Introduction
It is important, within the delivery of a behaviour change intervention trial, to understand the experiences of those involved in the delivery and receipt of the intervention. In order to address these important issues, two qualitative studies were embedded within the trial protocol. In these studies, we sought to gain insights into two important issues: (1) the views and experiences of the nurses delivering the intervention and (2) the experiences of trial participants. Summaries of the nurses’ perspectives on the trial185 and the participants’ evaluation of the trial in helping them to increase their levels of PA162 have been published and are reproduced here under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0). In this chapter, we focus upon the perceptions of the nurses and participants of the trial; some of the quotations have been published previously in the publications detailed above.
It is of fundamental importance to understand the perspectives of both those involved in the delivery of the intervention and those who received the intervention. In Chapter 6, we provided a comprehensive process evaluation of the trial which described, in detail, the training and support given to the trial nurses. In Chapter 6, we also addressed issues related to the fidelity of the trial delivery by the nurses. In this chapter, we focus on the nurses’ perspective on their experience of participating in the trial, with a view to understanding how we can better plan and deliver primary care-based trials and then implement them more widely. There is an extensive literature that examines adherence to behaviour change interventions in adults and which establishes the barriers to, and facilitators of, for example, increasing PA. For example, Picorelli et al.,186 focusing on older adults, reported that adherence to exercise interventions was associated with key demographic factors (higher socioeconomic status and not living alone), health status (fewer health conditions, taking fewer medications and better self-rated health) and psychological factors (fewer depressive symptoms).186 For trial participants, a novel part of our qualitative study addressed a related, but much less well researched, issue of trying to understand why the intervention did, or did not, work as a means of evaluating the individual elements of the intervention in facilitating behaviour change.
Recruiting trial participants for the qualitative study
At initial recruitment into the trial, participants were asked for consent to participate in follow-up telephone interviews, such as those included in this aspect of the study. The trial statistician prepared a spreadsheet of all participants who had completed the 12-month follow-up in January 2014 and who had given consent to be approached to participate in the telephone interviews (this list was updated in March 2014). We purposely recruited participants who had, and had not, increased their PA levels from both nurse-supported and pedometer-only intervention groups. We defined an increase as ≥ 200 steps per day; anyone who either did not achieve this or decreased their PA was defined as a non-improver. This gave us four interview groups: (1) nurse support/increase, (2) nurse support/no increase, (3) postal delivery/increase and (4) postal delivery/no increase. We also ensured that we sampled participants with a range of ages, from both sexes and from all six of the initial participating practices. As noted in Chapter 2, a novel feature of our trial was the option for participants to take part as a couple and we wanted to ensure their inclusion in our qualitative study. We purposely targeted potential participants from demographic groups under-represented in our main sample (e.g. ethnic minority community participants) to ensure that we explored the widest range of views possible.
Between February and April 2014, we identified 96 trial participants who had been selected on the basis of the criteria described above. We made contact with 44 of these participants, of whom only one declined to be interviewed. We were unable to make contact after three attempts with the remaining 52 participants, who had been initially identified as potential participants. The 43 participants we recruited broadly approximated to the demographic parameters specified, with 20 participants in the 45- to 59-year-old age group, 29 participants being female, 21 participants in the nurse-supported intervention group and 23 participants who did not increase their step counts. We interviewed seven participants who took part as a couple, but we did not interview both partners. In terms of ethnicity, 29 were white British and a further five were from other white ethnicity groups, with nine participants from black and Asian ethnic minority groups. Appendix 6, Table 43 shows the demographic and step count details of individual participants.
