Research Participants needed for exciting short survey research: perceptions of recovery from ptsd

[HannahLW]

Hello! I am recruiting participants for some exciting research on PTSD for my MSc Psychology research dissertation and am looking for people to volunteer to take part. The aim of this research is to develop and validate a measurable scale for the perceptions of recovery from PTSD. The research is available to complete online and at your own pace and should take no longer than 20minutes. If you do choose to take part, you will be requested in two weeks to complete one of the short sections again. This is in order for me to validate this scale I am developing on the perceptions of recovery from PTSD. More information is provided following the link which will be posted shortly!

Your participation will be greatly appreciated! Thank you so much for your interest, time and participation!

Link: Dead Link Removed

 

[joeylittle]

@HannahLW - your link is up.

 

[shimmerz]

I am a little concerned with the 'black white' of your question about whether your case study subject was 'cured' of PTSD or not. I actually backed out of the survey because I couldn't answer it in a meaningful way. I mean, it isn't like that with PTSD as far as I am concerned. It's a journey, you know? It isn't like people who suffer through this reach a magical line that they can step over and say 'I am cured'. No. Not like that at all. Cured, to me, means I never have to worry about it again.

I consider myself much more 'cured' than I was even 2 years ago. My functionality is up. I am having memories, not flashbacks. I can tolerate more stress. But I am always going to have to worry about stress. Forever. Manage it, you know?

So I guess my question to you, before I can fill this out is.... what do YOU consider cured?

 

[HannahLW]

I am a little concerned with the 'black white' of your question about whether your case study subject...

Hello. I understand your concern and this is an area of confusion I am attempting to clarify further with this research. The idea is that you answer it based on what your personal perception of recovery is, and I can't tell you what that is or how I want you to answer. Recovery means different things to different people and is difficult to define - and this is what the scale attempts to identify alongside the way in which you answer the case study. The only advice I can offer is that you answer based on what recovery means to you.

 

[joeylittle]

The only advice I can offer is that you answer based on what recovery means to you.

Perhaps changing "cured" to "recovered" (or "recovered, by your own definition" or some such) would help participants.

Whether or not PTSD is 'curable' (in the medical sense) is unknown at this time. 'Curable' (using the colloquial meaning), it's much debated. Recovery, abatement, managed, etc. are all a little easier to understand.

(Just offering my opinion - leaving it or changing it, neither will affect whether the link stays posted here).

 

[EveHarrington]

The diagnosis question......everyone in the USA who has “complex” PTSD will still just check “PTSD” as we do not have an official complex diagnosis here.

 

[HannahLW]

Perhaps changing "cured" to "recovered" (or "recovered, by your own definition" or some such) would...

Thank You. The questionnaire uses the term 'recovered' throughout and avoided the term 'cured' purposefully.

It is noted that many have struggled with this question and highlighted its 'black and white' type questioning. However it is intended this way and the questions/concerns raised by participants will be recognised in the write up and for the purpose of further research. Hope this helps!

 

[HannahLW]

The diagnosis question......everyone in the USA who has “complex” PTSD will still just check...

That's okay, thank you for letting me know. Complex PTSD is included for those who have been given this diagnosis and can make the distinction - It was raised by a forum who wanted to allow people to make this distinction.

:)

 

[Justmehere]

The aim of this research is to develop and validate a measurable scale for the perceptions of recovery from PTSD.

Based on the questions about CBT in this study, I’m guessing the purpose of developing this scale is to be able to be used in the clinical setting to perhaps evaluate how people with PTSD view recovery themselves and how those views could be impacting recovery? Or how clinical professionals view it as well? Or what is the purpose of such a scale? I know this might be a silly question, I’m curious is all.

The questions asking to agree or disagree with “someone with a diagnosis of PTSD...” statements were strange to me. The type of question makes sense overall for this study, but they were so broad, it was hard to answer. Even more so, I believe a bias of the researcher’s perceptions (or perhaps the perceptions the forum members you worked with to develop this study) of PTSD *might* be leaking out into the study questions itself. I could be totally off though. This is just my perception of this study about perceptions... (lol)

Asking if someone agrees or disagrees with “someone with a diagnosis of PTSD can have the courage to integrate back into the community” - this reveals that this study is might be overly focused on very severe cases of PTSD.

What is to say someone with PTSD is not already integrated in the community to begin with? For example, 33-35 percent of ACTIVE duty law enforcement have PTSD in the US. They are integrated into the community. They have PTSD. But this study assumes all PTSD sufferers are already not integrated and it’s a question as to if people perceive if they will be integrated *back* into the community or not...

Another example of a statement asked for in terms of agreement or disagreement: “Someone with a diagnosis of PTSD... can make independent choices.”

