All participants were involved in traumatic accidents and suffered severe injuries that required activation and reception of a trauma team, highly specialized treatment at a trauma hospital, and access to trauma care. While hospitalized, all participants experienced severe pain and were treated with opioids. All were also discharged from the hospital with a prescription for opioids. All of the participants described major changes to their lives related to the unexpected physical trauma and its effects on their current life situation.
The overarching theme was that the participants described the trauma course, from the time of injury to rehabilitation, as a complex experience in which they were exposed to different factors that contributed to feelings of what we, in this article, describe as “insecurity and unsafety”. This reflects our effort to translate from Norwegian to English a single term, “utrygghet”. In Norwegian, “utrygghet” encompasses both the physical risks associated with trauma, trauma recovery, and opioids, and the immaterial and subjective insecurities associated with an unpredictable and uncertain recovery process in which the participants’ perceived needs for information and follow-up care were not adequately met. This translation thus also reflects the three main themes that were identified as contributing to feelings of what the participants described as “utrygghet”: a) unmet information needs, b) exposure to opioids, and c) lack of follow-up after discharge from the hospital.
With respect to the acute phase to one to two months post-discharge, all of the participants recalled having experienced a lack of information from health professionals about the following three areas: a) the injury and expected level of physical function, b) psychological reactions to trauma and pre-existing premorbid mental disorders, and c) opioid side effects and tapering.
The manner in which the health professionals communicated was also a central area of concern. For example, many participants did not understand the information that was shared with them when physicians used medical terminology and unfamiliar words. Henning described this as follows:
I had the impression that some of these attending physicians who are experts in their fields, they come in and explain your status and use foreign words that you have never heard before, which just leaves you with questions. .. Several times, I had to ask, “can you please explain it in a more lay person language”.
For Henning, an understanding of his injuries was essential. In particular, he wanted an explanation of his lung injury, because he had lung drainage and severe pain. Instead, he was met by physicians who used complicated language, which left him more confused and insecure. Also, Henning did not fully remember what information he had received at the trauma hospital, because opioids had profoundly compromised his memory.
Andrine described a different kind of communication barrier to having her information needs met. She felt that the physician who had informed her about her injuries crossed a line by trying to persuade her to quit her favorite hobby, which was also the source of her traumatic incident. She explained:
.. . he almost started to nag that I should quit or find a new sport. .. then I got a bit angry. .. and he (the doctor) tried to give information about the injured body part and stuff but it just did not work. .. I did not listen at all at that point. It is not his business what I do in my spare time.
The information about the physical trauma became unavailable to her after she blocked out what was said in response to what she perceived as her doctor’s inappropriate and insensitive approach. For her, her hobby was a significant source of recovery motivation, which made it even more difficult when he challenged and dismissed, rather than tried to understand, how important this hobby was for her.
André offers another example of health professionals trying to provide information without knowing enough about the patient and, in this case, without knowing enough about the patient’s medical history. Most of the participants did not experience that current and pre-morbid mental health problems received significant attention at the trauma hospital, but this had a particular meaning for André, who had struggled with severe depression. During trauma care, he was never asked questions about previous or current mental health status. Furthermore, he was uninformed that the injury could affect his mental health. André explained what he experienced at the time of discharge:
.. . the doctor told me. .. I don’t know if he meant it as a joke. .. “you are getting a lot of strong painkillers to take home and you can easily take an overdose and die”. .. he told me. .. “but you don’t have any plans of doing that”, he said. .. “no I don’t have any plans to do that”, I said. .. “But clearly, if you were someone who planned to do that, you have the opportunity with a large pack of pills in the house. .. ”
André experienced that the physician was uninformed about his comorbid depression, which seemingly resulted in a misguided approach to communicating essential information. As a result, André did not receive the information that he needed or feel comfortable opening up about his mental health history and concerns.
Overall, participants experienced that health care professionals provided little information about how mental health could be affected by traumatic injury. While admitted to the trauma hospital, three participants were offered a psychiatric consultation, but André was not one of them.
