Eight focus group interviews with partners of prostate cancer survivors participating in a community-based football program implemented across four clubs in three regions of Denmark were conducted. In total, 76 invitation letters were sent to partners of FCPC players. As a result, 39 women were included in the current study and participated in the focus group interviews. Reasons for the 37 who did not participate were no response (n=13), unable to attend interview (n=10), lack of interest (n=10) and accepted invitation but didn’t show up to interview (n=4). The average duration of interviews was 78 minutes (standard deviation: 15 minutes). Number of participants per interview and characteristics of their partner with prostate cancer are presented in Table 2.
Table 2. Number of participants and partner characteristics across interviews
|
TOTAL
|
Club A (FG 1 and 2)
|
Club B
(FG 3 and 4)
|
Club C
(FG 4 and 5)
|
Club D
(FG 7 and 8)
|
Number of women per interview
|
39
|
6 and 5
|
5 and 4
|
7 and 3
|
6 and 3
|
Mean age (years) of partner with PCa [min;max]
|
68.4 [50;80]
|
67.1 [54;78]
|
64.7 [50;75]
|
70 [63;80]
|
71.7 [68;78]
|
Time (months) since partner’s diagnosis of PCa [min;max]
|
26 [0;117]
|
21.3 [1;116]
|
35.8 [0;88]
|
28.7 [4;117]
|
18.1 [6;31]
|
Time (months) since partner’s inclusion in football [min;max]
|
14.3 [4;44]
|
14.2 [11;19]
|
11.9 [4;18]
|
17.6 [5;44]
|
13.4 [9;14]
|
Number of partners undergoing ADT
|
21 (69%)
|
8 (72%)
|
4 (44%)
|
5 (50%)
|
4 (44%)
|
FG=Focus group; PCa=Prostate cancer; ADT=Anti-androgen therapy
Analysis of the eight focus group interviews yielded four themes and various subthemes revealing the spouses’ experiences with, and thoughts about their partner’s participation in a community-based football intervention: 1) Hope of a new beginning; 2) My new partner; 3) Football first; and 4) Invisible needs.
Table 3. Overview of themes and corresponding subthemes
Main theme
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Subthemes
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Initial themes (Sample)
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Hope of a new beginning
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Powerlessness
|
Football as (last) resort
Fighting back at the disease
Better shape/improved fitness
Infected by partner’s happiness
A new person
New priority
Roles and responsibilities
Affection
Planning and anticipation
Adjustment (of other activities)
Support (keeping up motivation)
Not just for fun/a serious game
Football as a male sport
Restored masculinity
Prostate cancer taboo
Anxiety and worry
Changed structures of daily life Positive competition Relief of care burden
Feeling proud
|
In sickness and in health
|
Fighting to win
|
My new partner
|
Renewed strength and energy
|
Admiration and positive feedback
|
Much needed sanctuary
|
Football first
|
Mutual commitment
|
Personal sacrifices (soccer mom)
|
Invisible needs
|
Unacknowledged wellbeing
|
Insecurity
|
Focus group therapy
|
- Hope for a new beginning
The first theme, hope for a new beginning chronicled the challenges experienced through their partner’s prostate cancer and the optimism afforded by the invitation to their partner to engage with a community-based football program. Fighting the disease together was described by the women as being a matter of course. They expressed the naturalness of being actively involved, explaining this as a well-established practice in their relationships. They referred to their marriage and to a long life together with their partner, which meant a bond and pledge to stick together through thick and thin. One woman explained:
“We have been married for so many years, so it’s a natural thing that we are two; it’s not a disease he has, it’s something we need to get through together.”
