Jump to content
pinarustel

Seeking interview participants for research -- may I quote you?

Recommended Posts

pinarustel

Dear members of the Surviving Antidepressants community, 

 

I am a PhD candidate in Social Work and Sociology at the University of Michigan, studying the processes of lay knowledge production around psychiatric drug withdrawal. I am interested in the ideas and perspectives of SA members on illness, health, and healing. To be more specific, my aim is to trace the processes through which people learn what they know on withdrawal, coin new terms to explain what they are going through, or develop new techniques to cope with the difficulties involved.

 

Part of my research consists of observing online spaces like this forum, where people share what has worked for them in their withdrawal journey. I am also interviewing people about their accounts of medication use and withdrawal.

 

A while ago I contacted Alto Strata to ask for her permission to observe the interactions on this website. I was particularly interested in the possibility of quoting some user posts in the written products. We agreed that I would have to introduce myself to community members first, answer the questions they might have, and ask for individual members' permission to use their words.

 

Based on this conversation, I am planning to write about the content of selected threads descriptively ("this is an issue that community members are discussing", "these are the points of contention", "these are the things that some people find helpful"). I will message members if I am interested in directly quoting something they have written. I will NOT use your words unless I have your permission. In the written products, I can refer to you as “a forum user” or use your forum handle, depending on your preference. 

 

Feel free to ask me any questions about the study, and give me feedback if you feel so inclined. I will have a separate post about interviews, but feel free to contact me if you are interested in being interviewed as well. Thank you!

 

My university profiles here (sociology) and here (social work)

Share this post


Link to post
Share on other sites
Altostrata

Thank you, Pinar.

 

If you have any questions about Pinar's project, please post them here.

Share this post


Link to post
Share on other sites
Erell

Hi!

Pinarustel  : I think this is a very very important work To do, and that every way might be interesting To use To get everybody knows this sanitary scandal

I totally encourage you!!! 

 

I'm curious: did you experiment WD ? What made you interested in this subject?

 

I did myself a lot of researches and have many articles on my computer  : they are all in French, so I don't know if it could interest you...Feel free To ask!

 

I won't propose you To be interviewed because of my poor English.

 

 

Finally, I wanna highlight the importance of Being very précautious : we all are here hyper sensitive, traumatized, going through hell sometimes. I think it is really important that you keep that in mind.

 

Have a great day!

Share this post


Link to post
Share on other sites
Gridley

Pinarustel,

 

Welcome to SA.  Sounds like a good project.

Share this post


Link to post
Share on other sites
Frogie

Welcome Pinarustel:

 

 I think it’s wonderful what you are doing.

 

 I hope you will be able to make some sort of difference with your research.

 

Take care,

 Frogie xx

Share this post


Link to post
Share on other sites
JackieDecides

I am glad to read this; sounds like you are doing valuable work. 

Share this post


Link to post
Share on other sites
pinarustel
On 9/27/2019 at 5:41 AM, Erell said:

Hi!

Pinarustel  : I think this is a very very important work To do, and that every way might be interesting To use To get everybody knows this sanitary scandal

I totally encourage you!!! 

 

I'm curious: did you experiment WD ? What made you interested in this subject?

 

I did myself a lot of researches and have many articles on my computer  : they are all in French, so I don't know if it could interest you...Feel free To ask!

 

I won't propose you To be interviewed because of my poor English.

 

 

Finally, I wanna highlight the importance of Being very précautious : we all are here hyper sensitive, traumatized, going through hell sometimes. I think it is really important that you keep that in mind.

 

Have a great day!

 

Thanks everybody for your comments!

 

Erell, I would love to talk to you. English is not my first language either, and I happen to speak a little French. I'm really out of practice but this would be a good reason to work those muscles! I will send you a message about the interview and the articles you've mentioned.

 

How I got interested in this topic:

At the beginning, I had a very broad question that I wanted to follow - something like  "How do people talk about and interpret their mental health issues/distress?". I was interested in tracing how we develop the language for talking about depression and anxiety, and how we share our experiences with friends, family, and sometimes strangers. Do we use a biomedical framework? Do we develop our own vocabularies and metaphors? etc. This question, however, was super broad and I needed something more specific.

