Introduction
Methods
Study design
Participants
Phase 1: web-based survey
Phase 2: qualitative interviews
Data analysis
Patient and public involvement
Results
Phase 1
Variable | Phase 1: % Survey respondents (n) n = 90 | Phase 2: % Interviewees (n) n = 20 | |
---|---|---|---|
Age (years) | Under 30 | 1 (1) | 0 (0) |
30–39 | 8 (9) | 1 (5) | |
40–49 | 33 (37) | 7 (35) | |
50–59 | 40 (44) | 12 (60) | |
60 and over | 8 (9) | 0 (0) | |
Number of years qualified as a nurse | Less than 2 | 0 (0) | 0 (0) |
2–5 | 0 (0) | 0 (0) | |
6–10 | 8 (9) | 0 (0) | |
11–20 | 15 (17) | 2 (10) | |
21–30 | 36 (40) | 11 (55) | |
Over 30 | 31 (34) | 7 (35) | |
Number of years working with people affected by breast cancer | Less than 2 2–5 | 2 (2) 8(9) | 0 (0) 2 (10) |
6–10 | 16 (18) | 3 (15) | |
11–20 | 41 (46) | 11 (55) | |
21–30 | 22 (24) | 4 (20) | |
Over 30 | 1 (1) | 0 (0) | |
Job banding | 5 | 2 (2) | 1 (5) |
6 | 22 (24) | 6 (30) | |
7 | 50 (56) | 7 (35) | |
8 | 14 (16) | 6 (30) | |
9 | 2 (2) | 0 (0) | |
Clinical area | Surgery | 41 (46) | 8 (40) |
Oncology | 24 (27) | 8 (40) | |
Surgery and Oncology | 10 (11) | 3 (15) | |
Oncology and medical | 2 (2) | 0 (0) | |
Surgery, oncology and medical | 2 (2) | 0 (0) | |
Primary care | 1 (1) | 1 (5) | |
Other | 10 (11) | 0 (0) |
Different types of work undertaken by SBCNs on a daily basis | |||||||
% of 90 (n) | |||||||
Anxiety management | 13 (73) | ||||||
Communicating news | 13 (74) | ||||||
Counselling | 8 (46) | ||||||
Crisis interventions | 7 (40) | ||||||
Supporting clinical choices | 15 (84) | ||||||
Dealing with distress | 15 (64) | ||||||
Information giving | 15 (89) | ||||||
Preparing for treatment | 14 (79) | ||||||
Nurses who report using assessment tools in their daily work | |||||||
Yes | No | Maybe | |||||
% (n) nurses using a FCR assessment tool | 22 (20) | 78 (70) | n/a | ||||
% (n) nurses assessment tools (general) | 28 (25) | 72 (65) | n/a | ||||
% nurses who find assessment tools helpful | 70 (63) | 30 (27) | n/a | ||||
% (n) nurses willing to attend a Mini-AFTERc training course | 74 (67 | 0 | 26 (23) | ||||
Nurses who report receiving training/support to perform their role | |||||||
SD | CS-1 | CS-T | ITD | FTD | FCR-T | OPT | |
% nurses receiving training/support to perform their role | 72 (64) | 18 (24) | 24 (31) | 51 (68) | 7 (9) | n/a | n/a |
% nurses receiving specific FCR training | 21 (19) | ||||||
Nurses perceived benefits of receiving different support/training to their work | |||||||
< 50% | n | > 50% | n | n/a % | n/a n | ||
Support received from team SD | 28 | 25 | 63 | 58 | |||
One to one/clinical supervision CS-1 | 20 | 18 | 29 | 24 | 51 | 46 | |
Team clinical supervision (CS-T) | 20 | 18 | 35 | 31 | 46 | 41 | |
Informal team discussion (ITD) | 25 | 23 | 69 | 62 | 7 | 6 | |
Formalised team discussion (FTD) | 17 | 17 | 31 | 31 | |||
Specific FCR training (FCR-T) | 16 | 3 | 73 | 16 | |||
Other focused psychological training (OPT) | 72 | 16 | 16 | 3 |
Phase 2
NPT Component – Main theme | Sub-themes | Coding |
---|---|---|
Coherence Is the sense making work that people do individually and collectively when they are faced with a problem of operationalising some set of practices | Identifying FCR – how it is raised | Formal assessment |
Not always addressed | ||
Probing for silent concerns | ||
Timing of FCR discussion | End of treatment – 6 months after | |
On-going | ||
variable | ||
Managing FCR (strategies) | Discussing signs and symptoms | |
Signposting | ||
Open access follow-up | ||
Confidence | Confident | |
Managing uncertainties | ||
Difficult to raise | ||
Cognitive participation Is the relational work the people do to build and sustain a community of practice around a complex intervention or technology | Training format | Face to face |
online | ||
Training aspects | Action plan | |
Advanced communication | ||
Willingness to invest time | Adding to skillset | |
Whole BCN team | ||
Collective action Is the operational work that people do enact a set of practices, whether these represent a new complex intervention or technology | Changing practice | Enhanced practice |
more awareness of FCR | ||
Fits well | ||
Perceived difference between Mini-AFTER and current practice | More structured and specific | |
Triaging tool | ||
Helps alleviate fear | ||
Reflexive monitoring Is the appraisal work that people do to assess and understand the ways that a new set of practices affect them and others around them | Workable in practice | Timing of discussion |
Timing involved | ||
Fitting with other tools | ||
Who would Mini-AFTERc benefit | Patients | |
SBCNS | ||
Patient sustainability | Offer to all patients | |
Which patients would be suitable |
Coherence
Those nurses, however, who initiated FCR discussion believed they were validating a pre-existing concern that most, if not all, patients already experienced.“It’s all about reassuring. It’s all about everything’s going to be absolutely fine and to bring in the fact that, oh, actually, well, you...it might come back, you know, goes against a lot of what the message that I’d say we’re trying to get across is how I interpret it”. SBCN12
Strategies for assessing people’s unmet needs were limited. When assessment tools were used, most spoke reported using the “Macmillan concerns assessment tool” despite it not including specific questions about FCR.“I think my concern is not knowing what I could do about it. I mean, I can refer people for therapy, for counselling, but I don’t know that that’s necessarily the thing that they need. They’re not necessarily depressed or have an anxiety state, they need to know how to deal with that one particular problem”. SBCN19
