Introduction
Methods
Study design
Study participants
Recruitment of participants
Data collection
Topics | Main questions |
---|---|
Living with chronic disease | Can you tell me something about your chronic condition? How do you experience your chronic condition? What does your condition mean to you? How does your condition affect your life? What has changed in your life since your diagnosis? |
Physical and mental health | Do you experience physical limitations because of your condition? How does your condition affect how you feel mentally? |
Social life | Has your condition affected your social life? How? Has your relationship with others changed because of your condition? |
Coping | How do you deal with your illness? How do you deal with the limitations as a result of your condition? |
Network and context | Can you tell me something about the social support you may or may not receive? Does the support meet your expectations? How do you experience the professional care you receive? |
Data analysis
Results
Participant number | Sex | Age | Living situation | Educationa | Employment status | Chronic conditions |
---|---|---|---|---|---|---|
P1 | M | 45 | Partner | Medium | Unemployed | Low back pain + recurrent depression |
P2 | M | 45 | Single | Medium | Employed (PT) | Cerebral palsy |
P3 | F | 39 | Single | Low | Unemployed | Borderline personality disorder + diabetes + knee replacement |
P4 | M | 57 | Single | Low | Unemployed | Cardiovascular disease + psychological vulnerability |
P5 | M | 55 | Single | Medium | Unemployed | Personality disorder + mild cognitive disorder |
P6 | M | 59 | Partner | Low | Unemployed | Chronic pain due to post-polio syndrome |
P7 | F | 83 | Single | Low | Retired | Hypertension + arthrosis |
P8 | M | 75 | Single | Medium | Retired | Type 2 diabetes + mild cognitive impairment |
P9 | F | 63 | Single | Low | Unemployed | Type 2 diabetes + osteoporosis + cataract + incontinence |
P10 | F | 52 | Partner | Low | Employed (FT) | Type 2 diabetes |
P11 | F | 38 | Single | Medium | Unemployed | Fibromyalgia |
P12 | F | 58 | Partner | High | Unemployed | Chronic bronchitis + bipolar personality disorder |
P13 | M | 71 | Single | Low | Retired | Hypertension + low back pain + chronic nerve pain |
P14 | M | 72 | Partner | Medium | Retired | Parkinson’s disease |
P15 | F | 54 | Single | High | Employed (FT) | Recurrent depression |
Theme 1: A heavy bag to carry | |
Subtheme 1a: Personal life history | |
Subtheme 1b: Chronic disease: extra weight and burden | |
Theme 2: Loss of autonomous life | |
Subtheme 2a: Illness dependency | |
Subtheme 2b: Dependency on others | |
Theme 3: Inner and outer loneliness | |
Subtheme 3a: Loneliness and social isolation | |
Subtheme 3b: Lack of understanding | |
Subtheme 3c: Goal lacking | |
Theme 4: Emotional imbalance | |
Subtheme 4a: Negative emotions | |
Subtheme 4b: Positive emotions | |
Theme 5: Unmet need for support | |
Theme 6: Coping strategies | |
Subtheme 6a: Illness acceptance | |
Subtheme 6b: Keep on fighting | |
Subtheme 6c: Other coping strategies |
A heavy bag to carry
Personal life history
“I may not keep sweets at home, otherwise I’ll eat them immediately. I don’t know why, it’s stronger than myself. Is that a flight? Because of what happened to me in the past? I think if all these things hadn't happened I would have been a slim woman without diabetes. (…) After all these years I still can’t handle the past, it’s there every day. Sometimes I can ignore it, I feel optimistic and start a diet. But that can change the same day. Why am I starving myself? What a stupid cow am I?” (P10, female, 52 years)
Chronic disease: extra weight and burden
Patients were constantly reminded of their disease, which they experienced as very confronting, however for some patients the disease became a habit. Patients said it was painful to accept not being able to do things the way they used to, or worse, that they simply cannot do certain things. Some were tortured by unsolvable questions and sometimes had feelings of injustice.“We see it this way: the backpack is your past that you permanently carry with you and from which you never completely get rid of it. The disease is an extra weight in the bag.” (P15, female, 54 years)
“You see other people doing things that you can’t do (patient is wheelchair-dependent). During coffee breaks, my colleagues are busy talking about the weekend: what they’ve done with the kids, going out… It’s their right, but it hurts. Then you ask yourself the question: why can’t I do that?” (P2, male, 45 years)“If I no longer felt pain, I would find that strange.” (P7, female, 83 years)
