Open UK participants wanted for research on motivations for complementary and alternative treatments in those with chronic illness

C

CAM_research

Established Member
Hello,
As part of my psychology Masters at Oxford Brookes University I'm conducting research into the motivations for complementary and alternative medicine use in those with chronic illness. One of the subcategories I'm particularly looking at are those with ME/CFS.

If you're a UK resident aged 18+ and you'd like to participate, the survey takes 10-20 minutes and can be accessed here https://brookeshls.co1.qualtrics.com/jfe/form/SV_4Vd4CYsLzLY4o3Y

You don't need to use complementary treatments or even have any chronic illness to take part.

The research has received ethics board approval, and more details can be found on the participant information sheet on the link above.

Thank you
 
CAM_research said:
Hello,
As part of my psychology Masters at Oxford Brookes University I'm conducting research into the motivations for complementary and alternative medicine use in those with chronic illness. One of the subcategories I'm particularly looking at are those with ME/CFS.


You don't need to use complementary treatments or even have any chronic illness to take part.

Thank you
Click to expand...

A psychology Masters a Oxford and what are you researching without complementary treatments and chronic illness? Just motivation?
Can you explain what you are really researching? I don't trust psychologists when they research ME/CFS.
 
I have done the survey. I think it's fine. It is pretty basic about what kinds of CAM you have used, whether you plan to use them, whether you got side effects and whether they were helpful. And a few questions about your chronic illnesses and general state of health. Also whether you trust CAM and standard medical care and which you would turn to first for acute and chronic illnesses. It wasn't trying to psychologise us I think.

The financial bit is about how much you spend on CAM, and your general financial situation as in whether struggling to manage or can afford extras. It doesn't ask what your income is.
 
Turtle said:
A psychology Masters a Oxford and what are you researching without complementary treatments and chronic illness? Just motivation?
Can you explain what you are really researching? I don't trust psychologists when they research ME/CFS.
Click to expand...

Hi,

As I'm sure you know psychology covers a vast array of areas. My main interest in this specific area comes from my own experiences with chronic illness, plus my background as a former pharmacist working for the NHS, which has contributed to an interest in health psychology, amongst other things.

The questions are based upon previous research into motivations for complementary and alternative medicine use, which has categorised motivation in various specific ways, and my analysis aims to see if these categories hold (or not) in those with chronic illnesses, and potential factors that might play into this. I'm also interviewing people to discuss their experiences, although I've just finished recruiting for that aspect.

In terms of ME/CFS I wanted to include this group specifically as it is often felt to be 'difficult to treat' and I am aware that many people with it, and similarly difficult to treat illnesses, can often end up trying many things to try to reduce their debilitating symptoms.

Was there anything specific you were worried about in the study? Feedback is always useful.

Thank you to those who have participated, it's very much appreciated.
 
I have just done the survey, there were parts I struggled to respond accurately to as I am covering thirty years of ME.

Also I was unsure how to rate outcomes for the experiences that felt good whilst happening, but had no lasting impact.

Also I missed out several things I tried just once, either because they were just happening around me or I was helping out a friend training or the session was a gift.

Further I suggested some activities had adverse outcomes because undertaking them triggered PEM, though this is potentially unfair as it might have with the right support been possible to structure them without triggering PEM.

The majority of my experience was some twenty five years ago when I was at the try anything and everything stage. This was also when I was still working and could afford it.
 
CAM_research said:
Was there anything specific you were worried about in the study? Feedback is always useful.
Click to expand...

The only question I deliberately didn't answer was something about if I work hard I will succeed. It's a weird thing to be asked completely out of the blue, but especially for people who may be too ill even to brush their teeth with any vigour. It felt as if it needed a "This is so far removed from my world I actually wondered if it was a mistake" option.
 
Kitty said:
The only question I deliberately didn't answer was something about if I work hard I will succeed. It's a weird thing to be asked completely out of the blue, but especially for people who may be too ill even to brush their teeth with any vigour. It felt as if it needed a "This is so far removed from my world I actually wondered if it was a mistake" option.
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I think I recognised that one from some sort of anxiety or depression questionnaire. Totally inappropriate for asking people with disabling chronic illnesses.
 
