“Love Can’t Be Taken to the Hospital. If It Were Possible, It Would Be Better”: Patients’ Experiences of Being Cared for in an Intensive Care Unit

Abstract

In this study, we aimed to explore the experiences of being cared for in an intensive care unit (ICU) through patients’ memories. We adopted a convergent parallel mixed-method design. We interviewed 100 patients shortly after their ICU discharge. Content analysis revealed 14 categories and 49 codes grouped according to themes corresponding to ICU Memory tool core components (factual events, feelings, delusions). The most critical patients reported mostly fragmented or delusional memories, the less critically-ill more factual memories. All experiences were recounted with strong feelings. ICU was identified as a hostile, stressful environment. Positive experiences were mainly associated with a sense of safety promoted by the nurses. Negative experiences were related to privacy and dignity violations, lack of empathy, not being understood, delays/lack of obtaining support, and total control by the health care staff. Removing any avoidable sources of stress and ensuring personalized, dignified care represent a key aim for ICU interprofessional teams.

Processing Intensive Care Unit Treatment Experiences: A Thematic Analysis of a Diary Intervention

“…The five themes derived from the data confirmed that the ICU experience was distressing and disorienting for the study's participants (Jackson et al, 2016). The ICU experience was depicted as an endless martyrdom (both physical and mental) where the imprisoned and suffering self was constantly exposed or threatened by the acts or omissions (real or imagined) of others (relatives or ICU staff) rendering the ICU a hostile environment (Sanson et al, 2021). Participants conveyed their lack of control and freedom, describing their positioning as a state of extreme vulnerability as they were entrapped and voiceless (Yang, 2016).…”

“…Likewise, participants' descriptions linked the regain of consciousness in the ICU with optimism, control, and self-continuity. Sanson et al (2021) observed that the relief of being alive eventually follows the awakening process in most of the cases. Furthermore, consciousness entails the ability to communicate and the removal of tubes and medical devices; significant indicators of recovering control (Yang, 2016).…”

“…As the level of participants' consciousness improved, staff increased interpersonal contact with them and made efforts to hearten their emotional needs, which resembles Rier's autobiographical observation (Rier, 2000, p. 78). Sanson et al (2021) observed that the ICU staff should engage with patients not only when consciousness has improved but from the beginning of the awakening process in order to facilitate reorientation and reduce confusion. Perhaps, the ICU environment can be designed to provide orientation and adjustment to time, surroundings, and circumstances by simple means such as displaying the time, dimming the lights or/and reducing the volume on alarms and telephones during the night.…”

“…Apart from medical care, healthcare professionals were appreciated for providing emotional support, individualfocused, and dignity in care (Ewens et al, 2014;Sanson et al, 2021). The increase in references to ICU's staff in the TSN narration could be attributed to the staff's contribution to bettering their health.…”

“…Breathing through endotracheal tubes, pain, physical restraint, nightmares, and fear of death or ontological uncertainty are often a part of their experiences (Jackson et al, 2016). Furthermore, patients consider the ICU as a hostile and stressful environment due to its organizational structure and characteristics such as the overwhelming technology, bright lights, isolation from the outside world, detachment from time, strict protocols, and exposure to the suffering of others (Sanson et al, 2021). Also, former ICU patients report their incapacity to react, communicate, and express their needs as anxietyprovoking (Chahraoui et al, 2015).…”