The Lived Experience of Hemiplegic Migraine.

22nd October 2018

PARTICIPANT INFORMATION SHEET

My name is Anna Marie Dowling and I am a Senior Clinical Psychologist and Clinical Neuropsychologist with the HSE West, working in Castlebar, Co. Mayo. I am conducting this research as part of a post-qualification Doctorate in Psychological Science with the National University of Ireland, Galway.

 

Invitation

You are invited to take part in a research study. Before you decide, it is important that you understand why the research is being done and what it will involve. This Participant Information Sheet tells you about the purpose, risks and benefits of this research study. If you agree to take part, I will ask you to sign a Consent Form. If there is anything that you are not clear about, I will be happy to explain it to you. Please take as much time as you need to read this information. You should only consent to participate in this research study when you feel you understand what is being asked of you, and you have had enough time to think about your decision. Thank you for reading this.

If you would like to take part please contact Anna Marie Dowling, Senior Clinical Psychologist with the HSE West at annamarie.dowling@hse.ie or 087-3555303.

Purpose of the Study

The purpose of this study is to further the scientific understanding of hemiplegic migraine by exploring the subjective experiences of those living with the condition. I am interested in hearing about what it is like to live with this condition and how it impacts on day to day life. It is hoped to have 6-8 participants in this study.

 

Taking Part – What it Involves

If you consent to participate I will arrange to meet with you to interview you about your personal experience of hemiplegic migraine and its impact on your life to date. If you participate, information about your experiences and quality of life, will be collected and stored confidentially. Only general findings will be reported, and you will not be identified in any way.

 

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part, you will be given this Information Sheet to keep and will be asked to sign a Consent Form prior to being interviewed. If you decide to take part you are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect your rights in any way.

 

What will happen to me if I take part?

Should you decide to take part in this study, please e-mail or text me, Anna Marie Dowling, at the e-mail address/phone number below with your name, contact number and best time for a phone call, and I will contact you to discuss the study further. Should you decide to proceed and the maximum number of participants for the study has not been reached, arrangements will be made to interview you at a mutually convenient time and location. Prior to the interview taking place you will be asked to sign a consent form. The interview should take approximately one hour of your time and it will be audio recorded. The recording will be transcribed for analysis. The original recording will be stored securely for five years in accordance with best practice, after which it will be destroyed. To protect you privacy, your name will not be stored with your data, which will be referenced by a numerical code and securely stored in the researcher’s office.

 

How long will my part in the study last?

The interview will take approximately one hour. Some additional time may be needed to travel to and from the mutually agreed interview location.

 

What are the possible benefits in taking part?

By taking part you will be helping to further the scientific understanding of hemiplegic migraine including the impact of the condition on everyday life and the needs of those living with the condition. This may lead the way to new treatment and intervention approaches which could be of benefit to people with hemiplegic migraine.

 

What are the possible disadvantages and risks of taking part?

The study involves reflecting on your experiences of hemiplegic migraine and the impact of this condition on your life. You might find that following it, you would like to talk to someone about any issues it may have raised for you. I would be happy to recommend someone to you. There is also a list of support services included with this documentation.

 

What happens at the end of the study?

Following the study, (this should be within 12 months of your participation), you will receive a one or two page summary of the main findings. While it could be up to two years before final results are published, I would be pleased to include you on an address list to receive publications arising from the study. Only general findings will be reported, and you will not be identified in any way.

 

What happens if I change my mind during the study?

You are entitled to change your mind about participating in this at any time without disadvantage or penalty.

 

Who do I contact for more information or if I have further concerns?

If you have any queries or concerns pleases contact Anna Marie Dowling, Senior Clinical Psychologist with the HSE West at annamarie.dowling@hse.ie or 087-3555303.

 

If you have any concerns about this study and wish to contact someone in confidence, you may contact: The Chairperson of the NUI Galway Research Ethics Committee, c/o Office of the Vice President for Research, NUI Galway, ethics@nuigalway.ie. or The Head, School of Psychology, National University of Ireland, Galway (john.bogue@nuigalway.ie) or Professor Brian McGuire, Professor of Clinical Psychology, School of Psychology, National University of Ireland, Galway (brian.mcguire@nuigalway.ie).

