Living with Fibromyalgia

1. INFORMATION SHEET FOR PARTICIPANTS

 
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WELCOME, IF YOU WOULD LIKE TO PARTAKE IN THIS RESEARCH STUDY ABOUT THE EXPERIENCE OF LIVING WITH FIBROMYALGIA, PLEASE READ THE FOLLOWING INFORMATION

WHAT IS THIS STUDY ABOUT? Chronic pain associated with fibromyalgia can be a challenging experience for those who live with it. Because of the lack of a medical diagnosis and the invisibility of its symptoms, people with fibromyalgia may encounter a lack of understanding, disbelief or invalidation from others about the reality of the symptoms they experience. This experience of invalidation presents an additional challenge for many people with fibromyalgia. The extent of this challenge may also be influenced by how people see themselves in relation to their persistent pain.

THE PURPOSE OF THIS STUDY is to understand more about the impact on people who live with fibromyalgia, of experiencing their symptoms as invalidated by others, including family, work colleagues, and medical professionals.

WHAT WILL THE STUDY INVOLVE? If you decide to participate, you will be asked to fill out some questionnaires. The questions will ask about your pain and how you view yourself in relation to your pain, your ability to carry out activities, your mood, feelings and emotions aswell as your gender, age, level of education, health, and work. The questionnaires will take between 30 and 40 minutes to complete.

ARE THERE ANY BENEFITS TO PARTICIPATION? You will not directly benefit from participation but your participation will be invaluable in contributing towards a better understanding of the extent and impact of illness invalidation experiences on people who are living with fibromyalgia.

YOUR PARTICIPATION Your participation will be ANONYMOUS AND CONFIDENTIAL. This means that you will not be asked to provide any identifying information about yourself and your completed survey will be stored securely and confidentially, in accordance with the Data Protection Act, 1997.

Participation is VOLUNTARY, you can choose whether or not to participate.

WHO CAN PARTAKE IN THIS STUDY? You can take part if you are 18 years of age or older; and you have been experiencing pain for the last 3 months or more.

WHO SHOULD NOT PARTAKE? You should not take part if you do not suspect you have fibromyalgia, are under the age of 18, have difficulty understanding written English, or if your pain is due to having cancer.

If you CONSENT to participate in this survey, please click on the “next” button which will take you to the survey. You can withdraw your consent by clicking on the "exit this survey" link at the top, right hand corner of the page. Once you click the “submit” button your survey will be included in the study and you will not be able to withdraw your survey. This is because your survey is anonymous and we will not be able to distinguish it from other surveys.

WHO IS CONDUCTING THIS RESEARCH? This research is being conducted by Caroline Kenny on the Doctoral Program in Clinical Psychology at the National University of Ireland, Galway. The research is supervised by Dr. Brian McGuire, who is Director of Clinical Psychology at the National University of Ireland Galway, BA, MClinPsych, DipCrim, DipHealthSc, PhD, AFPsSI, Reg Psychol(PsSI), AFBPsS Cpsychol.

CONTACT DETAILS If you would like further information about the study or would like to speak to someone about your rights as a research participant, please contact: Caroline Kenny, Department of Clinical Psychology, National University of Ireland Galway: c.kenny8@nuigalway.ie.

Additionally, if you would like to talk to someone about the study in confidence you may also contact the chairperson of the NUI Galway Research Ethics Committee on: ethics@nuigalway.ie.

THANK YOU, YOUR CONTRIBUTION IS VERY VALUABLE AND IS ALSO VERY MUCH APPRECIATED

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