The sample comprised 23 cancer survivors (18 female), with a median age of 55 years (range 35–83). Most were breast cancer survivors (n = 11), all had received surgery, and most (n = 13) adjuvant chemotherapy (Table 1).
Median interview length was 32 minutes (range 18 to 65). Interviews generated five themes: perceptions of factsheet, experience of CRCI, strategies to manage CRCI, interaction with the healthcare system, and impact of the factsheet (Fig. 2). Exemplar quotes are presented, reflecting diverse participant perspectives. The themes were mapped to Andersen’s Behavioural Model of Health Services Use  (Fig. 3).
1. Perceptions of the factsheet.
Participants discussed the layout and presentation; wording; and, information both positively and negatively, demonstrating varied perceptions. For example, P01 described the factsheet as “easy to read… in language that somebody would be able to understand”, while P10 stated, “there’s probably… far too many words and it’s too long for people who have trouble with literacy.”
Information was divided into: overall content; symptoms; and strategies and resources. Overall, responses reflect the factsheet being “very practical” (P23), thus an enabling resource . Some participants preferred more information, including what CRCI is and why it occurs. Additionally, P07 recommended including a severity chart to determine whether symptoms were severe enough to consult a HCP.
2. Experience of CRCI.
Participant experiences of CRCI included symptoms and timing of changes. Subthemes symptoms experienced and impact were identified. Many participants treated with chemotherapy experienced symptoms described in the factsheet, including feeling mentally ‘foggy’, difficulty following conversations or multitasking, and memory issues. Persistence of symptoms varied, some stopping “immediately after I finished chemo” (P05), while ongoing for others: “definitely worse than before I had the chemo” (P21).
A minority, mostly those not treated with chemotherapy, did not experience CRCI symptoms, although others reported CRCI:
I couldn’t multitask… I can’t think of the right word, and I haven’t had chemo… so I wonder… I think when we call it “chemo-brain” that can negate some people’s experience. P03
Experiencing CRCI impacted participants differently, related to differing health beliefs regarding the severity and consequences of cognitive change . Some reported acceptance or positive reframing: “if this is a side effect of the treatment, well, it just has to be” (P07). Several expressed negative responses towards their symptoms:
The idea that I can't rely on my brain as much is actually super upsetting, emotionally, it goes to my sense of identity, my sense of self, it makes me worry about my future career prospects, and about whether I'm going to be able to continue to do my job, or get the promotions that I had hoped to. P15
There was variability in timing of CRCI symptom onset. For example, P12 realised: “before I was diagnosed I noticed that I was starting to not cope”. Others noticed changes after diagnosis or treatment: “After the first week of chemo… things started to just blur” (P07). Some took greater notice of symptoms after treatment ended: “When you sort of think things should improve and you’re actually still a bit brain fogged... maybe a year after [chemo].” P04
3. Strategies to manage CRCI.
Participants identified strategies reflecting the four groups in the factsheet, indicating their ‘personal health practices’ . Most adopted “setting alarms on your diary, writing things down, to do lists, trying not to multitask” (P21). Some found the strategies relatable, achievable, and informative:
I didn't really make the connection between nutrition and cognitive function, so that's good, that feels nice, ‘cause it’s a thing that I'm already doing. P15
However, the following quotes reflect some strategies are unrealistic, particularly where symptoms are more severe:
It was clearly written by someone who’s never been through it... the bits about, you know, eating healthy, nutritious food, and going for a walk and getting fresh air… Some days, you know, just, getting out, having a shower, getting some breakfast, getting some clothes on, and I’m absolutely wiped out. P08
4. Interaction with healthcare system.
The theme perceptions of healthcare system encompassed positive and negative health beliefs regarding benefits and barriers to seeking professional help , influenced by ‘use of health services’ . For example, P01 described hesitating to discuss symptoms with the doctor, who was “very good… but [doctor’s] bedside manner isn’t great… [they’re] not super empathetic”. On the other hand, P12 stated, “I had a fabulous, fabulous GP… in Queensland and even though I'm down in Adelaide I still… consult with [them], because [they’re] phenomenal.”