Accordingly, the women typically used the pronoun 'we' when they talked about their partners diagnosis, describing themselves as one half of a whole, sharing the job of managing and coping with the illness. Indeed, several participants explained precisely when they were diagnosed with the disease, what treatment they were offered and how it had affected them. Within the women’s narratives there was also a strong focus on understanding PCa and the disease aspects. Participant narratives typically drew from the entire illness trajectory citing the diagnosis and haste toward making treatment decisions. PSA’s, PCa staging and treatment decisions were ever present constructs that permeated the efforts (and uncertainties) of the couples. Women also sought information and affirmation from the other focus group interviewee’s with regard to their gendered practices and involvement in their partner’s illness. For example, one woman said:
“We need to have blood tests taken in a month, and we’re already on the internet the following day to find out what the blood tests say? You do that too, right?”
Contrasting this disease focus (and the efforts to orientate to often foreign concepts and contexts) the invitation to participate in a community-based football intervention afforded significant hope for a new beginning. Several partners talked of the football training program with deep gratitude and some talked of a strong sense of relief at the prospect of their husband being able to take part in sport with other men who were experiencing prostate cancer. The strength-based affordances by talking to what men could do (as distinct from what they had lost through prostate cancer and were working to recover) were paramount. Afforded was respite from the pressures that had accompanied the men’s transition to prostate cancer and the aftermath of primary treatment[s].
“Well, football in FC Prostate helps them not to become resigned. I mean, just give up or not motivate themselves to do anything. And in that sense, it's very important it's there. It also feels like it's part of the cure, I mean, in order to get better again you mustn't give up, right?”
Within this context female partners talked to the value of masculine norms for being active, resilient and autonomous in fighting for their recovery. Symbolic, the will and strength to compete emerged as hope that gains were imminent despite the backdrop of prostate cancer. Accordingly, the women described the football as a means of preventing their partner from sinking into sadness or depression wherein the intervention provided a public platform to fight back and not succumb to the disease. Timing of the invite was also critically important. The losses had indeed accumulated for many men – and by extension their partners had witnessed and experienced significant grief. In this regard hope for a new beginning was afforded by the football program in that it demanded the men be active, and perhaps assertive in taking up the opportunity to participate. The decision to participate was also joint in most cases, as a partner summed up in suggesting;
“We said ‘yes’ to football right away. It came right at a time when everything was falling apart. It saved us.”
- My new partner
The second theme, my new partner, highlighted the women’s experiences of the benefits that flowed from the men’s participation. Cited were physical and psychological gains for the men, and in parallel the women drew significant benefits. The transformative effects were highlighted, and several women described the feeling of having gotten their partner back as a by-product of losing the anxiety that had characterized his prostate cancer and their illness journey, “.. then he got started on this football and he revived completely and became a completely different person again.”
The women appreciated the men’s familiarity with football, one that deeply aligned to pleasure and lifelong culturally and gendered normed interests. This turn signaled a break from the biomedical focus on prostate cancer and offered hope that perhaps things previously enjoyed (such as football) might be re-instated:
“It’s wonderful to see that he has found his playful inner child; it’s really good, he puts his life and soul into it!”
With pride (admiration) and joy in their voices the women described experiencing a positive change in their partner’s physical prowess including improved ability to complete daily tasks, which they attributed to the conditioning that football provided. The physical benefits transcended the domestic sphere wherein men became more active in the home expending their newfound energy to benefit the couple:
“I can tell that his fitness has significantly improved. We live on the third floor and now he’s the one carrying our groceries from the ground floor to our apartment.”
The sense of purpose and resumption of preexisting gender roles increased the presence of the men, simultaneously easing the work (and worry) of many female partners. Some women described how the football had given them the opportunity to actively affirm their new partner efforts towards better health and physical activity in their everyday lives. For some, football also levered their caregiving capacity through collaborative efforts for joint fitness. These gendered practices often included some friendly rivalry, as illustrated by these quotes:
“It really has brought a change to our lives, a change for the better! We have a two-year-old grandchild and he has so much more energy to spend time together with him.”
“It’s grown out of the football, I’m pretty sure that’s what set us off and got us going with doing a physical activity together.”
“All the family join in [annual family run] and this year he joined in and he ended up beating me, so his fitness has definitely improved.”
