Learnings from interviewing advanced colorectal cancer survivors

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Work: saviour or struggle? A qualitative study examining employment and finances in colorectal cancer survivors living with advanced cancer - Supportive Care in Cancer

Purpose Continuing employment or returning to work (RTW) as a cancer survivor can be meaningful and financially necessary, yet challenging. However, there is a lack of qualitative research on RTW experiences and financial wellbeing of people with advanced colorectal cancer (CRC-A). This study aimed to fill this gap. Methods Adults treated for CRC-A were recruited 0.5–2 years post-surgery (or post-diagnosis of CRC-A for palliative chemotherapy participants). Semi-structured telephone interviews, exploring RTW and finances, were subjected to framework analysis. Demographic, clinical, and quality of life data (FACT-C, Distress Thermometer, COST measure) were collected to characterise the sample and inform the framework analysis. Results Analysis of 38 interviews revealed five overarching themes: work as a struggle, work as my identity, work as my saviour, work as a financial necessity, and employer and colleague response. Many survivors with CRC-A desired to, and had the capacity to, continue work or RTW, yet faced unique challenges from compounded stigma of both cancer and toileting issues. Inability to RTW negatively impacted financial and psychosocial wellbeing. Workplace support was an important facilitator of RTW. Conclusion For survivors with CRC-A, continuing or RTW is fraught with challenges, including physical functioning challenges, financial anxiety, and unsupportive workplace environments. Survivors require psychosocial, financial, and employer support to manage these difficulties. This paper recommends a multiprong approach, including education programmes (facilitated through workers’ union groups, human resource institutions, and/or large consumer CRC groups) and policies, to support workers and for employers to understand the unique challenges of employees with CRC-A.

In March, 2019, I began the journey of starting my PhD with the School of Psychology, University of Sydney. After a systematic review examining the quality of life and psychosocial impacts of survivors of colorectal cancer, I quickly settled into my main PhD topic: qualitative explorations of psychosocial experiences of survivors of advanced colorectal cancer. While the PhD has been rewarding and insightful, I came across many challenges in recruiting, interviewing, and publishing the data. Here are my reflections of these challenges, and what recommendations I have for other researchers.

Challenge #1: Securing clinician buy-in

Securing clinician buy-in can be extremely challenging. Clinicians are at times, understandably, too busy to sit in on meetings and discuss the intricacies of research studies. Especially if you are asking them to recruit participants for you during their regular consultations. 

My experience was quite smooth, comparative to other researchers' experiences. I thank serendipity for this, in the form of a chance run-in in the hallways of a cancer hospital between my PhD supervisor and the head of the colorectal surgery department at a prominent hospital. This head of department stated that he was interested in doing some qualitative research in his patients: survivors of advanced colorectal cancer and the rest, they say, is history.

Despite this smooth alliance, the nitty-gritty of collaborating was still difficult. We engaged in several meetings with multiple clinicians from the department, and there was a lot of back-and-forth happening. Even with the clinicians being extremely open, supportive, and interested in my research, I found this process extremely difficult.

Why? Well that takes us to...

Challenge #2: Tapping into a vulnerable population

The population I was looking at were people who had advanced colorectal cancer and received different types of surgical treatment: pelvic exenteration, liver resection, and cytoreductive surgery and heated intraperitoneal chemotherapy (CRS-HIPEC). I later extended my collaboration to a medical oncology department of a second hospital to include people receiving palliative chemotherapy for their advanced colorectal cancer.

The surgical procedures mentioned can be quite radical and intensive, especially pelvic exenteration, which may involve the removal of several organs of the pelvic region (potentially all your digestive organs such as your bladder or intestines, and even all your reproductive organs such as your ovaries, uterus, vulva, or prostate). People who undergo pelvic exenteration are recovering from a massive surgery and potentially adjusting to a life where they have stoma bags that collect their faeces and urine, instead of being able to go to the toilet naturally.

As a result, I was trying to tap into a really vulnerable population. For all I knew, the people I wanted to recruit might be feeling extremely unwell, and talking to someone about their experiences might be the last thing they want to do.

Because of this, the clinicians I spoke to were very concerned about the participant burden, which included doing multiple questionnaires on quality of life and finances, capped off with a 1 hour telephone interview. On top of that, I was initially after 20 participants per treatment group, which would take my total up to 60 surgical participants and 20 chemo participants. 

For a population of survivors that is quite small (given that there are less people with advanced cancer, and even less people who have these particular treatments), this already seemed like a bit too many participants. Factor in that the department already had other studies planned, and didn't want their patients to do too many studies (again, that would be too high a participant burden), it was definitely too many participants.

We had many more meetings, and some compromises were made: I cut down the number of questionnaires, and reduced my participant sample to 10 per treatment group.

As I said, this was a difficult process, with a lot of back-and-forth, but it was very well worth it.

Challenge #3: Recruitment

Even without a global pandemic looming over our heads, recruiting vulnerable people who have had advanced colorectal cancer would probably still be difficult.