Yikes! Who is going around thinking people with PTSD has no ability to make any independent choices? Is this a thing? Ok, as I realize this could be a thing, I guess a sufferer with very very severe learned helplessness might think they have no ability to make independent choices? Maybe....?

In my opinion, many/most of the questions leave out how high or moderate functioning sufferers are viewed (despite being the majority of sufferers) and more realistic and common problems in the perception of PTSD. They also ask to make broad sweeping generalizations of a very diverse population. But perhaps this will be really helpful to see what broad generalizations people make about sufferers.

I guess that brings me back to what will be the use of the scale that you hope to develop via this study?

I appreciate the effort and I hope the results are helpful in your work.

 

[HannahLW]

Thank you for your response. The aim of this research is highlighted in the debrief. The research overall attempts to discover what the perceptions of recovery are. The questions were formulated through the reading of previous researchers and their findings as well as many academic sources. It attempts to address everyone who may have suffered - mild or severe, hospitalised or living in the community. I understand that question sounds extreme, but many sufferers do live a large part of their life in hospitals and secure settings - I work in one. And your concern over the other question - yes, unfortunately for some that is a thing. I wanted to ensure the severity of some cases were included.

The scale is hoped to be validated so it can be used in future research by other researchers - whoever that may be and for whatever purpose.

The research also aims to compare the results across three groups - those diagnosed, clinical proffesionals, and a control group of neither.

Hope this helps. Please email if you have further questions :)

 

[Friday]

I

I would therefore like to emphasise that these questions will not be compulsory, and you may choose to omit your answer should you feel uncomfortable in answering.

Technical Problem : Your survey doesn't actually permit one to omit an answer, across most of the survey. It informs the participant that all lines must have one circle chosen, and it will not let one advance until an answer is selected. Whilst some of the pages have a neutral answer*, not all do, and even if optioned that's likely to skew your data, yes?

II

I was diagnosed with PTSD in the late 90s. I was highly symptomatic for 5+ years, virtually asymptomatic for a decade, and have been highly symptomatic -again- for the past 5+ years.

I couldn't answer most of the questions with any veracity even for myself, much less even begin to attempt for "someone with a diagnosis of PTSD". Try substituting any other qualifier (a woman, a soldier, an immigrant, a brunette) to see the difficulty. The scope is impossibly broad. Not only is PTSD a highly variable disorder : individually (scope/range/severity of symptoms & accompanying effects on an individual's life can vary greatly over the course of time); as a whole not all people with PTSD experience all symptoms much less to the same degree; nor is this disorder any predictor of personality or circumstance. Lastly? Whilst PTSD is fairly simple & straightforward, the effects of different traumas gets incredibly complicated, even before one adds in personality & circumstance. Adding all of those things together? Makes it an impossible task, to attempt to speak for everyone with PTSD.

III

One more person perplexed by the concept/usage of "Everyone will always / Everyone will never / Everyone shall". Have you ever in your life found anything -short of death- to be true for everyone/ no one/ always/ never? Even in a subgroup?

***

Taking a step back from being a confused respondent in a very difficult position? To be honest, the overall theme of the survey reads as if you're strongly advocating for greatly increased variety & standard of care, to facilitate far better outcomes, in line with having higher expectations overall. Which. Is. Outstanding... Truly. I couldn't agree more strongly that most people -especially if well supported... in ways that simply are not the case, at present in most places- can save, rebuild, or learn from scratch to lead -not just subsistence- but amazing and fulfilling lives uniquely suited to themselves. Bettering not only themselves but society as a whole for their being part of it.

I would suspect that you do a helluva lot of advocating for your patients/clients, and are running into the brick wall of lowest expectations. The problem I'm running into is that the impassioned hard sell that's needed to drive securing resources, allies, time, modalities, et al? Just doesn't translate as a respondent trying to answer forthrightly for myself, much less everyone with PTSD.

***

Hope this may have been helpful to you. Good luck in your research.

 

[Suzetig]

I started the questionnaire and abandoned it after the short case study. It feels heavily biased and I couldn't answer many of the questions - I'm surprised you didn't include psychotherapists in your list of professions working with PTSD but did include the role of licensed registered counsellor, given that counselling isn't a licensed profession in the uk.

Your case study was unrealistic in that the vast majority of young people with significant self harm barely get a service from CAHMS much less are hospitalised and without knowing much more about the young persons quality of life we couldn't possibly decide whether she had recovered.

I have no idea what the stuff about CBT was there for, it feels like you're trying to do two things at once - garnering views about CBT in a questionnaire focusing on recovery heavily biases the responses.

I guess I thought when you said you were looking for the perceptions of recovery in relation to PTSD from suffered, you would be interested in my perception of my own recovery not my views on "someone" with PTSD. It's a hugely missed opportunity to have sufferer/service user voice in the development of clinical services.