The women affirmed each other, nodding to each other in assent, that there had also been psychological changes in their men. They smiled and laughed explaining that the positive change in their partner's moods probably had something to do with feeling stronger and being able to manage more physically. Here the relational aspects emerged wherein the partner talked to the muscularity embodied by her husband – as a source of self-esteem that flowed benefits to his mood. A participant exclaimed:
“He can feel his muscles are better and he has it on paper, too, that they have become, yes bigger or better, so he’s happier in one way or another and that’s a strange thing, right? I actually think I can feel that as a wife.”
According to the women, after training their partners talked keenly and earnestly about what occurred, which for the participants suggested enthusiasm and commitment, ‘things’ that had been absent in the presence of prostate cancer. A woman explained:
” My team lost today! Never mind, I said, isn't it all just a bit of fun? ‘No way! It’s deadly serious – we can’t lose!’ There would have to be a major reason for him not to go to the training.”
The women reported that their partners were proud to contributing, which they put down to football and the camaraderie with the other men that came from being in a team and competing with others. The women referred to the football as real “men’s sport”, which their partner felt comfortable with because it was a familiar activity. The women agreed that football supported their partner’s feeling of being a man and that it relegated prostate cancer to the background:
“It's a male activity taking place in the middle of the treatment for the illness and all the things about it [prostate cancer] that make you feel somehow unmasculine.”
Indeed, many of the men were retired, and the football commitment offered purpose, social connection and some legitimate time away from home – as well as respite from the uncertainty that could accompany prostate cancer and its treatments. The women described how football had provided a kind of sanctuary, and how they were reassured that their partners were renewed and regaining some vigour through being involved. A woman explained:
“I also think I can notice the effect of the social aspect on my husband, the fact that they talk together, although they don't all have the same diagnosis or have had surgery for the same thing or to the same degree, but I can tell from my husband’s reaction that he really enjoys himself.”
- Football first
The third theme related to the women’ accounts of the couple’s mutual commitment to the men’s involvement with the football program, including experiences of how football had become a priority overriding other non-football activities. When asked about the importance of the football training for managing the disease, the women answered again in the third person plural, affirming, “We’ve become very fond of it [football])” explaining that the football provided a new positive and shared focal point in their joint lives. Another woman quipped:
“There’s nothing above it [football]. In America, they say America first, but at our house it’s prostate football first.”
The women recounted in appreciative terms that their partner was very persistent when it came to attendance at football practice, as one woman said, “I don’t think he has ever missed football practice, not even once.”, a position affirmed by another participant:
“He wouldn’t dream of not going [to football]. Whatever else might be planned for that day, it just has to be cancelled, it can’t get in the way of him playing football!”
The women described how they were actively involved in planning for their partner’s football training. Many of them talked of how football occupied their lives and the rituals that were revisited in the pre-game and practice habits. One woman explained:
“His clothes and gear are organised in the evening. I tell you, they are lined up on the dining room table. And when it’s time to leave, he’s like a small boy who can’t wait.”
The women also described how they were careful to offer support when bad weather or other obstacles challenged to their partner’s motivation, which, the women suggested, was more the case at the start of the intervention (i.e., after a short period of participation).
“Once it was raining and he stood there looking out of the window … So I said, ‘pack your things and just go over there, if you're the only one you'll be sent home again!’ So he went and he found 10 other guys were there! Since then he’s gone there every single time.”
The women recognized the importance of the football in their partners’ lives. They do not complain, and for the most part selflessly compromised to sustain their partner’s involvement with the program. One woman explained:
“We need a car to go everywhere and if he’s [husband] off to football, I have to adjust accordingly.”
Most of the participants expressed a strong interest and desire to be a part of their partner’s football practice in the same way as they take part in the treatment. One woman described how she once watched her husband and his team during football practice without her husband knowing, which made the other women in the interview laugh and ask her questions about what she saw. As such, the women shared a curiosity about what goes on among the men, but at the same time described respecting and appreciating the fact that the football was exclusively for the men and a part of their partner’s therapy that she was not part of.
