Energy conversion: A phenomenological study of caregivers’ experiences for caring preschool children with intermittent exotropia

Abstract

Abstract Background Intermittent exotropia is the most common childhood strabismus, typically developing in early childhood. Preschool-aged children often struggle to articulate their symptoms. Caregivers of these children play a vital role in monitoring visual health, interpreting emotions, and making medical decisions. However, there is limited research on the experiences of caregivers, particularly during the preschool years. This study explores the lived experiences, emotions, and disease management strategies of caregivers for preschoolers with intermittent exotropia. Methods A descriptive phenomenological approach was employed for this study. Semi-structured interviews were conducted with 15 caregivers of children aged 5–7 years diagnosed with intermittent exotropia. Participants were selected through purposive sampling from a medical center's ophthalmology clinic in Taiwan, and Giorgi's descriptive phenomenological method was utilized. Results The findings revealed that primary caregivers' experience of caring for preschool children with intermittent exotropia is akin to a process of "energy conversion." In this process, caregivers convert energy in different caring stage to help their children and themselves face adversity and get through this journey. This process encompassed six themes: "Awareness of differences," "Seeking answers," "Struggling with their own emotions," "Prioritizing the child's emotional well-being," "Worries," and "Rising to challenges." Conclusions This qualitative study represents the first of its kind in Asia, shedding light on the experiences of primary caregivers caring for children with intermittent exotropia. Caregivers face numerous challenges in providing care, and their emotions are diverse and complex. The impact on the child's well-being generates worry and fatigue. Nevertheless, over time, caregivers rise to these challenges and assist children in achieving satisfactory adaptation to the disease.