Cognitive participation
However, the importance of the intervention fitting within their current working practice was stressed;“It’s harder now than it used to be back in the day, but I think if it’s something that is going to be of value and you feel it is going to be of value professionally. I think you pick and choose now which you feel is going to be beneficial to you in your role, and your patient experience and expectation”. SBCN11
There was no consensus about when to introduce it, to whom and where;“We wouldn’t have the time to do a separate session, so we would have to integrate it into something we’re already doing when we’re already seeing them”. SBCN1
“I don’t think there’s any particular group that are more fearful than others. So in an ideal world, it would be great if everybody was offered this opportunity, but that would be absolutely impossible because of the number of breast patients that we see. So whether it could be something that the BCNs talk about and say, you know, if at any time in the future you feel as though you’re feeling particularly concerned, then we can have a more in-depth conversation”. SBCN2
Collective action
Others could envisage quite clearly mutual benefits from the structured approach, which they saw as acting as a triage tool,“I’m not a hundred per cent sure if it would change practice greatly. I think it would just make us more aware of what we need to address” SBCN 14
Reflexive monitoring
Not all nurses felt comfortable and a number mentioned concerns about the intervention being delivered by telephone rather than face to face:“I think anything that benefits the patients, and makes the journey easier and also gives us more skills in dealing with recurrence and fear of recurrence has to be beneficial to both the patients, the nurses, and to the service”. SBCN16
Combining the data, Table 4 provides a summary of some of challenges and solutions that would need to be considered to optimise a future trial to test efficacy.“I would like to use face-to-face, I prefer face-to-face interventions and I think there is lots of unspoken and body language and just people’s unspoken behaviours that tell a story, so I prefer that but I think it would be useful to have as a phone intervention as well”. SBCN3
NPT components | Questions using a NPT approach | NPT analysis to improve trial design |
---|---|---|
Coherence | What is the relationship between knowing about FoR is a concern and identifying how a new intervention aligns with everyday practice? | The intervention, described in more detail for the interview participants, was easily understood and distinguishable from other interventionsthey delivered. |
What is the worth attributed to introducing a FoR intervention? | Fear of recurrence was a term very familiar to the SBCN and recognised by many as an area of concern among patients they meet. | |
Is the intervention easily described? | Perception of the proportion patients with moderate to severe FCR may be over or under-represented. This indicated a gap in accuracy in current assessment approaches used and therefore estimation of perceived benefit. | |
Is there a shared sense of purpose? | ||
Who would the intervention benefit? | ||
Are benefits likely to be valued by women with breast cancer? | ||
Cognitive participation | Are the target groups, people affected with breast cancer, and SBCNs likely to think it is a good idea? | For SBCN, the trial would provide an opportunity to gain new skills through protected training and positively viewed. |
What kind of skills do SBCNs have now when dealing with FoR concerns? | It is expected a structured intervention could improve the confidence of SBCNs | |
Are SBCN likely to invest time, energy and work into delivering a FoR intervention? | SBCN’s offered the opportunity to gain psychological training to deliver a FCR intervention were largely enthusiastic and likely to invest time to train to do it. | |
Collective action | Will it promote or impede their work? | Projected benefits appear to be consistent with their work |
Do they think it would change the patient/SBCN relationship? | May improve interactions. Uncertainty about how patients will be approached – training will help | |
Is the work compatible with the existing practices of the SBCN? | High levels of their work are focused on psychological support although low use of structured cognitive behavioural approaches | |
How would the intervention impact on their workload? | The SBCNs may need to challenge their current /organisational practices in the provision of psychological support | |
How does it fit with organisational goals? | ||
Reflexive monitoring (reflect on the trial) | How are SBCNs likely to perceive the benefits of the intervention once it has been used? | SBCN saw the benefits of intervention and understood training would be delivered. Some held concerns about the intervention being delivered via telephone and not face to face. |
Do they perceive issues associated with recruitment? | For SBCN, clear training in identification of participants with moderate FCR is required | |
What would be required to make the intervention workable in practice? | There are pressures on services so choosing a regular day/time to deliver intervention will be necessary to encourage adoption into work schedule | |
When would be an appropriate time to review the intervention? |