Theoretical framework.

To explore the concept of ‘resilience in a cancer caregiving experience’, a thematic analysis with an inductive approach was chosen. This method is suitable for exploratory work in an understudied area and provides a rich, detailed and nuanced account of the data [54, 55].

Participant selection.

Principal caregivers of recently deceased middle-aged cancer patients were recruited from their client list by two Flemish Palliative Home Care Teams. An invitation to participate, including written information about the study, was sent to 85 caregivers who met the inclusion criteria: having been the principal caregiver of a patient who died because of cancer less than one year ago at an age between 40 and 59 years old; and a resident of Flanders and fluent in Dutch. Eighty-five caregivers met the inclusion criteria. Twenty-two caregivers contacted the researcher to let her know that they were pleased to participate. No letters with a reason of non-participation were returned. To maintain homogeneity in the group, only middle-aged (40–59 years) co-habiting life partners of the patient were selected, resulting in fourteen eligible candidates for participation unless prior data saturation was achieved.

Data collection.

A semi-structured interview guide was developed, pilot tested and adapted. The data from the pilot interview were not included in the analysis. The emphasis of the interview guide was on encouraging the participants to provide a narrative account of the caregiving experience. Predefined questions and probes were employed to encourage caregivers when necessary. After the analysis of the first three interviews, the interview guide was adapted to the emerging themes, and consequently, was refined after each interview. The primary topics are represented in Table 1.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Interview guide, adapted to the emerging themes after the third interview.

https://doi.org/10.1371/journal.pone.0221096.t001

To ensure that the whole spectrum of experiences was covered by the themes discovered, the participants were encouraged to share their full stories. They were asked about different aspects of positive psychological concepts and their facilitators, as well as about threats or difficulties. Nevertheless, interviews 7, 8 and 9 did not reveal new information. Hence, no new codes could be added to the code tree, and data saturation was presumed after the sixth interview. The data saturation table is presented as Table 2.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 2. Data saturation table.

https://doi.org/10.1371/journal.pone.0221096.t002

The interviews were conducted between June 9 and October 14, 2017. They took between 42 minutes and 2 hours and 20 minutes, with an average of 75 minutes each. All interviews were audio recorded and transcribed verbatim, including non-verbal signals (e.g., caregiver looking away from his wife’s photo; crying, difficulty in speaking, lowering of voice) by the interviewing researcher.

Setting.

All caregivers preferred to be interviewed at home. Only the interviewer and the caregiver were present.

Data analysis.

Nine interviews were thematically analyzed. All members of the research team took part equally in the analysis process. A thematic analysis searches for patterns within data by organizing and describing the data set and by interpreting various aspects of the research topic [55]. After analysis of the fourth interview, the first and second authors discussed the preliminary findings to fine-tune the level of interpretation.

Before the start and throughout the analysis process, some methodological issues were discussed within the research team and the following decisions were taken:

• Only repeated patterns, detected by an iterative in- and cross-case search, could be considered a theme.
• There must be consensus within each theme, ultimately providing important information regading the research question. If a theme was not relevant to the research question, it was deleted.
• An inductive approach was preferred: being a middle-aged partner of a patient with incurable cancer is rather an unexplored situation, making it plausible that existing frameworks could not directly be applied to the study data [56].
• In this thematic analysis, a comprehensive stance was taken, focusing on both semantic themes directly derived from the data and latent themes requiring more interpretative work.

The actual thematic analysis of the transcripts was a team process consisting of six steps as suggested by Braun and Clarke [55, 57].

1. Step 1: All authors have read and re-read the interviews, meanwhile searching for patterns and meanings. Immediately after each interview, the first author wrote narrative accounts of the participant’s story, providing an initial list of ideas and points of interest. All narratives were discussed among the research team.
2. Step 2: Initial codes were generated iteratively by transferring interesting features reported by the participants to a more conceptual level.
3. Step 3: Themes were developed from the initial codes by clustering relevant data. Eventually, themes were retained or rejected by consensus. The themes and codes were then introduced in NVivo 12 by the first author. Quotes were linked to the codes.
4. Step 4: A hierarchical map, including concepts and themes, was developed by the research team. Each theme was tested for accuracy, and the map was reviewed for the representation of the ideas and meanings of the entire data set.
5. Step 5: The mapped themes underwent further defining and refining.
6. Step 6: The themes and the underlying story were described and completed with illustrating quotes.