“It’s okay that it’s [football] something just for them – something that it theirs only.”
“Exactly, I think so to.”
“Maybe they wouldn’t feel as emancipated if we were there with them.”
“We would probably have drowned them with our talk. There’s no way of denying that we [women] talk a lot” [laughter].
- Invisible needs
The fourth and final theme, invisible needs, related to women’ feelings of insecurity, and the lack of recognition and appreciation for their support.
Within the interviews the moderator struggled to keep the women focused on their experiences in relation to their partner’s participation in the football program. Often, the women shared detailed accounts of the time around diagnosis and asked each other about treatment side effects in ways that were unrelated to the football program. One woman brought along a small black notebook in which she had written down questions/subjects she would like to discuss with the group:
“But I would like to talk a bit about how my husband has reacted, maybe you’ve experienced the same? … I’d like to talk a bit more about the psychological side of things because I’ve not had the chance to talk about it with others and hear if they’ve had the same experience"
The interviews were characterized by a willingness of the women to admit vulnerability and fragility within and without their intimate partner relationships, and a preparedness to share perspectives and comfort one another. Several participants got emotional during the interview and were supported by the others around the table. For example, responding to a participant’s disclosure about feeling isolated, one woman said:
“It sounds like you’ve had a terrible experience dealing with the people who are supposed to take care of you” and “I really feel like giving you a hug.”
The women recounted that they did their utmost to be supportive, stay calm and to be strong. It was important for them to give the impression of being resilient so that neither their partner nor their children worried. Two participants explained;
“I do think there are a lot of things you have to just swallow one way or another.”
“That you’re holding back?”
“Yes, I think so, I do that to …”
“… not to hurt him?”
“Yes.”
However, the women explained that their resilience and stamina meant that friends and family were unaware of the strain and burden the illness brought to bear. In their efforts to put on a brave face, some women explained feeling lonely and exhausted;
“It can be depressing as caregivers to be positive and cheerful all the time.”
The partner’s participation in the football program meant acknowledging and being open about the PCa, which was a challenge for some women who wished to be discreet and private about the disease, purposefully limiting how many people in their social circles knew about it:
“I think it’s been tough. Not because I’m like that [weak]. I actually think I usually have quite a lot of strength to handle things. But my husband feels like nothing should be swept under the carpet, so he called everyone we know and explained that he was sick and what the treatment was. I was at my limit and about to say something to him straight out because I heard him explain the same thing a 100 times in one night and I thought: I need a break now. And then people called and came round, and I thought I simply can’t take it anymore. But he needed it, so I thought I should keep my mouth shut. All I was thinking was I want to escape.”
The women did not complain about the attention that their partner received because of his participation in the football program; yet they described their invisibility in the ‘couple’s disease’:
“I remember everyone coming and asking, ‘How are you?’ to my husband. You never ask the spouse how they are. There are so few people who ask how you are doing and when they do ask, woooshh, all the tears come pouring out because no one really ever asks about it; it’s always the person who is ill who they ask about. I think that can be tough sometimes.”
However, when discussing the need for spouse support and if a program tailored for partners would be helpful (i.e., similar to the football program for the men), the women were reticent to be involved. For example, one woman said, ‘No, that’s not for me”; “I probably couldn’t fit it into my calender”, while another suggested, “I don’t think too much about that [need for support]”. Nevertheless, the women often affirmed each other in sharing their experiences, and at the end of the interviews the women said that it had been nice to chat, and in several cases, they took the initiative to continue the conversation after the interviews had finished:
“We can talk for a long time! Because of course this has taken up a lot and still takes up a lot somewhere in our lives, right?”
“It’s been good for us to talk a bit.”
While many partner needs were invisible there was also a commitment to maintaining that status quo for many women. Herein the tensions for selflessly supporting their men emerged, amid disclosures about the fatiguing hard work that flowed from their efforts to be strong for others.