New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

July 22, 2013

Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising

globe-86244_640The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums provide them with valuable social and emotional support in their isolation and are a vital ‘lifeline’ for them. After all, the forums are a central part of Phoenix Rising’s work – they are the largest ME/CFS forums in the world, and how I found the organization in the first place – and the non-profit provides and manages these forums in the hope and belief that they are a valuable resource to the ME/CFS community.

But a lot of my time as a forum moderator is spent dealing with problems, grievances, and criticism. We work very hard to deal with those issues in order to make the forums a pleasant and supportive environment, but when so much of your time is spent handling the negative aspects, it’s not always easy to assess the big picture and get a reliable sense of whether the positives outweigh the negatives.

So I would love to know: just how valuable are the Phoenix Rising forums? Exactly what kind of benefits do they bring to the lives of our members? What types of conversations do our members hold on the forums, and what purposes do they serve? How can I demonstrate to potential funders and skeptical friends that the forums are a genuinely valuable resource for ME/CFS patients? How do our forums compare with other online health forums; what do we do well and what can we improve? Is there anything that our members are looking for that we don’t yet provide?

When I first met Dr Neil Coulson a little over a year ago, I soon realized that I had stumbled upon the perfect way to answer some of these questions.

Dr Neil Coulson

Dr Neil Coulson is Associate Professor in Health Psychology at the University of Nottingham, and he has been researching the experience of patients who access and use online forums for the past 8 years. His work has focused on understanding the positive ways that peer support can help individuals in times of need, and to date he has worked across a range of long term conditions including HIV/AIDS, various cancers, infertility and Huntington’s disease.

I met Dr Coulson when I was following up on a research student of his who had asked if she could post on our forums to invite our members to complete a survey for her research project. When I learned that her supervisor worked at the University of Nottingham, where I also work part-time, it was easy to read up on his research interests and contact him to assess where this research was coming from. Members – myself included – were understandably concerned and somewhat suspicious about a psychologist investigating ME/CFS, so I took the opportunity to meet with Neil. I took note of the various concerns that members had expressed, and raised them with him.

nottingham_uni_groupMy concerns evaporated rapidly as Neil and I discussed his research interests, and we quickly discovered that we shared a passionate interest in the value of online patient communities. As his homepage at the University explains, “Dr Neil Coulson is an international expert in the role of online support communities and healthcare. His work has demonstrated the important role online communities play in empowering patients as they attempt to cope with the challenges of long term conditions. In particular, he has published a number of pioneering papers which have explored the provision of social support between community members (e.g. Coulson, Buchanan & Aubeeluck, 2008).”

Neil isn’t the only researcher to have studied online support communities, but he does appear to be the only researcher in the world who has made this area his primary focus. It was clear to me from our conversations that he had a deep understanding of the issues, and of the revolutionary potential of online communities for healthcare support. The happy coincidence that he is based within a mile of my own home seemed an opportunity too good to pass up! We began to explore the possibilities for a research project…

The research to date

The only published research that I am aware of regarding the use of online forums by ME/CFS patients is a a Norwegian study which found that “individuals suffering from CFS/ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions”, although the limited range of conditions used for comparison and the methodology of searching for forums through Google, using the Norwegian language, seem to offer rather limited evidence for this conclusion: only 12 forums were identified, 2 of which were ME forums and 2 of which had only 1 member between them. The 12 forums studied were identified by looking at the first 10 Google search results for a list of 11 conditions which the authors say are relatively common in the young adult population: CFS/ME, fibromyalgia, whiplash, electromagnetic hypersensitivity, diabetes, cancer, anxiety, depression, drugs and alcohol dependency, neck and back conditions and chronic pain. The resulting table shows that the researchers only found 2 forums, other than the ME forums, with over 500 members, but they did find 2 large ME forums with 4,000 members between them. Dividing these numbers by the estimated number of patients in the population gave them a figure for ME/CFS of 50.5 forum members per 1,000 patients (5%); 10 times that of any other forum they found.

