Thank you for taking the time to complete this survey

People with ongoing migraine frequently report an inability to describe their experiences to friends and family in an understandable way, leading to frustration and disappointment. A review of online support groups confirms this – people often using words such as as ‘distress’, ‘suffering’, and ‘disability’ in reference to their migraine experience. In order to better understand the lived experience of migraine, we wanted to ask people experiencing it.

You are invited to take part in this research project, called “Migraine – The Lived Experience”, because you have migraine. The project involves completion of an online, anonymous survey asking for your description of what it is like to have migraine, and the physical sensation of that experience. The survey should take less than 10 minutes to complete. Participation in this research is voluntary. If you don’t wish to take part, you don’t have to. Your decision whether to take part or not to take part, will not affect your relationship with the University of South Australia or the Watson Headache Institute.

 The aim of this research is to understand the lived experience and physical sensation of migraine, to help the non-migraine community better understand what it is like. It is not anticipated that participants will experience either harm or directly benefit. However, we hope that you will personally benefit from your involvement, having an opportunity to express your views and knowing that you have contributed to the greater understanding of the lived experience of people with chronic migraine. 

The information you provide will be anonymous and stored electronically on the University of South Australia server for 5 years, after which it will be deleted. Collated data will be stored as part of a databank to inform future headache research projects and improve clinical practice. You will in no way be identifiable as part of this process.

No member of the research team will receive a personal financial benefit from your involvement in this research project (other than their ordinary wages).

If you want any further information concerning this project or if you have any problems which may be related to your involvement in the project, you can contact any of the following people: Dr Julie Walters, PhD (Julie.walters@unisa.edu.au; 8302 2587), Dr Dean Watson, PhD (dean@watsonheadache.com; tel: +61 8 7087 2157), Dr Maureen McEvoy (Maureen.mcevoy@unisa.edu.au; tel: 8302 2547).

The ethical aspects of this research project have been approved by the Human Research Ethics Committee (HREC) of the University of South Australia as required by the Australian government research requirements, specified in the National Statement on Ethical Conduct in Human Research (2007 - updated 2018). This statement has been developed to protect the interests of people who agree to participate in human research studies. If you have any complaints about any aspect of the project, the way it is being conducted or any questions about being a research participant in general, please contact: Executive Officer of UniSA HREC (email: vicki.allen@unisa.edu.au; tel: +61 8 8302 3118). Concerns about the study or any complaints can be also be lodged with Executive Officer of UniSA HREC (email: humanethics@unisa.edu.au or tel: 8302 3118).

 

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* 1. What is your age?

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* 2. What gender do you identify as?

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* 3. Where do you live?

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* 4. What is your birth/native language?

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* 5. Approximately how long ago (in years) was your first migraine

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* 6. What is the experience of having migraine like for you?
Please describe what it's like to live with migraine (we have included an example from an individual with migraine below)

My migraine life:

Living with migraine is terrible. I’ve lost count of the times I’ve wished I would die just so it would stop – the nausea, the pain, the not knowing when or if it would ever end. I’ve lost count of the times I thought that I was dying, sitting on the floor of the shower, letting the water run over me just so I felt something different. I’ve lost count of the days I’ve missed work, the social events I avoided, the days I went to work but probably shouldn’t have, not wanting to be ‘that person’ who misses work because of a headache. Living with migraine is frustrating. It’s a hidden illness - like mental health – one that people can’t see so struggle to understand and empathise with. I’ve lost days and weeks of my life to it, felt fear and guilt and shame because of it. Sometimes living with migraine has consumed me, my life, my relationships, my work.  It has made me feel hopeless and helpless and angry. Living with migraine has made me feel not like me.


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* 7. What does your migraine feel like? (i.e. Please describe the physical sensation(s) of migraine)

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