We used a semistructured interview guide tailored for each group to reflect the nature of the interventions and the classification of participants as improvers/non-improvers.162 The 43 interviews completed ranged in duration from 9 to 44 minutes, with an average (mean) duration of 21 minutes. Interviews were recorded and transcribed verbatim. Full details of the analysis strategy for our qualitative interviews is provided elsewhere,162 but are briefly summarised here. All transcripts were read by four authors (RN, JS, CV and TH), codes were assigned independently and discrepancies were resolved by discussion. Codes were grouped into themes, which were further refined by discussion to produce broader themes, encompassing several subthemes. Theoretically informed BCTs were an important element of the trial and we were interested in understanding which of these had been of most use to participants. We performed an additional analysis of the data to specifically draw out themes relevant to these techniques. We have reported the reasons for trial non-participation and the barriers to, and facilitators of, increasing PA elsewhere.148,162 We have noted elsewhere that, although we defined our groups by the quantitative increase in walking, responses from participants did not demonstrate this distinction. In this, and in our previous qualitative evaluation from the PACE-LIFT study,149 almost all participants interviewed felt that they had benefited from the trials, even if this had not been manifested by an increase in their step count. In this chapter, we focus on what participants told us about their motivation for participating in the trial, their experiences of the various components of the trial and the longer-term impact of trial participation.
The role of nurses in the PACE-UP intervention
As described in detail in Chapter 6, the trial intervention was delivered by eight nurses across seven practices. They delivered three PA consultations to participants in their arm of the trial. These took place in weeks 1, 5 and 9 of the 12-week pedometer-based walking programme. Participants developed an individualised PA plan with the practice nurses, based around their current level of activity, with the goal of increasing both step count and time spent in MVPA. The nurses provided each participant with an individual PA diary, including step count targets for the 12 weeks, based on their own baseline PA measures, but this could be tailored further in the nurse PA consultations through joint discussions between nurse and participant. Five PACE-UP trial nurses participated in a focus group that was led by two of the research team (CB and CV); additionally, two nurses were interviewed individually by Rebecca Normansell (who also attended the focus group) and one further nurse was not available to participate in this phase of the research. A further focus group was also carried out with nurses involved in the previous PACE-LIFT trial of a pedometer-based walking intervention with older people.21 The focus groups lasted for, on average, 106 minutes and the individual interviews lasted for 50 minutes. The published evaluation of nurse experiences of the interventions includes data from both trials.185 In this chapter, we have limited the results presented to those from the PACE-UP trial nurses. A semistructured interview guide was used to elicit the nurses’ views on their participation in the trial (see Appendix 6). The interviews/focus groups were audio-recorded and transcribed verbatim. Full details of the methods used are available elsewhere,185 but are briefly summarised here. Coding the transcript themes was guided by thematic analysis for both the group and individual interviews, and areas of disagreement were discussed to ensure a consensus. Researchers were mindful that group interviews reflect a generalised understanding, whereas individual interviews provide more personal views. However, similar interpretations and themes emerged from both types of interview, and referral to field notes throughout the process enhanced the trustworthiness of the findings through data triangulation.185
In the rest of this chapter, we combine the perspectives of both the nurses and the trial participants to provide an overview of their experiences of being part of the PACE-UP trial. We present our results in terms of the three key phases of the intervention: preparing for the trial, delivering or receiving the intervention and after the trial/implementation.
Preparing for the trial
A key theme that emerged from our work with the nurses was the importance of the pre-trial training programme. As documented in Chapter 6, before the trial was implemented the nurses received training in the BCTs that underpinned the intervention. Support was then ongoing once the trial had started. Although these were experienced practice nurses, we could not presume detailed familiarity with all of the techniques that our study involved. An additional and important feature of the training was the importance of trial fidelity. One unique element of our trial was the delivery to couples. This is not a familiar service delivery model for our nurses and so it was one area where we provided specific support/training. As comprehensively demonstrated in Chapter 6, the consensus from our nurses was that they felt appropriately trained and prepared to deliver the intervention as per the protocol: ‘all the training was really excellent’ (PACE-UP nurse, focus group).
For participants, the key pre-trial activity focused upon the decision to participate. This is described in detail in Chapter 5, in which we discuss the recruitment and participation rates. In Chapter 5, and in Normansell et al.,148 we present both the sociodemographic profile of participants and examine why individuals opted not to participate in the trial. Although we have details of the sociodemographic profiles of those who take part in PA trials, we have less information on what motivated participants to take part in the trial. This was not explicitly explored in our interview, as the focus was on the trial and its impact on levels of PA. However, some participants talked explicitly about their reasons for taking part in the trial. Key individually based motivations to participate were concerns about weight and helping to manage existing long-term conditions (especially diabetes mellitus). Others noted the commitment they were making in signing up for the intervention, even though they were not aware of which group they were in when they agreed to participate in the trial: ‘Well I must admit, when I first signed up for it, I was thinking what I have done to commit myself to this for quite a long time’ (ID30).