While the paper’s speculation as to the reasons for this apparently high rate of forum use rightly noted that “individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments”, realized that “many patients also report feeling dissatisfied and having negative experiences in dealing with health services”, and wondered whether there might be “something specific about those suffering from CFS/ME and their experiences within the traditional healthcare system which drives them to seek alternative sources of support and information”; the authors stopped short of concluding that these observations might suggest a major inadequacy in the healthcare provision and approach to treatment available to ME/CFS patients.

Instead, they wondered whether the problem might be that “many CFS/ME sufferers are ‘action prone’; with a tendency for lifelong traits of over-activity”, suggested that “Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits”, and worried that “strong in-group identity within discussion forums may lead users away from ‘real life’ social support, therapeutic engagement and effective, evidence-based interventions”…by which they presumably mean those same ‘evidence-based interventions’ that drive ME/CFS patients “to seek alternative sources of support and information”. They also noted with concern the finding of Friedberg et al, in a study of 32 active and 135 inactive members of one support group, that “active members [of the support group] reported greater symptom severity and less illness improvement than inactive members or dropouts” – and tellingly they didn’t question whether this might indicate that the sickest are more likely to use such support groups, rather than the support groups themselves causing their illness severity and lack of improvement.

It’s hard not to feel that behind this paper lies a fear – or perhaps an assumption – that the use of online support groups by ME/CFS patients is likely to be harmful to patients, and the authors give the appearance of being concerned about the threat that forums pose to the model of ME/CFS that they presumably support. That impression seems consistent with the authors’ note that they “wish to thank Professor Simon Wessely…for valuable comments in the process of this study” and their acknowledgement of financial support from the Institute of Psychiatry, King’s College London and the NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust.

The paper concludes that “more knowledge on the type and quality of information provided in online forums is urgently needed”, suggesting that a critique of the information presented by ME/CFS forums is considered desirable by these researchers. In this context, an exploration of the positive and negative experiences of our own forum by an expert in online health communities would seem to be a useful contribution to the research literature.

The Big Idea

As I chatted with Dr Coulson, my head began to spin as I contemplated the potential benefits to Phoenix Rising, and to the wider community, of a research project exploring the value of the Phoenix Rising forums. We would all gain a better understanding of just what goes on in our forum discussions and what purposes those discussions might serve. We could explore the experience of forum members and find out what members value most about our forums – and importantly, what we can improve. High-quality, free, independent research into our services! We would hopefully end up with published evidence regarding the benefits our forums provide, which could be extremely valuable for promoting the forums and applying for funding. We would benefit from the insights of a (the?) world-leading researcher in the study of online health communities. And the perspective of the researchers seemed highly likely to enhance the quality of the literature on online forums for ME/CFS.

Question MarksOf course, there were (and are) still many concerns to address as well. How can we safeguard the privacy of our members and ensure that the research fairly represents the spread of activity on the forums while at the same time not intruding on the private and sensitive discussions that take place? What engagement would forum members be able to have in discussing the details of the research process? Could we ensure that members would not be quoted without their permission? Would members be properly consulted about the nature of the questions they would be asked, and have an opportunity to make suggestions about the study design?

Happily, Neil was able to reassure me on all these concerns, demonstrating remarkable understanding and sensitivity to the issues of privacy and consultation. Both Neil and Anna are keen to engage openly with members about these issues, and members will have an opportunity to raise their concerns and discuss the details of the research on the discussion thread for this article.

And so, with the support of Phoenix Rising, Dr Coulson and Anna Maddison have offered to undertake a two-part research project that seeks to explore and understand the role of peer-to-peer online support for individuals living with ME/CFS. I hope that forum members will be as excited as I am about this project, and embrace the opportunity to explore the value of our forum experience and improve the services that Phoenix Rising provides. Over now to Neil and Anna to introduce their plans for the research…

A two-part plan

The project is divided into two parts with each part being led by a separate researcher. What follows is a brief overview together with a little background about the researcher. We think it is important that you know who is involved and why they are working in this area and that you feel part of the process.

Part 1 – exploring the conversations that take place online

Anna Maddison

My name is Anna Maddison and I am currently studying for my Masters in Health Psychology at the University of Nottingham. Previous to this I studied my undergraduate degree in Psychology at the University of Dundee. My interest in ME/CFS arose about three years ago after I suffered severely from post-viral fatigue syndrome, and the following year my mother was diagnosed with ME. From these experiences of living with a similar illness myself and watching my mother struggle I came to understand the frustration surrounding the lack of concrete science and the unpredictable fluctuations the illness can take. I am fortunate that my academic background has provided the skills necessary to research and understand a lot about ME, and to now have the opportunity to carry out my own research in an area related to the patient experience of this illness.