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The Lived Experience of Hemiplegic Migraine.

22nd October 2018

PARTICIPANT INFORMATION SHEET

My name is Anna Marie Dowling and I am a Senior Clinical Psychologist and Clinical Neuropsychologist with the HSE West, working in Castlebar, Co. Mayo. I am conducting this research as part of a post-qualification Doctorate in Psychological Science with the National University of Ireland, Galway.

 

Invitation

You are invited to take part in a research study. Before you decide, it is important that you understand why the research is being done and what it will involve. This Participant Information Sheet tells you about the purpose, risks and benefits of this research study. If you agree to take part, I will ask you to sign a Consent Form. If there is anything that you are not clear about, I will be happy to explain it to you. Please take as much time as you need to read this information. You should only consent to participate in this research study when you feel you understand what is being asked of you, and you have had enough time to think about your decision. Thank you for reading this.

If you would like to take part please contact Anna Marie Dowling, Senior Clinical Psychologist with the HSE West at annamarie.dowling@hse.ie or 087-3555303.

Purpose of the Study

The purpose of this study is to further the scientific understanding of hemiplegic migraine by exploring the subjective experiences of those living with the condition. I am interested in hearing about what it is like to live with this condition and how it impacts on day to day life. It is hoped to have 6-8 participants in this study.

 

Taking Part – What it Involves

If you consent to participate I will arrange to meet with you to interview you about your personal experience of hemiplegic migraine and its impact on your life to date. If you participate, information about your experiences and quality of life, will be collected and stored confidentially. Only general findings will be reported, and you will not be identified in any way.

 

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part, you will be given this Information Sheet to keep and will be asked to sign a Consent Form prior to being interviewed. If you decide to take part you are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect your rights in any way.

 

What will happen to me if I take part?

Should you decide to take part in this study, please e-mail or text me, Anna Marie Dowling, at the e-mail address/phone number below with your name, contact number and best time for a phone call, and I will contact you to discuss the study further. Should you decide to proceed and the maximum number of participants for the study has not been reached, arrangements will be made to interview you at a mutually convenient time and location. Prior to the interview taking place you will be asked to sign a consent form. The interview should take approximately one hour of your time and it will be audio recorded. The recording will be transcribed for analysis. The original recording will be stored securely for five years in accordance with best practice, after which it will be destroyed. To protect you privacy, your name will not be stored with your data, which will be referenced by a numerical code and securely stored in the researcher’s office.

 

How long will my part in the study last?

The interview will take approximately one hour. Some additional time may be needed to travel to and from the mutually agreed interview location.

 

What are the possible benefits in taking part?

By taking part you will be helping to further the scientific understanding of hemiplegic migraine including the impact of the condition on everyday life and the needs of those living with the condition. This may lead the way to new treatment and intervention approaches which could be of benefit to people with hemiplegic migraine.

 

What are the possible disadvantages and risks of taking part?

The study involves reflecting on your experiences of hemiplegic migraine and the impact of this condition on your life. You might find that following it, you would like to talk to someone about any issues it may have raised for you. I would be happy to recommend someone to you. There is also a list of support services included with this documentation.

 

What happens at the end of the study?

Following the study, (this should be within 12 months of your participation), you will receive a one or two page summary of the main findings. While it could be up to two years before final results are published, I would be pleased to include you on an address list to receive publications arising from the study. Only general findings will be reported, and you will not be identified in any way.

 

What happens if I change my mind during the study?

You are entitled to change your mind about participating in this at any time without disadvantage or penalty.

 

Who do I contact for more information or if I have further concerns?

If you have any queries or concerns pleases contact Anna Marie Dowling, Senior Clinical Psychologist with the HSE West at annamarie.dowling@hse.ie or 087-3555303.

 

If you have any concerns about this study and wish to contact someone in confidence, you may contact: The Chairperson of the NUI Galway Research Ethics Committee, c/o Office of the Vice President for Research, NUI Galway, ethics@nuigalway.ie. or The Head, School of Psychology, National University of Ireland, Galway (john.bogue@nuigalway.ie) or Professor Brian McGuire, Professor of Clinical Psychology, School of Psychology, National University of Ireland, Galway (brian.mcguire@nuigalway.ie).

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