Delivering and participating in the trial
Our focus in this chapter is on the experiences of participating in the trial, rather than on the outcomes or the factors that facilitated changes in PA. Our trial had three arms: usual care (n = 338), postal pedometer intervention (n = 339) and nurse-supported pedometer intervention (n = 346). Of our 43 interviewees, 21 were in the nurse-supported intervention group and 22 were in the postal delivery group. We first consider the experiences of participants who were in the nurse-support group and compare these with the postal delivery group in terms of how they perceived their engagement with the trial.
Perceived value of nurse consultations
The nurse-led consultations were well accepted by the participants in that part of the trial, with 74% (255/346) attending all three sessions. Overall, those who were allocated to the nurse-supported intervention arm were very happy with their meetings with the nurse, as illustrated thus:
Yes, the nurse was very helpful . . . it was really good for me.
Conversely, those who had not been in the nurse-support group were, overall, confident that they did not need the support of the nurse:
I think I was happy doing it on my own. I don’t think . . . I mean it was very . . . it was very easy to follow your instructions and what you wanted us to do and so I don’t think meeting a nurse . . .
No, I don’t think it [visiting the nurse] would have been useful really.
Some were sceptical of what advice the nurse could give:
No, not really. What would she say, walk a bit quicker, eat a bit less? It’s common sense, I knew in the first place.
I know what I should be doing.
Others were confident in their own internal motivation:
I think if I’ve agreed to do something, then I will try and achieve that target, whether somebody tells me face to face or by post, so I think it’s dependent on the individuals maybe, individual choice.
There were two key caveats to the confidence of the postal delivery group in increasing their PA without the support of a nurse. These were existing health problems and overcoming barriers. Several participants in the postal delivery group observed that if they had had a long-standing health problem, they may have preferred the security and support of the nurse, as illustrated in this comment:
If I did have health problems, I may have wanted to see a nurse, and say, look, I’ve been doing this and I’ve had an ache and a pain here, shall I stop or . . . you know, if it was that situation, and I think yes, you might need to speak to someone you know who could advise you medically, but I didn’t need it.
In addition, some participants in the postal delivery group thought that being able to see the nurse might have helped them to overcome the difficulties and challenges they experienced when trying to increase their PA, for example:
I would have found that better [to see a nurse] because, if I’d have talked to her about the steps, she might have been able to umm introduce something else . . . [participant was concerned that the target step count was unachievable]. I think if I’d have been seeing the nurse regularly then, during that summer, umm, we would have found another way I feel, you know.
Behaviour change techniques
Our intervention included over 20 distinct behaviour change activities, as defined by Michie et al.,68 embedded within the PACE-UP trial handbook and diary (received by both the postal delivery group and the nurse-support group) and, additionally, within the protocol for the nurse consultations. Reference to these specific BCTs were then extracted from the interview transcripts to determine what elements of behaviour change were viewed as being most helpful by the participants.162 There were 152 examples of these factors in our interviews: 54 in the postal delivery group and 98 in the nurse-support group. With the exception of self-monitoring, the BCTs were more frequently noted in the nurse-support group compared with the postal delivery group. The elements of Michie et al.’s68 typology that were especially evident in our participants’ comments were (1) the provision of information, (2) monitoring and feedback and (3) strategies for relapse prevention/overcoming challenges. Rewards, an important element of the typology, were not seen as being of great importance by our participants. Both of our intervention groups appreciated receiving information about the link between behaviour and health. However, a key and important type of information provided, especially in the nurse-support group, was specifically tailored and personalised information about how, where and when to increase walking, for example:
She gave me a printout of umm . . . some . . . walks that you could do, group walks and things like that.
In terms of monitoring and feedback, nurses played an important role for their group, as exemplified by comments such as the following:
She was very encouraging.
Oh I felt really happy [with the nurse] and she was very happy too with me and I did really like my nurses, yes. That was one of my reasons because, each week I go, I ask her if they think I am doing well, am doing well, yes [laughs].