The research I will be undertaking will be exploring the topics of conversation that arise between members of the forum. With the support and guidance of my supervisor Dr Coulson, together with Mark Berry from Phoenix Rising, I hope to identify the main areas of discussion and gain a valuable insight into how online peer support may function. I am keen to identify the positive ways through which individuals can help each other through forum engagement.

I am open to questions about this research.  If any should arise please feel free to email me at lwxalma@nottingham.ac.uk, or post on the forum discussion thread for this article.

Part 2 – listening to the experiences of forum members

Dr Neil Coulson

Hi, my name is Neil and I have been working for the past 8 years researching online forums for individuals and families affected by long term conditions. I am passionate about peer support and I hope through this work to be able to identify and describe the positive (and negative) experiences that members of the Phoenix Rising community have in relation to forum engagement. Later this summer (Sept-Oct) I will be uploading a link to a web-based survey that aims to listen to your own experiences of the forum. I will be asking a mix of open-ended questions as well as more ‘tick box’ style questions in order to build up a rich insight into your online experiences and to help us understand why peer support can be so valuable. In addition, this survey is being used as an opportunity to listen to your thoughts about how things are going thus far on the forum and whether you have any suggestions for improvement going forward.

Like Anna, I am very happy to chat to anyone who has any questions and my email is neil.coulson@nottingham.ac.uk

And finally…

We appreciate the challenges of living with this condition and our research is not intended to comment in any way about the illness per se – but rather to explore how helping each other online can make a difference. The findings from both parts of the project will be made available in summary form through the Phoenix Rising website and we hope you will welcome this opportunity to engage with us in this very worthwhile piece of research.

 

 

How You Can Help

Phoenix Rising is a registered 501 c.(3) non profit.  We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we’d love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

donate

 

109 comments

{ 109 comments… read them below or add one }

Dr Neil Coulson October 8, 2013 at 7:42 am

Hello everyone,

I wanted to provide an update on progress and to seek your input into the study development.

By way of an update

Since I last posted I have been working on the development of the online survey that will form one part of the two part project (outlined in earlier posts). I am at the point where I am deciding what measures to include in the online survey and for this I thought it would be helpful and transparent to seek your input. The survey thus far includes:

- background details about respondents
- use of the PR forum (e.g. joining, no. of messages)
- motivations for using the PR forum
- open ended questions about online experiences of the PR forum

THEN

I intend to use a series of validated measures to tap into various cognitive factors and relate these to some of the variables included above. From chatting to Mark I understand that there is a range of experience and familiarity with some of these measures and I thought it would be helpful to list those that I am proposing to include (in addition to those above) but to seek suggestions from the membership of any other measures that people might feel useful. At the end of the day I would like to examine whether participation in the PR forum is related to any measures of well-being (broadly defined) and this has informed my choice of measures so far.

Measures to be included

CFS Illness Perception Questionnaire
HADS – a measure of anxiety and depression
Life Orientation Test – a measure of optimism
Brief Cope – a measure of coping

AND SUGGESTIONS FOR ANY OTHER IMPORTANT MEASURES??????

At this point I wondered if any members with views on any other measures that might be relevant could suggest them to me? I have ideas but I would really like to engage with you and find out from your own past experiences any measures that you have worked with, read about or you are aware of that would be useful. I am also conscious of survey length so will have to make a judgment call if several are suggested but it is important to me to include measures that are validated, are understandable to members and the wider academic community and which tap into salient aspects of the CFS/ME experience (and which may be related to participation in the PR forum). I'd welcome your thoughts – either on this forum or directly via email if that is easier (neil.coulson@nottingham.ac.uk).

Once confirmed – I then apply for ethics approval from my Institution and then when granted we can go live with the survey.

I look forward to hearing from you and many thanks in advance – I truly appreciate your time.