Sense of self-initiative.

Caregivers who exposed a sense of self-initiative were working towards controlling current and potential situations. They ceaselessly worked in order to reach their goals (e.g., keeping their partner alive as long as possible).

For example, when C1 heard there were no curable therapies left, she got on the Internet and finally was able to have her husband accepted into a chemotherapy program in a neighboring country.

C1: I knew it was available in a neighboring country, so I e-mailed the firm and called the local representative in advance to inquire which doctors had contributed to the study, and so on. Then, I contacted them. I received e-mail addresses, and we got accepted abroad.

Some caregivers considered the hospital as the place where life ends. Pursuing their goal of keeping the partner alive, they made their best efforts to keep their partner out of the hospital.

C4: And she was often hospitalized. You can’t do anything about it, right? It’s difficult to go there. It’s difficult to be there. I sat there for days, but you can’t do anything. Even you stop living. (…) Her sister came to relieve me, but you can’t do anything. Life stops there. That’s not the case at home.

Caregivers with a sense of self-initiative accepted the situation being a challenge instead of a crisis and took action.

C2: I immediately took action. Because we immediately knew that … well … that it wouldn’t go well anymore. They told our family one year, maybe one year and a half. Of course, I immediately took action. (…) I should say that I think, we are not people who just keep waiting for something to happen.

However, when challenges were deemed to be an invincible obstacle to reaching the goal, the caregiver found a way to overcome the barriers by fending off negativity. C1 and C4, for example, experienced talking about partners who were dying, removing all hope for a long life together. Health care professionals or friends who wanted to talk about the end of life or who came to say goodbye found the door locked.

C4: And then the palliative homecare team that regularly called and wanted to come by. But, for myself, I decreased those two. We haven’t actually built such a good relationship with the palliative team. Every time they came, they had bad news, and those people are focused on that, right.

Self-initiative caregivers were aware of their “existential aloneness”, experiencing the cancer as an unshared story. Despite all of their family and friends’ good intentions, they would finally have to deal with the cancer themselves.

C9: We were such independent people who had our lives in order. So, you’re not used to that. We weren’t used to asking for help, we never needed it. It wasn’t our lifestyle to ask for help, we did everything on our own. We only asked for help from each other. The two of us could handle everything. (…) That her illness was our little thing. Yes. [laughs]. Yes. We also did it with just the two of us.

Adaptive dependency.

Caregivers exposing adaptive dependency were willing to seek help and support to resolve their practical problems or to handle their emotional disruptions, even when the situation mainly demanded individual functioning.

Not knowing what was going to happen nor what they were expected to do when their partner died was a tremendous threat to most caregiver’s resilience.

C2, for example, tried to overcome the uncertainty and anxiety about what was going to happen when her husband died by looking for emotional support and asking her peers about their experiences.

C2: I then called on someone we know well, a good friend, whose wife also died at home, after the whole process at home and, by chance, the same GP. I called him asking, should I do that? Am I able to do that? Because, like, you’re afraid of that too, right. How is this all gonna go? And the dying, how’s that gonna go and will I be able to handle that? There are so many questions going through your head.

Although caregivers displaying adaptive dependency welcomed all offered help and advice, the advice given by her mother-in-law was skeptically accepted by C6 since it made her feel uncertain, even a failure.

C6: And she brought food and stuff, and sometimes I had this feeling that I wasn’t performing well enough anymore. Although her intentions were good, it came across as… well, sometimes you almost felt guilty, as if she thought the illness was because of me… Because she told me, for example, how I had to prepare the fish and that it had to be frozen first … She began to tell me how to do it all.

Adaptive flexibility.

Most participants adapted flexibly to the new situation by adopting a new role, learning new skills, changing their lifestyle or looking for distraction when they needed.

