies have addressed the experiences of parents living with children with intermittent exotropia, particularly during early childhood. Purpose: This study examined the experiences of parents living with children with intermittent exotropia in early childhood. Design: A descriptive phenomenological design was adopted for this study. Participants: Fifteen parents of children with intermittent exotropia (age, 5–7 years; agemean, 5.4 years), were recruited by purposive sampling from an ophthalmology clinic at a medical center in North Taiwan. Data were collected through semistructured interviews and analyzed using a descriptive phenomenological method developed by Giorgi. Results: The parents observed the impact of the disease on their child’s life. Uncertainty and worry about the disease caused them to be highly vigilant regarding their child’s eye position and daily life. To assist their children in coping with intermittent exotropia, the parents maintained positive and active coping strategies and assured them that the disease would resolve itself. Four themes were observed: (a) Perceptions: the effect of the disease on the physical, psychological, and social aspects of the child’s life; (b) Uncertainty: inability to perceive and comprehend the world from the child’s perspective; (c) Considerable worry: insufficient information on the disease, concerns regarding the child’s future visual acuity, negative reactions by others, concerns regarding surgical outcomes, the child’s safety when engaging in daily activities; (d) Active and positive behaviors: reassurance and reminders, preventative strategies for developing children’s positive social relationships, the construction of the child’s and parents’ psychological self, and active treatment. Conclusions: Parents of children with intermittent exotropia must learn about their child’s disease, attempt to imagine and understand the world from their child’s perspective, and develop positive strategies for assisting their child in coping with the disease. The findings of this study elucidate the experiences of parents who have children with intermittent exotropia and provide valuable insights into and directions for the clinical care of children with intermittent exotropia.