Importantly, the nurses were seen to provide motivation and encouragement when the ‘novelty’ of the intervention was waning and participants were at risk of lapsing, for example:
I think there was a point where they sort of said, you know, don’t give up now, or something like that, you know, at the point where . . . the novelty might have worn off . . .
The postal delivery group largely felt that they could self-monitor their activity:
I felt like it was enough to know [the step count] . . . I think it was fine, just to sort of keep . . . I was very good about filling the diary in and it was sort of for me that was enough to keep me going really.
Adapting the trial protocol versus fidelity
Given that this was a trial, it was essential that the nurses delivered the intervention as per the protocol; therefore, before the trial started, we provided extensive training to the nurses and emphasised the importance of adherence to the prescribed protocol:
The equipment was excellent, the pedometers, the accelerometers, excellent, excellent, excellent.
However, given that the trial ran over 12 months, pragmatic adaptations were made by the nurses (in consultation with the team) in response to the specific circumstances of participants, for example, working around holiday periods (e.g. Christmas) or periods of religious observance, such as Ramadan:
. . . forget about the 2 months around Christmas . . . you can’t get appointments and they don’t want to wear it [pedometer].
This serves to remind us that delivering behaviour change interventions in real-world practice requires ‘fine tuning’ in the delivery to reflect the complexity of people’s daily lives. We assessed fidelity by audio-recording a minimum of three consultations for each nurse, as described in detail in Chapter 6. However, this also enabled us to provide specific feedback to the nurses on their use of the BCTs employed. This was universally welcomed and improved their practice during the trial, but also provided them with enhanced skills to take into practice beyond and after the trial:
I actually changed my practice from thereon, so yes, it was exceptionally helpful.
Trial materials and equipment
Both nurses and participants remarked on the materials that supported the trial, namely a pedometer, a PA diary and a series of optional handouts, as described in Chapter 2. From the participants’ perspective, each element of the trial had both advantages and disadvantages. However, the focus of the comments about equipment from the participants’ perspective was upon the accuracy (or otherwise) of the pedometer. Typical of the more critical comments of the pedometer was:
That day we went for a really long walk round the common, I was really disappointed when I come back, it didn’t seem to register very many steps. I’ve obviously done a lot more than . . . registered about ,000 or something, well walked around the whole of Tooting, is a bit more than that I think.
There were fewer comments about the diary, which was seen as being motivating:
I was very good about filling the diary in and it was sort of for me that was enough to keep me going really.
However, for others it was chore:
Like I say, it is an effort, it’s umm . . . you have to know what you are in for, and then really maintain it. I had to record it every day, yes, you are busy, sometimes you are out and you go for dinner and then you come home and then you had a few drinks and you can’t remember what day it is.
Actually writing down the activities and things, it . . . after about the first day, I got bored with that.
Nurse satisfaction
One feature of the trial noted by the nurses (but not the participants) was the time that they had to devote to the PA consultations compared with their normal activities, as this comment illustrates:
You know, we don’t have any protected time for health promotion . . . the health promotion is the add-on. It’s giving us the time, because we don’t have the time.
From the nurses’ perspective, this engagement provided considerable job satisfaction in seeing their participants embrace change and become more physically active. A feature not experienced prior to the trial by most of the nurses was delivering the intervention to couples rather than individuals. This presented a unique challenge for some of the nurses as, in normal practice, it is unusual to be working with two patients simultaneously. Sometimes the dynamic worked well:
. . . most couples, they enjoy doing it together because they’d go . . . they could go out walking together and, even if it was through the winter, at least if they were both going, they had each other . . . they use to encourage each other. So if one didn’t want to go the other one would encourage them and they’d make sure they went.
At other times, the problems encountered were a significant barrier:
I’m not actually overly sure how couples worked. I don’t know if I had, I don’t know if it caused more issues sometimes, in the fact with the pedometers, because they got so focused sometimes on the fact that their pedometers didn’t match up.