Loss of autonomous life
Illness dependency
“I need to plan when I want to do something and after that I need to schedule enough rest. But I can’t plan too far in advance because I don't know if my body will allow it. So, I need to plan, but I can't make many plans at the same time. That’s very frustrating. If I go somewhere, I need to know: can I sit there?” (P11, female, 38 years)
Dependency on others
“I can’t reconcile myself with the fact that I’m immobile and people have to push me around in a wheelchair. Sidewalk up, sidewalk down. I don’t like to do that. Maybe because I prefer being independent.” (P14, male, 72 years)
Inner and outer loneliness
Loneliness and social isolation
“People organize things, but you can’t participate. That's lonely. People also need to come to my house: they do that once or twice, but they also want to do an activity with you and… then they drop out and you end up with no visitors. That hurts. That hurts a lot.” (P3, female, 39 years)
Lack of understanding
“I used to have more friends, but they all dumped me because I couldn't go to town and stuff. First, they said ‘we understand’, but eventually they stopped coming. ‘But you never do anything.’ That hurts. Especially because I mention it in advance, they know it, but they let you down anyway.” (P3, female, 39 years)“When you talk about it with other people, they don't listen. They say: that's not my problem. People only think of themselves, your story doesn't interest them.” (P4, male, 57 years)
Goal lacking
“I watch a lot of television because I’ve nothing else to do. During the week, I follow several TV series, but there’s nothing on the television during the weekend. And then the days last long.” (P9, female, 63 years)“I no longer had daytime activities, nothing (because of pain). I actually spend a lot of time in bed during the day. In fact, I always lie in my bed when I’m home. I know that's unhealthy.” (P3, female, 39 years)
Emotional imbalance
Negative emotions
Some patients felt guilty for having the illness (although they knew it was out of their control), for cancelling plans, calling out of work, being a ‘burden’ to others etc.“I’ve already had suicide attempts. Somehow, I always get through it. However, the dark thoughts will remain. I’m convinced that there will always be something on my path that will pull me down again.” (P15, female, 54 years)
Patients experienced illness-induced shame which arose with an unexpected loss of control over bodily functions. As a result, they often receive compassion and patronizing, which reinforced feelings of being burdensome and miserable. One patient was ashamed of her depression and kept it a secret because having mental illness is taboo.“I feel like a weakling because I’ve ended up in a depression again. Then I’m not satisfied with myself. It harms my self-confidence. I’m still wondering: is it my own fault?. I don't know, I don't know where depression comes from. (…) I’ll probably continue to feel guilty about being absent from work in the future.” (P15, female, 54 years)
Patients were concerned about how their situation would evolve, knowing that the disease is progressing, that they are getting older, and that they will need even more help. Their limited financial and social resources reinforced these future-oriented anxieties. Other patients feared losing autonomy, losing others, being rejected, misunderstanding from others, and death.“Wherever I am, I’m always the only one who coughs. I find that very annoying because people are watching, especially now with COVID-19. I’m actually ashamed. That’s not a nice feeling. I feel uncomfortable, I would rather not be there.” (P12, female, 58 years)
“ I’m only 39 years old and I already have so many problems, what when I turn 60? I don’t have money for additional care. And who will help me? I have nobody. I do worry about that.” (P3, female, 39 years)
Positive emotions
“I’m satisfied. With my television, my bed, my washing machine. That's it for me. I don't care about the rest. It's that simple. Having no worries, just the little things.” (P4, male, 57 years)“I’m happy with who I am. I am who I am and that's quite okay.” (P11, female, 38 years)
Unmet need for support
Most patients experienced a lack of financial comfort and support as a result of antecedents (e.g. debts) or SES. The diagnosis of disease made them even more economically vulnerable (e.g. disabilities caused job loss), with sometimes not enough money left for additional care. Some had to choose between living necessities and essential medical care or they had to postpone it, as the allowance could not afford both.“I sometimes call the outreach worker or my financial administrator. Then I make up an excuse or I say: I’m just calling to say hello. Well, I do that just to hear someone, to hear a voice.” (P3, female, 39 years)
