Table 2 Examples of patient input and recommendations during co-design activities

Recommendations made by patients for the planned intervention during the first co-design workshop

(Co-design workshop fieldnotes, 03 February 2020)

Small group discussion—Group A

 Patient 09: I think one would assume they know (Clinician 05: yeah, yeah) and I think one of the big issues with information is their capacity, whether it is inherent or temporary because of their emotions (Clinician: yeah). I think for some people, words won’t do it

 Patient 09: …I think pictures are a way to go (Clinician 05: yeah) like infographics, just like what MT used, when she explained the process…much more pictures (yeses)

 Clinician 05: …and for every phase, the time for them, when to deliver. With reviewing these processes, the disparity… it does exist. There are common themes to our agendas, we just have to…

 Patient 11: …keep going on about it

 Clinician: yes

 Patient 09: And also, the information, at the moment we get it the way that I got that…you know, how it might mean…discussing…catching some moments like that… (Patient 11 agreeing to what Patient 09 was saying). Clinician 05: yeah, to go through in your own pace

Patient suggestions on content of intervention (film)

 Patient 13: “We are captive while we're having chemo. We're kind of there and so you can find us quite easily. Or even just, it’s an opportunity, as I say, it’s a teaching moment, if you’ve got somebody there and just a small chat, you know… and I know how busy you guys are, I know how understaffed you are…”

 Clinician 08: “Chemo nurses could come in … you call it a teachable moment [yeah] because they do talk to patients about their symptoms [they do]”

 (Co-design workshop fieldnotes, 03 February 2020)

 “I think one film would be sufficient and would hold people’s attention better. People waiting for chemo, if they are like me…find it difficult to focus /concentrate on first chemo. The mind is wandering. Perhaps a viewing with a nurse, someone to answer questions. I realise this is all time consuming. It would only be necessary if the patient showed interest.

 (Sent by Patient 01 through email, 09 June 2020)

Patient suggestions on content and format of the intervention (booklet)

 “I think I agreed with most of what was discussed but wasn’t sure about the “What are the symptoms of CIPN” section. I thought it might be better to separate the five symptoms into 2 areas. With 1 and 3 being the more long-term conditions and 2, 4 and 5 the short-term symptoms. So a heading could say “Symptoms most common during treatment” and then “Longer lasting symptoms”. Also, the worst effect of the drug has not been mentioned which is what can happen if during your infusion you eat or drink something cold. This can cause your throat to close up and it becomes hard to breath. Nurses are well aware of this. It happened to me once and was very frightening. As soon as you have a hot drink though the feeling passes.” (Sent by Patient 13 through email, 23 June 2020)

 “The general look of the design seems very good with the use of colour blocks a nice way to separate the texts. I would like to comment on the ‘walking or standing for a long time’ section. I thought it was a bit hard to follow and could be rephrased. i.e. – consider sitting whilst waiting for a bus or when having to queue, perhaps taking a folding seat with you. At home a high stool could be useful…I like all the spaces left for the patient to use to ask questions or make comments. I also think the statistic page (2) showing the percentage of people that are affected looks very good”

 (Sent by Patient 13 through email, 19 October 2020)