Do any patients or relatives have any opinions of being involved in research in ICU?

[mxberry]

Dear All,

I am a physiotherapist involved with research in the intensive care. This is a relatively new role for me and am only starting to learn how to conduct research.I have worked clinically in ICU for several years now and have seen how important it is to ensure that I consider that everything that happens in ICU will affect patients and relatives long after leaving hospital. I have also been on the other side of critical illness as a relative of a family member.

As a result, one aspect of conducting research that I really want to connect with is how patients and relatives feel about being approached to be involved with research. Do patients/ relatives like being involved or is it too stressful at an already stressful time? Do you wish that your feelings and opinions were considered more in research on ICU? I you have been involved in research, are you interested in the results of the study or do you eve know the outcome?

Any thoughts, ideas or viewpoints would be greatly appreciated.

Thank you!

[Mystery]

Myself and my eldest son gave interviews to help someone doing a degree in something or other!! This was about a year after my discharge from Icu, it was very emotional for me and my son but we went through it for the sake of others, if those interviews helped other people then iti is worth it, it was very stressful , but hopefully helped other people, I still get very emotional talking about my situation after three years, I think interviews for research should take place after a good while after discharge , it was a little early for me personally but everyone is different, it didn't help that the person who interviewed us had been an intensive patient herself and it was clear she wanted to talk totally about herself after 14 years after discharge!! That was an issue !!

[Hidden in reply to Mystery]

Hi. I am really saddened to hear this but it is great you got involved.For anyone considering helping a researcher I thought it might help to provide some reassurance about how it should be done as this experience is not typical thankfully, helping with research is a very generous act with the potential to help others and researchers are very appreciative if the time and emotional sacrifice people make in helping us understand and improve the experience if ICU and beyond. If anyone is approached to do research they should receive a participant information sheet which provides detailed information about the study. This must include details of the organisations who have agreed to the research (ethics committees) and provide a contact who can be independently contacted with any complaints or concerns. There should be a full and open discuss of the study with you and the potential good and bad aspects of it for you - which includes emotional distress at reliving the experience. This should include the right to withdraw your consent to take part at any time including after the interview and a good research project should provide a summary of findings to all participants. You must be given a consent form to sign that outlines your rights etc. The interviewer should never discuss their own personal experience, and if so this might only be done perhaps as an opening comment to build trust and indicate understanding. If you are ever unhappy about how research is undertaken then do contact the university or NHS Trust involved as it is important that they are aware of any possible concerns. Inexperienced researchers/good ones will welcome the feedback and be very concerned for participants because their welfare and minimising harm is our number one concern - way ahead of getting good data for a study!!

[Kulta]

I first got involved with this two months after discharge and it was a little emotional for me but twenty months on from discharge, I have shared my photos and videos plus been a case study for visiting students from other countries and am more than happy to help. I want to know the outcome/feedback from these. I am due to start voluntary work as an ICU ward helper very soon. Timing is key. I believe many suffer PTSD/depression around three months after discharge and perhaps that's the point at which a follow up should be offered before an invitation is made to share personal experiences for research?

[mxberry]

Thank you Mystery, Granny_Sarah and Kulta for your responses. It is good for me to hear these point of views. Mystery, I agree with Granny_Sarah, I am also saddened about your research experience, and also the kind of issues that I am keen to avoid!

Granny_Sarah, I think that you have summarised the conduct of research well! This is the reason that I want to get this feedback as patient and family opinion is key as I believe that this process cannot only be one way. The conduct of research has evolved vastly, with peer review, ethics and patient involvement being essential to the development of sound research with the patient experience/ welfare at the heart.

Kulta, I also agree that timing is key and hence why patients should be involved with the design of research, to ensure that these issues don't arise.

How about research during your time on ICU? Has anybody experienced research whilst still in ICU? Has anybody had any issues with this? How about families/ relatives? How have they felt about being approached to consent their loved one into a study? Do you feel there is a difference between getting involved in research during your ICU stay if there is to be a change to your standard treatment compared to if data is collected from things already being monitored?

As always, I am grateful for your views!

Thank you!

[RNCP]

mxberry, you need to look at the critical care research on the NIHR portfolio only to see the extent of research being undertaken when patients and relatives are on our units. There is lots going on and a mix of qualitative and quantative. Research in UK follows good ethical principles that all researchers must adhere to. A number of studies do have user (patient / family) involvement in the set up. I do approach patients and families for consent / assent to participate and if at any point at all I do not feel that they are able to then I will not proceed. There is always the opinion of not taking part without any problems occurring.

We should always assure people of this as professionals

[mxberry in reply to RNCP]

Hi RNCP,

Thank you for your comments. I am aware of the NIHR portfolio and am lucky enough to see the types of research carried out in the ICU. I'm also aware of GCP and declaration of Helskinki etc. and how they dictate the conduct of research. I appreciate that studies will be scrupulously reviewed by an ethics committee but I wanted to establish the thoughts and feelings of patients and family members when involved in research, in order to give me a greater understanding beyond the official channels and conduct. Hope this makes sense.

Thank you for comment and feedback. Much appreciated.

[AndJan]

Hello,would be very happy to help in any way with your research,Chandy

[mxberry in reply to AndJan]

Hi AndJan,

Thank you for your interest in your involvement. I have contacted the ICU steps link for involvement in research. If you're still interested, would you be happy to contact this person also?

Thanks

[barbs58]

I loved the whole research thing and have done anything I've been asked to do. I think for me it felt like it was something positive to come out of something that was basically an awful experience. I also really appreciated the opportunity to talk about what's happened to me, as in my day to day like now it's never mentioned,

We attended a research day with some other ICU survivors and relatives, and both me and my husband found it incredibly supportive to meet and talk with others who'd gone through the same thing, as prior to that we had felt so isolated and alone with it all, both as patient and as relative, as you never meet other people normally who've been through the ICU experience. I hope that our experiences when used by academics or in journals will inform training of ICU staff so that what we regard as good practice will come into general use, such as the keeping of diaries and photos.

[mxberry in reply to barbs58]

Hi Barbs58.

Thank you for this insight. Really glad to hear you had a positive experience. I would hope that getting patients involved in the research process can be mutually beneficial!

Thank you for your comments

[mgfusa]

I was in ICU for 11 days three years ago in USA after complications of open heart surgery that resulted in DIC, multiple organ failure, induced coma, strokes. I experienced visions of dying many times, as I was often close over a 5 day period.

I think research on the impact of these experiences is sorely lacking. I would support research which is done post hospitalization. I think research studies on in hospital patients would be traumatizing. More research is needed on the long term effects of such medical trauma. This would help not only patients but providers, and family members of patients.