One patient talked about the need for additional disease-related support such as stronger medications or the ability to consult health professionals outside the health community center.“I actually need a lot more help. But I just don’t have the money for it.” (P3, female, 39 years)“My teeth have deteriorated a lot since I became ill. I actually postpone the care for as long as possible because that will really cost a lot.” (P11, female, 38 years)“The price of tobacco has increased again, but my spending money remains the same. If you then receive the weekly allowance, you sometimes have to make choices.” (P3, female, 39 years)
“I used to have a good physiotherapist. I can go to the physiotherapist outside the community health centre, but then I have to pay for it all by myself.” (P2, male, 45 years)
Coping strategies
Illness acceptance
“All I can say is: try to accept. Only then you can do something about it.” (P6, male, 59 years)“I don't see myself as the disease. I am X with fibromyalgia. And that’s bad luck. But that's okay.” (P11, female, 38 years)
Keep on fighting
In difficult moments, it was important to pull themselves together as quickly as possible and to stay strong, especially for the (few) people around them. Some patients were stubborn – they did everything they could to not be inferior to others. Asking for help was seen as a final solution. In case patients got desperate (e.g. when in pain), they searched for opportunities (e.g. pain clinic) in order to give themselves hope and perspective.“I don’t give up, I don’t give up. I will never give up. No. I’ve been through all those things in my life and yet, I keep on fighting.” (P1, male, 45 years)
Other coping strategies
Positive distraction, by planning simple activities (e.g. photography, walking, listening to music, domestic tasks), was perceived as very useful to clear their mind away from the disease/pain or negative emotions. Other patients resorted to substance (a)buse, something they already did before the illness, which offered them consolation.“Listening too much to the body can lead to fear of movement and keeps you from doing things, even if they are feasible. I just have to adapt to what is achievable for myself and take that into account. And sometimes I just ignore the pain. Or when I catch up with a friend, I'm like: I'm not sick today. Then I put the disease aside and know I'll be flat the day after. So I think carefully: for what purpose do I want to have extra pain and lie down for a day? (P11, female, 38 years)
Patients engaged in social avoidance behaviours such as not talking to others about their problems or isolating themselves from the outer-world. However, another patient recommended talking openly to others, especially in case of mental illness.“If you keep yourself busy, you will feel the pain less. It pushes the pain to the background. I think it's better than taking a painkiller. (P6, male, 59 years)“Alcohol was my escape.” (P5, male, 55 years)
Complaining and cursing brought relief in the moment itself, however, in retrospect, patients admitted that it did not help them move forward.“The best remedy for me is not to talk about it. Talking about it only brings it back to my mind.” (P3, female, 39 years)“What do I have to say? I have enough problems myself, I’m not going to project my problems onto other people.” (P14, male, 72 years)
Patients emphasized the importance of putting things in perspective: comparing themselves to others who are worse off (hence realizing they can still do many things), using humour, pulling themselves up to the small things in life.If I talk and whine about it every day, it won't go away, will it? So why would you complain about it? (P7, female, 83 years)
Some patients said it was important to prioritize yourself and to allow help, however, sometimes patients are too proud.“Sometimes I laugh that I’m fat. I believe that helps, to laugh off the problem.” (P3, female, 39 years)
The following coping strategies were also perceived as helpful: religious faith (praying does not take the pain away, it only gives strength/courage/hope to endure pain), talking to fellow-sufferers, and having a pet (provides companionship and friendship).“If it doesn't go well, so be it. That’s something I’ve learned. That stubbornness has disappeared a bit.” (P6, male, 59 years)