'Everywhere I turn, I'm blocked': a qualitative exploration of experiences of Charles Bonnet syndrome and its impact on physical activity and falls.

backgroundCharles Bonnet syndrome (CBS) refers to visual hallucinations that can occur following a decline in vision. Although vision loss increases fall risk and susceptibility to falls-related variables such as activity limitation, the potential contribution of CBS is unclear. The present study adopted a qualitative approach to explore experiences of CBS from different perspectives, including its impact on physical activity and falls.

methodsSemistructured interviews were conducted with 17 older adults living with CBS (mean age = 76 years) and 12 community falls and sight loss professionals. Reflexive thematic analysis guided data analysis.

resultsThemes represent the 'CBS journey' moving from symptom onset to living with CBS. Low CBS awareness, anticipated stigma and professionals' failure to raise CBS had negative psychological impacts. While walking, recognisable images could evoke a behavioural response and delay insight. Falls occurred when CBS distracted attention from actual surroundings, automatic reactions led to a loss of balance, and panoramic hallucinations caused disorientation and obscured real hazards. CBS also contributed to concern about falling. While moving about, precipitating factors for CBS included fluctuations in light level and situational stress. Common relief techniques were least effective for people with intrusive symptoms. Instead, engaging in enjoyable multisensory activities or low to moderate physical activity for health provided relief.

conclusionCBS adds an additional layer of complexity to the aetiology of sight-related falls. To reduce the risk of falls caused by CBS, a multifaceted strategy is indicated that addresses factors at the individual, organisational, educational and health care policy levels.