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Help out an insider doing ME/CFS research
Friday 16 January 2009
We’d like to draw the attention of people with ME/CFS to a planned doctoral research project by Geoffrey Hallmann.
Geoffrey has had ME/CFS for a decade and wants to look at “Persons with ME/CFS: An Examination of Health Issues and Relationships with Social Institutions in Australia”.
Update: Actually, we realised after posting this that South Australians can participate in the final stage of this project. So do take a good look at it.
And good luck Geoffrey.
Re: PhD Research, Requestion for Research participants.
My name is Geoffrey Hallmann. I am a PhD Candidate with the Southern Cross University in Lismore. I am currently undertaking research in ME/CFS. My PhD is entitled "Persons with ME/CFS: An Examination of Health Issues and Relationships with Social Institutions in Australia".
The research is "insider research", because I am a person with ME/CFS (since 1995/1996). It is both Qualitative (ie the story of participants) and Quantitative (ie tick a box questionnaire) in nature. I am currently seeking participants for my research. I will ultimately be requiring around 265 participants (and more if I can) to participant in the questions.
The research is broken into three phases. Phase 1 and 2 are Qualitative. Phase 3 is Quantitative:
1. Phase 1 (Pilot Study - now) - This will involve interviews with three people and the questionnaire will be in two parts. The first will gather background about the participants and their ME/CFS. The second is a semi-structured interview that will be carried out in person with the participant at a place of their choosing. The interview will be transcribed and provided to the participant for feedback. Also the participant is free to send information by Mail or Email if there are issues that they may have omitted in the interview.
Once this phase is complete, the questionnaires will be refined (if required). I have already filled the positions with respect to particpants in this phase.
2. Phase 2 (Main Study - in about March 2009) - This will involve a refined questionnaires and will involve interviews with 10 - 15 people. My goal is to get participants from the East Coast of Australia. I will be happy to visit participants in Townsville, Sydney, Newcastle and Melbourne (and out to Healesville area). Given I live on the Far North Coast of NSW, I am willing to travel to areas such as Brisbane, the Sunshine Coast, Gold Coast and the like. In essence around four hours from home.
Once this phase is complete, a quantitative questionnaire will be created.
3. Phase 3 (Final Study - in about June 2009) - It is envisaged that this questionnaire will bring together the experiences of those in the first two phases (and literature) and it will obtain an Australian perspective of the condition. This will involved 250 plus participants from throughout Australia. It is intended that a website will be created to gather information. For those unable to use the site, I will be posting or Emailing such questionnaires. The goal is to produce a geographically diverse picture from throughout Australia.
The goal of the research is to better understand the Australian experience of ME/CFS and compare it to the literature on the subject. The second goal of the research is to examine the interaction of people who have ME/CFS with Social Institutions. Social Institutions include:
- Government (eg Centrelink, ATO, Universities, Schools, etc)
I would like to gather information on interested people now so that when I reach each phase of the research, I am in a position to continue.
All participant information will be kept in a secure location and for privacy purposes it will be de-identified for the purposes of the study.
I would appreciate if you could post this request on your website and place in your journals or Email lists. I have provided four documents for your perusal (not for distribution). These represent phase 1 of the research, but give you an insight into its intent.
• Interview Questions FINAL (Word document, 133KB)
Should there be any questions in relation to this request, please feel free to contact me on the numbers below.
I appreciate your assistance and support.
+ 61 2 66241979
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