What is it like to live and cope with pernicious anaemia: participants for research needed

7 Jun, 2018

Here’s a new opportunity to participate in a new research study exploring what it’s like to live and cope with Pernicious Anaemia. The research aims to explore the coping strategies of managing pernicious anaemia through the lived experiences of those diagnosed. The study will be carried out through one 30 minute Skype interview, involving yourself the researcher. You will be offered a £10 Amazon voucher as a thank you for taking part. This study will add to the Pernicious Anaemia literature, help to understand the every lived experiences of those with Pernicious Anaemia and could identify other areas to research.

To be eligible to take part in the project you must be:

  • A Member of the Pernicious Anaemia Society
  • Have a diagnose of Pernicious Anaemia for at least one year
  • Be between the ages of 18 and 70
  • Speak English as your first language

Hi!
My name is Lucy. I am a MSc Health Psychology student at Cardiff Metropolitan University.
For my dissertation I am exploring what it’s like to live and cope with pernicious anaemia. This study is interested in the lived experiences of those with pernicious anaemia and aims to address a gap in the pernicious anaemia literature by providing a new knowledge base in an unexplored area.
If you are aged 18-70, have a diagnose of pernicious anaemia for at least one year, speak English as your first language and are a member of the pernicious anaemia society then I would like to invite you to participate in this study.
If you are interested in this study or interested in participating please see the participant information sheet below for more information regarding the study. If, after reading the information, you would like further information on the study or would like to partake please contact: perniciousaresearch@gmail.com
If you are not interested in reading more on the study and do not wish to partake then you do not need to anything. Thank you for your time in reading this.

Ethics Approval Reference Number: 10250

Title of Project: Living with pernicious anaemia: Exploring lived experiences of management and coping

Participant Information Sheet, V1

This dissertation will explore what its like to live with pernicious anaemia in regards to managing and coping. I would like to invite you to participate in this study. Before you make any decisions please read through the following information which gives you a full understanding of the research. It is important to note that participation in this study is entirely voluntary. You do not have to respond back to this if you do want to volunteer. However, as the study is voluntary, if you do wish to partake getting in touch with the researcher is required. Also if you do decide to volunteer and, at a later date,before the interview has been conducted, decide you do not want to volunteer anymore just get in contact with me. This is not a problem, you will not be penalised for it and will not be contacted again regarding this study.

The research aims to explore the coping strategies of managing pernicious anaemia through the lived experiences of those diagnosed. Previous research on similar conditions has found a variety of coping mechanisms to help manage their condition such as day napping are used. When looking at the pernicious anaemia research similar parallels can start to be recognised, although be it not specifically focused on. Carrying out this research means a knowledge base for a new area of pernicious anaemia research will be explored and this study will provide the foundations for this.

The study will be carried out through one interview, involving yourself and I (the researcher/interviewer). If you get in touch and consent to take part a date and time convenient to both you and I will be arranged through email. The interview will take place through Skype/telephone or face-to-face (for those who cannot access Skype) as this allows you to stay in a familiar, comfortable but private location. The interview will last approximately 30 minutes. Topics to be covered in the interview are: your journey of the PA diagnosis, constructions of and importance of having PA, PA’s impact on your life; including others within your life, dealing with PA on an everyday basis and reflection on the future with PA. The whole interview will be audio-recorded. Consent will be obtained verbally on the day of the interview and audio recorded if carried out through Skype/telephone. If carried out face-to-face you will be asked to sign a consent form which will be kept by the researcher. You will be debriefed after the interview and, should you want it, you will be offered a £10 Amazon voucher as a thank you for taking part.

We are inviting all members of the pernicious anaemia society to think about participating. This is because you have the lived experience and knowledge the study is looking to explore. We are looking for approximately 10 participants. If you between the ages of 18 and 70, have had a diagnosis of PA for at least one year, speak English as your first language and are a member of the PA society you will be able to take part. Unfortunately you will not be able to participate if you do not meet any of the above. Participants will be chosen based on meeting the inclusion criteria and on a first come first serve basis.

