Esther12
Senior Member
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One thing to re-emphasise is that the purpose of the research is to explore how participation in the PR forum may help members. The challenge is to identify appropriate scales and methods through which everyone feels they can communicate these benefits. In the open-ended questions this is easy - and allows opportunity to discuss any issue of relevance and importance to a member. In terms of using standardised validated scales - it is important to use accepted scales that can be used in the scientific report writing and eventual publication. For example, if participation reduces perceived loneliness than a standard measure of loneliness would be needed. The challenge is there is so many to choose from, a lot of differing opinions etc. Not going to be an easy task so thank you for all your comments
re validity: I'm not entirely confident that a lot of validated scales are truly valid measures of what they claim to be assessing. That's not to say that these scales are of no value, but their results can be misused, and there is probably more concern about this amongst CFS patients than most other patient groups.
With a lot of this stuff, you will probably come up against an unusual level of caution from CFS patients because of past problems. Even if you're keen to encourage patients being informed, and making their own decisions about how to respond to health problems, there's still concern about how others could try to interpret your findings, and concern about whether the judgements made about how patients should respond to ill health (what is adaptive and what is mal-adaptive) may be used as reasons to limit the real autonomy of patients.
eg of worry with the loneliness example: Could it be that lonelier patients are more likely to spend time posting, so there's a positive association here, even if posting leads to a reduced sense of loneliness? *checks post count* - I'm fine though! Having seen problems in the past, I'm instinctively cautious about the ways in which questionnaires are often used.
It does sound like a tricky area of research. Thanks for trying to get our views on it, and best of luck with it all.
PS: I'm afraid that I have not had a chance to read the paper posted, so all that I said above could be utterly redundant! Fingers crossed.
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