The analysis identified 240 codes that were grouped into categories (see Table 1), classified into 5 subthemes. Finally, two themes were identified: 1) factors that influence the perception of control, and 2) perceiving control over an uncontrollable illness. Representative quotations of each theme are in Table 1.
- Factors that influence the perception of control
This theme can be understood as a framework through which participants experienced greater or less control. Three subthemes emerged: 1) uncertainty about future suffering, 2) personality traits underlying the need for control, 3) patient-medical interactions.
1.1 Uncertainty about future suffering
Some participants expressed that although the illness had not currently limited them excessively; one of the biggest concerns was uncertainty related to a future loss of independence.
An unpredictable future loss of physical function, no longer being able to do things, and the anticipation of pain or suffering all threatened their sense of control. Even death was considered the lesser evil compared with the uncertainty of functional deterioration, causing loss of bodily control and independence:
“What really [bis] scares me, is not death, death itself, no, because we all have to die, you die and you don't realize. What scares me is ending up in a wheelchair, having to depend on someone, that, wah - Panic!” (P2)
1.2 Personality traits underlying the need for control
We observed personality traits that helped to better understand those patients in need of control. Some individuals explained how personality influenced the way they live and die. Staying resilient led participants to overcome difficult situations at different times in their lives and to achieve any objective they had set. They identified themselves as proactive, planners, independent, and self-sufficient. A common characteristic was how they sought control of their surroundings through organizational strategies. The participants explained their precise planning of schedules, diets, medical visits and monitoring of treatment, the use of clinical devices, etc.
“I spent several days sorting things out and I made my list of meals […] the day I stop planning, I’ll no longer be me. I am too much of a planner, yes… I usually get things done; I don’t set a goal…unattainable goals, right? […] Now with this I’ve had a very hard time, we’ll see how far we can go if not, but I’m doing my bit” (P4).
1.3 Patient-medical interactions
Bad experiences with treatments, interventions, different medical devices, perceiving a lack of care tenor from healthcare professionals, and experiencing vulnerability due to hospitalization all conveyed a sense of losing control.
A missed diagnosis at an earlier stage of their illness after visiting different specialists, the perception that they received inadequate treatment from their healthcare providers (insufficient information, giving false expectations of the illness, lack of empathy) contributed to the greater perception of a loss of control.
“Everyone said they couldn’t see anything... some of them gave me a bit of medication or some said “that, it's an inflammation […] but everyone told me that I was senselessly worrying about this” (P4).
Another source of a sense of loss of control was the reality of depending on medical devices (e.g. catheterization, colostomy bags, etc.). Those patients described this dependency in terms of “limiting my life” and suffering:
“Everything that wasn’t the treatment, has been the bloody port-a-cath. Pissed off with that... that device here. That was what I felt was limiting my life” (P5).
2. Perceiving control over an uncontrollable illness
The second theme encompassed all those elements that explained areas in life patients’ felt were under their control, beyond their control or either, depending on the circumstances (Figure 2), which emerged along with two subthemes: 1) perceived control over subjective wellbeing, and 2) relinquishing control through coping strategies.
2.1 Perceived control over subjective wellbeing
The relationship between maintaining dominion over the situation, being the one who makes decisions and personal wellbeing highlighted to what extent participants felt that they were in control of the situation and the areas in which they exerted this control.
Taking care of themselves through diet and physical exercise, receiving a response from professionals that adapted to their needs, receiving adequate information about medical treatments or having “tied up loose ends with advanced directives”, as commented one participant, contributed to personal wellbeing and maintenance of their sense of control:
“Taking care of your food is a kind of control […] because it gives you a feeling that you’re taking care of yourself and that you’re helping to improve your health when you get treatment. Not only through medications, but also that you’re also taking care of your body. Another thing that’s important for me, not just because I have a good time and I enjoy sports. It's another way to say... feel healthy, all things considered!” (P7)
As long as patients exerted dominance over significant areas of their lives, they felt that “my life continues to be in my hands”, as expressed by 7 participants. The awareness of controlling highlighted that realities that were uncontrollable could be distinguished (the fact of having an illness) from those around which they could have a margin of control.