There are little foreseen risks to participating in the study. It is asked that if your method of interviewing is Skype/telephone you must be in a private room where no one else can hear to protect your confidentiality. The interview schedule has been piloted to ensure the questions are appropriate and not invasive. Again you have the right to withdraw from the interview at any point or choose not to answer certain questions if you do not want too. You will also have the opportunity to read only your interview transcript and omit any data you do not want in the final transcript. You will also have the opportunity to withdraw your data up to one week after the original version is sent to you. You will have a full debrief after the interview and receive, either after the face-to face interview or via email, a debrief sheet containing telephone numbers of support networks should you wish to talk to them such as the Samaritans.

There are no direct benefits for you in taking part in the study. However, this study will add to the pernicious anaemia literature, help to understand the every lived experiences of those with pernicious anaemia and could identify other areas to research. You might also benefit if you will enjoy sharing your experiences and knowledge to add to the literature.

All your data collected will be kept confidential and anonymity will be ensured. Your contact details will be kept secure on a private email so you can be contacted with your written interview transcripts. Contact details will not be shared with anyone. Data collected from the interview, which includes audio-recordings and full written transcripts of the interviews, will be secured on a password protected computer and only accessible by the researcher. The audio tapes will not be shared with anyone else and they will be destroyed once the research project is completed. Full transcripts will only be shared with the dissertation marker. Pseudonyms will be used in place of your name and any potentially identifiable information will also be changed to secure your anonymity. You will not be identifiable.

If you are interested in taking part or would like further information on the study please do not hesitate to get in contact through the contact details below.

If you do not wish to take part then you do not need to do anything and will not be contacted anymore regarding the study. Thank you for taking the time to read this information sheet.

Contact details

perniciousaresearch@gmail.com

6 Comments

  1. Clive Parsons

    I’ve had P.A. since 1972 but am aged 76 so am I precluded from taking part in the survey?

    I am a PASoc member.

    Regards,

    Clive Parsons

    Reply
    • Petra

      Hello Clive,
      I think so, but if you want to be sure, just send them an email.
      BW, Petra

      Reply
  2. Willemina Rietsema

    Why the age cut-off of 70 years? Older people are under-represented in research. There is no scientific reason to use a cut-off of 70 years. And we need the perspectives of older people too!

    Reply
    • Rebecca Thomas

      Hello,
      My name is Rebecca and I am 30, suffering with PA for 5 years now and it hasn’t got easier.
      Would be happy to support your project if you was interested.

      Reply
  3. Kathleen Dungey

    Hello,
    My name is Kathleen and I am 70 years old.
    I was diagnosed with P.A. at the beginning of this year and originally had three injections on alternate days for a week. Since then I have had 3 further injections at 3 monthly intervals. My fourth is due at the end of November.
    Unfortunately, I have not felt any positive benefits from these injections so have arranged to see a consultant haematologist privately.
    To share some of my health history, in 2012 I had an operation for paraoesophageal hernia – my stomach had moved up through an opening in my diaphragm into my thoracic cavity.
    I was also diagnosed with enlarged red blood cells in 2014.
    In May 2017 I had a total knee replacement after which I developed an infection which led to my being in isolation. From this time I have been susceptible to infections and I went on to have a few different ones requiring antibiotics throughout 2017 / 18 culminating in me developing pneumonia in June this year and hospitalised in Portugal whilst on holiday.
    Could the history of my health above have any bearing on me developing PA and why are the injections having no positive effect?
    I am unable to lead a normal life and finding it very difficult to carry out every day tasks or having any motivation or quality of life.
    Obviously my family are very concerned about me and I have joined the PAS in the hope of finding support and have a greater understanding of what is happening to me. I hope I can find some answers and other ideas of what I can do help me feel better. I understand PA can not be cured but can find better ways of managing it.
    After researching the PAS, it has given me some hope and I have been impressed with what I have read so far.
    Many thanks for taking the time to read this.
    Regards
    Kathleen

    Reply
  4. Ann Rich

    I have had PA since I was 43, I am now 70. I only usually have 4 to 5 weeks after my injection feeling ok, I then start to feel gradually worse. Leg cramps and night, muscle fatigue, At that time I was also experiencing lots stomach problems which didn’t go away, after 10 years of suffering I was diagnosed with coeliac disease, although I stick to a gluten free diet my stomach generally plays up leading up to my injection, which I have every 90 days. I have asked if I can have it earlier. I was told no and that it is common to imagine all the symptoms. I feel that I have lived half a life

    Reply

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