 

So I was spending a lot of time in online patient groups and reading the conversations. Then I realized that an important part of these online conversations were shaped around medication use, and people were helping each other reduce/come off their medications. I think I also saw Laura Delano's "The Withdrawal Project", and Icarus Project's "Harm Reduction Guide to Coming off Psychiatric Medications" around that time. I was intrigued by the level of detail, and by the fact that these guides were based, to a great extent, on people's lived experiences. Oh, around that time, there was also a NYT article on withdrawal... Anyway, I got increasingly interested in this topic and my question became more specific: Now I wanted to explore how people were talking about withdrawal, developing tapering strategies, reporting back their experiences to the online community. In short, a qualitative study of how people generate knowledge and navigate withdrawal. I think the connection is still there to the initial question, but now things are more specific and grounded.

I don't have first-hand experience of withdrawal. I have used SSRIs (escitalopram) before for short periods of time and didn't have problems when I tried to come off. I've greatly benefited, however, from psychodynamic psychotherapy in handling past trauma and attachment issues. I have a therapist that I like and trust, and I usually reach out to her when things get very overwhelming. 

 

Share this post


Link to post
Share on other sites
pinarustel

Dear members of the SA community,

 

I am a PhD candidate in Social Work and Sociology at the University of Michigan, studying the processes of lay knowledge production around psychiatric drug withdrawal. I am interested in the ideas and perspectives of SA members on illness, health, and healing. To be more specific, my aim is to trace the processes through which people learn what they know on withdrawal, coin new terms to explain what they are going through, or develop new techniques to cope with the difficulties involved. Last week I posted another announcement on SA about quoting user posts with permission.

 

I am also seeking interview participants! These can be Skype/Zoom/phone interviews, or, if you are located near me and open to meet in person, we can arrange a meeting. I can also interview two people at once if the presence of another person with lived experience would make you feel more comfortable. In short, I would like to do this on your terms, in a format that would make you feel comfortable. Interviews usually take about an hour. For accuracy and completeness, I would like your permission to tape-record the interview. As a token of appreciation for the effort you have taken, you will receive a $25 gift card.

 

My main questions will focus on how you have learned what you know about withdrawal, and how you are using this knowledge to support others. You will be able to skip any questions and end participation at any time. In order to protect your privacy, your name or other personal identifiers will not be included in project reports. 

 

If you are interested, please send me a message. I can provide more information and answer your questions. You can also post your questions in the comments below!

 

Thank you! 

Share this post


Link to post
Share on other sites
Erell

Hi pinarustel !

Thanks for your explainations! Hope you won't use SSRI's anymore ;)

 

Feel free To send me a message : all I can do To highlights  and explain our  situation Will make me happy!

 

Have a Nice day!

Share this post


Link to post
Share on other sites
Altostrata

Hi, Pinar. No need to post another topic, it's best to keep discussion of your research in one place.

 

You might also look around in the Introductions forum and introduce yourself through the personal messaging to people you'd like to interview.

Share this post


Link to post
Share on other sites
scott4y2hott4y
On 9/26/2019 at 9:22 PM, pinarustel said:

Dear members of the Surviving Antidepressants community, 

 

I am a PhD candidate in Social Work and Sociology at the University of Michigan, studying the processes of lay knowledge production around psychiatric drug withdrawal. I am interested in the ideas and perspectives of SA members on illness, health, and healing. To be more specific, my aim is to trace the processes through which people learn what they know on withdrawal, coin new terms to explain what they are going through, or develop new techniques to cope with the difficulties involved.

 

Part of my research consists of observing online spaces like this forum, where people share what has worked for them in their withdrawal journey. I am also interviewing people about their accounts of medication use and withdrawal.

 

A while ago I contacted Alto Strata to ask for her permission to observe the interactions on this website. I was particularly interested in the possibility of quoting some user posts in the written products. We agreed that I would have to introduce myself to community members first, answer the questions they might have, and ask for individual members' permission to use their words.

 

Based on this conversation, I am planning to write about the content of selected threads descriptively ("this is an issue that community members are discussing", "these are the points of contention", "these are the things that some people find helpful"). I will message members if I am interested in directly quoting something they have written. I will NOT use your words unless I have your permission. In the written products, I can refer to you as “a forum user” or use your forum handle, depending on your preference. 

 

Feel free to ask me any questions about the study, and give me feedback if you feel so inclined. I will have a separate post about interviews, but feel free to contact me if you are interested in being interviewed as well. Thank you!

