We have Neglected “Ourselves”; A Qualitative Study on Iranian Parents of Children with Aphakia

BACKGROUND: Contact lenses play a substantial role in the management of childhood aphakia. However, the use and care of the lenses can be challenging. Despite its prevalence, the phenomenon of living with children with aphakia is not explained in Iran yet. The aim of this study was to illuminate the lived experience of the parents of children with aphakia. MATERIALS AND METHODS: This hermeneutic phenomenological study was conducted on the parents who have been referred to Farabi Eye Hospital of Tehran, Iran in 2019, whose children were diagnosed with aphakia, and the condition was corrected with contact lenses. Qualitative semi-structured interviews were conducted with 20 parents of children with congenital cataract. Analysis was based on the framework of Diekelmann enabled data interpretation and elaboration of shared themes. RESULTS: The 20 parents involved in the study consisted of 12 women and 8 men. The participant’s experiences were classified in 4 categories: Self-Ignorance, Troubled mind, Self-Regulation, and Coping with the problem while hoping for the future. CONCLUSIONS: “Self-Ignorance” and “Troubled Mind” indicates that because of the risk of burnout in the long-term process of treatment, the psychological support of parents is necessary. Psychological support will continue until the parents acquire the ability of self-regulation. Giving a realistic hope to families is a core element in psychological support.