‘I am moving better’

A strong thread throughout all of the narratives was that the individual participants thought they had physically improved as a result of their training. Participants described that they walked faster, further, were moving more easily, and their balance had improved. Not all had made as much improvement as they hoped or desired, but nevertheless changes were evident as illustrated in the following quotes:

Well it just loosened me up. I could do things more easily then what I could before (line 308–309). It was coming everyday, I mean I’m noticing now that I am moving better (Frank: 335)

I did feel a lot fitter eventually … my leg muscles, my core muscles and everything. I was beginning to feel stronger in myself and my stamina then got a little bit better.(James:1176–178)

In both of these passages is the reference to time. Change took some time to appreciate, indicating both the accumulative effect of training but also the patience to see those changes occurring. That required participants to ‘bear with’ the programme which was sometimes a challenge as participant Charles described.

Personally for the first say three or four weeks, I’d think well this is getting me nowhere, but then you think that you notice things, things are improving and at the end of ten weeks you want to go for twenty weeks (Charles:119–125)

This is an important insight as it indicates a need for participants to have a prior commitment to be patient while these small changes accumulate and perhaps a marker by which these small accumulating changes can be more readily appreciated.

Critically it was not just fitness, strength and balance that participants commented on, but also meaningful activities in everyday life. Perhaps expectedly given the focus on activities such as rolling and techniques to independently get off the floor, these were activities that were deemed to improve.

I had a fall a few times I’ve been at home and just not been able to get up. So once she showed you how to do it, then it takes a while but you can get up then (Betty:434–435)

But the perceived benefits went beyond specific tasks practised and targeted within the training sessions themselves. Participants described improvements in getting dressed independently, decreasing their reliance on walking aids and achieving tasks in a more timely fashion such as answering the phone.

‘I can do it’

While physical benefits were noted by all, a stronger emphasis was placed by many on the psychological impact of the training. Participants talked about building their spirit, gaining confidence, opening their eyes, positive attitudes of mind, enthusiasm to try and becoming more outgoing. As Sally explains:

Oh I definitely was a bit more, well yes I was; I’d got a bit more brave if you’d like to say it … I’m not going to fall down and I’m not going to do anything silly you know. It sort of gave me that bit of confidence like that. (line 494–497)

This shift in belief sat in stark contrast to the spiral of decreasing confidence that some described prior to starting the programme. The best example of this was Sandra, who in the following extended quote describes her transition from self-doubt and social withdrawal to belief and action following the training.

It really helped me mentally, you know I thought right I can do this because before I was going into my shell, thinking I can’t do this and I can’t do that. Oh I am not going out. Then I went on that [ReTrain]) and it gave me an element of confidence … he [son] rung me up and said he was taking his daughter to [the zoo]. He said ‘come on you can do it’ and I said ‘I can’t, I just can’t do it. He said ‘come on we’ll just walk as far as you feel comfortable and then come away’. And I thought ‘I am going to do it’ I am determined you know I think going on that course made me determined, it’s really given me a lot of sort of inner strength, you know that I didn’t have before, I thought right I can do it. It was difficult, but I thought ‘I am not going to give up’, you know, whereas before I went on the course had he said come to the zoo I wouldn’t have even gone out of the door. (43:562–565, 694–718)

Interesting in this passage is the almost complete lack of reference to the actual walking. Rather Sandra focuses on the determination to challenge herself and face her fears. While it is not clear in this passage how the training impacted on her confidence, the connection between the change in attitude and the ReTrain is clear.

The following two themes explored the perceived mechanisms through which these changes were deemed to occur, but also the wider consequence of such training approaches.

‘A mile and a bit’

As inferred in the first theme, perceived changes came gradually and that sense of incremental build up and gradual challenge was identified as a key factor in the successful delivery of the training. In the following quote, Charles is describing the trainer’s strategy for always asking for a little ‘bit’ more:

His[the trainers] idea was to go the mile and a bit … if you take it to the limit each day that’ll be the same 50 press-ups. He takes you just over, then that just over the next day and you would go over again so you were getting further and further. And you know before you know it you are ‘yeah I couldn’t do that before’. You know it clicks and everything falls into place (Charles:781–789).

