Three core themes, representing new insights for designing and conducting qualitative research with cancer caregivers, were developed and are presented below.

Theme 1: we and our—cancer caregivers’ health and wellbeing was inherently linked to the survivors’ health and wellbeing

To contextualize the interview questions, each interview started with the following preface, which outlined the key purpose of the study and the focus on caregivers’ experiences: “We are looking at ways we can support the health and wellbeing of people who are living in rural areas and supporting someone with cancer.” Interview questions were designed to engage caregivers in discussions about their needs and experiences seeking support for themselves, and caregivers were explicitly queried about changes to their own health behaviors since caring for a loved one with cancer. Throughout the interviews, however, caregivers frequently responded to questions about their experiences with information about the survivor. In many instances, the interviewer had to clarify the focus of the original question. For example:

Interview 15

Interviewer (I): “Have your sleep habits changed since the diagnosis?”

Caregiver (C): “Yeah, because my wife finds it very difficult to sleep in the bed, so she basically sleeps in a comfortable, nice lounge chair…”

I: “And what about your sleep? Have you noticed any changes?”

C: “Well, I did at one point, but I don’t think it’s because of taking care of her. I think it was because of my own mental health problems.”

Interview 18

I: “Did your diet change after the diagnosis happened?”

C: “Oh, when my husband first started treatment, he didn’t feel like eating – because you know, when they go through radiation and all that.”

I: “Yeah, and how was your diet? Did you notice any changes?”

C: “Oh, when you’re away from home, you always eat different. Yeah, we ate differently.”

In some instances, caregivers described changes in their health behaviors as something experienced collectively by themselves and their loved one, using language such as “we” and “our.” This was especially common among caregivers supporting their intimate partners.

Interview 19

I: “Did you notice any changes to how active you were with the extra caring work?”

C: “Yeah, I probably – we weren’t doing the normal amount that we would, like going to the shops, or going to the hardware store on Sundays. We did a few projects and things that kept my wife’s interest while she was at home.”

Interview 20

I: “[Did you notice any changes in] your alcohol consumption?”

C: “Our consumption didn’t really increase during my wife’s treatment.”

Initially, we assumed this phenomenon was a misunderstanding of our research aims. However, even when caregivers were explicitly reminded of the study’s focus (i.e., their own health and wellbeing), they continued to discuss the survivor and their shared experiences:

Interview 13

I: “The next few questions are just about your own health and wellbeing… What about physical activity? Are you as active, or more active [than you were]?”

C: “We’re not more active. A lot less active than what we were… My wife doesn’t like the idea of being on a bike and feeling the seat, so we don’t do that much.”

Reflecting on our professional backgrounds as health researchers, we acknowledge that at times we can view health behaviors and support seeking through an individualistic lens. However, this theme highlighted that caregivers’ health and wellbeing may be closely intertwined with that of the survivor, hence caregivers’ recollections of shared experiences and changes. Similarly, caregivers also described using coping strategies that dually impacted themselves and the survivor, such as refraining from sharing their concerns or emotions with the survivor to prevent causing them distress.

Interview 1

C: “Your whole life is turned upside down... The biggest challenge is to try and appear that you’re not in any way affected, ‘cause that would cause stress to the person you’re caring for.”

Minimization of caregivers’ own needs and experiences was furthered by comparing their situation to the cancer survivor.

Interview 3

C: “I just kept thinking, oh, I’m doing fine, no problem… but after [supporting my sister in hospital] for ten days yesterday, I felt guilty. I thought, yes, it is affecting me. I’m by myself. But you know, my experience is nothing in comparison to what my sister has been through.”

Interview 11

C: “A lot of people ask me, what about you? Yeah, I’m fine. It just takes it out of you, but overall, I’m a lot better off than my wife. She would do it for me, so why can’t I do it back? If you really love someone, you make sure they’re as comfortable as they can be.”

Some caregivers appeared to gather strength from, and even reported feeling “supported by,” their loved one’s resilience in coping with cancer.

Interview 6

I: “Do you have any final comments or thoughts about looking after your own health and wellbeing while supporting your partner?”

C: “… I’ve been amazed at my partner’s inner strength. She’s not the type of person to lay in bed all day feeling sorry for herself. When she’s having chemo, the first few days knock her about a bit… but after those days wore off and she started to improve, she’s up and about.”

These findings highlight the interrelationship between caregivers’ and survivors’ health and wellbeing and the role that their relationship dynamics can play in coping with cancer, including changes in caregivers’ health behaviors and support seeking. Therefore, explicitly asking caregivers about the impact of their loved ones’ needs, preferences, and behaviors on their own health behaviors and ability to seek health and wellbeing support may provide further insights into caregivers’ experiences.