 

My university profiles here (sociology) and here (social work)

How do I contact you directly 

Share this post


Link to post
Share on other sites
Shep
Posted (edited)
20 hours ago, pinarustel said:

How I got interested in this topic:

At the beginning, I had a very broad question that I wanted to follow - something like  "How do people talk about and interpret their mental health issues/distress?". I was interested in tracing how we develop the language for talking about depression and anxiety, and how we share our experiences with friends, family, and sometimes strangers. Do we use a biomedical framework? Do we develop our own vocabularies and metaphors? etc. This question, however, was super broad and I needed something more specific.

 

Have you read any of Dr. Thomas Szasz's writings? He addresses the concept of rhetoric and language within the "mental health" system. 

 

Szasz has written over 30 books and his work was instrumental in deinstitutionalization. If you haven't come across his writings and you're interested in reading them, you may want to start out with the book  Thomas Szasz - Primary Values and Major ContentionsThis book unpacks several key themes in Szasz's writings and is co-written by an attorney and a professor of rhetoric and communication (which is great for unpacking psychiatry's way of speaking and language).  This book was written to be used as a text for introduce students to Szasz's works without requiring they read the dozens of books he's written. 

 

Since some of us (though not all of us) with lived experience are getting an education in anti-psychiatry, you will sometimes read about terms like "depression" and "anxiety" being a metaphor for trauma or other non-medicalized issues and at times, political issues. The concept of "mental illness" as a myth and a metaphor is also used in these kinds of conversations. For this reason, Szasz's work can be very helpful. 

 

You may also be interested in these articles off the Mad in America (MiA) site in relation to how language is used, written in two parts:

 

Don’t Harm Them Twice: When the Language Surrounding Benzodiazepines Adds Insult to Injury (Part I)

 

Don’t Harm Them Twice (Part II): What Can Be Done?

 

 

Edited by Shep
fixed link

Share this post


Link to post
Share on other sites
Felkers

Regular Doctors so need training on SSRI's. Over the 20 years I was on this stuff, I had 3 different Doctors and none of them would believe I was dependent on the drug and couldn't stop taking it. None of them believed there were withdrawal issues. None of them thought taking it for decades would cause me any problems. None of them would help me get off of it.

Here I am at age 61, off of Prozac for 17 months  with no help from a doctor and still feeling some lingering symptoms of withdrawal.

 

What keeps be going is having read that the average person feels normal again after 100 weeks so I hope to be normal again next spring.

 

Thanks,

Felkers

 

On 9/26/2019 at 4:22 PM, pinarustel said:

Dear members of the Surviving Antidepressants community, 

 

I am a PhD candidate in Social Work and Sociology at the University of Michigan, studying the processes of lay knowledge production around psychiatric drug withdrawal. I am interested in the ideas and perspectives of SA members on illness, health, and healing. To be more specific, my aim is to trace the processes through which people learn what they know on withdrawal, coin new terms to explain what they are going through, or develop new techniques to cope with the difficulties involved.

 

Part of my research consists of observing online spaces like this forum, where people share what has worked for them in their withdrawal journey. I am also interviewing people about their accounts of medication use and withdrawal.

 

A while ago I contacted Alto Strata to ask for her permission to observe the interactions on this website. I was particularly interested in the possibility of quoting some user posts in the written products. We agreed that I would have to introduce myself to community members first, answer the questions they might have, and ask for individual members' permission to use their words.

 

Based on this conversation, I am planning to write about the content of selected threads descriptively ("this is an issue that community members are discussing", "these are the points of contention", "these are the things that some people find helpful"). I will message members if I am interested in directly quoting something they have written. I will NOT use your words unless I have your permission. In the written products, I can refer to you as “a forum user” or use your forum handle, depending on your preference. 

 

Feel free to ask me any questions about the study, and give me feedback if you feel so inclined. I will have a separate post about interviews, but feel free to contact me if you are interested in being interviewed as well. Thank you!

 

My university profiles here (sociology) and here (social work)

 

Share this post


Link to post
Share on other sites
Tbug
On 10/2/2019 at 12:34 PM, pinarustel said:

Dear members of the SA community,

 

I am a PhD candidate in Social Work and Sociology at the University of Michigan, studying the processes of lay knowledge production around psychiatric drug withdrawal. I am interested in the ideas and perspectives of SA members on illness, health, and healing. To be more specific, my aim is to trace the processes through which people learn what they know on withdrawal, coin new terms to explain what they are going through, or develop new techniques to cope with the difficulties involved. Last week I posted another announcement on SA about quoting user posts with permission.