2.2 Relinquishing control through coping strategies
Participants referenced strategies they had developed to manage the illness. These were seen as strategies through which patients could relinquish control over the course of the illness. Deploying these strategies to recognize where they could and could not control their current lives occurred both at a personal and interpersonal level.
Personal level
a) Living in the present. The inability to make plans for the future resulted in many attesting that the illness had helped them focus on the present. For some, living one day at a time was viewed as a form of control over the only thing really in their hands:
“I plan small things that I’m interested in doing but I don’t plan the future… because then I’d worry now and later and […] it’s not in my power to change the course of events” (P4).
Related to living in the present was understanding life as a gift. Having gone through difficult situations throughout the illness led some participants to value the present and enjoy even temporary wellbeing in contrast with painful situations either from the past or anticipated for the future.
b) Adaptation to the distinct phases of the illness. The experience of having overcome insurmountable situations revealed a capacity for adaptation in each moment. One of the patients explained how it seemed they could not stand wearing a colostomy bag, however, when there was no longer an alternative she was not only able to accept it, but to live as though it was not there. Some patients referred to this reality using the metaphor of “having surpassed the limits that I didn’t believe I had”:
“You overcome lots of things; if they’d told me everything I’ve been through, and that now I’d be here […] I’d have said that I wouldn’t overcome all of this, I wouldn’t be able to” (P8).
Three participants expressed this idea by highlighting some inconsistency between thought and action: “When the moment comes, you act in a totally different way than what you said previously” (P5).
Another form of channeling the need for control was through the creation of comfort zones, where that person felt most safe and secure. One patient mentioned that away from this comfort zone she felt afraid and insecure so that there was a greater need to remain among surroundings she could control to avoid suffering and distress.
c) Acceptance of what cannot be changed. Living through the illness process meant learning to put life events into perspective and accept circumstances that cannot be controlled:
“You really relativize everything, and when you hear something that makes you say: oh, that’s problematic; you say: well, it’ll get sorted, if it doesn’t sort itself out one way it’ll get sorted another way, and if it doesn’t get sorted then it’s not sorted” (P8).
We observed how some individuals were aware they could choose their attitude to coping; whether negative responses, wondering why they became ill, or focusing on everything they could still do.
All participants indicated there were aspects over which they lost control, but was not necessarily experienced as negative, as long as they were able to generate coping strategies without affecting their core values. The patients referenced the progressive deterioration from the illness and activities they could no longer engage in. For those who considered autonomy as a defining value of their identity, the thought of not making their own decisions or depending on others was very difficult to cope with and, for one participant, even unacceptable.
Interpersonal level
a) Relational Autonomy. Some losses were not experienced negatively, such as the inclusion of loved ones in the care process, which was assumed to be something natural. Leaving care to others was experienced as a mutual agreement where patients continued to have control. They allowed themselves to be cared for and experienced that help as an extension of their will and control:
“Maybe a time will come when maybe it won’t bother me so much that someone close to me helps me to control things. That won’t bother me” (P4).
Some recognized that others helped them exercise greater control over the situation:
“I believe that my life is still in my hands. The thing is… I depend more on the people around me to achieve my goals […]. But hey, it’s always up to me if I want to accept people’s control over me [...] Obviously I need people to help me, [...] but I’m the one who decides to do one thing or another, and they cannot make me do what others want” (P6).
b) Desire not to make others suffer. All participants expressed concern over making others suffer, perceiving themselves unable to control their impact on or burden to others. Three interviewees experienced caring for a sick relative. This prior experience convinced them they had to protect loved ones from suffering. One patient said she could deal with the illness, but it seemed unfair that her son had to bear any burden also. Another common issue was the inability to control what would happen to their family and loved ones after their death, as participant 1 stated:
“It’s not that I’m worried about dying, as it were. I am more worried about [bis] her [his wife], how she’ll be. Her, my relatives, my friends who care about me, who love me; well... I’m more worried about that than me” (P1).
Another participant mentioned she asked her relatives not to accompany her to the doctor because she knew that without them she was freer to express her emotions.