Messages

[It Was My Decision": How Adults Make Sense of withdrawing from psychiatric drugs after experiencing adverse effects, a qualitative online focus group study]

Below please find a request for participants for a qualitative study investigating patients experiences of withdrawing from psychiatric drugs from which they suffered adverse effects. Please note the views expressed in this study are those of the researcher and the institution. 

Kizzie

It Was My Decision": How Adults Make Sense of withdrawing from psychiatric drugs after
experiencing adverse effects, a qualitative online focus group study

Introduction

The aim of the study is to seek out the experiences of adults that have withdrawn from psychiatric drugs after experiencing adverse effects. The study is being conducted by Dawn Davis at Glasgow Caledonian University and Dr Martha Canfield. The study is being carried out by Dawn Davis as a part of an educational course for the award of DPsych Counselling Psychology.Before you decide whether or not to take part, it is important for you to understand what participation in the study will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please contact us at the address below if you would like more information. 

Why is this study important?

Many people experience psychological distress, and mental health difficulties. There are many ways of offering support and alleviating this. Psychiatric drugs, prescribed by psychiatrists or GPs is one way, and many people find this helpful. However, many people experience adverse effects, and there is now an increasing view that prescribed drugs should not be the first line of treatment. In fact, there are psychiatrists that have found that psychiatric drugs can cause more harm than good.

Indeed, due to an increase in information on withdrawing from psychiatric drugs, the importance of a tapered and controlled withdraw is now more understood.  However, not all prescribers or the public are aware of this.  For instance, calls for a national dedicated support helpline for withdrawing was refused.  Due to this, there is a need for research to support a societal, legislative and health understanding of people who take prescribed psychiatric drugs own experiences.  Hence, this study proposes to explore adults' experiences of those that choose to withdraw from their prescribed psychiatric drugs because of these adverse effects, using online focus groups.   

This research has the potential to provide new insights into the experiences of people prescribed psychiatric drugs.  The findings will add to the current knowledge.  The findings can help advocate for those that choose to withdraw from their prescription drugs, because of adverse effects.  It is hoped the findings of the study can be shared with the public, legislators and mental health professionals to raise awareness of the experiences of people who take prescribed psychiatric drugs.
 
What will I have to do if I take part?

The research will be conducted through using small 'focus groups' of 4-6 people, who will discuss their experiences in an online meeting lasting up to 60 minutes.  If you are interested in taking part, you will be invited to give consent by completing a consent form which will be emailed to you. Those that require more information are invited to email that request to the researcher, who will respond by email, or with a telephone call at your convenience, depending on your preference.  If interested in taking part, you will be asked to sign a consent form through an emailed link.   

Once consent has been completed you will be offered a choice of focus group times and will need to send an email back confirming your preference.  We will be using the Zoom online application. You do not need to download any software; we will provide a link in the email invite, and you click to join the group opting to use through your internet browser.
 
The session will be audio recorded only using Zoom and the data will be saved directly onto a university restricted folder. We will ask you to not to share any identifying information about yourself during the session, such as your address, or full name. You are welcome to use a synonym name if you wish, or we can change your name for you.
   
The researcher will have some prompt questions, but it is expected that the discussion will be led by those taking part. A debrief email will be sent to you after the focus group. You are also invited to contact the researcher afterwards if you have any queries, thoughts, or concerns.
   
Do I have to take part?

No. You decide whether or not you want to take part. You can leave the focus group session at any time. If you wish to have your data withdrawn from the study, you can request it without giving a reason by contacting Dawn Davis, if this is done before the session is transcribed and anonymised, normally within two weeks after the focus group. Withdrawing from the study will not affect your medical care or legal rights.  If you decide to withdraw ahead of that deadline, any of your data contributions will be removed permanently from any transcript, within a two to three days and will not be used in any of the study. 

What are the possible risks with taking part?

All studies involve some level of risk and inconvenience. The possible risks involved with this study are data breaches, possible emotional discomfort and/or psychological distress from the discussion. To mitigate these risks, we ask only those that are not currently in any crisis (such as intense anxiety and/or severe mood instability) and are psychologically and physically resourced to take part, and ethical guidelines for psychologists conducting research are adhered to throughout, including how your personal data and the research data and handled. We would ask, if you decide to take part, that you have access to a safe, secure, and private location which can be used for the duration of the focus group. We will also make a group agreement at the start to make sure that everyone is giving their consent.
 
