Study Design
We adopted a qualitative descriptive and exploratory approach. This is particularly relevant where information is required directly from those experiencing the phenomenon under investigation and the aim is to identify the themes that best describe participants’ thoughts and experiences [16, 17].
Sampling and data collection.
Consecutive participants were invited to take part in a semi-structured interview within a week following the final study assessment. Interviews continued to data saturation (three consecutive interviews with no new themes or concepts arising) [18]. Semi-structured interview questions were developed based on key topics of interest through the research team and previous findings [19]. Interviews were conducted via telephone at a time convenient to participants. PG completed 24/27 interviews. A trained independent person conducted remaining interviews to reduce potential bias [20]. Interviews were audio-recorded and transcribed for analysis using the framework approach to allow interpretist understanding of the data [21].
Data analysis
An interpretivist perspective guided thematic analysis [17]. This foundation is an investigation of a clinical phenomenon of interest to capture themes and patterns associated with subjective perceptions and create a description capable of informing clinical understanding [17]. The information provided from each interview was analysed using the framework approach [22] and followed the six phases of analysis recommended by Braun and Clark (2006) [23]: data familiarisation, initial code generation, theme searching, reviewing potential themes, defining and naming themes, co-coding and member checking. To increase validity a second coder (LS) reviewed the identified themes and codes in the first four interviews. Additionally, the first six interviews were checked and discussed by study nurse, co-coder and senior researcher. Coding and analysis were discussed with the research team on a fortnightly basis to clarify emerging themes and sub-themes. This process of constant comparison and discussion among the full study team provided multiple and divergent insights that preceded the achievement of consensus [20, 24]. Member checking was undertaken to ensure rigor, with the final three participants checking and confirming the key themes to validate, verify, and assess the trustworthiness of results and to comment on the relevance of themes to the interviewees’ experiences [20, 25].
Qualitative insights
Twenty-seven interviews were conducted to reach data saturation. All interviews were conducted via telephone, with a median duration of 9 minutes (range 3 to 22). Participant characteristics were described in the introduction.
Themes
Four themes were identified: 1) Ease of participation; 2) Personal values that impact attitude to participation; 3) Desire to engage in self-help; and 4) The appreciation of additional support. These broad themes were further described by sub-themes (see Figure 1).
Theme 1: Ease of participation
People spoke of understanding study requirements and perceiving participation as easy and scheduling of assessments as ‘convenient’. Despite the distress, challenges and stress associated with the cancer diagnosis and concurrent timing of the study invitation, most people approached agreed to participate.
“I was very clear about the information as you presented it very clearly in a way that I could understand, and you also acknowledged that I was in a bit of shock because I had just been diagnosed with Hodgkin lymphoma.” (P5)
However, some participants reflected that, in hindsight, they had felt overwhelmed and stressed when approached. One person mentioned the importance of being given more time to consider study.
“Maybe potentially don't approach people straight after a big meeting like that. Like for me, it was it was fine, but I could imagine some people may get a bit upset. Maybe mention it, then a phone call or something like that.” (P22)
Many participants commented the process of taking part in the study was made as easy as possible. They described feeling well informed about study requirements and perceived the study as credible or valued.
“I was kind of excited, a bit privileged, to be a part of the study, to be able to help find out if chemo brain was a thing or not.” (P18)
Organisation of study data collection timepoints to coincide with planned hospital appointments enabled participation, minimising the study impact on daily life.
“I thought it was well planned as you really made the timing work, and I didn't have to change appointments or chase you at any stage. That was really good because it would have been one thing more on my mind.” (P14)
“All the appointments you tried to work around when I was visiting the hospital anyway. Otherwise, I probably wouldn’t have done it if I'm just coming in for that.” (P8)
By contrast, some enrolled in the neuroimaging sub-study described participation as arduous, anxiety-provoking and demanding.
“I would have liked more information about how many MRIs and how much time I had to spend at the hospital as I live a long way away.” (P24)
“It's having to lie still for that extra ten or fifteen minutes (PET/CT brain scan), like today they sticky taped my head, which hasn't happened before. That was frightening, but having cancer was also frightening.” (P29)
Despite this no participants withdrew from the neuroimaging sub-study or missed a scan.
Theme 2: Personal values support participation.
Participants described wanting to help others as a strong motivator, speaking about a need to help others going through treatment and a desire to improve outcomes.
“I thought if it's going to help people that have got what I've got, it's all for the good. But if it helps them and helps me, it’s all for the better for everyone.” (P5)
One participant despite feeling confused and stressed at the time he was approached, agreed to do something good for others.
“When they decided that it was lymphoma, there really wasn't very much time for me, chemo was going to start the next day or that afternoon. It was quite sudden, but I was quite willing to do that, to help others.” (P21)
A few people talked about seeing the study as an opportunity to help others, in the hope it would ‘send some good’ their way.