 

I am also seeking interview participants! These can be Skype/Zoom/phone interviews, or, if you are located near me and open to meet in person, we can arrange a meeting. I can also interview two people at once if the presence of another person with lived experience would make you feel more comfortable. In short, I would like to do this on your terms, in a format that would make you feel comfortable. Interviews usually take about an hour. For accuracy and completeness, I would like your permission to tape-record the interview. As a token of appreciation for the effort you have taken, you will receive a $25 gift card.

 

My main questions will focus on how you have learned what you know about withdrawal, and how you are using this knowledge to support others. You will be able to skip any questions and end participation at any time. In order to protect your privacy, your name or other personal identifiers will not be included in project reports. 

 

If you are interested, please send me a message. I can provide more information and answer your questions. You can also post your questions in the comments below!

 

Thank you! 

Hi,

My desire is that more research is done on antidepressant withdrawal but that the medical community would actually listen and believe what patients tell them regarding their withdrawal experiences. Unfortunately doctor's listen to the drug manufacturers. They, of course, lose millions of dollars if we stop taking their product. So instead, they make new drugs to "help" with symptoms, but instead just add to the problem. Most doctors are just "practicing medicine" and throw any and all drugs at the patient and hope one sticks. I mean it is almost impossible to find a current or past antidepressant user who has only ever taken one antidepressant.  It's madness! The side effects are usually not even explained by most doctors but instead hold the "buyer beware" mindset and it all falls on the patient.  So, if this project of yours will actually help this field of medicine, I'm all for it. 

Share this post


Link to post
Share on other sites
Gemma92

Hello. I agree with what Tbug said. The medical community needs to recognize withdrawal symptoms and how disabling they can be. I was on Lexapro for only 2 months and stopped it cold turkey. I had a horrible reaction and was immediately in withdrawal but had no idea what was happening to me because my doctor NEVER mentioned tapering or withdrawal. After researching the drug, I expressed my concerns to her, she told me I was not on it long enough for it to cause any problems. She also told me that when I go to pick up my next prescription, not to read the paper that lists the all the warnings and side effects. She told me to just throw it out. And so I ended up in the psychiatric ward confused and frightened. I was in withdrawal and didn't know it. And for the next 8 months, I was switched around on more drugs that just made everything worse. I was labeled psychotic! These drugs don't cure chemical imbalances, they create them!

Share this post


Link to post
Share on other sites
Shep
On 10/2/2019 at 3:34 PM, pinarustel said:

For accuracy and completeness, I would like your permission to tape-record the interview. As a token of appreciation for the effort you have taken, you will receive a $25 gift card.

 

Pinarustel, you may not be familiar with the level of financial corruption that's deeply embedded in the mental health system. The fact that you're compensating people, even at this small level, will mean that ethically you'll have to disclose the fact that your research participants were paid. If this isn't disclosed, you'll risk anyone criticizing your work making this known in a way that could show your work as biased. This will not help us, although that may not be the real intent of your research, as is the case in a lot of academic work. 

 

Also, should you decide to criticize the mental health system in your paper for its level of financial corruption, your own research is tainted from doing the same thing that you're criticizing others for doing. 

 

I really don't think you understand how much people want to get their stories out there. You don't need to taint your research by paying participants. People want their voices heard. 

 

The payment we want is for this psychiatric oppression to stop. 

Share this post


Link to post
Share on other sites
Erell
4 minutes ago, Shep said:

 

Pinarustel, you may not be familiar with the level of financial corruption that's deeply embedded in the mental health system. The fact that you're compensating people, even at this small level, will mean that ethically you'll have to disclose the fact that your research participants were paid. If this isn't disclosed, you'll risk anyone criticizing your work making this known in a way that could show your work as biased. This will not help us, although that may not be the real intent of your research, as is the case in a lot of academic work. 

 

Also, should you decide to criticize the mental health system in your paper for its level of financial corruption, your own research is tainted from doing the same thing that you're criticizing others for doing. 

 

I really don't think you understand how much people want to get their stories out there. You don't need to taint your research by paying participants. People want their voices heard. 

 

The payment we want is for this psychiatric oppression to stop. 

 

 

Totally, deeply agree with Shep.

Share this post


Link to post
Share on other sites
scott4y2hott4y

I have sent you a private message.

Share this post


Link to post
Share on other sites
pinarustel

Thanks everybody for your contributions to this thread. Apologies for the delayed response, I was dealing with health issues this week.