If you have any concerns about the possible risks of taking part in this research you can contact the researcher Dawn Davis, Ddavis301@caledonian.ac.uk or the research supervisor Dr Martha Canfield, martha.canfield@gcu.ac.uk. Your data will be held securely and confidentially unless there is a situation where the researcher needs to escalate any information to a relevant authority to protect you or another from harm.   

What are the possible benefits of taking part?

We can't promise the study will help you personally. However, some might find participating in focus groups rewarding, especially sharing similar experiences with others. You could benefit from having your experiences (which may not have been validated by others within the process of prescription and withdrawal of medication) heard, validated and taken note of. The results might offer insights that can be used to support the rights of those people who take prescribed psychiatric drugs. For instance, the findings could support calls for the national withdrawal helpline. The findings could also support a call for alternatives to psychiatric drugs as the first line of mental health treatment. Your experience could help raise awareness among mental health professionals in how the prescription of psychiatric drugs are experienced leading to improved care and support for these current people who take prescribed psychiatric drugs. It could prompt health professionals to consider these experiences before prescribing psychiatric drugs to new services users.  The findings could demonstrate to the health professional the importance of empowering a patient to make an informed decision about their treatment. Findings from your participant could also raise awareness in those working therapeutically with clients, supporting clients that are having adverse drug effects and who are considering withdrawing from psychiatric drugs. 

Your participation could help inform/empower other people who access mental health services. The findings could help raise awareness of having an informed choice ahead of taking prescription psychiatric drugs.  The findings could support those who are currently experiencing adverse effects and could highlight they are not alone if choosing to withdraw from them.  The findings could support a better understanding of the decision-making process when considering withdrawal.  Your participant could highlight some of the negative effects of prescribed psychiatric drugs and support the call for advocacy to support more informed decision making.

What happens when the study stops?

Written reports of the study findings will be available from the researcher Ddavis301@caledonian.ac.uk and the GCU library. 

What if there is a problem?

If you are concerned about your participation in the study and would like to speak with someone, please contact GCU HLS Ethical psychology committee, hlsethicspswah@gcu.ac.uk. 

What will happen to the information given during the study?

This section will explain what happens to the information you give during the study. The information collected will be anonymised. All those taking part will be asked not to use their real names to keep personal identifying information, such as home address, confidential during the group discussions.  A recording of group discussion will be made.  It will be transcribed and anonymised. The transcriptions and the recording of the focus group will be deleted once the transcription is completed. All information will be entered into a designated GCU SharePoint site, accessed only by the research team (Dawn Davis and Dr Martha Canfield). Transcribed data may be included in the write up in the form of quotations but will not be identifiable. 

The study will comply with the Data Protection Act (2018) and the General Data Protection Regulation (GDPR). The data controller is Glasgow Caledonian University. Information is being processed on the basis of Article 6(1)(e) of the General Data Protection Regulation and to perform a task carried out in the public interest. Enquiries specifically relating to data protection should be made to the University's Data Protection officer (DPO). The DPO can be contacted by email: dataprotection@gcu.ac.uk. If you are unhappy with the response from the University, you have the right to lodge a complaint with the Information Commissioner's Office (ICO). The ICO can be contacted by email: casework@ico.org.uk.

GDPR also gives study participants the right to ask for their personal data to be erased. If you would like us to stop using your personal data, then you can contact add your contact and ask for your personal data to be erased. However, it will only be possible to erase data that has not been anonymised and/or published. Further information about your rights can be found at: https://www.gcu.ac.uk/dataprotection/rights/.

Who is organising and funding the study?

This study is being organised by Glasgow Caledonian University and is not funded as it is part of the requirements for DPsych Counselling Psychology. 

What will happen to the results of the study?

The study results will be available to a range of people including e.g. the public, mental health services users, academics and mental health professionals. It will not be possible to identify any individual participant from these reports or publications. 

Who has reviewed the study?

All studies involving human participants carried out at Glasgow Caledonian University are reviewed by an ethics committee. The role of the ethics committee is the protect the safety, rights, wellbeing, and dignity of study participants. This study was reviewed by the School of Health and Life Sciences psychology departmental committee and given ethical approval.
 
