The experiences of visually impaired military veterans with Charles Bonnet syndrome

Abstract

Background: Charles Bonnet syndrome (CBS) refers to the experience of visual hallucinations occurring secondary to sight loss. Although there is an increasing amount of research on this phenomenon, CBS remains a lesser-known outcome of visual impairment, with limited research into the impact on the patient. Objectives: To explore the experiences and opinions of visually impaired military veterans with CBS regarding the impact of visual hallucinations. Design: Semi-structured qualitative interviews. Methods: Forty-six telephone interviews were conducted with members of Blind Veterans UK, a charity for visually impaired ex-service men and women. One-hundred and fifteen individuals at the charity with CBS were identified and invited to a semi-structured interview (participation rate – 40%). Qualitative data was transcribed and analysed using thematic analysis. Results: Four overarching themes were identified: (1) impact of CBS (2) understanding and management of CBS (3) awareness of CBS (4) recommendations. Negative impact of CBS included feelings of fear, annoyance and disruptions to daily life and quality of life. Negative appraisal of CBS was not necessarily related to negative hallucination content. Participants expressed the value of increased awareness amongst patients and health care professionals. Knowledge and understanding of CBS provided reassurance and was considered an effective strategy to mitigate the negative impact of the condition. Conclusion: Regardless of hallucination content, CBS has a substantial impact on the lives of people with visual impairment. Increased awareness and information can help to support individuals to manage their CBS more effectively. However, the findings from this study cannot be generalized to people without a military background so further research is required to understand and optimize support for military veterans and civilians with CBS.