Introduction

Advances in early detection and improved treatment modalities mean that more people are living long after their cancer diagnosis. As of January 2016, there were more than 15.5 million people in the USA living with a cancer history [1]. In spite of advancements in therapies, both cancer and its treatment frequently have lasting negative health impacts [1] for the patient as well as for those who care for them [2].

Serious illness (such as cancer) can be conceptualized as a family matter given the interconnectedness of patients and family members [3]. Most cancer treatment is now provided as outpatient care [4], resulting in a considerable need for informal caregiving via one’s familial and social network [5]. An estimated three million Americans act as caregivers [6]. Patients and informal caregivers are often conceptualized as a “unit of care,” such that consideration of the needs of both is important for the provision of appropriate and effective health services [7].

Health care professionals have been found to underestimate both the level of cancer survivors’ unmet needs and available support (through informal caregivers) [5]. The stresses associated with cancer treatment are particularly intense and burdensome at specific times, such as at diagnosis, during treatment and at the transition out of treatment [3, 8]. There is considerable need for research as to potential interventions to alleviate the detrimental impacts of cancer caretaking [2].

The period of transition out of acute cancer treatment has been identified as a time where patient needs have not been adequately addressed [9], and there has been even less consideration of caregiver tasks and needs as treatment transitions to life thereafter. The National Academy of Medicine (formerly the Institute of Medicine) recommends that all cancer patients receive a survivorship care plan to help alleviate challenges faced when transitioning from acute treatment to long-term survivorship. The survivorship care planning process should consider the needs of not only the survivor, but also caregivers and their information needs [2]. To explore this issue, we conducted focus groups with cancer survivors and caregivers with an emphasis on needs and expectations around diagnosis, during treatment, and through the transition into survivorship. In this paper, we specifically address emergent content related to the caregiver experience and role.

Methods

We held six focus groups in preparation for a randomized controlled trial (RCT) of survivorship care planning to be conducted in both a large, urban research university (Hospital 1) and a small, rural community hospital (Hospital 2). These sites were selected to facilitate considerations of possible system differences related to survivorship care planning in the RCT, and survivor and caregiver stakeholders affiliated with each site were recruited for the formative research. As the RCT compares different approaches for survivorship care planning at the completion of acute treatment, the objective of this study was to explore the needs and expectations of cancer survivors and caregivers that had emerged during diagnosis and treatment and were relevant to this period of transition. Findings from the focus groups informed intervention materials and processes.

Between February and April 2016, we conducted four focus groups with cancer survivors who had completed acute treatment for breast, prostate, and colorectal cancer, and two with caregivers. These cancers were selected because they represent major cancer sites in terms of prevalence and long-term survivorship. Focus groups are an appropriate method to generate insights about complex issues such as cancer treatment and the transition to survivorship from people’s lived perspectives [10].

In order to recruit survivor and caregiver participants, clinic staff were provided with study flyers to post in clinics and share with patients and their caregivers before and after clinic visits. Interested possible participants who contacted the research team were screened for eligibility and provided focus group time and location information. We planned and held four focus groups for participants associated with the urban, academic center, and two focus groups with participants from the rural, community hospital. At the academic hospital, where there are disease-specific clinics, we held separate groups with breast, prostate, and colorectal cancer survivors and another group with caregivers. At the community hospital, where there is a single, general oncology clinic, we held one focus group with survivors who had a history of one of the three cancers of interest and a separate group with caregivers.

Each focus group was moderated by the study PI (KS) and an additional co-investigator (ET or JB). The study PI is trained in qualitative methods and focus group moderation. A semi-structured focus group guide included the following areas: (1) emotions around cancer, (2) informational needs, (3) transitional needs outside of cancer experiences, (4) timing of survivorship activities, and (5) other needs and expectations. In this analysis, our focus is limited to the discussion content related to experiences and perspectives related to caregivers and caretaking. Each discussion was recorded, transcribed, and analyzed thematically using Atlas.ti. The Johns Hopkins Bloomberg School of Public Health Institutional Review Board approved this study and all participants provided written informed consent.

