A survey to understand visual disturbances (hallucinations) in people living in Ireland with sight loss |
1. Consent to Participate in a Research Study
Support networks:
If at any time you are concerned or would like support, please contact the Fighting Blindness Insight Counselling Service at on 01 674 6496 or insight@fightingblindness.ie.
Introductory Statement
Supervisor: Dr Alison Reynolds, PhD, UCD School of Veterinary Medicine.
alison.reynolds@ucd.ie
Co Supervisor: Dr Laura Brady, PhD, Former Head of Research, Fighting Blindness
research@fightingblindness.ie
What is this research about?
A side effect sometimes associated with sight loss is seeing things that are not there. This is called Charles Bonnet syndrome. This condition can cause individuals living with visual impairments to see visions of people or objects that are not there. This is not a mental health condition. There is nothing wrong with the mind. The exact cause of Charles Bonnet Syndrome is unknown and not completely understood. It is thought that the brain tries to “fill in the gaps” left by sight loss. It is a reaction of the healthy brain to sight loss.
The exact type of vision can vary. For example, some people have said they will see tigers sitting next to them, Victorian figures, or images of walls where there are none. These visions can present all the time or can randomly appear. These visions can be very frightening for individuals as they can be very realistic and can appear unexpectedly.
Charles Bonnet Syndrome is thought to be reasonably common. However, many patients and their physicians are unaware that Charles Bonnet syndrome is often experienced in visually impaired patients. This leads to feelings of confusion and/or concern among patients who experience these visions and also among their family and caregivers. Expanding our understanding of the prevalence of Charles Bonnet Syndrome in Ireland is important to spread awareness of this condition among health care professionals (HCPs) and patients.
Why are you doing this research?
The overall goal of this study is to learn more about Charles Bonnet Syndrome from a patient perspective and to use this knowledge to raise awareness of the condition with patients, doctors and the general public. We do not know how many visually impaired people living in Ireland experience Charles Bonnet Syndrome. The research study aims to gather information on those who are affected by Charles Bonnet Syndrome by disseminating a survey to individuals living with visual impairment. We want to gain an understanding of how these visions make people feel and if they make it difficult to carry out daily activities. We will use this information to spread awareness of Charles Bonnet Syndrome among clinicians, patients and care givers.
Why am I being asked to participate?
You are being asked to participate in this research study because you are an adult living with visual impairment in Ireland.
What will happen if I decide to take part in this research study?
If you take part in this research study, you might realize that you are experiencing Charles Bonnet Syndrome. This may be concerning. Please reach out to the counselling services provided by Fighting Blindness if you would like clarification or support at any time throughout the study. You can contact the Fighting Blindness Insight Counselling Service at 01 674 6496 or insight@fightingblindness.ie.
If you take part in this research study, you might realize that you are experiencing Charles Bonnet Syndrome. This may be concerning. Please reach out to the counselling services provided by Fighting Blindness if you would like clarification or support at any time throughout the s
If at any time you are concerned or would like support, please contact the Fighting Blindness Insight Counselling Service at on 01 674 6496 or insight@fightingblindness.ie.
Introductory Statement
Supervisor: Dr Alison Reynolds, PhD, UCD School of Veterinary Medicine.
alison.reynolds@ucd.ie
Co Supervisor: Dr Laura Brady, PhD, Former Head of Research, Fighting Blindness
research@fightingblindness.ie
What is this research about?
A side effect sometimes associated with sight loss is seeing things that are not there. This is called Charles Bonnet syndrome. This condition can cause individuals living with visual impairments to see visions of people or objects that are not there. This is not a mental health condition. There is nothing wrong with the mind. The exact cause of Charles Bonnet Syndrome is unknown and not completely understood. It is thought that the brain tries to “fill in the gaps” left by sight loss. It is a reaction of the healthy brain to sight loss.
The exact type of vision can vary. For example, some people have said they will see tigers sitting next to them, Victorian figures, or images of walls where there are none. These visions can present all the time or can randomly appear. These visions can be very frightening for individuals as they can be very realistic and can appear unexpectedly.
Charles Bonnet Syndrome is thought to be reasonably common. However, many patients and their physicians are unaware that Charles Bonnet syndrome is often experienced in visually impaired patients. This leads to feelings of confusion and/or concern among patients who experience these visions and also among their family and caregivers. Expanding our understanding of the prevalence of Charles Bonnet Syndrome in Ireland is important to spread awareness of this condition among health care professionals (HCPs) and patients.
Why are you doing this research?
The overall goal of this study is to learn more about Charles Bonnet Syndrome from a patient perspective and to use this knowledge to raise awareness of the condition with patients, doctors and the general public. We do not know how many visually impaired people living in Ireland experience Charles Bonnet Syndrome. The research study aims to gather information on those who are affected by Charles Bonnet Syndrome by disseminating a survey to individuals living with visual impairment. We want to gain an understanding of how these visions make people feel and if they make it difficult to carry out daily activities. We will use this information to spread awareness of Charles Bonnet Syndrome among clinicians, patients and care givers.
Why am I being asked to participate?
You are being asked to participate in this research study because you are an adult living with visual impairment in Ireland.
What will happen if I decide to take part in this research study?
If you take part in this research study, you might realize that you are experiencing Charles Bonnet Syndrome. This may be concerning. Please reach out to the counselling services provided by Fighting Blindness if you would like clarification or support at any time throughout the study. You can contact the Fighting Blindness Insight Counselling Service at 01 674 6496 or insight@fightingblindness.ie.
If you take part in this research study, you might realize that you are experiencing Charles Bonnet Syndrome. This may be concerning. Please reach out to the counselling services provided by Fighting Blindness if you would like clarification or support at any time throughout the s