PR routes of action

PR participants had very positive experiences regarding the service and discussed at length the benefits of the course. The experiences were conceptualised into three subthemes, ‘gaining skills and knowledge’, ‘regaining abilities’ and ‘reducing the effects of respiratory impairment’.

Gaining skills and knowledge

Participants attending both VIPAR sites discussed a range of new knowledge they had obtained from attending the course. Primarily, this related not only to information regarding medication, emphasised by Amelia, but also to more general respiratory-related knowledge, highlighted by Charles.

I couldn’t feel (the medication working) and the nurse that was (at PR), she said to me, Amelia, you’re doing it wrong…you’ve got to shake it a few times before! (Amelia, spoke site)

I think we learnt from some of the talks. I think we all learnt, quite a lot of information and, for me, I think I gained in confidence on what I could do physically through the exercise. (Charles, hub site)

These quotes demonstrate one way that participants believed PR had positively affected them and there was a consensus throughout the focus groups about how the information would be of longer-term benefit. Everyone who attended the PR sites had received their diagnoses more than 3 years before being invited to the programme. Therefore, it is possible that participants perceived the provision of this knowledge as having an increased value, due to the length of time they had to self-manage their condition without the necessary skills to do so.

Regaining abilities

Respiratory symptoms can limit the amount of daily or leisure activities with which an individual with chronic lung impairment can engage, especially if these behaviours require physical exertion. Perhaps as a result, throughout all the transcripts, the most positive discourse regarding PR related to the programme’s ability to provide participants with the opportunity to re-engage with these activities, as highlighted in the following two quotes.

Oh, I breathe better, I’ve got better confidence, and I do things now that I haven’t done for four or five years. I used to ride, I used to have a horse and go riding, last Sunday that’s the first I’ve been on a horse for four years and I did four and a half miles. (Albert, hub site)

All my joints and my chest are not so bad. I used to walk a lot but the last couple of years I’ve slowed down but, first Sunday, I went for a three-mile walk, you know, and no trouble. That’s the difference it’s made to me. (Galileo, spoke site)

Structured exercise is a principal component of PR.14 Interestingly, however, rather than participants conducting exercise solely at the programme, they instead supplemented this with other enjoyable, physically exertive activities. Therefore, rather than people with respiratory impairment entirely lacking the ability to be physically active, it is possible that the only barrier is a lack of motivation and once this is overcome, these behaviours are engaged with in earnest. This is emphasised by both Albert and Galileo referencing the considerable number of miles they achieved conducting an activity they enjoyed; thus, demonstrating how PR can make leisure activities reobtainable and have a significant effect on physical abilities.

Reducing the effects of respiratory impairment

The final way participants discussed the positives of PR was its ability to reduce the perceived effects of respiratory impairment. Although similar to ‘regaining abilities’, this subtheme was differentiated by how the programme directly impacted the symptoms of the disease, rather than the former theme that described the reversing of what these symptoms had caused.

It’s been a marvellous course, unbelievable really, and it’s not only here *points to chest*, we’ve been talking about it, you know. Even our joints and we feel better altogether. And the coughing, I used to cough quite a bit, but I haven’t used an inhaler now for the last three or four days. Yeah, it has made a hell of a difference. (Franklin, spoke site)

Here, Franklin highlights how participants felt that their symptoms had decreased because of attending PR; however, he additionally begins to describe how the group interacts with one another. Earlier in the transcripts, participants discussed how before they attended the programme, they felt like they were the only ones with their condition, creating feelings of isolation that have also been described by other authors.4 However, the following extract demonstrates how PR reduced these feelings.

Marie: I think we all supported each other, ‘cos we’ve all got the same condition

Several voices: yeah

Marie: we’ve all got breathing problems

Albert: the main thing really is that we’re all suffering the same thing. (Hub site)

Although most participants had a primary diagnosis of COPD, not everyone attending the groups had the same respiratory condition and many had different comorbidities. This extract, however, appears to suggest that this dissimilarity in the actual diagnosed condition does not reduce the connectedness between participants and rather it is the breathing problem which they share that unites them.

This subtheme demonstrates how people attending the hub and spoke sites experienced PR to affect both the physical and mental aspects of their chronic respiratory condition.

Convenience versus relatedness

Within this overarching theme, participants discussed the competing elements of increasing the accessibility of PR and the challenges that accompanied this. Two subthemes were developed within this overarching theme. ‘The impact of travelling’ describes the negatives associated with having to travel within a rural environment to attend PR. ‘Cross-site communication’ relates to the problems that were created by the inclusion of technology alongside how these began to be overcome.

The impact of travelling

Both hub-site and spoke-site participants struggled with travelling through rural Wales to attend the PR course. VIPAR saved approximately 410 miles and 11.5 hours journey time per spoke-site participant over the duration of the 7-week programme, as they had access to a closer location compared with the hub site.21 The quote below best highlights the discourse surrounding this topic and the issues associated with travelling through a rural environment.

…we’ve got country roads around here, you’ve got milk tankers, tractor, and cars blocking you. Whereas your journey one day could take 20 minutes, the following day it could take you 40. Travelling there like, it doesn’t give you the oomph you know, the thought of the travelling. (Albert, hub site)

A previous systematic review has found that travel and transport are negative predictors of PR adherence22 and therefore the ability to reduce the participants’ experiences of travelling is a significant benefit of VIPAR. Importantly, spoke-site participants unanimously stated that they would not have attended the hub site due to the distance involved and those attending the hub site would have preferred a closer location to their homes had one been available.

Cross-site communication

The use of VC equipment to facilitate PR groups was accompanied by communication difficulties, however, within this subtheme, divergence between hub-site and spoke-site participant discourses was observed. Hub-site participants discussed how the poor communication limited the connectedness they felt with the group members at the other site, whereas those at the spoke site described difficulties understanding course content and the educational speakers who were at the centralised location.