The vast majority of the participants expressed that they first and foremost needed a detailed explanation of their injuries, treatment plans, and surgical interventions from their attending health professionals. They also desired information about the expected physical outcome of their injuries and the treatment and follow-up that they would receive following discharge from the trauma hospital. All participants experienced that several physicians were involved in their treatment process. While some desired better continuity, others found this unproblematic, like Børge, who explained:
Everyone had different opinions on how things should be done. .. people handle tasks in different ways, so it did not bother me and if I asked I got an answer [. .. ] So, if you do not ask, then I do not think that you will get any further [answers] either.
Børge did not expect to be provided with information without asking; he took an active role, and he also described an experience of participation in the decision-making processes. Ulf, who suffered from severe lower extremity injuries and complicated fractures, did not experience involvement in the treatment process. During the acute phase, he was not provided with any information:
Nobody told me anything in the beginning, they did not inform me [. .. ] It happened twice that doctors tore off [the bandage] and said “tomorrow I will perform surgery”, but without it happening. .. and you get uncertain, when there is a professional fight going on in which the doctors seemingly disagree with each other.
Ulf experienced that his injury was more important to the doctors than he was, as he felt that the physicians were almost exclusively focused on the complicated fractures and challenging surgery. This made it difficult for him to participate in the treatment process.
A few participants experienced receiving incorrect information about their injuries. André provides an example:
I felt that there was poor information along the way. .. first, I heard that I had one fracture in my ankle, then I heard that there were two. .. and then one again. .. and the day that I got discharged from the hospital. .. then I was informed that I had had a fracture in my neck. .. and that was the first time that I had heard of that.
André felt that his physical health was in jeopardy and he worried that the severity of the neck fracture had worsened during the period that he was unaware of it. Repeated incidents of incorrect information also compelled André to question the competence of the health care system in general.
Experience with opioids
Most of the participants were opioid-naïve before the injury, and their experiences of opioid effects were diverse and new. Opioids were experienced positively during hospitalization because of the considerable pain relief that they provided. Some participants described the opioid side effects as an experience of being heavily sedated by alcohol or illicit substances. Additionally, some described the opioids as generating feelings of well-being, calm, somnolence, and relaxation. Several participants expressed that the sense of well-being was so desirable that it was easy to understand why opioids are so addictive. When Henning was asked how he felt when he was given opioids, he responded:
Lethargic, relaxed, and intoxicated. .. I clearly felt like that when I was taking painkillers. .. Right away, I felt that these [opioids] were addictive. .. I felt that it was totally okay to be bedridden for a few weeks as long as I could feel intoxicated like that.
Henning sustained multiple rib fractures. Besides, he had an upper extremity fracture that caused extreme pain and immobilized him. To him, the feeling of being high on opioids made the severe trauma and its effects bearable. Early in the acute phase, he understood that he would be immobilized for weeks. Hence, he allowed himself to lie in bed and enjoy the feeling of being high. He compared the feeling to being in a bubble in which he felt absent and “comfortably numb”. On the other hand, Henning had mixed emotions about taking opioids. He knew that the analgesic effect was necessary and he enjoyed the pleasurable effect, but still, he wanted to stop using opioids because he understood that the enjoyable feeling could produce a desire to continue taking them.
The participants’ negative experiences with opioids during the hospitalization period were related to negative side effects. Almost all of the participants experienced side effects, including, most commonly, constipation, nausea, reduced respiratory rate, and dizziness. Fred described having experienced severe side effects, including visual and auditory hallucinations, paranoid symptoms, and psychedelic nightmares, which he interpreted as symptoms of having acquired a severe mental illness:
It was absolutely awful. I have never been so scared in my entire life. .. I did not dare to sleep because I felt that they were doing something to me. .. because they were attaching things to me and giving me electric shocks. .. It was terrible because I did not know. .. no one told me what they were doing to me. .. I was so incredibly scared.
Fred suffered paranoid symptoms and therefore neither trusted the hospital staff nor informed them about his experiences, resulting in what he described as a traumatic experience that continued after discharge. He had not been informed about this rare opioid side effect, and none of the health professionals at the trauma hospital had asked him how he was feeling. He associated opioid use with paranoid symptoms, hallucinations, and anxiety. Although he suffered severe pain, he refused to take oxycodone and tramadol because he was terrified of returning to mental trauma. Subsequently, Fred struggled to understand why he had suffered hallucinations, paranoid symptoms, and severe nightmares.