Hi @CAM_research

I did the survey, i can see the usefulness of researching why people use complimentary medicine... but i didnt see many questions related to motivation really, i'm a bit slow mentally today so perhaps i just missed it.

Generally i thought it was well presented and the questions were fairly easy to understand. All surveys always have questions where one thinks 'well i dont know, it depends', & in this case for those i just put the middle answer.

I do have a concern though... if the questions about 'being your own boss' etc are designed to allow correlations to be found, there is a major problem with this one
Whether at work or in my private life, what I do is mainly determined by others.

I'm too ill to work sadly, but if i were employed by someone then in my work life what i did would be mainly determined by others, but in my private life i always have a choice so would not be mainly determined by others. - The truth would be entirely opposite end of the scale for each domain... how can you answer such a question when it is both completely true and not true at all?

The range of questions seemed designed to measure how much agency one feels in ones's life, and how that correlates to use of CAM?

If so i worry that those particular questions will not give an accurate set of data. I just answered whatever the middle answer was. I imagine many will do the same, but thats not really an accurate answer if the true answer would be 'not at all' for private life & 'completely' for work life.

Feeling that your private life is determined mainly by others suggests a lack of agency & a sense of not being able to do anything about that, which is problematic & unhealthy (with exceptions of course such as caring 24/7 for a disabled child, but even then your spending time caring is a choice because you love them so 'determined by' perhaps needs clarifying.

But having what one does at a job mainly determined by others, is normal. Who goes to work and controls what they do? we all do the tasks were told to in the way the boss wants. Thats what being employed, is. Surely?

So it concerns me mixing them together like that.

It concerns me that a conclusion such as 'people who have chronic illness and feel their lives are determined by others, tend to turn to CAM'. I mean they might but i worry those questions wont give an accurate result and false conclusions may be drawn.


Not in any way trying to be negative, just pointing out where results will be unrelaible. Sorry if that waffly repetittive, i dont have energy to edit/summarise
 
Thank you all for the feedback. I totally see your points, and in many ways some of the questions are there because of the points you raise, not because I expect them to be fully representative, or to give simple results without wider interpretation. The 'locus of control' questions seem to have been picked up on in particular, and I agree they are potentially problematic scales, particularly in the context of chronic illness, or the excellent example about being a carer above, etc. Again, this links with previous research into CAM use and they are there from this perspective. It's a tricky balancing act of answering a research hypothesis in a very complex multifaceted area whilst not wanting to create the world's longest questionnairre (especially given the limitations of those being asked to fill it in). There are many potential limitations with this (and any) study, and they will be kept in mind throughout.

I go through exactly the same cynical thought processes when I'm filling in someone else's survey, and am no less cynical of my own :)
 
CAM_research said:
Thank you all for the feedback. I totally see your points, and in many ways some of the questions are there because of the points you raise, not because I expect them to be fully representative, or to give simple results without wider interpretation. The 'locus of control' questions seem to have been picked up on in particular, and I agree they are potentially problematic scales, particularly in the context of chronic illness, or the excellent example about being a carer above, etc. Again, this links with previous research into CAM use and they are there from this perspective. It's a tricky balancing act of answering a research hypothesis in a very complex multifaceted area whilst not wanting to create the world's longest questionnairre (especially given the limitations of those being asked to fill it in). There are many potential limitations with this (and any) study, and they will be kept in mind throughout.

I go through exactly the same cynical thought processes when I'm filling in someone else's survey, and am no less cynical of my own :)
Click to expand...
thanks for your response, Good to know you're keeping the limitations in mind.

I hear you about having to make tough decisions about the number of questions to include, that must be a significant challenge.

But, i'm risking labouring this particular point because i think its critical - Internal vs external locus of control is so important to our wellbeing IMHO, so I can see how that could be relevant to someone's choice to use CAM. And how exploring it could shine interesting light on people's motivations for doing so.