Eligibility criteria for survivor participants included: age 21 years or older; diagnosed with breast, prostate or colorectal cancer; completed treatment; no evidence of disease; and cancer care managed at one of the two participating cancer centers. Caregivers were eligible if they were 21 years or older and provided significant care and/or support to a friend or family member who was diagnosed with breast, prostate or colorectal cancer. Caregivers were primarily recruited through survivor participants via snowball sampling, although there were a few caregivers who were notified about the group from another participant. Such individuals were therefore not associated with any of our survivor participants, but we did not note who such individuals were in transcribing the caregiver focus groups. The focus groups took place in conference rooms located at both institutions and participants were compensated for their time.

This analysis focuses on the needs and expectations of caregivers during treatment and the transition to survivorship based on the discussions in the focus groups with both caregivers and survivors. The coding framework was initially structured with the purpose of refining plans for the RCT. The codebook consisted of 11 topics mapping to aspects of treatment and survivorship transition (e.g., diagnosis, undergoing treatment, resources, and information in follow-up); topical coding was implemented by ET and an additional coder. All focus group coding was then additionally reviewed by KS and JB. Analytic discussion revealed the needs and unique perspectives of caregivers as important; this was an emergent focus that was not specifically highlighted in the focus group guide. Once all transcripts had been initially coded topically, additional review was then undertaken with the coded data by KS and ET in order to consolidate content around cancer caregiving. This was done in parallel with a consideration of the existing literature in this area by KS. Through a process of constant comparison, the team identified major emergent issues regarding caregiver roles and experiences; we also sought to consider commonalities between group discussions (including between caregivers and survivors regarding the same topic), as well as areas of apparent differences. We present our consideration of these issues in the findings section that follows.

During the analytic process, the research team presented our analysis and emergent themes to the patient and caregiver members of the study’s Stakeholder Advisory Board (SAB). As this research is stakeholder-informed, our SAB formed before the project was funded and continues to provide input into the trial that is following the formative work presented here. Regarding this study, SAB members did not participate in the focus groups but did provide stakeholder perspective and feedback on the findings, which strengthens the results, given the emergent nature of this analytic focus on the group discussions.

Findings

A total of 47 people participated in the groups: 28 survivors and 19 caregivers (Table 1). The key themes that emerged in relation to caregiving were acts in support of the patient in the clinic, to support the patient in the home, and to care for oneself. As described below, in some cases these themes emerged from discussions among both survivors and caregivers, and in other cases, only in one or the other. The survivor and caregiver members of the SAB reported that the issues raised in the focus groups were comprehensible and salient to them based on their experiences.

Table 1 Participant demographics
Full size table

Supporting the patient in the clinic

A key area of discussion in the caregiver focus groups was the important role that caregivers play in the clinical setting. Both survivors and caregivers described a need for assistance in navigating the clinical setting. According to participants, caregivers must be able to address the following needs in order to provide optimal support in the clinic: (1) be physically present in the clinic, (2) communicate with providers, (3) obtain and process information, and (4) assist in decision-making.

Be physically present in the clinic

The role of the caregiver during treatment was sometimes described as one of simply being someone who accompanies the patient. Being present for treatment, or being involved in a broad sense, was described as a role (and work) in and unto itself. In hindsight, (ie. in the focus group) one survivor noted the importance of caregiver involvement in treatment, even if the person undergoing treatment is not aware of this at the time.

My mom, of course, had the colorectal cancer and she has a permanent ostomy. I went to every chemo session and I stayed for the surgery and stayed by her side. Life is short. (Hospital 2 Caregiver #9)

So, I think that the caretaker needs to understand that as the process goes on, that they need to be involved even if the patient seems like they can handle it all. (Hospital 2 Survivor #1, Breast)

Communicate with providers

The role of the caregiver in treatment was not always limited to physical presence and bearing witness. Rather, many caregivers described playing an active role in the clinical setting, specifically communicating with providers throughout the treatment process. Caregiver participants described times in which they felt that they served as proxies for the patient’s needs and wishes and articulated this as being particularly important at stressful points in the treatment process, when the patient was often not as capable of taking in information and communicating their needs to providers. In the following two quotes, the challenges of communication and decision making during the early period are highlighted.

