Jones, Lee, Ditzel-Finn, Lara, McDonald, Leanne ORCID: https://orcid.org/0000-0001-8769-3214 and Moosajee, Mariya (2025) 'They’re creepy creatures with human-like features’: children’s experiences of visual hallucinations in Charles Bonnet syndrome—a qualitative study. Archives of Disease in Childhood.

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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 selfmanagement 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.

Item Type:	Article
Identifier:	10.1136/archdischild-2024-327811
Subjects:	Medicine and health > Child health Psychology
Depositing User:	Leanne McDonald
Date Deposited:	14 Jan 2025 08:31
Last Modified:	14 Jan 2025 08:45
URI:	https://repository.uwl.ac.uk/id/eprint/13085

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