What happens next?

If you are interested in participating and would like to know more then please contact Dawn Davis,
Ddavis301@caledonian.ac.uk.
 
How do I make contact with the study team?
Dawn Davis (research student), Ddavis301@caledonian.ac.uk Or Martha Canfield (research supervisor), Martha.canfield@gcu.ac.uk

Thank you for taking the time to read this information.

The incident in your childhood re your GM taking your S on holiday. Did you even feel you could say to your M that you did not feel jealous or was it a "done deal" so to speak? If sounds to me like she shut you down a lot and how hard, unfair and abusive is that? My M used to talk over top of me as though I wasn't there and it made me feel so angry, invisible and as though I did not count. I never said anything as I was scared of her reaction until one day as an adult I did and it certainly set her back on her heels. She mostly stopped talking over top of me and if/when she did I would always say something to the effect of "Excuse me, I'm not finished what I was saying" and eventually she stopped trying to making me invisible.

In my case it was all about finally and clearly being able to identify what she was doing in real time, why, and then having the agency to do something about it. Prior to that I would get confused and would shut down any anger, knowing something was happening that was not good but not quite knowing what it was or why I felt so emotional and that if I said anything life would get harder. Part of relieving this meant spending much less time around her and my FOO and the whirlwind of drama and chaos that makes it hard to think/feel. Ongoing exposure to her N drama meant I had to constantly be on guard so I didn't have the bandwidth to sort things out. Once I had more space I felt like I could breath and think and feel.

Maybe some of what you feel is based around exposure to her (and your FOO) which leaves little bandwidth to feel your feelings? Being around N's is as I've said exhausting and confusing and IMO they mean it to be this way. That's how they better control us or at least leave us so muddled we can't think/feel straight.

You have every right to be you no matter what she says or does but perhaps like I had to do you need to create a boundary/some space to be able to do that? Just my thoughts of course, you know you best and what is relevant.

 

I agree with Chart Teddy Bear - it good to see older threads be bumped as there's often a lot of good info or it provides an opportunity to start anew discussion about the topic. 

Great posts everyone, I relate so much to this topic.

When someone talks about me being strong what pops into my head immediately is the urge to say "It is not "strength" per se, just fear and desperation." If anyone could see inside me they would see I am or was a crumbly mess, just doing my best to keep my head above the surface most of the time.

I also don't like to be congratulated on surviving trauma, again all I want to say is "What other choice did I really have?" Of course there are a few choices, none of them good.

LBTV I understand your aversion to the word "resilient" for similar reasons. When I hear/read it, it often comes across as something I should have, and if I don't have it then I have failed. I'm OK if an article or someone mentions learning resilience, that feels different. In that case it involves a strategy or strategies I can learn and then use to feel better, happier, less dysregulated, whatever. But possessing a measure of actual resilience from the get go, as a child of complex relational trauma not so much. It's one of those things that IMO is learned in healthy families at a young age alongside regulation, etc.   

Hi and a warm welcome to Out of the Storm Ashley     Glad you found us and I hope you'll settle in and feel comfortable soon. 

Thanks for this SO, it's such a big part of our trauma landscape that any help ridding ourselves of it is a positive move in recovery.

One thing that has helped me deal with shame is first identifying it (it can run quite deeply in the soul), and then figuring out why I feel it. In my case (and I'm sure most others survivors) a lot of shame came as a form of control by those who abused me. If I felt shame then I was more vulnerable and open to manipulation and abuse.

Thus, saying "No" to shame I didn't earn or deserve was pivotal. I think this falls under "radical beliefs" ("reclaim our voice, experiences, and embodied truths by owning our authority, autonomy, and authentic needs") and embracing my true self. 

I must say I love the word "deshaming"!

Hi and a warm welcome to Out of the Storm and Happy New Year Olly!  While not really a reptile person I do love iguanas. I find them to be so beautiful.  And I do really like Geckos.

I think you will find it easier to write about your feelings/experiences here because members do get it. When I started posting I took quite a bit of time on every post, but over time I just relaxed and now my posts come freely and smoothly. I hope you will find the same thing. It may be that your autism makes this a bit more difficult I know, but there's a certain magic in the connection, acceptance and understanding here so that may help you to feel less guarded.

