Request for Steering Group members to guide a study on online connections of people with ME/CFS and their offline lives

[bobbler]

Hi I’d like to follow up from my post last week by giving you a little more information on myself, my research and reasons for my PPI request.


I am indeed Diane Shortland from the University of Birmingham and am studying for a PhD in Applied Health Research. I study within the department of applied health sciences and am not based in any psychiatric disciplines. My overall research topic is on the social implications of long term illness, namely ME/CFS: how do people build and maintain online connections and relationships in their daily lives?


I have ME myself and have spent time both bedbound and housebound over the years. I believe ME/CFS to be a physical biochemical illness. During my tough years I relied a lot on friends I’d made via the ME world and I valued the support I got from them, particularly when up against stigma and invalidation from those around me. I have no psychiatric or psychological agenda to my research; instead I am curious to learn more of how the internet can improve the lives of people with ME/CFS. The reason behind all research is to move the knowledge forward and so my aim is to gain greater insight into online use in people with ME/CFS. I am not seeking to find any causative link between internet use and ME/CFS. I wish to understand how the internet is aiding daily life, in what ways this is happening and how it interlinks to people’s offline lives. I don’t have a pre-determined theoretical standpoint but instead work in an inductive iterative manner, being led by the findings. I am open and engaged in my approach to research and believe patient and public involvement (PPI) is a useful exercise. It is not a requisite of my college that I include PPI in my study, however the benefits in doing so are clear.


My previous systematic review was of a scoping design to ensure all information on the topic of online use was found and not narrowed by any assumptions; criteria was broad and and highlighted areas where further research was needed (i.e. direct experiences of people on their online use and how it relates and interlinks to offline lives). On my current study - interviewing those with ME/CFS - I again wish to remain as open as possible about what findings may emerge. I therefore feel the use of a steering group in formulating my interview topic guide will enhance the process and may bring up questions to ask that I may have missed myself since we all have different experiences we bring to the table.


In my background searching it became apparent that very few research studies actually interviewed people directly so I wish to give opportunity for people with ME/CFS to share their own voice and experiences. The interviews will ask open-ended questions and allow for interviewees to take the topic where they see relevant. In doing this we can look beyond any assumptions about the use of the internet in people’s lives we may have, and open up to all ways it is being used, as well as to what benefit.


The findings will hopefully not only shed light on greater insight of online use but also lead to dissemination discussions about how this knowledge can aid in the offering of services to support people better, especially remotely. The findings will very much guide the outcomes of knowledge-into-practice. My intention however is to bring recognition to people who are managing their own illness and use this knowledge as a resource to take forward with the view of improving lives wherever possible. The social isolation experienced by many is an added illness burden and it would be good to not only have this understood and appreciated more but also have an interest in trying to improve daily living for such people who live with an illness that affects every single area of their lives. In short, my research is empathic and transparent and intended to support all those going through what I have gone through myself.


I understand the energy expenditure that involvement in PPI will mean and I do appreciate the sacrifice taking part would entail. If anyone else is interested, don’t hesitate to contact me on: DLS760@student.bham.ac.uk

I can't reply in more detail right now, but just wanted to say hello and thank you for providing this additional relevant context/information

 

[Jonathan Edwards]

believe patient and public involvement (PPI) is a useful exercise. It is not a requisite of my college that I include PPI in my study, however the benefits in doing so are clear.

Many thanks for the extra information, Diane. I am actually quite (pleasantly) surprised by this because I review grant proposals on a regular basis and pretty much all of them require a formal account of PPI plans in order to be even considered for funding. I may be old fashioned but I see that as a bureaucratic intrusion that will not make much difference to whether there is genuine engagement with patients of the sort yo u are clearly interested in. It is a box to tick.

As I indicated before, I think you could get a huge amount of information just from raising the questions you might want to ask on a thread here. You are likely to get scores of answers and they will be in a format where people can update their comments based on active discussion.

The two problems I see with a few interviews are that
1. The people interviewed are not going to be a representative sample - you can bet your shirt on that for all sorts of practical reasons.
2. Their answers will be heavily flavoured by trying to 'help' your research. Patients always do this, I can say from a lifetime experience of interacting with patients in research.

The advantage of S4ME is that people tend to be wise to these problems. There is a depth of understanding of research methodology here that you will find in very few academic units.

Research has to provide generalisable statements. An album of holiday snaps may be a good account of a past holiday but it tells us nothing about any other holidays. I am not clear how you can get generalisable information from a few interviews that are not going to go beyond the obvious. Some people spend hours on the net, others don't. Some find it a lifeline. Others use it for specific queries. And some stuff on the net is great and some stuff lousy.

The bottom line would seem to be impact on 'services' and I would be very interested to know what hypotheses one might raise as to what that could be -general or specific. We have e-learning modules from the MHS on ME/CFS; what matters is not so much how many people use the net as whether the modules are any good - and they don't seem that hot. A recommendation to provide more net-based services is only going to be valid if the stuff is any good - and there is a major risk of it being worse than useless.

Just some thoughts.

 

[Kitty]

I wonder if there's a useful question about people's access to the internet, and the impact on them of a lack of access?

I don't only mean people who haven't got a device that meets their needs or who can't afford broadband. There are significant numbers who have internet access in theory, but are only able to use it infrequently and / or for short periods due to severe illness.

I've never experienced severe ME/CFS, but I can imagine something of the isolation I might feel if I didn't even have access to an online community who all 'get it'.

If part of a research programmes looked at the challenges severely affected people face and any strategies they think could help them, it could have a practical application as well as an academic one. Even if only for ME/CFS charities and NHS websites!

 

[Binkie4]

I wonder if you can also take into account that people's skills at using the internet vary considerably which will impact how and what use they make of internet based resources.
Currently cannot process more thoughts but this should be considered from the outset.

 

[Hutan]

Thanks for the extra information Diane, and thanks for being here.

If part of a research programmes looked at the challenges severely affected people face and any strategies they think could help them, it could have a practical application as well as an academic one. Even if only for ME/CFS charities and NHS websites!

Yes, I was having a similar thought. Your scope feels to me to be too broad to come up with anything other than very general and probably not that helpful results.

I wonder if it is too late to narrow the scope? For example, you could pick an age group, children aged under 13, or young people aged 16 to 18, or people in their 20s .... And maybe restrict it to people who are essentially house-bound. Adults trying to earn a living working from home? Parents with ME/CFS and school-aged children. Each group will want and need different things from their internet use, and use it for different things.

For example, I think it would be interesting to know more about mostly housebound young people with ME/CFS trying to get a tertiary level qualification, using the internet. What helps, what is difficult? Is social interaction with fellow students possible? It's sort of niche but there would be a lot to find out. It is something that could be of interest to a lot of people though - young people (and older people) with ME/CFS considering doing a tertiary qualification, the families of young people, careers counsellors, tertiary education organisations offering distance education, disability support agencies.

Also, if you pick a narrower topic like that that really interests you, it could help set you up for a job related to it. If you did that topic I suggest, for example, organisations offering distance learning might be keen for you to help them fine tune their distance learning services.