Amelia: you can’t hear them, and you can’t hear the answers

Malala: it’s all mumbled isn’t it and you can’t make out what they are trying to say

Galileo: yeah, that the only snag

Franklin: yeah, it’s the sound system from (the other location) to here. They can hear us

Malala: but one of them was talking better than the other. (Spoke site)

As this extract highlights, this was a significant problem for participants, however, it also describes how these difficulties were reduced as more sessions were delivered and, by the second cohort, some of those attending the spoke site did not feel this was an issue.

Some of it was very good, I enjoyed some of the talks but one or two of the others were a little bit vague. I think that could be improved a bit. The hearing of them was fine most of the time. (Louis, spoke site)

The improvement in communication was largely because of the staff delivering the sessions learning how to best configure the room and microphones and present self-management advice through the equipment. Although participants at the hub site discussed that the poor cross-site communication limited the connectedness they felt with the spoke site, this was not seen as a significant negative of the programme.

you’re too busy really getting on with what you’ve got to do, to be worried about what’s going on (at the spoke site). (Mahatma, hub site)

Because of the improvements in communication, although some of the early participants were hesitant regarding the idea of adding additional sites (ie, one hub site connecting to two or more spokes), the second cohort did not think this would detrimentally affect the programme.

The need for increased preparation

Although the staff were positive about the use of technology to deliver PR, they identified several factors that would help facilitate further programmes. The sub-themes ‘increased training needs’ and ‘the importance of good administration’ were largely positioned as essential to the success of the programme in HDUHB, or indeed other locations, should they adopt similar technologies.

Increased training needs

Like the participants attending VIPAR, staff also found that the earlier sessions were difficult and experienced several problems, particularly related to communication.

It took me a few sessions to realise that there was a delay over the system…I realised when the sound was going off and I did some of the talks and it was going off. (Elizabeth)

Although the staff did find ways to reduce the difficulties they were experiencing and increase the quality of communication across the VC equipment, it was felt that greater training could have potentially prevented this altogether. Staff additionally believed that the training was needed for the speakers who provided self-management talks and were unused to the new system; however, it was accepted that the majority of the speakers present for altruistic reasons and therefore this may not be possible due to time constraints. Staff also discussed what staffing was required in the future.

Each spoke site would need a band 4 (physiotherapy technician) that was very experienced…who was highly trained in life support, pulmonary rehab…plus one other (staff member). (Maya)

This quote was made in response to how staff were anxious that spoke sites might not be given experienced personnel and this could increase the risk if something happened during the programme. Risk is discussed in a later theme, however, the increased training identified here was seen as a potential solution to manage this.

The importance of good administration

One element that the staff quickly adapted to was the increased pressure the added participants put on staff time and organisational skills.

You’ve got 10 people who have no idea what a bicep curl is, how to get on a bike and turn it on is half the battle. Their chest is the least of our problems, they’re going to cough—it’s fine—they are going to get breathless—that’s normal—but it’s trying to negotiate them around the room is half the battle but then, once they all settle down after a few weeks, it actually…evens out, but you’ve got to be prepared. (Maya)

This quote highlights how the initial sessions of PR are usually intense and the increased number of people attending the spoke site exacerbated this. Staff described that organisation was fundamental and believed a dedicated person for administration was necessary to help facilitate the smooth running, both inside and outside of the programme.

VIPAR-specific challenges

Within this overarching theme staff described how they navigated the difficulties associated with the installation of technology to the PR service. ‘The interaction between risk and technology’ involves a discussion of the potential for added risk because of VIPAR. ‘The impact of technology on service user engagement’ represents how the PR staff believed it was more of a challenge to interact with participants attending the spoke site and the consequences of this.

The interaction between risk and technology

Within this subtheme, staff discussed how the use of technology affected the risk of PR, where it was also believed that if too many spoke sites were added this could be a negative.

No matter how experienced the clinician is, trying to watch 3 different groups is a huge ask, but I think you do need another person in the (hub) room so that the clinician is just overseeing the 3 different groups because, if the patients are stressed or anxious, you are going to have problems. (Rachel)

Rachel highlights the worries relating to the addition of too many participants attending spoke sites, in addition to how VIPAR still required adequate staffing. Although one of the strengths of VIPAR is that it increases the participant-to-staff ratio, the focus group believed risks accompanied this for spoke-site participants, if the ratio increased too much. Alongside this discourse, staff also discussed the confusion surrounding who was ultimately responsible for the spoke-group’s safety and believed greater clarity was required to decrease any potential problems. Despite these concerns, however, a separate study found no adverse events occurred for spoke-site participants with equivalent outcomes between the two sites.21 As discussed earlier, increased training was provided as a potential solution to manage VIPAR-related risks.

The impact of technology on service user engagement

Lastly, staff discussed how they believed it was more difficult to engage with participants through the VC equipment.

Rachel: maybe they engaged more because the person delivering it was in the room with them?

Theodore: yes, that’s my opinion. For them to ask questions, especially just in front of a group of people they’ve only just met, but then across the screen that is, you know, slightly pixelated to someone that can’t really see, it’s quite detached.

The quote from Theodore highlights how participants were more likely to ask questions to the staff who were at the spoke site, rather than via VC. Later, Rachel also explains how she found it initially difficult to create the same connections with spoke-site participants as those she saw regularly in person. Although PR adherence was similar between sites,21 staff felt that this lack of connection could detrimentally affect the likelihood that participants would attend all sessions. To partly overcome this issue, hub-site staff increased their efforts to engage with spoke-site participants by specifically asking questions of those participants and providing further opportunities to engage. However, this did not completely alleviate staff views regarding engagement difficulties.