Best wishes to all,

Neil

peggy-sue October 8, 2013 at 7:53 am

There are, I believe some problems with the HADS questionnaire (and other depression q.s too) – I read some folks' very astute comments in a thread here not long ago…

things such as; "Do you enjoy … as much as you used to?"

cannot be answered without proper interpretation.

We cannot do the things we used to enjoy, because of being sick – so the honest reply is "yes" which gets interpreted as "depressed" – not taking into consideration that we don't enjoy them simply because we cannot do them any more.

ps;) I don't have "cogs". I have a brain. What "cognitive factors" were you considering?

(I'm allergic to Cognitive "science". I am not a dualist.)

MeSci October 8, 2013 at 8:09 am


Dr Neil Coulson

Hello everyone,

I wanted to provide an update on progress and to seek your input into the study development.

By way of an update

Since I last posted I have been working on the development of the online survey that will form one part of the two part project (outlined in earlier posts). I am at the point where I am deciding what measures to include in the online survey and for this I thought it would be helpful and transparent to seek your input. The survey thus far includes:

- background details about respondents
- use of the PR forum (e.g. joining, no. of messages)
- motivations for using the PR forum
- open ended questions about online experiences of the PR forum

THEN

I intend to use a series of validated measures to tap into various cognitive factors and relate these to some of the variables included above. From chatting to Mark I understand that there is a range of experience and familiarity with some of these measures and I thought it would be helpful to list those that I am proposing to include (in addition to those above) but to seek suggestions from the membership of any other measures that people might feel useful. At the end of the day I would like to examine whether participation in the PR forum is related to any measures of well-being (broadly defined) and this has informed my choice of measures so far.

Measures to be included

CFS Illness Perception Questionnaire
HADS – a measure of anxiety and depression
Life Orientation Test – a measure of optimism
Brief Cope – a measure of coping

AND SUGGESTIONS FOR ANY OTHER IMPORTANT MEASURES??????

At this point I wondered if any members with views on any other measures that might be relevant could suggest them to me? I have ideas but I would really like to engage with you and find out from your own past experiences any measures that you have worked with, read about or you are aware of that would be useful. I am also conscious of survey length so will have to make a judgment call if several are suggested but it is important to me to include measures that are validated, are understandable to members and the wider academic community and which tap into salient aspects of the CFS/ME experience (and which may be related to participation in the PR forum). I'd welcome your thoughts – either on this forum or directly via email if that is easier (neil.coulson@nottingham.ac.uk).

Once confirmed – I then apply for ethics approval from my Institution and then when granted we can go live with the survey.

I look forward to hearing from you and many thanks in advance – I truly appreciate your time.

Best wishes to all,

Neil

I would like to see some questions on practical benefits obtained from the forums. Some people have received valuable advice on obtaining practical help, access to welfare benefits, ideas for disability aids, etc., and not least information on the latest research and tips on diet, supplements, etc., that have produced actual physical improvement, not just improvement in perceptions. People may have been able to increase their activity, to get out and about after being bedbound/housebound, even perhaps start working again. That's the sort of thing the vast majority of us are aiming for – real, tangible health improvement – and some of us have obtained it.

We also get the chance to participate in actions that may improve the (lack of) help that is offered in the 'real world', e.g. petitions and other forms of lobbying – again, trying to achieve practical goals, not just improve mental well-being (which for many of us is pretty good anyway!).

Dr Neil Coulson October 8, 2013 at 8:19 am

Thanks – excellent suggestion. I have some open ended questions to explore how the forum has helped – but might be worth asking specifically about the practical benefits. Great idea – ta much, Neil.

MeSci October 8, 2013 at 11:12 am


Dr Neil Coulson

Thanks – excellent suggestion. I have some open ended questions to explore how the forum has helped – but might be worth asking specifically about the practical benefits. Great idea – ta much, Neil.

Thought of another – people notify each other of clinical trials, and a lot of people are clamouring to take part in these, and succeed in getting onto them, thus potentially both helping themselves directly and helping others by furthering scientific understanding.

Thinking about the benefits that this community brings in such a focused way makes it seem incredible to me that anyone could think that such communities could be a bad thing!

