Voicing the unseen: understanding communication barriers in inherited retinal diseases

PURPOSE: Inherited retinal diseases (IRDs) are invisible disabilities that cause progressive vision loss. Living with an IRD impacts life beyond visual impairment, requiring adaptation to shifting identity and social roles. This study investigated the barriers and facilitators people with IRDs face in communicating about their condition and needs. METHODS: Semi-structured interviews were undertaken with 16 individuals with IRDs (aged 20-69 years) and 5 family members. Interviews were transcribed and analysed using thematic analysis. RESULTS: Five key themes were identified describing communication challenges across various relationships and social contexts: (1) clinician communication, highlighting the impact of interactions with healthcare professionals; (2) intrinsic barriers from participants' own feelings coming to terms with their diagnosis; (3) family communication, influenced by family dynamics and their personal experience with the condition; (4) comprehension gap, capturing others' misconceptions of vision loss as a spectrum and an invisible disability; and (5) disclosing vision loss, describing decisions about when and how to share an IRD diagnosis with others. CONCLUSIONS: Support for individuals with vision loss requires coordinated action across multiple networks, including clinician education, accessible mental health services for individuals and carers, and efforts to improve societal understanding of the experience of vision loss.