“Everything seems to be the right eye in our family”: intergenerational family living with facial eye disfigurement: an interpretative phenomenological analysis

This paper presents the lived experience of an intergenerational family, spanning three generations living with Facial Eye Disfigurement (FED). Living with vision loss and FED is estimated to affect nearly 8 billion people worldwide. Inadequate attention is paid to the impact of Living with FED (LwFED) on the lives of individuals. This research offers a deep dive into the lived experiences of one family LwFED. This family comprises a grandfather (deceased), son, wife, and child, all of whom have lived or live with FED. In this Interpretive Phenomenological Analysis (IPA) study three interviewees are deemed the experts. Data were collected using in-depth semi-structured interviews conducted by Zali who lives with FED. Our findings speak of childhood and subsequent issues living with FED (LwFED), family experiences of living with family members with FED while simultaneously LwFED themselves, shared stories and role modelling. We discuss LwFED healthily through the creation of a safe family space through acceptance, belonging, and support. We introduce and discuss the role of the eyelid, functioning versus non-functioning. We offer insights and understandings of an intergenerational family living with LwFED to advance research and inform practice within diverse fields.