After the trial and implementation
All participants felt that they had benefited, regardless of changes in their objective PA levels, and had developed skills in terms of embedding PA in their daily lives and routines and by developing strategies to overcome challenges when they arose:
Yes, everyone in my house now, we don’t drive to the shops, we all walk to the shops . . . it was easier for me just to jump in to the car, now I have to think twice, do I really have to?
Yes, setting my own targets and now . . . well, it’s something that I’ve got used to now and I’m determined to keep it up.
All of our nurses were very positive about how participation in the trial had developed and enhanced their knowledge and skills, which they were applying across a wide range of routine lifestyle consultations, not just related to PA, but also for smoking cessation, weight loss management and the prevention of chronic diseases. From the perspective of primary care and the nurses specifically, participation in the trial generated a legacy and the project was, in a small way, able to support the development of expertise in primary care of the use of BCTs and in working with patients in different ways (e.g. couples).
Our intervention was an individual as opposed to a group-based intervention. Some participants firmly believed that this was most appropriate:
If it involved each person reporting back on their success or failure at meeting the previous targets, it might be a bit awkward in a group possibly.
However, others identified the potential benefits of a group intervention:
When you are with other people, and then you see the same problems they are facing, some of them might come up with other ideas . . . you can form a team, support network.
Ultimately, this suggests that we need a repertoire of interventions that mesh with the circumstances and preferences of the different populations.
There was virtually uniform support for the location of the trial within a primary care context, with many participants recognising the convenience of getting to their GP surgery:
. . . you wouldn’t want someone to have to travel and people know how to get to their doctors don’t they?
Yes, that was good, because obviously it was very near home so it was ideal.
From the nurses’ perspective, although acknowledging that the intervention would be beneficial to their patients, they observed that within the time constraints of routine practice, they would not be able to replicate the full intervention as it stood within a routine nurse consultation. The nurses made suggestions for modifying the intervention to focus on the pedometer and printed materials for use opportunistically within ‘normal’ practice and, perhaps, to be available on prescription. The suggestion that health advisors, or a related role, could deliver the intervention that we evaluated was not supported by our nurses.
Discussion
From this phase of our study, several key points arise. Almost without exception, both the nurses and the participants enjoyed taking part in the study and felt that it had provided them with important and enduring benefits. For the nurses, these benefits were couched in terms of new skills that they could transfer into their routine practice. For participants, there was an increase in their awareness of the benefits of walking as a means of enhancing health by increasing PA. Among our intervention groups, this perceived benefit was articulated irrespective of the objective changes in PA.
For nurses and intervention group participants, a key feature of the trial was the preparatory work before the intervention started. This was especially important for the practices who participated and the nurses. We opted to deliver this trial in ‘ordinary’ general practice settings to test out the potential of the intervention to be implemented in routine primary care settings. Participants and nurses alike felt that primary care is the appropriate setting from which to run such interventions. However, the nurses provided a caveat to this with comments about the constraints of time within ‘real-world’ primary care. Prior to the implementation of the intervention, the research team and our behaviour change experts worked extensively with the practices and nurses and provided training in the intervention, feedback on the delivery of the intervention and support across the trial to the nurses delivering the intervention. One example of a challenge with which some nurses needed support was in working with couples. This is not something that usually occurs within their general working regime and support from the research team in dealing with these challenges was important.
The nurses were supported to adapt how materials were introduced and used within the consultations to make these materials relevant to the participant and thereby personalise the intervention more. This is a key challenge in effectively delivering standardised interventions, in both trial settings and every day primary care – how to ensure the consistency of information provision and support, while also making it relevant to individuals. Empowering nurses, and other primary care staff, to make ‘patient-centred’ adaptations to standard behaviour change programmes is likely to result in improved outcomes. This links to the important issue of tailoring support to make changes in health behaviours to match the circumstances and preferences of individuals. Thus, support needs to be appropriate to external factors, such as seasons or the time of year, or key events in peoples’ lives, such as retirement, but also reflect individual circumstances such as preferences for group or individual activities and the relevance of written or other types of digital materials and current health problems. Our study has included two types of intervention that offered varying levels of support, both of which generated increased levels of PA. A key challenge for future studies is to determine which groups would benefit from the ‘minimal support’ pedometer by post-type intervention, and those for whom the more intense nurse-led intervention is the most appropriate.