The themes that emerged can be broadly categorized into two overarching categories of a process evaluation of the trial and outcomes from taking part in the intervention. Descriptive quotes from focus groups (FG1, FG2, FG3) are also presented to illustrate the emergent themes. Each is now considered.
Process themes
Motivations for taking part in the study
Participants were thankful for the invitation to take part in the research as it was a potential way to get back into regular exercise. The feeling of giving something back to the staff that helped treat participants with their condition and the feeling of contributing to improved treatment for ‘future patients’ appeared to suggest an altruistic reason for participation:
‘… I jumped at it. I’ve always tried to keep myself reasonably fit but I’ve just lapsed that little bit over the past few months for various reasons and it was a way to get on to the exercise part of it…’ (FG3)
‘ Every tiny bit of knowledge is beneficial to future patients.’ (FG2)
Views about the supervised group design of the program
The university rehabilitation suite as a venue to exercise was a popular choice as it appeared to motivate the men to work hard and ‘get stuck in’. The participants unanimously wanted to exercise with each other and did not want to involve or include their wives particularly. This could suggest that the exercise facility was seen as a particularly ‘male’ environment. Given that these men were all hypogonadal, the presence of their wives could compromise a shared sense of masculinity:
‘When I used to come through those doors I used to think, now then we are going to get stuck in today! I want to try and do better than I did last time. ‘(FG1)
‘Would prefer just us.’ (FG1)
‘No, I think being away from them [men’s wives] is good, you need a rest from them every now and again. I don’t mind banter and nagging. But I think you would get through more without them.’ (FG2)
Perceived benefits of the social interaction within the group-based program
Participants found that being in the company of others living with a similar condition and exercising together was useful. Some participants found discussion about their condition with others a new and helpful experience, and were disappointed when the program ended. Participants in focus group three mentioned that they would have preferred an intervention of longer duration. The following extracts exemplify the (entirely un-coerced) peer support that was built over the course of the intervention:
‘If you are on your own you don’t know where you are going, but when you talk to other people, you have been through what they have, and it gets easier.’ (FG2)
‘I think the big disappointment is that the course ended…I would have liked it to go a little longer. We were able to discuss amongst ourselves how maybe we were coping with the bit of a health problem that we have… because being chauvinistic males we tend to keep it to ourselves and not wish to maybe discuss what the effects Zoladex can have and what condition we find ourselves in. But when I’m amongst people like this I feel safe and confident.’ (FG3)
Views on home-based section of the exercise program
Participants did not seem as keen to continue exercises at home as they felt they would get easily distracted by competing domestic priorities: others felt something was amiss when in the second six weeks of the program they were asked to exercise at home and visit the center only once a week:
‘At home you would probably do it once but nobody forces you the second time, but if you were coming down here [to the University] you would definitely do it. I still do it but some weeks, yes I have missed training out at home, but not very much. You get home and you say I have got to do this, but nobody forces you a second time, then it comes to the rest of the week and you think it just slips by.’ (FG2)
‘Felt as though something was missing in that second 6 weeks when we came just once a week.’ (FG1)
‘Doing it in a group [exercising], because at home, you can always do it tomorrow can’t you?’ (FG1)
Perceived benefits from the diet aspect of the program
The majority of participants found aspects of the diet education helpful. However, men also acknowledged that they were not able to stick to the diet advice consistently. Other statements were much more explicit in advocating its benefits:
‘Sometimes I used to buy a lot more pre-prepared meals from the supermarket. Not now. Not so much.’(FG1)
‘I think dietary advice was really good - a lot of it. I am not saying I stuck rigidly to it because I like a drink, but generally speaking I found that quite effective… I think that actually made me lose weight.’ (FG2)
Factors that could affect future program participation
Participation in the future would depend on whether the program continued to be perceived as beneficial. It was further highlighted that a group lifestyle intervention would be a preferable peer support structure to a conventional cancer survival discussion group format, which these men did not consider to have comparable benefits:
‘I would do it [participate in an exercise program] as a group [again], but there again you wouldn’t keep coming in if you were going to get nothing out of it. When we were doing the exercises we thought we were getting something out of it. Just having these talks [referring to group discussions], is not doing a lot of good to us. We still want a bit back.’ (FG1)
Men reported they would continue with the lifestyle changes if they perceived positive benefits in their health and that they would receive reassurances from an exercise specialist that there was continued improvement. This may have been important to the men because in their experience, meetings with the consultant had always been brief with little chance for discussion and feedback. Men appeared in favor of discussing these issues with support sisters as they did not feel so rushed at these appointments.