 

 

You know, this reminds me of the controversy of Alice Miller's son Martin, a psychotherapist in Switzerland re his book about his mother (https://www.outofthestorm.website/guest-bloggers/2019/4/28/how-victims-become-perpetrators-passing-war-trauma-on-to-your-own-children). The book is titled "The True Drama of the Gifted Child" and is about his abuse at the hands of his mother. When he published it he received both criticism because his mother was so beloved for her work in child trauma and no-one could quite believe what he was saying, and complements for sharing his truth about her.

I had a difficult time knowing quite what to think and feel myself until I came to see what Martin himself see's about his mother. That is, she was never quite able to deal with the trauma of the war and ended up passing it on, but that her work is still so very important because she had a strong intuitive and intellectual grasp about childhood trauma. It made me think that she is actually a good example of just how hard it is for anyone to deal with trauma, in her case so much so she pushed it down, intellectualized about it, only to have it seep out on her children.

I feel the same way about Gabor Mate, that is, I still see a lot of value in what he has contributed to the field even after reading her article, but am grateful that the author raised what are some serious issues. It's problematic to put people on a pedestal because we make ourselves vulnerable in doing so. I don't need a hero, but I do need professionals to have a strong moral and ethical compass so I can trust them. If he is indeed drifting away from the rigour and solid ethics needed in healthcare, I want to know that.

Asdis, these are just my thoughts of course but I remembered feeling similarly some time back in recovery and thought I'd share about what helped me. I remember I started to see a lot of books and articles about being self-compassionate as I was working really hard on recovering and that sort of grabbed me for some reason. I took what I was reading to heart and for me that meant slowing down and not doing so much, about trying less hard rather than more hard, and of being less perfectionistic and accepting that I am human. So many of us have such a bossy Inner Critic that we don't even think to tell it to shush, to question what it is telling us, and to move toward a more compassionate loving self that the IC blots out.

I don't know if this will resonate with you but I hope some of it does and you can step outside that endless loop. 

Tks for posting this BB     

I continue to be amazed that there are now "Super" conferences about trauma. I remember when I started this forum back in 2014, there were very few conferences, books, articles, etc.  Now it's a regular smorgasbord - yay!

Hi and a warm welcome to Out of the Storm Shosh 

Like The Big Blue I too am glad you are choosing to be honest about needing to work at recovery on an ongoing basis. It took a long time for me to admit that here because I didn't want anyone to be discouraged. Eventually I decided that it was my truth and one I needed to express and that others would need to decide for themselves what is true for them.

Hope you find being here helpful 

 

Welcome to Out of the Storm Highimpedance  So sorry for all that you have been through and are dealing with at present. I'm always happy when survivors manage to find their way here and begin to feel the relief of not being so alone anymore.

I absolutely love the term "post-traumatic joy" SO      There is nothing quite so wonderful than feeling that connection and understanding with other survivors that can bring about a sense of belonging and joy.  Pass the champagne please 

Just my two cents BB, but CBT bothers many of us because often we didn't feel like (or were made to feel like) we were "getting it right" much as you experienced. A lot of us find CBT can be helpful for some things (e.g., I got over my fear of flying and reduced my social anxiety), but it is limited (IMO) when it comes to those deep core wounds we suffered and the symptoms they gave rise to because they are so primal/emotional in nature. They are wounds you can't think your way out of, they need to be addressed in a relational context with a T who feels safe and trustworthy just as you suggested.

Getting over a fear of flying is just not the same as the fear of ever being in a position where I have no power or control, the fear of being so vulnerable, and the necessity of doing what I have to to survive. There is every reason to continue to fear that (because I have been through it), and to do what I can to never ever feel that way again, unless and until I have someone I can connect with and who will walk through those feelings with me. 

If you go to Pete Walker's site he talks about why he takes a relational approach as well as what a T needs to be for CPTSD clients. Both felt right to me since I read his book back in 2014 and still do. See https://pete-walker.com/pdf/relationalHealingComplexPTSD.pdf.

Good luck with your upcoming therapy appointment, I hope you are able to get across why it was not helpful when your T tried to reason you out of a feeling of a loss of safety.