Cardiff research

A new opportunity to participate in a research project

4 Apr, 2017

Here’s a new opportunity to participate in a new research project that is looking at the experiences of receiving a diagnosis of Pernicious Anaemia. This new project will look at the experience of patients in getting diagnosed and treated, and how health professionals view the disease. It’s being conducted by Dr Heidi Seage and Emily Glover at the Department of Applied Psychology, Cardiff Metropolitan University and will involve participants taking part in around an hour-long interview.
To be eligible to take part in the project you must be:

  • A Member of the Pernicious Anaemia Society
  • Be diagnosed with Pernicious Anaemia
  • Be between the ages of 18 and 75
  • Be English speaking
The title of the Research Project is:

Receiving a diagnosis of pernicious anaemia: exploring experiences of relationships with health professionals

Ethics approval reference number: 9061

Although the study is centred in Cardiff, the interviews will be carried out via Skype. If you live near Cardiff and prefer to have a face to face interview that can also be arranged. Here’s what the research is about:

“We are looking to explore the experiences of those with pernicious anaemia, focusing on their diagnostic and treatment journeys. We are interested in understanding how other peoples’ responses to PA (particularly health professionals) can impact on quality of life. We are aiming to interview between 6 and 10 individuals, each separately, to gather experiences of living with pernicious anaemia and determine how others are seen to respond to the condition. One interview will be conducted per participant, and each interview is expected to last approximately 60 minutes. They will take place over Skype, unless a face-to-face interview is preferred (we are based in Cardiff Metropolitan University). This study will take place over the months of April, May and June, 2017”.
Participants will receive a £10 Amazon Voucher for their time.
If you are interested in taking part in this study, would like more information or if you have any questions, please contact Heidi and Emily by email: project9061@outlook.com

2 Comments

  1. June Margaret Cullen

    4 Generations of my family have suffered with Vit B12 Defiency.I take care of myself by Everyother day injections of hydroxy cobalamin that I get sent to me from Germany. 3 Monthly injections offered by my GP would leave me half dead…

    Reply
    • Susan McMillan

      Oh dear I’m beginning to think I’m going to have the same problems
      My GP at first prescribed one injection a month followed by one every 3 months without ever considering a loading dose !!!!
      This was while my blood levels were on the floor !
      Soooo ….I researched and found NICE and NHS guidelines say 3 x a week, especially for folk with a brain disease (that’s me)
      The nurse said no way, it wasn’t enough and ordered more for me !
      I hear the next step after ‘loading’ is once a month……”we don’t bother with blood tests to check the levels – we just keep you topped up once a month” Agggh …..so it’s the same ‘script for everybody then !!! Looks like I’ll be sourcing it myself ….and on here for advice?

      Reply

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