Open PhD student looking to recruit volunteers for interview on their online use & social connections

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PhD Student @Bham

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Hi I'm Diane Shortland, a PhD student at the university of Birmingham studying a doctorate in Applied Health Research. I'm current conducting a study on the online use of people with ME/CFS and am looking to interview those with the illness on their personal experiences of social support they receive or seek online. I have full ethical approval. I also have ME myself and are very much aware of the energy involved in participating. As such I offer different ways to be interviewed - via Zoom, telephone call, email or voice notes. Interviews can also be spread across various time lengths as necessary. I am passionate about providing social support to those isolated with the illness and hope my research will go towards providing better services of support moving forward. Please find the recruitment advert below:

Study: The experience of making online connections in people with ME/CFS and the relationship between their online and offline lives.

Do you have Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)?

Have you used the internet, in the last six months, to connect with other people with ME/CFS?

I am seeking volunteer participants for a study on online use of people with ME/CFS in everyday life.

Hi, I am Diane, a PhD student in Applied Health Research at the University of Birmingham. My doctoral studies are on the experiences of people with ME/CFS.
https://www.birmingham.ac.uk/staff/profiles/applied-health/shortland-diane
www.birmingham.ac.uk

Exploring how social & community support life with chronic illness - University of Birmingham

Learn about how Diane is looking at the social implications of long-term chronic illness.
www.birmingham.ac.uk www.birmingham.ac.uk

If you use the internet to connect with others with ME/CFS , I would love to talk to you to learn more about these experiences and if/how online connections affect your offline life. Good or bad experiences are welcome and there are no right answers. I am looking to answer the following questions:
  • How are online connections formed, in what capacity do they exist, and how are they maintained?
  • Why are online connections sought and what effect do they have on people with ME/CFS?
  • What, if any, is the relationship between online connections and participants’ offline lives?
If you would be willing to chat about your experiences in an informal online/phone interview lasting approximately 30-60mins, please get in touch. If you require interviews of shorter durations, multiple sessions can be accommodated, as too can any other reasonable adjustments. The interviews will take place via Zoom/Teams, with camera on or off, as you prefer, or over the phone. To ensure those severely affected are able to take part, it will also be acceptable to receive an interview topic guide in advance and submit voice notes in stages rather than traditional interview, with the option of emailing also. Any concerns regarding taking part can be discussed with an aim to accommodating participation where at all possible.

Everything discussed will be confidential. The interview will be recorded and transcribed; the information gathered will only ever be used anonymously to protect identity. Full ethical approval has been gained for this study. You remain able to withdraw from the study up to four weeks after receipt of the interview transcription. All research is transparent and you will receive information on what is being studied, the findings and impact the work will have on improving the lives of people with ME, if you would like to.

Please email me: Diane, on DLS760@student.bham.ac.uk and I will be in touch to arrange a convenient time to discuss things further.

Thank you in advance for the time and effort involved, it is much appreciated.
 
Hi. Have you considered how this will exclude many people because many Severe and moderate-severe aren’t able to participate in spoken real time interviews?

It’s not necessarily a problem but very well worth noting in the analysis you only will have captured the experiences of a less severely affected subgroup if you choose to do the analysis this way.
 
I found this description here. I’m not able to make much sense of it.
Understanding the dynamics of online social support offers the potential to improve healthcare strategies for ME patients.
Click to expand...
How would this be able to improve «healthcare strategies»?
By integrating online support into management plans, health professionals can foster greater empathy and reduce the stigma that often surrounds this illness.
Click to expand...
How would online support be integrated into «management plans»?
Additionally, insights into offline relationships—with significant others, family, and society—will help develop more comprehensive support systems for both patients and their immediate networks.
Click to expand...
This also makes no sense to me. The government can’t mandate or influence the support systems around any one individual with regards to the social relationships.

The government should provide adequate practical support for both the patients and the carers, but I have no idea how that is related to social connections and online use.
 
Yann04 said:
Hi. Have you considered how this will exclude many people because many Severe and moderate-severe aren’t able to participate in spoken real time interviews?

It’s not necessarily a problem but very well worth noting in the analysis you only will have captured the experiences of a less severely affected subgroup if you choose to do the analysis this way.
Click to expand...
There’s the option of answering written questions with voice notes or through emails. But that still leaves out some of the most severe that can’t communicate that way, and the people without enough of a budget to use on participating.
 
It will definitely be biased, not only for people who can't take part, but people who aren't interested in taking part. I suppose there would be energetic extroverts, bitter ranters, and various other subgroups, but leave out a lot of other subgroups. I think this is the sort of study that needs a large number of randomly selected individuals, otherwise it's too removed from reality.

Utsikt's question is valid: how will the results actually help PWME? The ones who will claim that social media helps them already have what they want. The ones who didn't find any help through the available options probably aren't going to find help there.
 
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