So i wonder... How can a question that combines perceptions of locus of control in the work and private spheres, possibly be capable of giving an accurate answer on whether someone's LOC is external or internal?

There are very few people who are self employed (& therefore able to determine their own decisions in the work domain). There are even fewer who are employed by someone else & yet are still able to determine for themselves what they do at work. Indeed lack of obligation to do what someone else dictates, is part of the legal definition of being self employed for tax purposes in the UK!

Therefore, since the majority of people are employed rather than self employed, and the vast majority of them have little to no say in what they do while they are at work, then the majority of responders' answers must, necessarily, indicate an external locus of control.

An external locus that is normal & standard for an employed status. It cannot be changed except by becoming self employed instead.

So by dint of the question combining both work and private life, you are heavily & inaccurately biasing the response towards the idea that responders have an external locus of control. Therefore no accurate conclusions can possibly be drawn, since it would be that way for everyone who is employed by someone else. Whether they use CAM or not. So the results will wrongly imply that their LOC is further towards external than it actually is.

Thats not 'cynicism', its just about accuracy.

So regarding there being a limit on number of questions... what is the point in even including a question that is predictably going to give inaccurate results?

The answer to whether a person feels what they do at work is determined by someone else is going to be 'of course', in the vast majority of cases, regardless of whether they generally feel an external LOC in their lives generally.

It is almost impossible for someone who is employed by someone else to have any significant personal locus of control while at work. So why even include it?

For future study design surely it would be better to consider having the question be about responders' private lives... since that is the only area that people have any significant choice over where their locus of control is coming from. That way you will actually find out whether their general sense of LOC leans more towards external & internal.

You will also be able to avoid the result being polluted by the confusion between those who are actually able to work and those who dont. And by those who have jobs which have more vs less micromanagement and/or zero hours contracts etc.

It might also be an idea, to enable some mitigation for this particular limitation... to tally up the data for the LOC questions using all 3 of the questions in that section, and also using just the 2 questions, without the problematic one. I suspect the 2 results may lead to different conclusions. I'd have thought that the 'im my own boss' & 'fate' questions would be sufficient on their own, without the confounding/biased question.

I do think it'd be interesting to have insight into whether people who have a more external LOC use more CAM, which is why i'm spending my very limited energy writing this.

It's an attempt to be helpful... i hope my tone isnt being heard as critical or negative, i'm quite intrigued by my own use of CAM & why it has fluctuated so much over the yrs, it doesnt seem to be simply related to resources/how ill i was/scientific education gained from places like this forum etc. Its made me think about it all a lot & i look forward to the results of the study... but I hope you'll consider what i've said in more than a cursory way.
 
JemPD said:
thanks for your response, Good to know you're keeping the limitations in mind.

I hear you about having to make tough decisions about the number of questions to include, that must be a significant challenge.

But, i'm risking labouring this particular point because i think its critical - Internal vs external locus of control is so important to our wellbeing IMHO, so I can see how that could be relevant to someone's choice to use CAM. And how exploring it could shine interesting light on people's motivations for doing so.

So i wonder... How can a question that combines perceptions of locus of control in the work and private spheres, possibly be capable of giving an accurate answer on whether someone's LOC is external or internal?

There are very few people who are self employed (& therefore able to determine their own decisions in the work domain). There are even fewer who are employed by someone else & yet are still able to determine for themselves what they do at work. Indeed lack of obligation to do what someone else dictates, is part of the legal definition of being self employed for tax purposes in the UK!

Therefore, since the majority of people are employed rather than self employed, and the vast majority of them have little to no say in what they do while they are at work, then the majority of responders' answers must, necessarily, indicate an external locus of control.

An external locus that is normal & standard for an employed status. It cannot be changed except by becoming self employed instead.

So by dint of the question combining both work and private life, you are heavily & inaccurately biasing the response towards the idea that responders have an external locus of control. Therefore no accurate conclusions can possibly be drawn, since it would be that way for everyone who is employed by someone else. Whether they use CAM or not. So the results will wrongly imply that their LOC is further towards external than it actually is.