I'm going to try and address your comments one by one.

Share this post


Link to post
Share on other sites
pinarustel
On 10/4/2019 at 7:43 AM, Shep said:

 

Pinarustel, you may not be familiar with the level of financial corruption that's deeply embedded in the mental health system. The fact that you're compensating people, even at this small level, will mean that ethically you'll have to disclose the fact that your research participants were paid. If this isn't disclosed, you'll risk anyone criticizing your work making this known in a way that could show your work as biased. This will not help us, although that may not be the real intent of your research, as is the case in a lot of academic work. 

 

Also, should you decide to criticize the mental health system in your paper for its level of financial corruption, your own research is tainted from doing the same thing that you're criticizing others for doing. 

 

I really don't think you understand how much people want to get their stories out there. You don't need to taint your research by paying participants. People want their voices heard. 

 

The payment we want is for this psychiatric oppression to stop. 

 

 

Shep, thank you for your comment.

 

I disclose in the methodology section that I compensate interviewees for their time and effort. This is made possible by way of small research grants through the University and is common practice, as long as you write openly about it. The amount is very small and considered non-coercive by the Institutional Review Board at the University.

 

I am receiving mixed feedback on this. For instance, earlier in the process, someone criticized me because they assumed I was not compensating people. They thought I either had to include interviewees as co-authors (which would not be possible with 50-60 interview participants), or compensate them for their time. Their reasoning was that people in withdrawal support groups were already doing the "unpaid and unacknowledged work” of caring for each other/healing; and that I should be offering something, however small, in order to not perpetuate the same pattern of exploitation.

 

Some people accepted the gift cards but emphasized that they were not doing the interview for the compensation. One person thanked me and said they were going to donate the money (the equivalent of the gift card) to BIC - Benzodiazepine Information Coalition. I can include these different reactions in the final version of the methods section, including your comment & criticism, so that readers develop a sense of the range of responses to this practice. 

 

I understand your concern about findings being discarded as biased, and I would like to talk more about this if you are available. In comparison to the financial power of the industry, what I offer (and my entire budget) is very small, if not totally insignificant. But I deeply care about the transparency of the work that I do, and I want it to represent your point of view as well. I look forward to discussing this further.

Share this post


Link to post
Share on other sites
Shep
Posted (edited)
17 hours ago, pinarustel said:

I am receiving mixed feedback on this. For instance, earlier in the process, someone criticized me because they assumed I was not compensating people. They thought I either had to include interviewees as co-authors (which would not be possible with 50-60 interview participants), or compensate them for their time. Their reasoning was that people in withdrawal support groups were already doing the "unpaid and unacknowledged work” of caring for each other/healing; and that I should be offering something, however small, in order to not perpetuate the same pattern of exploitation.

 

Some people accepted the gift cards but emphasized that they were not doing the interview for the compensation. One person thanked me and said they were going to donate the money (the equivalent of the gift card) to BIC - Benzodiazepine Information Coalition. I can include these different reactions in the final version of the methods section, including your comment & criticism, so that readers develop a sense of the range of responses to this practice. 

 

Thank you for your explanation, Pina. I'm sure you are getting mixed results, as you're drawing from a wide pool of very diverse people. Sounds like you're covering your bases with your disclosure. 

Edited by Shep
fixed typo

Share this post


Link to post
Share on other sites
UnfoldingSky

Hi pinarustel,

 

I don't wish to be interviewed but, I wanted to ask if you might include a particular question of interviewees? 

 

One thing a number of us who have had bad reactions to antidepressants and a withdrawal syndrome coming off of them have been finding is that we develop sensitivities to certain things, such as certain foods or medications.   Doctors tend not to know much of anything about this so this leaves people vulnerable when needing medical treatment, as they won't be able to predict very well how well they can tolerate it.  I was wondering if you would be able to ask interviewees if they have experienced issues with foods, pills, other sorts of medical treatments like say anesthetics, alcohol, etc...after having been harmed by antidepressants, so that we can have a sense of how common this may be, in order to work towards building awareness of this problem.

 

Thank you for your consideration in this matter and I hope that your research goes well!

Share this post


Link to post
Share on other sites
Altostrata

@pinarustel this topic was also posted to our Facebook group. Some people there are interested in talking to you. See

 

 

Share this post


Link to post
Share on other sites
RachelSusan

Pina, Please contact me privately and I will be happy to spend whatever time you need answering your questions to the best of my ability.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...