‘If I joined a gym and had a regime that we could cope with and that made us feel better, would it be possible to come back to see you or some other physiologist that could say yes you are still at a fitness level, it is benefitting you. You know what I mean.’ (FG2)
‘Well I tell you what those support sisters - I don’t see the consultant I just see them. I spend at least 1/2 an hour and they are never trying to rush me out of the place. They don’t just want to get rid of you: but the consultant, I have 30 seconds with him!’ (FG2)
Impact on exercise behavior after the intervention
Several participants joined a gym after the intervention but some men were wary about continuing after the program. Participants suggested that gyms outside of the center were not aware of the study, the program and the patient group and, as such, they were reluctant to use them. This suggests a lack of confidence in the existing community exercise facilities to understand and cater for the specific needs of men with prostate cancer on AST. In addition to this the potential cost of membership was also mentioned as a potential barrier:
‘I think I pay £28 per month which is a lot of money out of the pension.’(FG1)
‘Yes, yes, it is too expensive to go the gym [consensus of the group, yes] it would cost a fortune a week.’ (FG1)
‘I would think it [if local gyms were aware about the study and the program and that patients would be referred to another gym by researcher that] would be [beneficial]. Providing it was affordable to us.’ (FG2)
Outcome themes
Disease recurrence
An unexpected finding was that men in all three groups mentioned that the intervention helped reduce fear of disease progression, adverse feelings associated with AST injections and fears about mortality. Fear of recurrence (that is, fear that cancer might return, progress or disseminate)[
16,
17] is a specific emotional difficulty facing some cancer survivors. It can be long standing and also negatively impact quality of life[
18]. Indeed, fear of recurrence is prevalent in survivors of localized prostate cancer, and significantly predicts worse mental health related quality of life[
19]. However, comparatively less is known about how it affects men on AST or strategies to ameliorate such problems:
‘It keeps your mind going and you are not thinking stupid things in the sense of I’m going to die and you can get on with your life and enjoy it..’ (FG3).
‘You don’t worry so much about prostate cancer… since I stopped exercising I found aches and pains which become more significant, whereas if I was exercising I probably wouldn’t have them.’ (FG2)
‘You want to get switched on a keep fit program - so you forget all about your injections and stuff like that, well I did anyway. It made me more happy.’ (FG1)
Communication with healthcare professionals
According to the participants, they were not told anything about lifestyle changes from nurses or consultants previously and were unsure as to whether such information should have been directly solicited. Participants, in general, felt that in addition to not having enough time during appointments with the consultant, times between follow-up appointments were also much longer than they would have preferred. Unanimously, participants were very much concerned about their prostate specific antigen (PSA) levels:
‘No [there was no mention of lifestyle changes]…I suppose one could have asked…once a year I see the consultant, yes I could ask him, but your mind seems to be on other things, i.e. what is your PSA level today rather than asking. (FG3)
‘I think the answer rests in whose hands you are with, in the hands of those nursing sisters they were a mine of information and support and then when there was some other complication arose and I saw the consultant. Afterwards, I am looking forward to going back to see them [the support sisters] again. But it is the nature of life isn’t it. All consultants are different.’ (FG2)
‘It depends if you are in control (controlled PSA), then six months isn't a long time. This gentleman is doubling every time now (i.e. PSA is doubling), that 6 months it is a hell of a long time. Now in that 6 months if it goes something daft can you bring me back again. It might be no, and you think, god if I had come after 1 month they might have done something for me. Everybody is different.’ (FG2)
‘I would like someone to tell me how it’s going - if it’s alright, if its growing, if it’s getting better…’ (FG1)
Benefits and drawbacks from taking part in the intervention
Participants in all focus groups perceived an improvement in their physical and psychological well-being, which is an anticipated finding given the positive quantitative results in our previous trial reports[
11]. Participants were satisfied with the intensity and progression of exercises and readily engaged in goal setting. The following extracts demonstrate how psychological wellbeing and physical improvements went hand in hand:
‘I was satisfied actually but particularly with the rowing because I finished up - not with winning any record, but I felt good with doing 1,000 meters in 5 minutes.’ (FG2)
‘With exercise now I always go a bit further, I do push it a bit more. If you do the exercises there is a reward, I have managed to increase my arm strength I must admit but I do push myself a bit further than I used to.’ (FG2)
‘I feel wonderfully well…the 12 weeks in effect did me a power of good. In spite of thinking that for my age of 77 I was reasonably fit at the end of 12 weeks I know I was fit, fitter than previously.’ (FG 3)
However, there were men who believed that although exercise had benefited them in several respects, exercising would not help ease their urological side-effects. Such problems were much more of a concern to the individual in the extract below. It was their consideration that these problems are not something that a lifestyle intervention would help with:
‘I find it very difficult to say whether I feel my side effects are less. I must admit there are some side effects which I jolly well do not want to have and which I am absolutely certain exercise can do nothing about and I shall have to go back to the consultant and say, look please can we talk about this and can we make alterations. It is the [urological] side effects that are more significant things in my life it is not the fact that I have prostate cancer.’ (FG2)