Thats not 'cynicism', its just about accuracy.

So regarding there being a limit on number of questions... what is the point in even including a question that is predictably going to give inaccurate results?

The answer to whether a person feels what they do at work is determined by someone else is going to be 'of course', in the vast majority of cases, regardless of whether they generally feel an external LOC in their lives generally.

It is almost impossible for someone who is employed by someone else to have any significant personal locus of control while at work. So why even include it?

For future study design surely it would be better to consider having the question be about responders' private lives... since that is the only area that people have any significant choice over where their locus of control is coming from. That way you will actually find out whether their general sense of LOC leans more towards external & internal.

You will also be able to avoid the result being polluted by the confusion between those who are actually able to work and those who dont. And by those who have jobs which have more vs less micromanagement and/or zero hours contracts etc.

It might also be an idea, to enable some mitigation for this particular limitation... to tally up the data for the LOC questions using all 3 of the questions in that section, and also using just the 2 questions, without the problematic one. I suspect the 2 results may lead to different conclusions. I'd have thought that the 'im my own boss' & 'fate' questions would be sufficient on their own, without the confounding/biased question.

I do think it'd be interesting to have insight into whether people who have a more external LOC use more CAM, which is why i'm spending my very limited energy writing this.

It's an attempt to be helpful... i hope my tone isnt being heard as critical or negative, i'm quite intrigued by my own use of CAM & why it has fluctuated so much over the yrs, it doesnt seem to be simply related to resources/how ill i was/scientific education gained from places like this forum etc. Its made me think about it all a lot & i look forward to the results of the study... but I hope you'll consider what i've said in more than a cursory way.
Click to expand...

Thank you. The locus of control questions are from a pre-existing validated scale which was chosen for its brevity, but as you point out, this potentially comes at a cost to the nuance and finer details that more questions might provide about beliefs relevant to specific spheres of influence. It's a pretty crude tool, but has been used in other health research as a general gauge.

Locus of control is a personal belief, rather than a matter of circumstance, but the internal frames of reference used when assessing LoC beliefs do vary between individuals. So if someone is in a circumstance where they feel they have little control, such as a dictatorial job or societal situation, this might impact their LoC beliefs, however, research on LoC conceptualises it more like a personality trait (and perhaps this might influence the type of job someone might choose to do, or how readily they feel able to leave that job even if it seems controlling).

Interestingly most previous research has shown higher CAM use in those with an internal LoC, i.e. a higher belief that that life events can be controlled by active behaviour.

I am definitely considering your points, and will dwell on them further, these were just my initial thoughts based on my previous research. I think you've raised some valid points about the phrasing of work/personal life, although I'm not sure about their use biasing towards an external LoC in anyone who's employed by someone else. An interesting potential future research project though! The correlations and causations of LoC are complex and need much more research. Its current conceptualisation is undoubtedly overly simplistic, and the questions perhaps conflate LoC (more like perceived autonomy) with actual autonomy, depending upon how they are interpreted.
 
Appreciate your reply @CAM_research, it was most interesting. I will ponder it further when i have more energy.

My initial thoughts on the fact thats its been used in lots of research before are that this doesnt really count for that much. Especially in CFS research where so called 'validated' tools/questionnaires that get used repeatedly, are, frankly, garbage. I appreciate that sounds really arrogant, but much smarter people than i have similar views on them. This forum is full of threads that discuss this.

But i appreciate that as a researcher one has to start somewhere, and of course i may be wrong. But food for thought at any rate. And useful i hope when considering better tools for the future.

The rest of your post was very interesting, re perceived autonomy & actual autonomy and the use of CAM being higher in those with a more internal LOC, thats really interesting. My mind went off in about 6 different directions when i read that. Pity i dont have the energy to discuss further of follow those mental threads/arrows.

I dont suppose i'll be able to afford to spend much more of my energy budget on this, i have so much going on at the moment, but i do look forward to your results and further posts :)
 
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