Table 1.
Representative Sample of Statements From the Preintervention and Postintervention Qualitative Analysisab
| Category | Representative statements |
|---|---|
| Preintervention phase | |
| Patients and caregivers explained their experience of being in the ICU | “All I remember is darkness. Nothingness. Couldn’t walk or talk because of the tubes in my throat. No one told me what happened so I was very confused as to where I was and why.” “I was instantly convinced that I was being held prisoner.” “When I was allowed to come out of sedation I couldn’t lift my head, arms, or legs. I was terrified.” “Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize.” “In all honesty, I do not even remember being in ICU.” “For [my husband] I believe it is more difficult. He had to stand there, helpless, and watch me as death became a real possibility. While I was so sick that I did not fully comprehend.” |
| Patients and caregivers explained their experience since being in the ICU | “I can walk and talk again and I’m just now trying to make sense of it all. Still confused. Still cry all the time.” “I too am very emotional and will cry out of nowhere. I feel like no one understands and people do not even ask.” “My husband had a very brief stay in the ICU after a major health scare and I can tell you, even as a healthy young man, the stay traumatized him and affected him psychologically long after he recovered physically—it is something he will never forget.” “My husband gave me a hard time about looking rather grim and sour. I guess I did. My son mentioned that I wasn’t smiling anymore. I think they expected me to be my happy, driven self sooner than it happened.” “The depression monster and its friend the anxiety monster are constant companions for me. My brain won’t work for me anymore.” |
| Health care providers' responses after hearing the patient and caregivers’ experience | “I had no idea.” “We focus so much on saving lives, we often forget about what happens in recovery outside of the ICU.” |
| Patients, caregivers, and health care providers on PICS | “I was not familiar with name of the condition [PICS]. However, the condition was there all the time.” “No one mentioned PICS to me.” “No one plans for a stay in the intensive care, but those that find themselves there have to deal with how life-changing the experience can be.” |
| Patients on factors contributing to decreased quality of life with PICS | “I don’t have anyone to share with who would understand my thoughts and feelings.” “My wife just wants me to stop talking about it but I am consumed with it.” “It is so stressful for the patient and family but also the staff caring for patients with life-threatening or severe illness or conditions.” “I feel like people that do not go through [it] do not get it” “My family and loved ones are reluctant to discuss the events because, I believe, it is too painful for them.” “I need help, and I know it. But getting help is almost impossible…. I don’t even know who to ask anymore.” |
| Postintervention phase | |
| Patients and caregivers on impact of interventions on quality of life | “I have learned a couple of things since I have been participating in these discussions: I am not alone in my struggles; it helps to talk (or write) about it; there is support for me; and I have found that I can support others and that feels good!” “I’m so glad that Mayo Clinic Connect has created a space to talk about the stresses and consequences of being seriously ill.” “It’s reassuring to hear that the chaotic experience has faded some over so many years.” “I just needed someone to talk to and care tonight. Thanks for your caring on this site.” “I am so glad I found this forum/thread! I thought, until now, that I was the only one who suffered from this! And it’s such a relief to give it a name, instead of thinking that I am going 'crazy'!” “Your post was exactly what I needed to hear.” “Thank you for normalizing what I am experiencing. It really does help to know I’m not alone in this.” “I was relieved to find this support group and to learn that this is a diagnosable condition known as PICS.” |
a
ICU = intensive care unit; PICS = post–intensive care syndrome.
b
Continuous data are presented as median (25th-75th) percentiles unless specified otherwise (ADL total score reported as mean (standard deviation))