Background
Principle | Meaning |
---|---|
Fuzzy boundaries | The system is open. Each member of the system is embedded in other systems. Although one member responds almost exclusively to its primary member, the dynamic interactions within adjacent systems affect the interactions within the index system |
Internalized basic rules | Each member of the system acts autonomously, driven by instincts and constructs, which has been learned by previous experiences |
Non-linear behavior | Small variations in input can cause very significant changes in output. Even when members interact only with a few others, the effects are propagated throughout the system |
Attractor-based behavior | Rewarding interactions will produce repeated behavior either immediatelly or after a series of intervening stages. This may result in increased integrity, autonomy, and ideals |
History-based, path-dependent behavior | Systems evolve. The past is partially responsible for present behavior. Systems are sensitive to their initial conditions. Hence, the same force might affect systems differently dependent on initial conditions |
Unpredictability, tension, and paradox | The overall behavior of the system is not predicted by the behavior of the indvidual elements. The system oscillates between order and chaos. A constant flow of energy is needed to maintain the organization of the system |
Adaptivity | The system’s internal structure is (re)organized without external intervention. The interactions are more important than individual actions. The interactions are interconnected and lead to novel behavior. Systems that are simultaneously ordered and disordered are more resilient |
Methodology
Research team and reflexivity
Study design
Theoretical framework
Participant selection
Setting
Data collection
Data analysis
Ethics
Findings
CAS principle | Fuzzy boundaries | Internalized basic rules | Non-linear interactions | Attractor-based behavior | History-based behavior | Tension and paradox | Adaptation | |
---|---|---|---|---|---|---|---|---|
Support network 1 | Family 1 Friends 2 Healthcare professional (HP): 0 | A1 – A2 | B1 – B2 | C1 | D1 – D3 | E1 | F1 – F3 | G1 – G3 |
Support network 2 | Family 1 Friends 2 HP: 0 | A1 | B2 – B4 – B5 | C2 | D1 – D2 – D3 | E1 – E2 | F1 – F2 – F3 | G1 – G2 |
Support network 3 | Family 3 Friends 0 HP: 2 | A1 – A2 | B1 – B2 – B4 – B5 | C2 – C3 | D1 – D3 | E2 | F3 | G1 – G2 – G3 |
Support network 4 | Family 3 Friends 0 HP: 0 | B1 – B2 – B3 – B4 – B5 | C1 – C2 | D1 – D2 – D3 | E2 | G1 – G2 – G3 – G4 | ||
Support network 5 | Family 1 Friends 2 HP: 0 | A1 | B1 – B2 – B4 | C1 – C2 | D1 – D3 | E2 | F1 | G2 |
Support network 6 | Family 0 Friends 1 HP: 0 | A2 | B2 – B3 | C1 – C4 | D1 | E1 – E2 | F1 | G1 |
Support network 7 | Family 0 Friends 1 HP: 0 | B1 – B2 | C1 – C3 | D3 | E1 – E2 | G2 | ||
Support network 8 | Family 0 Friends 0 HP: 1 | B2 | C4 | D1 | G2 – G3 |
Fuzzy boundaries
Being aware of other groups in the intimate partner’s support network
He does have friends over there. One of his friends is a psychologist, so he can tell him anything. (SN5 – P3)
Sharing emotions and concerns beyond the group’s boundaries
My friends know about it [the patient’s story], and occasionally we talk about it. If I tell it to one friend and I say: this is terrible … Of course, it’s terrible. But if it doesn’t happen in your own household, fortunately it doesn’t affect you as much. (SN6 – P1)
Internalized basic rules
Maintaining communication without being intrusive
But most of all, she felt the need to talk about it [how she experienced her husband’s diagnosis]. And, I thought, let’s get her out of her house. Let’s have a cup of coffee together and talk. Or we could go for a walk so that she feels comfortable to tell her story. I wanted her to be alone with me so that she could talk freely without her husband around. (SN1 – P2)
Reassuring availability of guidance and support with respect for the autonomy of the intimate caregiver
Then we told her: “Mom, if you think we could do something to help you, just ask. Don’t feel embarrassed. Yeah, we have our own life but dad and you, you’re so much more important than our job or anything else.” (SN4 – P1)
Acknowledging the intimate caregiver's emotional vulnerability in an empathic way
If something would go wrong with her [the patient], I’m almost 100% sure he [the intimate partner] will break. I try to avoid this by talking to him regularly. Not to lecture him, but to listen and to say: “Yes, if you did everything in your power…” I’ve certainly made mistakes myself which I’ll regret for the rest of my life. But, I’m just a human being, right? With my gifts and faults. But I try to support him. It won’t be easy for him. It’s already difficult, that’s for sure. (SN6-P1)
Providing reciprocal support and assistance to loved ones
I would say, well, she’s my mom. I love her very much. She was always there for me too. What she’s going through now is probably the most difficult thing she’ll have to endure in her life. So, the least I can do is to be there for her. (SN3-P1)
Avoiding being an extra burden to the intimate partner
How can I get rid of this blanket of depressive feelings that’s hanging over me? It doesn’t help me and [when I have negative feelings myself] I won’t be able to care for someone else either, right? (SN4-P1)
Non-linear interactions
Reassuring availability and support for autonomy can elicit non-linear behavior
By being attentive and responding to his queries, right? If he needs me, I’m there as quickly as 112 [emergency number in Belgium], that’s for sure. (SN6-P1)
Discussing the future, exhibiting gestures of goodwill, or sharing experiences can evoke non-linear emotional reactions
When [the patient] was diagnosed, the housemaid said: “Oh, my brother also died because of cancer and I’m afraid to see that phlegm again. I can’t deal with this anymore.” After this she said that she didn’t want to come anymore. Since then, she doesn’t visit my mom any longer either. So, it has become an awkward situation, and it was another hit mentally for my mom. (SN3-P1)
I’d bought her [the intimate partner] flowers. “You spent your money on this?” she asked. A small flower when I felt she wasn’t coping well. So, yeah, I brought her flowers, beautiful flowers, the smallest bouquet [laughs]. I know she likes receiving flowers. But at first, she didn’t want to accept the bouquet. However, at night, she started sending messages to say: “I’m sorry for being so brutal. All those people around me seem to be happy, and I must always pretend [to be happy as well].” After messages like these, I knew she was not doing well. (SN2-P2)
