I found this site while looking for research on support groups for ICU families and patients. Reading your posts and concerns just shows me how much education is needed for the families. All the symptoms, not waking, delirium PTSD, critical illness myopathy, poor ventilator recovery are all very common ICU symptoms. I am a ICU nurse in a hospital in Minnesota and are looking to start a support group for our ICU families while their loved one is admitted. The trouble is there is limited research and only really in the infant and baby population. I am wondering if you can help.
1) What do you think of the idea?
2) What topics would you like to have been educated upon?
3) What time of day would have been good to attend?
4) Any other advice is welcome
A couple of years ago I worked on a project using white noise to improve sleep in the ICU patients. What I discovered is that all but one of the sedating drugs caused disrupted sleep. What I mean is that if you are sedated you do not have REM sleep. This is one of the reasons why people wake up confused, as they do not get the same nights sleep as well all cherish. Good luck to you all.
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BritRN
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Really pleased to hear you're looking at setting up a support group in the U.S. as I know from contacts there how little aftercare there is following critical illness. Support groups are the foundation of ICUsteps and where our organisation grew from in 2005. The need for support, understanding and reducing the sense of isolation felt by survivors are absolutely needed.
Mo Peskett and I published an article in 2009 on setting up support groups for Nursing In Critical Care, I also posted a series of articles here on setting up a group and subsequent to that we published joint guidance with the Intensive Care Society which is can be downloaded from our website.
Over the years we've had many people come to meet with us to learn more, and before our drop-in this week we'll be meeting with visitors from Denmark and Belgium. I've also presented at over 60 conferences, learning days and meetings across the UK, Europe and as far afield as Toronto, though no invitations to speak again in North America at the time being.
Though the documents are a good background, I’d also suggest you drop us a note through the contact form at icusteps.org/contactus. Normally we'd suggest a visit to MK to meet with Mo and I to discuss the issues you may face in more specific detail and then go on to see a drop in for yourselves, ideally with former patients who are keen to help you establish a group but I appreciate with the distance we may have to work around that by other means.
I hope the links are a help to begin and would look forward to hearing from you.
Thank you for the information. I am actually using your article for my capstone project on setting up a support group in our ICU. There is little research on the subject and mostly in NICU families, but there is great opportunity that can be had with that, I can only hope that my organization can see that. Thanks again.
You may have seen this already, but if not I hope it might be useful in convincing some of those who don't see the issues we're left facing after critical care. pbs.org/newshour/bb/stay-ic...
We have had a group running for 7months, it has a split of expatients, relatives & hospital staff. We are in the process of setting up an ICU visiting scheme. During my hospital stay of 4 months, I needed to have questions answered about what lay ahead for me, after a 2 month coma etc etc - my wife wished to know what lay ahead for her too - the uncertainties & lack of bona fide recovered ex-ICU patients to ask, left us feeling so isolated and abandoned. ICUsteps info helped - I also scoured the net. I found
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