C3, C4, C5 and C8 either took up a nursing role, learned how to administer enteral feeding or were trained in using a PICC-catheter. C2, C4, C7 and C9 took over tasks that used to be done by the patient, while C7 described herself as “the patient’s cab-driver”.

C3: I went there in agony with him. But I did it (…) And there, in that foreign country, with those techniques. Because they didn’t know the technique of draining the fluid, they taught me how to do it in the hospital, so I could do it myself. And uhm, I did do it, but it was so difficult because I was in a different role there. In the end, I really was his nurse. (…) Then we drove back home. I had never driven that long myself. I didn’t even like to drive with his car because it was so big. Actually, I don’t like to drive at all. But I didn’t have a choice back then. So, I had to overcome several fears, but in such a situation, you just do it.

Couples adapted their lifestyle to increase the patient’s comfort (e.g., by sleeping downstairs or by taking a cab instead of the subway). At the last minute, C8 changed the means of transport because his partner was not allowed to fly.

C8: Yes, sometimes she couldn’t do this, she couldn’t fly for example (…) Normally, we would plan to leave on Saturday, and on Friday they told us that she was not allowed to fly. So, alright, fine, then we just go somewhere else with the car.

Adaptive flexibility was also expressed in the way caregivers sought out an equilibrium between caretaking and searching for distractions by taking some leisure time for themselves or by going to work for a few hours each day.

C9: Because my job became my distraction. And right when I had to start working in that period, shortly after the chemo started, it became very busy again. That became my biggest distraction. (…) And then you have a trip abroad once every two weeks. When I was over there for example, I walked, ate something with a beer, drank a bit of wine in the end… Just so I could rest a bit and charge up again. That was my trick.

For some caregivers, the equilibrium between taking care and seeking distraction was found in couple activities. They organized activities (e.g., a small bicycle trip or having afternoon tea or coffee together) or they went on a short trip.

C1, C8 and C9 told about the journeys they took after hearing the diagnosis and how much they had enjoyed those times.

C1: We still have done a lot and enjoyed many things together. We started planning big journeys when he began to get sick. I’m telling you, at the end of August, we travelled abroad, and in September, we still went biking in a neighboring country for the weekend. We combined those things and made the best out of it.

However, not all journeys with a terminally ill patient turned out to be successful. Some could be considered as rather resilience-threating. C2, C3 and C5 talked about how much of a challenge it was to travel with their ill partners.

C3: I’m telling you, a month before he passed away, we travelled abroad, against medical advice. But that was difficult. [very emotional]. I was so afraid. We stayed at the farm of some friends, something we had been doing for the past 15 years. Of the ten days we were there, he was doing well for three days, the rest of the time he had to stay in bed, so we couldn’t do anything. The days went by slowly. And uhm, when you’re in a strange country, and you don’t know the language. I was really scared at that time. It was like: What if something happens here? And that drainage didn’t go as it was supposed to go. He had a lot, and I mean a lot, of inconveniences and pain.

Positivity and optimism.

When caregiving was mainly characterized by positivity and optimism, the caregiver succeeded in giving positive meaning to the crisis. They called the caregiving experience a chance to give something back, to give the best of oneself or to work towards a better relationship.

C4: It might be strange to say, but it does give the chance to show the best of yourself.

A positive state of mind and the capacity of meaning-making through adversity was immediately linked to finding benefits in the caregiving process. Almost all participants discussed how their relationship with either their partner or family strengthened. Moreover, most of them ended up accomplished as they felt respected, important and trusted.

C3: The fact is that your children appreciate you even more. They still tell me regularly: “But mom, what you did for our daddy, there are not many people capable to do such things.” That way, you get something back, right?

C8: Actually, how something so horrible [as his partner who was dying from cancer] can bring up such beautiful things. Yes, that’s just it. It was horrible and it still is, but… In the end, it was something beautiful, especially the moment she told me she had been happy. That gave me such a satisfied feeling.

However, for some caregivers, finding meaning in the crisis was not obvious. They could not understand how cancer could attack someone who did not deserve it. C1, C2, C6 and C7 emphasized how healthy their partners had been before the cancer. Feelings of anger and helplessness clearly impeded their resilience.