Explaining the intimate caregiver's situation can elicit non-linear empathic reactions
At work, she [the intimate partner] pinned a leaflet to the wall stating that her husband was palliative. After, you could see that a lot of customers were suddenly startled and much friendlier towards her. People that are otherwise very strict and rigid now showed empathy and became involved. It all feels strange but I think that’s very comforting to her. (SN3-P1)
COVID-19 measures can lead to overly cautious behavior
Attractor based behavior
Feeling meaningful and appreciated
I never feel forced to do anything. I do all this of my own will. I’m the daughter-in-law now [hesitates] and I want to be a good one. I want to be there for those people, even in bad times. They are my family now. And above all, I know that I’m also doing my boyfriend a favor. But a simple thank you is already enough. It feels good when you can do something meaningful for them. (SN5-P1)
Recognizing sources of joy and spreading positivity throughout the support network
I know that they [the patient and partner] love their granddaughters. That’s their source of joy. The more they see them, the better. That’s what makes a person happy. Just seeing them walk around or being able to talk to them. I know that’s important. And me, well, we are not the kind of people who take a hundred pictures or videos of their children, but we deliberately share these with them more often now. (SN4-P2)
Feeling connected and enjoying each other’s company
We also often said to each other: “Shall we go and see how the grass is growing?” [laughs]. So, we sat down on a bench, drank something and talked about all kinds of things, including the cancer and [the patient] and about him [the intimate partner]. He liked this and it was nice for me too. (SN5-P2)
History-based behavior
Sharing more experiences and forging closer relationships means assistance is more easily offered and accepted
I’ve never pushed him to talk because I didn’t know him well enough. But now, I would try to convince him a bit sooner, since now we get along very well. But back then, I was more cautious. In the past, I would have left him alone and if we weren’t going to talk, it was okay. (SN5 – P1)
Making an effort to maintain continuity in meaningful relationships
It was the same with my brother. She [the intimate partner] said: “I haven’t heard from him in a week, that’s not normal.” And yes, that isn’t normal because in that week [the patient’s] health deteriorated dramatically. So, I sent my brother a message that said: “Look, you really should call mom because she needs you, you can’t let her down.” (SN3-P1)
Tension and paradox
Reassuring availability for guidance and support is hampered by the context member's own concerns and needs
[Two friends were shopping and having coffee together when the intimate partner called them]. She insisted we both come over [to talk]. We both wondered if we should go see her or not. However, we decided not to go since it was our day off and that we both work full time, and since she [the patient] was in hospital and was being well cared for. (SN2-P2)
If I can support him [the intimate partner]… Well, I tell you this in confidence that, in fact, no one in the world can help him. There’s only one person who can solve that problem [dealing with the patient’s cancer diagnosis] and it’s the caregiver himself. You can hand him a tool, but if he doesn’t know how to use it, he can’t do anything with it. In the end, everybody should be a bit self-taught. (SN6-P1)
Empathic involvement can be hindered by the need to cope with one's own emotions
I want to be there for her [the intimate partner], but her partner [the patient] is not really my friend. I like her, and she’s always welcome here, that’s not the point. But I decided not to get involved too much. I thought I should be there for her [the intimate partner] in the first place. If she breaks down, I don’t want to have to deal with my own grief at the same time. (SN2-P2)
Setting aside pre-existing personal history and issues
From the start, I just flipped the switch in my head and said to myself: “I must be there for her. I’ll put myself second for now. I really must be there for her. I should try to help her wherever I can so that her life will be a bit easier again.” And that’s exactly what I’ve done. (SN1-P1)
Adaptivity
Resulting from a worsening prognosis, the communication style adapts to this new reality
I just know that we, my siblings and I, noticed that it all was too much for mom, with the administration, the care, and so on. So, at a certain moment, we decided to have an island council as we called it, a family council. It wasn’t my mother’s idea, but one of my sisters who arranged this. (SN4-P1)
Contextualizing the internalized basic rules
And at that moment, the doctor said: “Someone has to come now [to help with the care for the patient].” So, the GP basically decided for her that it was too much right now and that she couldn’t do this all alone anymore. (SN3-P3)
Strengthening the feeling of togetherness and maximizing intimate group contact as the prognosis worsens
I stayed there once during the night. Well, in his last moments, she was never alone with him. Her daughter was there too, and I never thought it would be possible for me to stay with him until the very end, but, yeah, it felt so natural and it all happened spontaneously. I think it’s most important that he could stay and die at home, surrounded by [his loved ones] in his living room, and never alone. For her [the intimate partner] too, that must have been most comforting. (SN3-P2)
Allowing for the natural evolution of roles within the system
If I describe the team, my mother [the intimate partner] is the leader, the project manager and we are the team members. We all have different roles in this. There is [one of the siblings], who’s always the prepared reader and is the one who provides information in a way we can all understand and make use of it. [Another sibling] mirrors my mom and tends to be an emotional buffer. I’m the ice breaker. If things are left unspoken, I initiate the discussion. (SN4-P1)