'They’re creepy creatures with human-like features’:
\nchildren’s experiences of visual hallucinations in
\nCharles Bonnet syndrome—a qualitative study

Objective: Charles Bonnet syndrome (CBS) refers to
\nthe presence of visual hallucinations occurring secondary
\nto visual impairment. The aim of this study was to
\nunderstand the phenomenology of CBS in children
\nand assess the emotional impact and support needs of
\npatients and their families.
\nDesign: Semistructured qualitative interview study.
\nSetting: UK.
\nParticipants: Children (7–15 years) with an inherited
\nretinal disease living with CBS and their parents.
\nResults 10 participants were recruited from six
\nfamilies (dyadic interviews n=4; parent-only interviews
\nn=2). Thematic analysis identified five superordinate
\nthemes relating to experiences of CBS: (1) diagnosis
\njourney, (2) hallucination phenomenology, (3) impact
\nof hallucinations, (4) understanding and managing
\nhallucinations and (5) experiences of support. The impact
\nof CBS was broad and heterogenous, causing significant
\ndisruption to patients’ daily life. Limited awareness
\nled to parents expressing largely negative healthcare
\nexperiences. Overall, the extent of knowledge and
\nunderstanding of CBS was an indicator of successful selfmanagement of the condition.
\nConclusions: The journey towards understanding
\nand managing CBS for both parents and children is
\nchallenging. Although coping strategies can lead to
\nimproved adjustment, visual hallucinations compounded
\nthe difficulty of living with a chronic visual impairment.
\nHealthcare providers have an integral role in ensuring
\npatients and families are effectively supported to allay
\nfears and promote psychological well-being.