C6: And sometimes that brought up my anger of why it happened to us. [husband’s name] had, in my eyes, always lived healthy, he didn’t smoke and didn’t drink very often. Just a bit at a party or something but never too much. That makes you think, what did he do to deserve all this? He also didn’t weigh too much. I do suppose we lived quite healthily.

Positivity and optimism were even expressed by attempts to fulfill the patient’s wishes. For example, the caregiving period of C2 and C8 was complete with social gatherings and activities: friends were invited, and the caregiver tried to create as many moments to cherish as possible. C3’s husband asked her to organize a goodbye party for more than a hundred guests. While C9 took care of his partner’s children during her hospital stays, because he knew how important this was for her.

C2: And he, too, had such beautiful thoughts. For example, he said: “I want to connect people.” And it was true as well, the thought of connecting people. That’s just beautiful, isn’t it? So, well, that’s what he was doing, and I thought I had to follow him in his thoughts, right? I want to invite people to my home, even people who don’t know each other, but those who you think will like each other. And if they do, that’s so nice to see. He enjoyed all that as well.

C9: I know that for X. the children rank from one to three, and then from four to 99, and I am 100. I knew that was very important for her, the children’s lives should not be disturbed. So, what happens next? The clothes need to be washed, food must be ready on the table, and they needed the chance to go to school and practice a sport. So, I did everything I could to make this possible.

Optimism was often expressed as sustaining a sense of hope and trust. Although the caregivers wanted to believe everything would turn out for the best, hope was often tempered by their realism: they hoped for a miracle but took into account that the chance of happening was extremely low.

C4: You know that the results are coming, and you just need to wait constantly. And it has never, almost never, been good news. Sometimes a spectacular improvement, and then, you know, there is still hope. It has happened a few times that it indeed was very spectacular. Even the oncologist called us on our way back from the hospital: I’ve got the results, and they are better than expected. Then, it is worse again the next time.

C1: Enjoying, waiting, and we will stretch time hoping you can stretch it until, well, until medical science improves. And if he could have extended his life for a couple more years, then the immunotherapy probably would have been available for [patients like] him as well, uhm…

For some caregivers, being able to maintain normality made them hopeful their life together could last for a very long time. C4 talked about the efforts he and his family did to guarantee the patient’s sense of connectedness with the family.

C4: My wife was here at home, she has … [cries]. Her bed has been here six years. Meanwhile, she lived here in the middle [around the kitchen]. And the kids also cooked very often to get her involved in the smells and the noise. (…) The kitchen was, it was her kitchen, so yeah. In her free time, she made jam and stuff like that. But the kids took that over. That has been very important though. And I’m not a good cook, but I did cook a lot with the help of books, etc. Yeah, that was something important here.

Availability.

Although the caregivers mentioned that they had never called the GP or anyone else in the middle of the night, they considered it of utmost importance to know that people were available at any time.

Regular visits by HCPs, were highly appreciated and were considered extremely supportive.

C6: And when she [GP] came, she took her time. Once in a while she drank a cup of coffee with us. We never had the feeling we were a number and that we, you know, doctors live a busy life, but she always took time for him and, well, yeah, I do appreciate that. And I knew, she said: “if something’s wrong, day or night, you can always call me.” I felt supported. I never had to call her at night, but the fact she always said that, then you know it’s okay to do that.

C6: Uhm, so they have come to visit very often. They also said: ‘‘If something’s wrong, just tell us. If we can help with something, we will.” You know you can go somewhere when you need a shoulder to cry on or when you want to tell your story, I could always go to someone.

Some caregivers were afraid of being alone with their dying partner while others did not want the patient to be left alone, and they emphasized the importance of always having someone around they could trust.

C2: The last 14 days, I told the children: There is one thing you need to do: I’d like to always have someone with me. I don’t want to be alone, just in case something happens, so I’m not alone because I was afraid of that. And uhm, they did. There was always someone.

Meaningful relationships.

Most participants talked about how their relationships altered after the diagnosis by becoming stronger, which are paramount in sustaining.

