1. What should migraine be called?

Words are important, especially when you’re talking about people and their health. Wherever we look, different words are used to describe what migraine is - ‘disease’, a ‘disorder of the nervous system’, ‘syndrome’, and people with migraine are called ‘sufferers’, ‘people affected by migraine, or ‘migraineurs’.

You are invited to take part in this research project, called “Labelling Migraine”, because you have migraine. The project involves completion of an online, anonymous survey asking for your opinion about language that should be used to describe migraines and the people who have them. 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. 

The aim of this research is to find out what you think about how migraine is talked about – there are no direct benefits for you, but participation will hopefully improve future experiences for yourself and others when communicating with health professionals.

This survey asks for your opinion on the words and language that best describe migraine - you will rate (from 1 to 9) descriptors suggested by people who responded to part 1 of this survey. 

Ranking 1-3 (should not be used)
Ranking 4-6 (could be used)
Ranking 7-9 (preferred language)

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 Dr Julie Walters, PhD (Julie.walters@unisa.edu.au; 8302 2587). 

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).

By completing and submitting the survey, you are indicating that you have read and understood the Participant Information provided on the previous pages and give your consent to be involved in the research.

I understand that once I have completed the survey the researchers will be unable to remove my data from the study as it will be impossible to identify my individual data but that I can withdraw at any stage prior to completing the survey by closing my browser.

To help us analyse your responses, we have a few question

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* 1. Age group:

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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 (years) was your first migraine?

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* 6. Please rate on a scale of 1 to 9 your opinion of each term as a description of what 'migraine’ is?
(1-3 should not be used, 4-6 could be used, 7-9 preferred language)

  1 2 3 4 5 6 7 8 9
Presentation
Illness
Condition
Neurological attack
Inflammation
Syndrome
Cluster of symptoms
Disease

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* 7. Please rate on a scale of 1 to 9 your opinion of each term as a description of people who have migraine. 
(1-3 should not be used, 4-6 could be used, 7-9 preferred language)

  1 2 3 4 5 6 7 8 9
Migraine battlers
Migraine sufferers
Migraine survivors
People with migraine
Migraineurs
Migraine managers
People affected by migraine

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