Your Help needed with a PTSD study

All too often I feel like clinicians try to put us in a box. They’ve read that PTSD means x, y, or z and so they approach our recovery according to the books. But we’re not books, are we? We’re human beings who are all vastly different and whose healing journeys all require a certain amount of customization. If only somone would listen to things from our point of view instead of attempting to make us see things from their point of view.

The truth is, there are always clinicians trying to help us in an organic, holistic, and respecful of our opinion way — we just have to find them. Take Pam Phillips, for example. She’s conducting a PTSD study based on our written testimonial and experiece of the PTSD recovery process. I always feel so appreciative when a clinician tries to understand things from our survivor perspective, so today I’ve invited Pam to share her project with you in case you’d like to lend your voice to helping educate those who try to help us – so they can help us better! I interviewed Pam with a few key questions…

1.     Why are you doing the study?PTSD, Survivors Speak, PTSD recovery

It took a while to get to this point (I am currently a PhD candidate in nursing at the University of South Carolina). As an instructor in the associate degree nursing program at a community college in North Carolina, I saw firsthand how frequently domestic violence occurred among my students. Obviously, domestic violence, also known as intimate partner violence (IPV), affected my students’ progress in nursing school. Moreover, I was worried about their safety and the safety of other students. When I started my graduate studies, I planned to concentrate my research on IPV. A nurse whose career has been an inspiration to me is that of Jacqueline Campbell, PhD, RN of Johns Hopkins University. She pretty much started this field of research, and her studies and writings have shaped the way victims of domestic violence are treated in emergency departments and by law enforcement throughout the United States.

At USC, the professors who mentored me had strong psychiatric backgrounds and recommended that I broaden my research interest into victimization. One component of victimization is trauma, a life-threatening or terrifying event that an individual has seen or experienced. Victimization is the broader term used to define an injurious act to an individual or community; the act may or may not have included physical injury or violence. According to U.S. Bureau of Justice Statistics, victimization can include physical and sexual injury as well as damage to property. From there it was a short leap to posttraumatic stress disorder (PTSD), a very powerful anxiety disorder emanating from exposure to any number of traumatic events such as military combat, personal victimization, violence, child abuse, manmade and natural disasters, accidents, and so forth. I was fascinated to find out that regardless of etiology (i.e., the trauma or event causing the PTSD), all victims of PTSD exhibit similar responses and symptoms.

During my research, I became interested in PTSD recovery when I discovered that there was little information on what recovery actually was. I was intrigued to find that the Committee on Treatment of Posttraumatic Stress Disorder of the Institute of Medicine in 2008 issued a report encouraging mental health clinicians to examine the efficacy of treatments and goals for resolving PTSD. When the Institute of Medicine (IOM) committee examined 2,771 studies of PTSD treatments, the committee discovered that only 90 studies met strict criteria for evidence-based medicine standards. The committee concluded that studies conducted over the almost 30 years during which PTSD has been accepted as a valid psychological diagnosis and defined as a mental illness “do not form a cohesive body of evidence about what works and what does not”. The committee particularly encouraged clinicians to focus on defining the concept of recovery, concentrating on symptom reduction, removal of the PTSD diagnosis, and end-state function. I had difficulty believing that millions of dollars were being spent annually treating PTSD, when we really did not know enough about the concept of recovery. I decided then that I would interview individuals with PTSD about how they got better.

 2.     What do you hope to accomplish with it?

Although the IOM report has mobilized large-scale efforts to quantify treatments and standardize delivery of treatment protocols, PTSD recovery, particularly the individual’s struggle to attain acceptable end-state function, remains a concept that has been largely unexplored. The IOM committee found that no generally accepted and used definition existed which adequately defined the concept of “recovery” in PTSD. It is quite possible that actions or events regarded as therapeutic by PTSD victims may be lacking in current mental health treatment protocols. It is also possible that some treatment protocols and therapies may actually hinder recovery. Thus, the specific aim of this study is to answer the following question: What is the basic psychosocial process that men and women undergo in recovering from PTSD?

3.     How will the data be used?

After I identify the process by which people recover from PTSD, I hope mental health clinicians will be able to shape more appropriate and effective treatments and interventions for PTSD. It seems like common sense to ask people how they got better rather than assume that a treatment is useful because symptoms may decrease or disappear. A lot of PTSD research has looked only at whether distressing symptoms decreased. I am more interested in a person’s baseline function after experiencing PTSD. Is life good? Are the symptoms still bothering you? Can you work? What or who helped you to feel better? What didn’t work at all?

4.     Where people can find out more/get involved + can it be done anonymously

The study website is at http://www.ptsdrecoverystudy.com/  The website is open only to participants. If you are interested, drop me an email at ptsdrecovery@gmail.com and I will enroll you in the study. I ask that participants complete some demographic information and write a narrative of their recovery journey. I have included some questions that can help a writer to get started but the narrative can be constructed in any way.  The study is strictly confidential; you do not have to supply your real name. You can even get an email address at Hotmail or Gmail to obscure your identity from me.

Also, if you are interested in IPV, here is a link to the Jackie Campbell’s website at Johns Hopkins: http://www.jhsph.edu/faculty/directory/profile/1230/Campbell/Jacqueline_C.

She is really the expert on domestic violence.

Here is another link your readers may find useful: the PILOTS worldwide database of PTSD literature compiled by the National Center for PTSD: http://www.ptsd.va.gov/professional/pilots-database/pilots-db.asp

Thanks for the chance to talk about this! I would love to have some of your readers join my study.

Pam Phillips

Brief Bio:

AB, Journalism, University of North Carolina, Chapel Hill, 1973.

Associate Degree Nursing, Asheville-Buncombe Technical College, Asheville, NC, 2000.

BS, Nursing, Winston-Salem State University, Winston-Salem, NC, 2002.

MS, Nursing Education, UNC-Greensboro, Greensboro, NC.

PhD Nursing (currently attending), University of South Carolina, Columbia, SC.

Currently a nursing faculty member at Blue Ridge Community College in Hendersonville, NC.

 
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