Theme 2: question wording and design can perpetuate the “patient focus” that cancer caregivers experience in other settings

Theme 1 explored how caregivers discussing the survivors’ experiences when asked about their own may demonstrate an interrelationship between caregivers’ and survivors’ health and wellbeing. However, knowing that data are co-produced in qualitative research interviews [18, 19], we also reflected on the choices we made, as researchers, in designing and conducting the interviews to provide additional insights into this phenomenon.

Although the aim of the interviews was to center the experiences of caregivers, the very first question we asked was, “Could you tell me a little bit about the person you’re supporting?”. This question was intended to enable description of the study sample and contextualize caregivers’ experiences. However, in reflecting on the implicit power that researchers can hold as “professionals” or “knowers” [20], it is possible that prefacing the interviews with this question may have perpetuated the same “patient focus” that caregivers report experiencing in other professional and social settings. Indeed, this experience was highlighted by caregivers in our interviews, who felt their needs were, at times, not acknowledged or valued by the patient’s healthcare professionals or their acquaintances, as the caregiver was not the one diagnosed with cancer [8].

We do not have any reason to believe that the design of our interview caused harm or distress for any interview participants, as many were highly engaged during the interview and appreciated the opportunity to share their personal experiences (see Theme 3). Rather, we hypothesize that opening the interview with a question about the patient, rather than the caregiver, implied that the survivor’s experiences were a key focus of the research. Although we were not able to test this hypothesis, this finding highlights the importance of practicing reflexivity. Reflecting on our assumptions, biases, and decisions as researchers provided insights into how we could further center the voices of caregivers in our interviews. For example, interviews could begin by asking caregivers to describe a typical day for them in the past month. Additionally, questions about the patient’s diagnosis and treatment status could be addressed at the end of the interview (if not already answered), to maintain focus on the caregiver.

Theme 3: participating in qualitative research can be a meaningful experience for caregivers and provide an avenue to connect them with community-based support

The final theme illustrates the apparent meaning that caregivers derived from participating in qualitative interviews. While conducting the interviews, we were mindful of participant burden, a key principle of ethical human research [21]. Accordingly, we aimed to complete the interviews within 20 min to minimize participant burden. However, we found that caregivers were highly engaged and shared openly about their experiences, with interviews averaging 30 min in length, and some extending beyond 40 min. Our initial concern that a long, in-depth interview may be burdensome to caregivers was not reflected by participants. At the end of the interview, many caregivers expressed appreciation for the opportunity to take part and for the research team’s interest in understanding their experiences and needs:

Interview 3

I: “Is there anything else you wanted to mention? That’s all the questions we had.”

C: “No, I think that’s fine. Thank you for suggesting the phone number for counselling… Look, I’ll let you go. Thank you very much for your interest and for this project, and what you’re doing.”

Interview 5

I: “Thank you so much for all the valuable insights you’ve shared today. That’s been really helpful. Did you have anything else to say?”

C: “… I guess, just, thank you… I appreciate the opportunity as well, so thank you.”

Given that caregivers’ expressions of appreciation typically occurred upon interview close, adherence to social norms of providing thanks at the end of an interaction may account for at least some of this phenomenon. However, it is notable that caregivers typically expressed their thanks in response to the interviewer providing them with a final opportunity to share further details about their experience maintaining their health and wellbeing and seeking support that they had not yet had the chance to share in the interview. As such, it appears that some caregivers genuinely perceived the interviews as a positive and rewarding experience. Another caregiver even described participating in the research interview as a supportive experience while navigating their loved one’s cancer diagnosis.

Interview 15

I: “Has there been any particular support services or people that have been really helpful in this time?”

C: “…. The research you’re doing has been helpful in the sense that it’s kept us aware and increased our awareness of the difficulties of cancer.”

Cancer caregivers may therefore derive support and meaning from qualitative research participation beyond what is typically appreciated by researchers. Prior research indicates that caregivers can experience several barriers to accessing support for their own health and wellbeing, including limited knowledge of available services and reduced capacity to navigate support services alone [8]. While the support provided by researchers during interviews cannot replace the support provided in a clinical, therapeutic context, research interviews can present an opportunity to provide catharsis and connection for caregivers through the opportunity to share personal experiences with an attentive listener (i.e., the researcher). Similarly, the interviews were also an opportunity to provide caregivers with information about professional community-based support, particularly when they expressed a need for support beyond the researcher’s scope of practice. As shown below, caregivers often indicated that they were unaware of the support services offered and were grateful for the recommendation.

Interview 15

C: “I truly believe that if a support service could provide access to a psychologist for the person that is taking care of the patient, that would be very useful.”

I: “… If you did want to reach out, [community cancer support service] has a phone line, and you can access psychology and counselling through them.”

C: “I’m going to write that down.”

In summary, research interviews can be a supportive environment for caregivers to share their personal experiences and to receive information about professional community-based supports where appropriate—both of which are within researchers’ scope of practice to provide.