Abstract
OBJECTIVE: Charles Bonnet syndrome (CBS) refers to the presence of visual hallucinations occurring secondary to visual impairment. The aim of this study was to understand the phenomenology of CBS in children and assess the emotional impact and support needs of patients and their families. DESIGN: Semistructured qualitative interview study. SETTING: UK. PARTICIPANTS: Children (7-15 years) with an inherited retinal disease living with CBS and their parents. RESULTS: 10 participants were recruited from six families (dyadic interviews n=4; parent-only interviews n=2). Thematic analysis identified five superordinate themes relating to experiences of CBS: (1) diagnosis journey, (2) hallucination phenomenology, (3) impact of hallucinations, (4) understanding and managing hallucinations and (5) experiences of support. The impact of CBS was broad and heterogenous, causing significant disruption to patients' daily life. Limited awareness led to parents expressing largely negative healthcare experiences. Overall, the extent of knowledge and understanding of CBS was an indicator of successful self-management of the condition. CONCLUSIONS: The journey towards understanding and managing CBS for both parents and children is challenging. Although coping strategies can lead to improved adjustment, visual hallucinations compounded the difficulty of living with a chronic visual impairment. Healthcare providers have an integral role in ensuring patients and families are effectively supported to allay fears and promote psychological well-being.