In accordance with the purposive sample, all participants had many concomitant diagnoses and a high symptom burden. The main strategies used by the participants were active and passive symptom management. The active strategies included, to plan, to distract, to get assistance and to use facilitating techniques, while the passive strategies included to give in and to endure.
Active strategies
When using an active strategy, the participants took matters in their own hands and felt they could do something to ease the symptom. The participants that used an active symptom management strategy could often explain or describe the source of the symptom and why they thought their strategy worked e.g. the circulation of the body was insufficient (strategy: use different physical activities), the body did not get enough oxygen (use different breathing techniques), and the nerves had somehow got trapped in the joints causing pain or tingling in hands or feet (use massage). Although their management strategy did not always make the symptom disappear altogether, it could often ease the burden temporarily or prevent the symptom from getting worse. All participants were receiving pharmacological treatment for many different diseases but, despite this, medication was seldom mentioned as a method for managing their symptoms or relieving symptoms. When asked where they had learned to use those techniques, they often referred to friends, family members, something they had read in a magazine or by trial and error.
To plan
The symptoms experienced by the participants were often considered to limit life in different ways and at different levels. Careful planning of activities was an active strategy, often in detail, and was considered crucial if they were to manage symptoms and feel safe: careful pre-planning of the trip, resting before leaving the house, how to get there - would it be possible to walk, go by bus or take a taxi? How long would it take, would there be anywhere to sit down while waiting for transport? Even with careful planning their health could deteriorate rapidly, and everything would have to be cancelled due to an increased symptom burden. Cancelling at the last minute was described as problematic since they felt they let people down and disappointed them. Participants who frequently had to use the toilet could, for example, pre-investigate where to find the nearest toilet or put on an adult diaper - just in case. Another strategy, with the same goal, was to plan when different medications should be taken:
“Yes, if you're going away, or like yesterday, when we attended a funeral, then I did not dare take diuretics” (Participant 9; [P]).
People with dizziness could plan where they would best position themselves in a room in the event they lost their balance, fell over, or were forced to crawl to the nearest phone to get help. Before sitting down, they checked that the table and chair appeared steady or robust enough to support them when they got up again. Due to a lack of energy, it was important to limit the activities during a day, and to not be away from home for a long period of time just in case the symptom burden increased. Not traveling great distances was also mentioned as a strategy in the event they had to quickly return home due to an increased symptom burden.
“But I do not want to travel anywhere far away, but I've been on some shorter trips and it has gone well” (P 3).
To distract
Distraction was frequently used as an active strategy especially for managing pain. Pain was extremely stressful and takes incredible amounts of energy. Therefore, it was considered important to reason with yourself and try to do something that distracts from it and makes time go faster. Distractions included crosswords, lying down and closing your eyes while reciting poems to yourself. Doing some kind of hobby was considered by some to distract from symptoms. Getting out of the home and interacting with others, instead of just being at home monitoring symptoms, was by many participants considered to be the best distraction strategy for managing symptoms:
“Well if you talk to people you might forget about the pain instead of going home all alone and just feeling it. That's really what makes the difference” (P1).
Reasoning “with yourself” was another distraction. By comparing themselves with others of the same age and situation who had an even greater symptom burden. Own symptoms were experienced easier to bear and manage when they realized that there were those who had significantly more severe symptoms:
“Well I suppose the body can’t function perfectly at my age, and I see others who look very frail, so in that way I feel I'm privileged” (P3).
To get assistance
Another active strategy was to ask someone for assistance to manage their symptoms. Most often the assistance came from family or the healthcare services, but it could also be help or advice from healthcare professionals. All participants in this study had several chronic diseases necessitating frequent encounters with different healthcare professionals. The travel arrangements just to get to the clinic and back again could be too much of an effort when the symptom burden was high, and they needed assistance to be able to get there at all.
“The clinic wanted me to come down there, but I had to decline, last time I had to wait over an hour for my ride (car) to get back home. I’m just too exhausted I don’t have the energy to do it” (P 5).
Some participants had symptoms necessitating assistance from relatives and family on a regular basis. Sometimes they felt forced to ask for help from friends, family or neighbours due to problems associated with the high symptom burden:
“I have my daughter who assists me with things I no longer manage myself, but it is not easy for her either, she also has her job to think about” (P1).
To use facilitating techniques
One active strategy used by participants to ease the pain or tingling in hands or feet was different types of physical activities. When pain struck, they described it as impossible to lay down or keep still and that moving around to get the circulation going was the best option. The physical activities could involve walking, spinning/cycling or doing squats. Other techniques were to sit up and do breathing exercises in order to get more oxygen into the system.
“When I get this pain in my chest and back, I cannot go and lie down, that will only make it worse. I’ll often try to do breathing exercises” (P2).
Participants also used massage, warm socks at night, bandages, breathing exercises, TENS, relaxation, and to lie down in a specific position to ease the pain.
“Well I figured that, if I rub really hard at this area (over the ankle) it gets warm, and then somehow things seems to loosen up a bit, and the pain goes away” (P3).
To relieve symptoms of a dry mouth or from the gastrointestinal tract, they tried gargling water, excluded various foods, and tested different non-prescription drugs from the pharmacy.
Most of these exercises and methods they had learned from friends and family or through trial and error.
Passive strategies
The participants sometimes felt they had no choice when managing symptoms other than to passively give in or to endure. The participants employing this symptom management strategy could not describe the source of their symptom, they often referred to it as “no one knows, it’s “just the way it is” or “the body is just totally worn out”.
To give in
When the participants talked about living with multiple (concomitant) symptoms or being fatigued, they had a passive strategy. They described it as though there is nothing anyone could do about it anyway, and they associated it with old age and the aging body.
“Well I’m 86 years old so I just have to accept my fate (P 17).
A very common passive way to manage their symptoms was to sit or lie down to rest. Participants described that they took a rest in order to suppress pain, for example, and that they often experienced situations of total powerlessness.
“I suffer from a lot of pain, sometimes I start to do something (talks about baking bread), but the pain gets too intense, and I just can’t finish. And when I try to do something else, it is the same story all over again” (P 17).
The participants sometimes experienced limitations in life that they could not control. In these cases, the only thing left to do was to stay at home instead of going on trips or to gatherings. Things they would like to do were no longer possible and they had to let go of interests in life.
“I was very active and dedicated once upon a time, but that has all changed now, now I'm more indifferent” (P18).
To endure
For some participants, the symptoms were so severe and debilitating that they had no alternative but to passively try to endure. They described it as a vegetative life, and they tried to cope from 1 day to the next.
“I am not really alert during the day, I’m mostly a sleep and I cannot really take any initiative of my own // I think I have outlived my own expectation by now” (P7).
Some participants blamed themselves for not being able to live a normal life. They were annoyed at themselves and considered themselves worthless and a burden for their family.
“My wife has to do everything around here now, I just sit and do nothing// I cannot even go for a walk outside anymore, my body is worn out” (P19).