Valentijn October 8, 2013 at 11:20 am

First and foremost, thank you so much for engaging with us and actually asking :thumbsup:

Dr Neil Coulson

CFS Illness Perception Questionnaire

I can't say I like this questionnaire. It's sole purpose seems to be to proving that what we believe about the causation of our illness, and how long it will last, somehow affects our level of disability. Even the website for that questionnaire says: "Illness perceptions have been used to explain . . . . disability in chronic fatigue syndrome . . . ."

At best it shows correlation (maybe I think my illness will last for years because it has lasted for years?), but it's usually interpreted with a heavy spin in favor of a psychogenic model. So while this questionnaire could probably be used appropriately, it seems like it's almost always used in a biased and unscientific matter.

HADS – a measure of anxiety and depression

HADS does have some strengths, primarily that it's designed for use with sick people and has a relatively high cut off point to account for illness symptoms. However, it is designed for people with relatively acute and simple problems being treated in a hospital setting. Such patients do not usually resemble ME/CFS patients at all, and we get extra points due to having a complex and largely untreated illness where we might have little or no assistance with daily activities.

1) Simple vs Complex. We have a complex illness, which involves a lot of diverse symptoms, which can limit us in various ways, both cognitively and physically, whereas hospital patients are more likely to have a single limitation. Hence the following questions are likely to attribute excessive points toward a depression diagnosis, even though the cause is purely physiological:
I still enjoy the things I used to enjoy
I feel as if I am slowed down
I can enjoy a good book or radio or TV programme

I can't do the things I used to do, so how could I possibly enjoy doing something I don't do? I enjoy doing different things now, which still incorporate social and intellectual and fun and outdoor activities. I've just had to drastically restructure what I do and how I do it – which to me does not seem indicative of depression. I used to read voraciously, but now it gives some sort of messed up brain-crash if I spend a couple days reading a novel. I can handle research papers, but the good books are few and far between. TV can be hard to process now, unless it's something I've seen before.

2) Treated vs Untreated. We are usually not being treated for many of our issues, such as pain, unlike someone with an acute issue in a hospital. This will likely impact on questions such as:
I can sit at ease and feel relaxed
I feel cheerful
I look forward with enjoyment to things

3) Hospital vs Home. We are not getting the assistance which we would be in a hospital, such as being assisted as needed. This results in struggling just to handle basic activities, such as getting to the bathroom or getting something to eat. Hence some questions seem rather inappropriate, such as:
I have lost interest in my appearance
Worrying thoughts go through my mind

Wouldn't you be worried if you couldn't take care of yourself? Would you put much effort into applying make-up when you struggle just to get to the bathroom? If you were in a hospital and being assisted with whatever disability you have, then no problem! But what about patients who are alone at home and can't do a load of laundry without triggering a crash?

4) Acute vs Chronic. We've usually been ill and disabled for years. This might cause depression on its own, but this questionnaire won't be able to distinguish it from physical and cognitive ME/CFS symptoms, because it already equates depression with physical and cognitive limitations.

All of that being said, the HADS probably can be used appropriately with ME/CFS patients, if the usual cut off point is ignored and we are compared to other groups of patients with recognized non-psychological chronic and complex illnesses as a reference point. This has been done with MS patients in the past, but I believe the current fad is to use their HADS score to "prove" that MS patients all have psychological problems. Using HADS on ME/CFS patients in an appropriate (ME-sensitive and non-chaotic) medical environment would also help to offset some of the problems seen in applying it to untreated ME patients at home.

A few papers taking a critical look at the HADS, the last two specifically in the context of CFS:
http://share.eldoc.ub.rug.nl/FILES/root2/1997/valistoft/Spinhoven_1997_Psychological_Medicine.pdf
http://share.eldoc.ub.rug.nl/FILES/root2/2012/HospAnanD/Coyne_2012_J_Psychosom_Res_2.pdf
http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0008/64979/FullReport-hta10370.pdf
http://www.tandfonline.com/doi/abs/10.1080/1354850310001604568#.UlQ7qRAvzox

Life Orientation Test – a measure of optimism
Brief Cope – a measure of coping

These two look great.

AND SUGGESTIONS FOR ANY OTHER IMPORTANT MEASURES??????