“I just felt this is something that I can give back. It’s like ying and yang, I felt that if I gave something, some good would come my way.” (P23)
Many described how, having made a commitment to the study, it was important to follow through.
“I'm not a quitter and I didn't think it was a load. I just wanted to see it through and complete it.” (P13)
One participant mentioned the neuroimaging component as challenging but was committed to completing it.
“There’s no point starting and then halfway saying no. That's just me, anything I undertake, whatever I say I'm going to do, I will always do and fulfil.” (P29)
Another explained the study was an additional demand on top of their already stressful situation, but despite this, was committed to it:
“I made a commitment and I followed through on that commitment, although there were times when I was anxious and one thing on top of another. It was not so much a burden; it was just another thing to do. Like especially towards the end, I just really didn't have the energy or motivation if you like.” (P15)
In addition to helping others, participants expressed a desire to contribute to research and build knowledge and understanding about lymphoma and treatment side-effects.
“I was really interested to see if we could further the study of my lymphoma and the treatment and its side effects because, I mean, any research is good.” (P16)
One participant described the impact of cancer treatment on another family member as the motivation to take part and complete the study.
“I was pretty on board that after seeing what my sister went through with chemo brain. It certainly looked like a very real thing. I was very interested in the study as well.” (P13)
Theme 3: Self-help
Here people talked about how participating gave them an opportunity to help themselves. Undertaking the assessments allowed them to evaluate changes in their cognitive function as they progressed through treatment.
“The assessments showed me how I was progressing and really to test myself if I have a sort of memory lapse or memory has changed as treatment progressed.” (P21)
In some ways this gave participants a sense of control, reassurance, and empowerment.
“It is very rewarding to know that you've still got a few brain cells there and they're still functioning. When you go through this you sort of thing, you stop doing a lot because you're not physically capable. When you look at your mental status and you think you’ve gone to jelly, but all those little things in your study, you see it’s all coming back. That was really good. I quite enjoyed it actually.” (P14)
Participants also acknowledged how cognitive testing sometimes resulted in a perception of failure.
“Some of the puzzles that you put me through, like the green, red and blue part, oh my god it did my head in. No, I guess I don't like failure. I think I failed.” (P2)
Although negative experiences were reported, participants generally described enjoying the neuropsychological assessments, perceiving them as a distraction.
“It was a bit of a distraction, to what was going on as well. I thought this may be ok to do just to keep my brain going and not sort of focus on the negative of what else was happening.” (P8)
The neuropsychological assessments, in particular, were described as enjoyable and stimulating.
“It’s a challenge, a good challenge...... It sort of woke me up again.... it's really helps you. It opens you up and just jump starts you again. So, when you go back into normal life it helps.” (P26)
Theme 4: Additional support resulting from participation.
Participants valued the additional support and assessments offered during study participation.
“After the second one [treatment] I was a bit worse, and I found the further along I got the worse things got. So a little bit of mental arithmetic and social activity, and an extra person to talk too other than family, and sometimes you need an outsider.” (P29)
One participant described the neuropsychological testing as beneficial.
“The cognition testing helps me because of my age now, just to have this extra testing.” (P27)
Another appreciated the additional neuroimaging, recognising the MRI scan as a test they normally would not have had, and an opportunity for added surveillance.
“I kind of valued having those additional MRIs, to be honest. That wasn't part of standard of care.” (P1)
The study nurse as an additional team member was highly regarded and seen as an extra pair of eyes offering surveillance during treatment.
“I was very stressed at the beginning and I really valued there was another person checking in with me. An additional person I would not otherwise have, and I remember thinking that was something I was happy with.” (P1)
This perceived support was enhanced by perceptions of the study nurse’s characteristics.
“You (study nurse) were very respectful. You were very informative, and you laid it out exactly as it turned out to be.” (P12)
Some participants described the positive impact the assessments and interaction with the study nurse had on their thinking, attitude, and overall experience.
“I think all the questions stopped me thinking of my own problem, like spending an hour with you I didn’t think of my cancer at all. During your study I’m thinking positive instead of negative, as before I start doing the study with you, I was thinking worst of my sickness. Then I started thinking it’s not the end of the world.” (P28)
Despite the challenging cognitive assessments being delivered during treatment, the actual appointments were not recalled negatively.
“I was happy when I walked away after every appointment and didn't feel, you know, harassed or hassled or anything like that.” (P12)
This contributed to creating a safe environment where participants felt a sense of security and trust, resulting in the study assessments being a pleasurable experience.
“This study made my visits here, not a pleasure, but I’d I look forward to it.” (P27)
“I just want to thank you for letting me do this study. Thank you for the distraction before my chemotherapy. Personally, I wanted to thank you, because you're such a lovely person and was a real pleasure talking to you.” (P28)