Donald used the metaphor of music to expand on his understanding of this. At the start of the interview he had described his resistance to the training as he did not like doing exercises which he related to playing scales. But having completed the training, the benefit of playing scales, of gradually increasing your skill level until it enables you to deliver something more satisfying and more accomplished, was more evident.

But it’s a bit like playing scales … it’s not creative but as I gradually realise it, it could potentially be creative … doing something that I had been doing without thinking before and now couldn’t … now and again I walk without my stick without realising it. That’s creative I think. (Donald:354–392)

The approach of incremental challenge is a key principle of physical training and therefore its inclusion in the programme and identification by participants is perhaps unsurprising. Despite this, the expectation to push yourself physically caught some participants somewhat off guard and was not necessarily completely welcomed. For example, Catherine noted that ‘I didn’t think I was signing up for boot camp’ (Catherine:295).

For others, the resultant fatigue post-training was noteworthy, but not necessarily viewed negatively as the following extended quote explores.

But I did find it, that there were times when I came away from there and I was tired and I mean I was literally tired. I’d get out of the car here and walk into the house and sort of the first thing I really wanted was to have something to eat and to go to bed really and have a sleep you know.

Researcher: How did you feel about that? Was that a good or not a good thing for you?

Participant: Well I felt that it was: it must be doing me some good. I mean I was using muscles which I’d not used probably for years. (James:182–190)

Participants described different ways of managing the impact of the training. Sally requested that the training was taken at a slightly steadier pace, and Betty, like James, reduced other external demands by going to bed immediately after the training. Betty recounted having a ‘funny turn’ one evening after training which she associated with being shattered following a hard session (and this was recorded as an adverse event/reaction by the research team). This incident, however, did not interfere with her commitment to the course, but she did adjust the demands of the day to accommodate the additional fatigue on training days.

For many participants, the developmental nature of the programme or adjustments to their personal life allowed them to cope with the demands of pushing themselves that bit further. However, the most compelling motivation to go that extra bit (beyond the mile previously described) was the effect of being in the group itself.

‘The team done really well’

On the whole, the group nature of the intervention was seen as one of its most positive aspects and often discussed as integral to its perceived effectiveness. There were several examples in the interviews of how the group interactions led to an increase in personal drive. Peter, for example, discussed another member of his group and how his success influenced him.

Now this chappie could lay on the deck, on the ground and actually get himself up which he could never do before. Now when you see the look on that chappie’s face. God! You know there is something going on. And to me that was the biggest motivation for me. (Peter:255–265)

The impact of this is drawn on several times in the interview with the conclusion that his group acted as a team, ‘bouncing off one another’ (Peter:318). The concept of the teamwork and shared determination despite different abilities and histories within the groups was discussed by several participants. This is clearly summarised by Arnold.

For me and I think for everyone else, we started seeing each other improve and we were encouraged by that it was good you know it wasn’t all hard play. It was fun as well and I must admit the team done really well. Because different age groups, different ailments, male and female they were dealing with and I think they really understood their role and they done well. (Arnold:101–108)

The impact of stroke can vary hugely, but participants in this study highlighted the importance of their shared history in this team development. Betty, for example, discussed how other members of the group ‘were the same as you’ (line 589), while Sally described a similar shared experience of all being ‘through the mill at some time or other’ (line 343), a connection which created a bond between otherwise very different people. Sandra reflected a similar idea:

Oh it was lovely as we were all sort of, we were all in the same boat because it wasn’t a competition but we knew that from the start. We were doing what we could. (line 1215–1217)

In combination, these narratives suggested that witnessing others success, a shared will to succeed and a team spirit with implied roles work together to inspire an increased individual effort. However, there were exceptions to this and examples where ‘performing’ in public with a group of people you shared little with were considered detrimental to the training programme. Likewise, narratives that suggested that rather than increasing the intensity through encouraging that extra level of activity, the groups reduced the intensity of the training to the detriment of the individual. This was met with some frustration as described by Charles.