If you want to determine prevalence of mental health problems, I think the SF-36 is quite good since it makes a clear distinction between physical and psychological causation of limitations. The physical and social parts also seem quite good. However the combining of 4 of the subscales into a general "mental health" subscale can be problematic, because that includes (I think) the vitality subscale, which is extremely impacted by physical illness, and the social functioning subscale which also takes quite a hit due to being housebound and cognitively disabled.

MeSci October 8, 2013 at 12:34 pm


Valentijn

HADS does have some strengths, primarily that it's designed for use with sick people and has a relatively high cut off point to account for illness symptoms. However, it is designed for people with relatively acute and simple problems being treated in a hospital setting. Such patients do not usually resemble ME/CFS patients at all, and we get extra points due to having a complex and largely untreated illness where we might have little or no assistance with daily activities.

1) Simple vs Complex. We have a complex illness, which involves a lot of diverse symptoms, which can limit us in various ways, both cognitively and physically, whereas hospital patients are more likely to have a single limitation. Hence the following questions are likely to attribute excessive points toward a depression diagnosis, even though the cause is purely physiological:
I still enjoy the things I used to enjoy
I feel as if I am slowed down
I can enjoy a good book or radio or TV programme

I can't do the things I used to do, so how could I possibly enjoy doing something I don't do? I enjoy doing different things now, which still incorporate social and intellectual and fun and outdoor activities. I've just had to drastically restructure what I do and how I do it – which to me does not seem indicative of depression. I used to read voraciously, but now it gives some sort of messed up brain-crash if I spend a couple days reading a novel. I can handle research papers, but the good books are few and far between. TV can be hard to process now, unless it's something I've seen before.

2) Treated vs Untreated. We are usually not being treated for many of our issues, such as pain, unlike someone with an acute issue in a hospital. This will likely impact on questions such as:
I can sit at ease and feel relaxed
I feel cheerful
I look forward with enjoyment to things

3) Hospital vs Home. We are not getting the assistance which we would be in a hospital, such as being assisted as needed. This results in struggling just to handle basic activities, such as getting to the bathroom or getting something to eat. Hence some questions seem rather inappropriate, such as:
I have lost interest in my appearance
Worrying thoughts go through my mind

Wouldn't you be worried if you couldn't take care of yourself? Would you put much effort into applying make-up when you struggle just to get to the bathroom? If you were in a hospital and being assisted with whatever disability you have, then no problem! But what about patients who are alone at home and can't do a load of laundry without triggering a crash?

4) Acute vs Chronic. We've usually been ill and disabled for years. This might cause depression on its own, but this questionnaire won't be able to distinguish it from physical and cognitive ME/CFS symptoms, because it already equates depression with physical and cognitive limitations.

All of that being said, the HADS probably can be used appropriately with ME/CFS patients, if the usual cut off point is ignored and we are compared to other groups of patients with recognized non-psychological chronic and complex illnesses as a reference point. This has been done with MS patients in the past, but I believe the current fad is to use their HADS score to "prove" that MS patients all have psychological problems. Using HADS on ME/CFS patients in an appropriate (ME-sensitive and non-chaotic) medical environment would also help to offset some of the problems seen in applying it to untreated ME patients at home.

Hmmm…I could shorten those depression and anxiety questions for myself to:

"Are you depressed?" (No)
"Are you anxious?" (Sometimes, but much less since adopting leaky-gut diet and supplements and since pensions matured!)

But as others have said, not just here but also elsewhere, the answers can be misconstrued when given by people with fatiguing/physically-disabling illnesses. Not only can we not do some things any more due to lack of energy, there are many that we can't do any more due to lack of money!

Dr Neil Coulson November 10, 2013 at 9:20 am

Thank you so much for your comments about the various scales. I certainly take your points on board and i am finding this incredibly useful in terms of identifying relevant, meaningful and engaging scales to include in the survey.

Helen November 10, 2013 at 1:00 pm

@ Dr Neil Coulson
Hello Neil,

I have a question that you might have answered already, but I haven´t been able to find it. What is the aim of the study , described as short and concrete as it has to be in official documents? Is there any official presentation of the study that we could read somewhere? I think it would be of great value before giving comments that might be of some help.

Thank you so much for giving attention to our group, and I hope you will find what a great forum Phoenix Rising is, thanks to all that taking part behind and in the forum.

Helen

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