I wouldn't be able to make that comparison though, because I had to recruit during the COVID-19 pandemic. This was difficult for a number of reasons. For context into these reasons, we had multiple sources of recruitment: in-clinic recruitment by clinicians during their follow-up consultations with patients, telephone recruitment, and mail recruitment. All efforts were made to digitise the study (i.e., sending out links to questionnaires, sending emails with information about the study), but during in-clinic recruitment and telephone recruitment, potential participants could request for information and questionnaires to be physically mailed to them instead.

Now with that in mind, here were some challenges in recruitment:

  • Clinicians may have been seeing less of their patients because of COVID isolations, concerns, and lockdowns
  • For mail recruitment, mail delivery was reduced during COVID, and participants may have been wary of leaving their house to post their responses back to us, or may have had less of a chance to visit the post office
  • Colorectal cancer mostly affects people aged over 50; some people in this demographic may have preferred the study materials to be mailed to them, resulting in the aforementioned challenges with posting these materials
  • As we expected, many people declined participation in the study due to feeling unwell. In a few cases, people were extremely interested in participating, but eventually had to withdraw due to feeling unwell or having too many medical appointments and thus not feeling up to discussing their cancer experiences any more than was necessary

After a lengthy recruitment period, I was able to complete data collection, data analysis and write-up without many other challenges. I ended up writing four papers out of this study, and while I did face some challenges with publishing my data, these are pretty standard challenges not specific to the population of advanced colorectal cancer survivors.

As researchers, we are taught to face challenges with optimism and a learning mindset. So I'm grateful for these challenges as they made me reflect on what recommendations I would have for future projects...

Recommendation #1: Believe in the value of your research

Securing clinician buy-in is almost impossible if it's obvious you don't believe in your project. The many meetings I had with clinicians was a great opportunity to advocate for my research. In my case,  I believe that qualitative research in advanced colorectal cancer survivors is so important because this is such a vulnerable population, and as treatment improves, advanced cancer is no longer a death sentence. More and more people are living long term with advanced cancer, but they aren't treated as survivors because they might be viewed as end-of-life. We need to talk to them about their experiences, and how we can best support them. The fact that my article showed that many survivors of advanced colorectal cancer continued to work, or wished they could keep working, is a testament to how necessary survivorship research is in this population. And talking to participants gives us so much more insight than a questionnaire could in the topic of survivorship experiences.

On top of that, you need to advocate for yourself and your research. As stated, clinicians are understandably busy. They might be interested in your work, but forget to reply to you, or read your protocol. 

So take the initiative in emailing them, scheduling meetings in with their personal assistants, or asking if it's okay for you to call them in between appointments so they don't have to read your emails - they might actually really appreciate this.

If you can convey your belief in the value of your research, and if you can advocate for yourself, then clinician buy-in would be much easier.

Recommendation #2: Be flexible

Of course we all want to believe that our research is the most important thing (when you're doing a PhD it certainly feels like the be-all-and-end-all!) and sometimes we want to administer a whole list of validated surveys that we know will get really great data from participants. But when tapping into a vulnerable population, ethically we always need to put these people first. Their health and wellbeing is top priority, which means your research is just not that important. And that's completely okay!

Through this project, I've learnt to be flexible. As I mentioned, I cut down the number of questionnaires, the number of participants, and I even changed one of my questionnaires to something the hospital was already using as part of another research study - all to reduce the participant burden.

In hindsight, I would have loved to have taken additional steps to make the recruitment process even easier for participants. Some examples could have been providing more ways for participants to consent or answer questionnaires (such as verbally, through the phone), and being present at the clinic to build rapport and provide information to participants in-person (although this would have been difficult during COVID).

I'm sure there are more ways that I can't think of, which brings me to my next recommendation...

Recommendation #3: Consult with lived experience advisors and consumer representatives

I had the pleasure of working with a consumer representative who had lived experience of having pelvic exenteration for advanced colorectal cancer. Unfortunately, she was my only consumer representative and lived experience advisor, and in hindsight I would have loved more.

There are multiple avenues for reaching out to lived experience advisors, especially with cancer survivors, as there are so many cancer institutions and cancer support groups of survivors. I went through Cancer Voices, which is an independent organisation that can connect researchers with volunteer cancer survivors to act as consumer representatives on projects.

I engaged with my consumer representative early on in the study to gain their insights into the study design and processes, but I believe I would have benefitted if I regularly consulted with them, especially when COVID hit and I had to change some of my recruitment processes. It would have also been really beneficial to have more than one consumer representative to brainstorm on ways to increase engagement and recruitment numbers. While I was only able to find two consumer representatives through Cancer Voices (one of which did not respond to me), I could have tried other websites, groups, or organisations.

Last thoughts

Overall, I learnt many things over the course of the research study. While the findings of my research study are important, I believe that it's just as important learning the best ways to actually conduct the research while keeping your participants' best interests in mind.

If you are interested in reading the papers from my PhD, you can find them here:

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