Some believed there is a lack of access to healthcare resources, particularly outside major cities, rendering recommended resources inaccessible. Stigma was also associated with obtaining a Mental Health Care Plan.
5. Impact of the factsheet.
The theme knowledge about CRCI was identified, comprising general knowledge; causes; and prevalence and trajectory. Additionally, participants expressed varying perspectives concerning effect, optimal timing, and sharing of the factsheet.
Most participants knew of CRCI from other people with cancer, others from HCPs. Some learnt about CRCI through their own information-seeking, while a minority had no prior knowledge of it.
Causal attributions influenced participants’ health beliefs of perceived CRCI susceptibility . Many attributed cognitive changes to chemotherapy and ageing. Those not chemotherapy-exposed and experiencing CRCI expressed confusion about their cognitive changes and praised the factsheet on clarifying causes of CRCI’s causes:
I thought, “I’m not having chemo why is this happening to me,” …I thought… it’d only happened if you had chemotherapy. P03
Participants’ health beliefs surrounding severity and persistence of CRCI influenced perceived benefits and/or risks of using the healthcare system . For example, some participants described fearing CRCI symptoms were permanent or without solution: "I didn’t feel like it was worth discussing it with anyone because I didn’t think there was any… solution to it” P01. The factsheet informed participants of CRCI’s trajectory and prevalence, helping some understand it is common and recovery possible:
It’s actually quite comforting to think that it might go away one day if it … could possibly be stress or emotional… there’s light at the end of the tunnel. P13
All participants stated the factsheet would not influence their treatment decision-making. This was linked to positive perceptions of healthcare system, particularly getting the right treatment being important, and the belief “you’ve got to do what [HCPs] say because they know better than you,” (P17)
‘Consumer satisfaction’  was identified in the factsheet’s ability to normalise, validate, raise awareness and prepare for CRCI. These effects were influenced by impact of symptoms on participants and knowledge about CRCI:
‘What's nice about this factsheet is it just recognises that [CRCI’s] a thing’. P15
Some participants were indifferent towards the factsheet, recognising it may cause additional worry: “Maybe it would have frightened me a bit more, I don’t know” (P06). However, most felt it would be useful to refer to, prompting adoption of personal health practices:
Anticipating that this might happen I think would have been useful... And then if it didn’t happen that’s fine, but if it did… You know you would have had some strategies... P18
For some, the factsheet would prompt use of health services:
[If I had the factsheet] I would have asked each of my [HCPs] at the time, “Is there anything else that I can do?” P21
Perception of optimal timing to receive the factsheet was informed by whether participants experienced CRCI, timing of changes, and effect of the factsheet. Perceptions varied, ranging from being most useful at diagnosis, prior to or during treatment, or during recovery. A minority questioned whether the factsheet should be provided at all, while others believed all patients should receive it:
It’s about giving them the factsheet, it’s not about… mandating that they read it... it’s there if you want to have a look at it. P06
Some participants believed providing the factsheet should be at the discretion of HCPs, either “...if people are actually having trouble, then perhaps giving them some information” (P10), or during a discussion about cancer, treatment, and side-effects in “a subsequent appointment… a couple of weeks [after diagnosis] perhaps to process that” (P18). Another participant, P03, suggested providing the factsheet at multiple timepoints, such as “upfront, and then again” and “by different [HCPs]”, to reinforce the information.
The positive effect of the factsheet meant most participants were open to sharing the factsheet with others. Attitudes towards discussing the factsheet with HCPs were influenced by perceptions of healthcare system. Prior positive experiences with their HCPs rendered some open to discussing the factsheet. Others perceived no benefits in discussion with HCPs, reflecting health beliefs surrounding benefits and barriers health service use :
I probably wouldn’t discuss it with a doctor, to be honest. I might mention it, but doctors don’t always have time for these… side issues, I guess. They’re more concerned about cutting it out or making you well, as opposed to how you cope with life. P05