A few participants also related feelings of shame to opioid use. This shame was triggered by memory loss and episodes during which the participants had experienced a lack of control. Fred, for example, vaguely recalled an episode in which he had misbehaved towards the nurses in the PACU. He remembered standing in bed, screaming, and then being yelled at and told that his behavior was unacceptable. He described feeling embarrassed and like he owed the nurses an excuse for his behavior. However, no one talked to him about the episode afterward.
Unmet needs for information about opioid use
Almost all of the participants experienced that the health professionals who administered their opioid treatment did not provide information about side effects, addiction, or tapering. A few participants said that they did not expect information about opioids because they were already aware of the potentially harmful effects. Also, some said that information was easily accessible on the package leaflet. Others were surprised that health professionals administered strong, addictive medications without providing further information. Helge explained:
I can´t remember that they gave me information like “these are strongly addictive and you need to quit as soon as possible”. .. I have never been told that. .. I have been told that “if you have pain you should take pills because you´re not supposed to be in pain.”
Helge associated opioids with illicit substances and was aware of the risk of dependence. He preferred to withhold parts of his daily dose and feel pain rather than take what he regarded as unnecessary dosages.
David provides another example of how physicians failed to give vital information about opioids. He explained how his experience at discharge affected him and his wife in the days that followed:
I was given 100 tablets (paracetamol + codeine), 4 (grams) per day. .. that was the message I got. .. nothing about the dangers or anything. I was a bit frightened by that. .. my wife was sitting here reading about everything and she was the one who mentioned it. .. in the drug leaflet it said that the recommended dose was maximum 3 grams per day. .. and I got 4 (laughs). .. and she saw that my eyes were starting to turn yellow. .. then [. .. ] I did not want to do this anymore.
David and his wife experienced that they had to obtain information about opioids themselves. To them, David’s physical health appeared to have been jeopardized by the health professionals who had not provided them with appropriate information.
Tapering of opioids
At the time of discharge from either the trauma or local hospital, nine participants lacked a plan for tapering off opioids. The four participants who had a tapering plan had received it from physicians at the local hospital or rehabilitation clinic, implying that physicians at the trauma hospital did not discharge any of the participants with a plan for or information about tapering off opioids. At the time of the interview, seven participants were taking opioids, but in lower doses than those that were prescribed upon discharge from the trauma hospital.
Following discharge, the participants who lacked a tapering plan sought information from other sources, and several reported that the Internet was their primary source of information. They felt responsible for starting the process of tapering, but described this as a challenging process during which they experimented according to what they thought was best for them, but while feeling insecure. Fred provides an example:
It is something that I´m experimenting with. .. nobody has said anything to me. .. the only thing the doctor said was “don´t take more pills than it says on the medicine package” [. .. ] I´m just experimenting because I know I need to stop taking them. .. but I don’t think I will get addicted, I don’t think so. . .
Despite lacking a tapering plan, most participants had started to taper on their own. Different strategies were used; some stopped abruptly or tapered over the course of a few days while others tapered over an extended period. Some participants wanted to stop using opioids because they felt disappointed that they were still taking them. Some were also motivated to start taping due to assumptions that opioids are physically harmful. These assumptions were informed by the Internet and television. Some participants tapered even though they were still in pain, as they felt better tolerating the pain than being on opioids. A range of non-pharmacological pain management strategies were also engaged, including most prominently relaxation and diversionary activities.
Several of the participants developed symptoms of tolerance. Even after short-term use, they experienced that they needed more opioids to achieve the same level of pain relief. They perceived this as concerning and as supporting their understandings of opioids as powerfully addictive agents. A few participants experienced severe withdrawal symptoms. Henning, for example, suffered from a chronic condition and had previously been prescribed large quantities and high doses of benzodiazepines. He described his prior, pre-injury experiences with tapering as awful. Henning decided to withdraw completely four weeks after the traumatic injury, he explained:
When I was in that phase and decided that now I just have to quit everything [. .. ] then I started to taper and it was five days of pure hell. I understand why people become addicted and, like, start with heroin or other things, because I was lying in bed cold sweating in pain. .. I rarely cry, but, at that time, I was crying three nights in a row.
