The impact of educational tools on hallucinations in Charles Bonnet Syndrome

Brief Lay background

Charles Bonnet syndrome (CBS) refers to visual hallucinations experienced by up to a third of people with vision loss. That means around 600,000 people in UK live with the hallucinations which occur in CBS. In addition, one third of those with hallucinations suffer ‘negative outcome CBS’, where hallucinations impact negatively on their lives, causing stress, distress and reduced quality of life.

What problem/knowledge gap does it help address

Many people with CBS are reluctant to discuss their hallucinations, with research showing only 9-15% of them inform medical professionals due to concerns that they may be linked to mental health problems. When hallucinations are discussed with care providers, people often encounter a lack of understanding about CBS and feel unsupported.

Coupling the limited evidence to support the effectiveness of existing self-management strategies with the accessibility issues of current treatments (often listed on leaflets or websites), demonstrates an unmet need for those living with CBS.

Therefore, it is important to find better ways to communicate accessible high-quality management strategies and support guidance to all those with CBS to manage hallucinations and improve quality of life.  

Aim of the project

1. To determine the effectiveness of interacting with hallucinations (e.g. waving/speaking to them).
2. To investigate change in quality of life when people with CBS interrupt hallucinations.
3. To identify whether having access to an informative podcast improves quality of life in people with CBS. 

Key procedures/objectives

1. 100 participants who have already completed a screening questionnaire will be invited to participate.
2. Podcasts shared with participants. All will receive the first – a CBS discussion between experts and patients. Half will receive a podcast with disruption-based intervention methods to break up hallucinations, whilst the other half receive an educational podcast without interventions.
3. Three month follow up to measure effectiveness through a quality of life questionnaire. Participants who received disruption-based methods will answer additional questions, with some participating in interviews. 

Potential impact on people with sight loss

This research will create high-quality evidence to help support the development of strategies aiming to end hallucinatory episodes. In addition, it will show if access to an informative podcast has the potential to improve quality of life for people with CBS.

This podcast and participant feedback will also form the basis for a future collaborative project with people with CBS, with the intent of making a freely available support resource for people with CBS.