Nineteen participants, being part of a CAS of an intimate partner of a patient with advanced cancer, provided a rich account on how they perceived being part of one of the eight studied support networks. The resultant matrix from the analysis of their stories allowed for all CAS principles to be identified in most of the studied support networks surrounding the intimate partners. However, the principles were adopted in variant ways, resulting in a range of behavioral patterns, as described below. Obviously, in support networks represented by only one participant, some CAS principles were not discussed. For instance, the fuzziness of the CAS boundaries remained unclear, and the participants did not report on any tension or paradox within the support network. The matrix resulting from the analysis is given as Table 2. In the illustrating quotes participants are represented as SN (support network) 1–8 and P (participant) 1–4.

Table 2 Matrix illustrating how the CAS principles are represented in the support networks’ behavior Fuzzy boundaries

Each member of a CAS is incorporated in other CASs. Although one member responds almost exclusively to the person with whom they are in direct contact, the dynamic interactions can spread throughout adjacent CASs.

Being aware of other groups in the intimate partner’s support network

Most participants were aware of existing networks or people involved in the support of the intimate partner. Although some could describe in detail what these networks did and how they supported the intimate partner, others had no insight into the actions of other networks.

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

The more the participant’s and the intimate partner’s lives were intertwined – either through family ties or through shared experiences – the more they shared their emotions with each other. The participants admitted that they could not always cope with their emotions prompted by their commitment on their own. Hence, they shared their stories with other people who were less involved or who did not take part in the intimate partner’s support network.

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

Although each member of a support network acts autonomously, internalized basic rules shape their behavior.

Maintaining communication without being intrusive

The participants expressed their commitment and willingness to listen to the intimate partner’s stories and they created opportunities to talk. For instance, they invited the intimate partner for a walk, to have tea in the garden, or to sit on the front porch. Here, they respected the intimate partners by leaving the initiative to talk with them without asking questions themselves. Furthermore, they strived toward an open and honest communication by not avoiding difficult topics.

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

Professional caregivers, family, and friends expressed their unconditional availability for guidance and support of the intimate partner. However, they did not intervene and waited patiently for the intimate partner to take the initiative.

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

The participants felt most appreciated by the intimate partner when empathy was expressed. Moreover, acknowledging the intimate partner’s vulnerability could positively influence the relationship between the partners and their support networks.

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

The participants emphasized how they unconditionally supported and assisted the intimate partner, often driven by connectedness, a strong sense of reciprocity, or a genuine affection for their family member or friend.

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

To allow the intimate partner to focus on the care of the patient only, the participants illustrated how they avoided being a burden to the intimate partner themselves by hiding their emotions of grief and sadness and by attending to their own self-care.

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

The behavior of a CAS is characterized by non-linear interactions that can be positive (a modest action causing a disproportionate reaction) or negative (an action eliciting a minor or no reaction).

Reassuring availability and support for autonomy can elicit non-linear behavior

When the support network members adhered to the internalized basic rule of reassuring availability with respect for the unconditional autonomy of the intimate partner, they often remained passive, waiting for the intimate partner to take the initiative. However, the same internalized basic rule could elicit positive non-linear behavior such as responding to a request without delay or adjusting travel plans in order to maintain a line of unbroken communication and a quick return home should the situation warrant.

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

Being informed about the patient’s diagnosis of advanced cancer could remind the support context members of former experiences that consequently elicited excessive emotional reactions, expressing themselves in various ways, such as crying or displaying avoidance behavior.

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)

In addition, intense emotions could be provoked in the intimate partner (e.g., by discussing the future or by providing them with a gift). Such gestures confronted the partners with their own difficult situation and the contrast to all those not facing a health crisis.

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

In certain cases, intimate partners waited to share their stories and explain the circumstances in which they found themselves. After disclosure though, they discovered that people began to offer empathy and expressed a willingness to support.