Henning was the only participant who planned to taper in cooperation with his GP. He knew that the period of withdrawal would be physically and mentally demanding, and that managing it together with his GP would help him to feel safeguarded and supported.
Lack of follow-up
For most participants, hospital discharge marked the end of a period of constant care and the beginning of a new period in which they and, in some cases, their next of kin had to assume care responsibilities themselves. Most participants received minimal amount of information about the follow-up possibilities from the trauma hospital, which led participants feel insecure about the injury recovery process several weeks after discharge. More than half of the study participants had not been in contact with their GP after discharge. For those who had, the GP was described as having been well informed about the injury, but themes such as mental health, pain experiences, opioid use, and the importance of tapering were not typically focal points. Moreover, most participants did not have access to specialists at the trauma care hospital during the one-to-two month post-discharge period, so their needs for information could not be directed there.
For some, the post-discharge period was more challenging than expected, as pain and limited physical functionality made activities of daily life problematic. Still, the main difference was the absence of health care and the lack of access to health professionals. Helge had suffered complicated injuries and required constant care during the first weeks of his admission at the trauma hospital, which he described as having made him feel important and safeguarded. For him, returning home was challenging, and he expected but did not receive comprehensive follow-up:
But if a doctor who had access to my medical record had called and asked me some questions. .. if he had just read through the whole medical record and then naturally made some thoughts about what to ask me [. .. ] I think it is a little strange that no follow-up was planned. .. But I do not know, when I have been home for three days, why no doctor has called.
Prior to his injury, Helge had not been to his GP for twenty years. Following his injury, he did not understand why he would arrange to see his GP. Because no one had informed him of what follow-up he could expect after discharge from the local hospital, there was a considerable discrepancy between that which he expected and that which he received.
Henning lacked confidence about his ability to manage his injury during the recovery period, which he related to a lack of information about what exercises he could do and a fear of aggravating the injury by pushing himself too far. As he explained:
[Trauma patients] could get some simple guidelines that are kind of reassuring. .. a list of what´s perfectly normal with broken ribs. .. that you feel uncomfortable with sudden movements. .. as simple as that. .. like a guideline for dummies, so that you don’t have to Google stuff to be reassured in a way.
As described, Henning experienced an uncomfortable role shift. At the hospital, information was easily accessible, he could ask questions, and he felt safe and cared for. At home, he had to seek out information actively, and he did not know who to approach when he was insecure and needed informed reassurances regarding his recovery status, functionality, and treatment plan.
Feeling insecure about post-discharge recovery
Several weeks after discharge from the trauma hospital, many participants felt insecure about the injury recovery process. At the trauma hospital, most participants had received information about the expected long-term outcome of the orthopedic injury, but little or no information about what to expect during the different phases of the recovery process. Stein provides an example. He felt well informed by health professionals, but he did not want detailed information about his injury or elaborate explanations of the surgical intervention. Still, when he was asked if anyone at the hospital had talked to him about his expected physical functioning after discharge, he said:
Nothing, that especially was something I missed [. .. ] How long it will take before I can get rid of the crutches and go back to normal, no one has said anything to me, so I have no idea. .. I imagine that I heard six to eight weeks on crutches so I imagine that I can start walking a bit then. .. I know nothing.
To him, not knowing what to expect during the recovery process made it difficult to know what he could reasonably anticipate with respect to daily and weekly physical improvements, resulting in a more passive lifestyle. Godtfred, on the other hand, was highly motivated to exercise every day, as he believed in the positive effect of an active lifestyle through the recovery process. Still, he felt uncertain about whether his physical status and experience of pain was within the normal range, because he did not know what to expect. He explained:
My leg is worse than I expected, but again now I am on the seventh week so I do not know. .. is this. .. am I within the normal range? I really don’t have a clue. .. I think that I have adjusted quite well, but it all comes down to not knowing how far you should have come, where in the process you are.