Fibro Guys

A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain

Participate in important research on fibromyalgia!

Hey Fibro Guys,

 

A few weeks ago, a researcher from the National University of Ireland at Galway contacted me about an opportunity for Fibro Guys members to participate in a study about fibromyalgia, specifically the experience of invalidation that many of us have experienced.

How many of us have experienced a profound lack of understanding among our friends, family, and even doctors about our condition? I know I have. And for me, this is one of the most painful aspects of fibromyalgia.

 

Being men, we might add an otherwise unheard voice to this research. So I encourage everyone to participate. 

 

If you would like to contribute to this important research, please click on the link below. The researcher, Caroline Kenny, has promised to send us a copy of the final publication when her research is finished.

 

Your participation is anonymous and confidential. If you would like to read more about the research before you decide to participate, please read the details below.

 

Click here to take the survey!

 


Research 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 of experiencing symptoms as invalidated by others, including family, work colleagues, and medical professionals on people who live with fibromyalgia.

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.

INFORMATION ABOUT 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 so you can choose whether or not to participate.

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.

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

 

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Would you like to contribute to Research on the Impact of Living with Invalidation of Fibromyalgia?

 

Chronic pain associated with Fibromyalgia can be a challenging experience for those who live with it. Because of the invisibility of the symptoms of Fibromyalgia and the lack of a medical diagnosis, people with Fibromyalgia may encounter a lack of understanding, disbelief or invalidation from others about the reality of their experience of the symptoms of Fibromyalgia . Unfortunately, this can present an additional challenge for many people with Fibromyalgia.

 

The purpose of this research is to understand more about the impact on people with Fibromyalgia, of experiencing their symptoms as invalidated by others, including family, work colleagues, and medical professionals. It is hoped that research like this will help to raise awareness about the impact of a lack of understanding of Fibromyalgia. If you choose to complete the online survey, your participation will be invaluable in contributing towards a better understanding of the extent and impact of illness invalidation experiences on people living with Fibromyalgia.

 

This research has been granted ethical approval by the National University of Ireland Research Ethics Committee. A summary of the study will be made available through your organisation in September 2011.

 

The link below will provide you with further information about the research.

If clicking this link below does not take you directly to the online survey, please copy and paste the link into the address bar of your web browser to access the survey

 

http://www.surveymonkey.com/s/53LSLWG

 

Thank You for your valuable contribution & supporting the research!

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Replies to This Discussion

I hope everyone has considered taking this survey. It doesn't take very long and is completely confidential. I took it last week or so and found it to be very well done. It's not everyday you get a chance to lend your voice and own unique experiences to published research.
Has anybody taken the survey? What did you think? If not, why not?

 

   I really liked taking the survey and think it is very important to do these kind of things

I see this is a posting from 2011... Are they still seeking data do you know?

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