C7: All this changed the relationships, right? That friend who did the night watch, has been my, well, badminton partner for the last ten years. But that relation has risen to another level, almost mother and daughter.

Other relationships became more tenuous and were perceived as resilience threatening. This became very clear for C3, C4 and C5, when family members did not visit or postponed their visit until it was too late.

C3: Well, I actually thought the biggest challenge was, uhm, making the family aware that they should try to spend as much time as possible with their brother, or son. Like, when you called asking if they could come visit, they always postponed. Time becomes a whole new dimension when, you know, like, it’s going to end. His siblings, for example, didn’t see him any the last year. That was difficult for me.

Most caregivers were grateful for being surrounded by people who watched over them. C2, C3, C4 and C6 could share their emotions, difficulties and obstacles with their children and family. C2 called this sense of belongingness “the strength of the family”, an expression that was recognized by the other participants.

C2: Luckily, we have a very strong bond with the children, three beautiful kids. They are children with a certain capacity but also who can show emotions. Luckily, we have talked a lot.

C4: Yes. The youngest has …, he’s very quiet, he’s a very quiet boy. But he has taken care of her. Just sitting right next to her and… yeah. You could feel the fact they all came home. And not a little,but six months, six months living back here, all five of us. Her sister has visited very often, her youngest sister who didn’t come regularly before because she lived far away, also visited very often, yeah, … We did it as a team.

C5, C7 and C8 felt rather connected with their friends. In their stories, they emphasized how they could rely on them for advice or practical and emotional support. C7 compared her situation with a bible-parable.

C7: The gospel was a parable of the paralyzed, of carrying and being carried. I carried my husband. But you can only carry once you’ve got enough carriers. Our entire entourage, acquaintances, friends and there were a lot of them, believe me, has, in the end, because of that disease, I could count the ones who remained on two hands. But the ones I still have, the ones I can count on two hands, they carry you through.

The patient’s role.

From the participants’ stories, the role of the patient and the quality of the relationship were found to be decisive elements in the caregiver’s resilience. Most caregivers spontaneously mentioned the quality of their relationship with the partner, talking about, for example, happy marriages, soulmates or by good times spent together. Others emphasized how their relationship was altered by the cancer, mostly getting better than it ever was before and considered this a benefit from caregiving. More than once, love was referred to as the most powerful prerequisite of resilience.

C2: But yeah, be careful, I think you can only do such things when there is a lot of love. Then you can really do it. Really. And there was a lot of love. Yeah, then you really do it.

C8: Yeah, it’s like, we were together for almost 20 years. We do so much together. We really were two soulmates. So, yea, … Despite it being such a black period, it did bring us so much closer to each other. And that’s the most beautiful thing about all this.

Knowing the patient was happy despite the cancer, supported the caregiver and resulted in feelings of accomplishment.

C2: And then he wrote a poem in one night. We also put that on his prayer card. He never wrote, he never wrote poems, so, it really means a lot. (…)” I am and I will stay a very happy person”. And that means a lot to me.

When the patient was optimistic and positive-minded, providing assistance seemed much easier for the caregiver, which in turn, left him/her optimistic too.

C4: She was always very positive. Of course, that does a lot, right? It’s a story of interaction. She never complained. If you look at it that way, it’s a very easy way of caretaking when you’ve got a partner who also accepts it [what you do for her] and who handles that in a good way.

C9: I went along with her positivity. Because when your partner is so positive, you’re not going to tell her that it may only last six months or … No, then you just pull away the belief, you pull away all the hope from under her feet. You simply don’t do that.

On the contrary, when the patient was in a depressed mood or was behaving inappropriately (e.g., drinking too much or not wanting to get out of his/her bed), the caregiver experienced higher stress levels and described this stage of the caregiving process as much more difficult.

C2: We went to the beach for three weeks, and there he had a lot of those moments that he, yeah, that he struggled to get out of bed. That was very difficult. Yeah, that was not my husband at that moment. That really was not my husband. It did improve a little bit afterwards. But during that holiday, it was very difficult.