In those two hours with three of us. Three was enough because each one had to do each thing. If there was sort of six you would only get so many minutes each you know so you were sitting around twiddling your thumbs. What shall I do now? (Charles:147–150)

It would appear from this data that on the whole, the group approach added a number of opportunities to enhance training, but this was not true for all participants. It is also apparent that while the trainers managed a level of personalisation in their approach, a balance had to be reached and the ratio of trainer to participant was of importance in achieving that.

‘Speaking our language’

As previously mentioned, part of the concept of pushing the participants beyond their natural comfort level was created by the relationship between themselves and the trainers. Participants discussed how the personality of the trainer got them through the hardest parts of the course, encouraging and challenging them to take that additional step.

He had a personality that he could cajole you and get you to go (James:871)

Importantly that encouragement was seen as incremental, like the exercises themselves and on the whole the trainers struck a good balance as described below.

And they didn’t bully them into it … they were very softly softly and give people time. (Sandra:1059–1060)

[Trainer]) was a great encourager and that was his great benefit and he just encouraged us to do more and more. He saw that you were willing to be pushed and he pushed and so the two together worked. (Donald:315–316)

Critical to this description by Donald is the alignment between the participants’ willingness and the trainers’ recognition and action as a result of that. When that partnership was not effective, this ability to cajole was not seen so positively. Within the intervention group, this was mentioned infrequently but the sense that the trainer ‘wanted us to do quite a lot’ (Catherine:310) and that amount was considered beyond their personal capability is important to capture. For Catherine, this was a particular struggle throughout the training both in terms of the trainer and the style of exercises and it was explicit throughout her narrative that the trainers’ approach made engagement with the training particularly challenging. For James, while some disagreement with level of activity was noted, this was resolved within the training session itself to the satisfaction of the participant.

The discussions between participant and trainer though were not all about content but also about the manner of delivery. For many participants, the humour and human nature of the interactions were important to emphasise.

It was you felt as if you were a human being with them. You know and you were treated with respect … and although you couldn’t do things and you felt a bit of an idiot, they never let you feel like that. (Sally:567–572).

This sense of humanisation through the interaction was also referred to by Betty and strikes an important thread through their narrative.

While the context was slightly different, Peter suggested that part of that positive discourse was created by a shared language ‘speaking our language’ (line 448). This had two aspects, on one side a language of shared understanding rather than hierarchical rules.

It was the way they addressed how you do your exercises. What it is doing to you and all the rest of it. Now to me that was absolutely important, because it made sense of why you are doing all this pumping up and down, and if you can’t do that, do this. (Peter:252–255)

And on the other side, less a focus on the words and explanations but more a sense of progress and possibility which results in hope for the future. That was a language that appealed to the participants and created a positive connection between trainer and trainee.

This approach indicated the ability of the trainers on the whole to personalise the intervention in content and manner to the individuals. Indeed, their capacity to juggle group needs alongside individual problems and attention was noted by several participants.

Carrying on

The concept of continuing with more activity after completing the intervention and the concomitant hope of future progress was another theme apparent within some of the interviews. Participants talked about how the training opened their eyes and as a result they were re-evaluating what they should be doing and what possibilities lay ahead.

It’s given me insight into knowing perhaps I should continue doing a bit more. (James:389).

For a number of participants, this hope in future development was matched with a change in their reported behaviour: a continuation of exercises at home, joining new physical activity classes or a gym all reported on the completion of the training.

I go to the gym now since I have finished the course. (Betty:63)

I’m trying to get more exercises done, I’m trying to get more exercises into the time at home. (Donald:816–817)

For some, this continuation, while an ideal they wanted to pursue, was limited by practical barriers. Sandra, for example, lives in a rural area and little activity options were available. However, she bought an exercise bike as a compromise, something to keep the increased activity possible. For Charles, however, a significant challenge he faced was the loss of the trainer themselves. While options were available, he acknowledged that continuation was easier when a trainer was there and consequently his ideal, alongside others, was for a continuation of the classes.

This minor theme indicated that the impact of the training for some participants went beyond the length of the training course itself. Possibilities and actions in order to enhance the development of that future progress were discussed and ascribed as a clear impact of their participation in the training. However, the loss of the classes themselves and specifically access to the trainer were a concern, which could potentially impact on the actualisation of that continued commitment.