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

All interviews were conducted during the COVID-19 pandemic. The fear of infecting the patient and the measures in force at that time resulted in extremely careful behavior and avoiding all physical contact.

Attractor based behavior

In a CAS, attractors shape the behavior of the system. Accordingly, recurring actions of the studied support networks could be framed as a result of their striving toward the following three attractors:

Feeling meaningful and appreciated

Family members and friends as well as professional caregivers illustrated how gratefulness and appreciation sharpened their intrinsic motivation to support the intimate partner. For instance, they attended to the others’ needs, shared meaningful experiences, and did their best to create memorable moments.

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

The participants were attentive to what events could generate happiness and joy. As such, they intended to spread positivity throughout the intimate partner’s support network as often as possible.

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

The intimate partner’s friends and family shared how they strived to meet as often as possible (e.g., by regularly visiting, inviting the intimate partner for a walk), simply because they enjoyed being together or because they felt strongly connected.

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

The history and experiences CAS members share and their mutual relationships can stimulate the dynamic interactions within a CAS as well as paralyze them.

Sharing more experiences and forging closer relationships means assistance is more easily offered and accepted

As a result of closer relationships and shared experiences between the intimate partner and support context members, an increase in assistance was offered and accepted. Moreover, the intimate partner, by accepting help, motivated the support context to put forth more suggestions for help, thereby often overriding the internalized basic rule of leaving the initiative to the intimate partner.

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

When meaningful relationships within the support network threatened to break, the members made efforts to restore them by encouraging contact between each other or by reminding others of the responsibilities assumed in a relationship.

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

When tension arises between the internalized basic rules and one’s own concerns or emotions, the behavior of the CAS becomes increasingly unpredictable, even paradoxical.

Reassuring availability for guidance and support is hampered by the context member's own concerns and needs

Although the intimate partner’s family and friends emphasized the importance of being available for guidance and support whenever necessary, they sometimes preferred to take care of their own concerns and needs first.

[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)

Moreover, a participant pointed out that providing guidance and support was actually an internalized basic rule prone to non-linearity since the condition was ultimately relinquished to the intimate partner.

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

Providing emotional support was easier when the members of the support network were not hindered by their own feelings or were less emotionally involved (e.g., when they were not connected to the patient or if they actually lived far away). Furthermore, emotional interactions could be disrupted when one had to deal with opposite feelings stemming from different roles in an adjacent CAS, as one friend pointed out how difficult it was to support the intimate partner who was grieving since she had recently fallen in love and felt the happiest on earth.

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

Despite bad relations with the intimate partner, some family members unconditionally adhered to the internalized basic rule: one should be available for one’s family under any circumstance. For them, the quality of the relationship was subordinate to the need of being available.

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

During the caregiving process for a patient with advanced cancer, the behavior, actions, and communication of the intimate partner’s support context evolve and adapt resiliently to the specific needs related to the cancer stage.

Resulting from a worsening prognosis, the communication style adapts to this new reality

Shortly after a patient was diagnosed with advanced cancer, the communication within the support network and with the intimate partner was mostly spontaneous and open. Discussions about difficult topics such as death or dying were encouraged and old irritations were put aside. However, when the patient’s prognosis worsened, the communication within the support context often became more structured, more deliberate, and less spontaneous. One support network even established an information circuit to guarantee communication under all circumstances.

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

The internalized basic rules were reversed when the situation became too demanding for the intimate caregiver. For example, when the context members realized that the partner was getting overloaded, instead of adopting a wait-and-see attitude, they set aside the basic rule (reassuring availability of guidance and support with respect for the autonomy of the intimate caregiver) and intervened by making any necessary decisions or by taking over tasks.

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

The support network matched the care supply to the demands of the intimate partner. As such, when the patient’s prognosis worsened, the number of contacts increased due to an increased sense of togetherness, and the support network members often took up a shared responsibility to support the intimate partner.

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

In the support networks, each member took on a role at their own discretion. However, in time, the networks became more organized as people took up different roles.

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)