So, a lot of the things that I had to do was to try and be there as a sounding board for her because she was a basket case initially. (Hospital 2 Caregiver #4)

It was the first doctor’s appointment with the oncologist and they just like … dive in and I’m trying to take notes and I was just like I have no idea what you’re saying. And then … I had no idea … like cancer was even as complex as it was, I guess. I could hear a lot of things in the media about cancer and you know that there are stages and … other things, but there’s all these other complexities. (Hospital 1 Caregiver #2)

In addition to communicating with providers either instead of or alongside the patient, caregivers discussed the value of having an opportunity for private communication between the clinician and the caregiver. For instance, one caregiver described a desire for an opportunity to discuss issues with someone in the medical team without the patient being present. This was seen as important because there were questions that the care partner wanted to ask, and topics that they felt should be discussed, that they felt were being neglected because such discussions were not easy to have in front of the patient.

So there would be times when I’d be in the office with my husband with the oncologist and I felt like the oncologist was even afraid to say certain things because I was there or maybe he wanted to talk to me, but he was there and … I feel like if there was some mechanism that the spouse was taken and talked with a nurse or a navigator, or a social worker. Because there were things that I wanted to talk to him about, but I just couldn’t. (Hospital 1 Caregiver #3)

Obtain and process written information

In order to effectively function in support of the patient throughout treatment, caregivers described wanting to have additional informational materials that were provided in clinical settings, but that could then be further considered and deliberated outside of the clinical consultation. Caregivers indicated potential struggles with the nature and amount of necessary information to be processed at diagnosis and during treatment; they presented themselves as centrally involved in the consolidation and digestion of information, even if the final decision is ultimately the patient’s to make. Caregivers described needing to be informed not only for the patient they were supporting, but also for themselves.

Maybe if I could’ve had a packet about like … okay. She has triple negative breast cancer. That’s what this means. This is the process. These are the drugs that she’s taking. These are the side effects. This is what could happen. Then I would have an understanding of just generally where she is. (Hospital 1 Caregiver #2)

I think it would’ve been better if the doctors had brochures or at least printed something as far as options for you to physically see. You know, luckily, I'm tech savvy in researching and I know what to look for, but you know, no offense … our generation. It’s just different. (Hospital 2 Caregiver #9)

Assist in decision-making

The role of caregivers in critical treatment decisions was also referenced by a few survivors. In the following quote, a survivor clearly articulates an active role for his daughter in making decisions about the place for treatment. He described this as being consistent with the type of work that she does for her job, and he seemed pleased that she was willing and able to take control in this way.

I’ve got a child that’s down in DC … She comes to town and she goes to an appointment with me and she asked this doctor. She says, how many removals did you do the year before last? He said 13. She said how many did you do last year? He said 6. She said do you robotic? He said no, we don’t have nobody to do that yet. And she asked him about other things. She grilled that guy, you know…because that’s what she does. She works in management and she managed him. And he said, I see where this is going. And she said, yeah, this is where this is going. She says, get my dad’s records together. This is the lady that you send them to down at [Institution Name Blinded] and we thank you. It’s just that simple and that’s what he did. She had already had it set up with [Institution Name Blinded] down here. (Hospital 1 Survivor #14, Prostate)

Caregivers described how having adequate and comprehensible information empowered them to ask providers the best questions and assist in making the most informed treatment decisions. This led to the caregiver being able to advocate on behalf of the patient.

I started doing some research myself on the internet and I was looking at these studies about the brachial seed implants and I called Dr. X’s_ office and asked if we could look at that as an alternative. So, he said well, you have to be in just the right size range in order to qualify for this. So I said, well, we would like to see if he would fit into that category. (Hospital 2 Caregiver #2)

Caregivers also discussed how challenging it was to strike a balance between assisting in decision-making and allowing survivors to make their own decisions. Caregivers described the provision of information as part of wanting to offer the best advice possible without compromising the autonomy of the patient.

With my mom, she had a choice. She could go with the ostomy and her chances of cancer reoccurring would be a lot slimmer than if she was to have it reversed, with her stage and everything of how far ... by the time, like I said, the doctors kind of drew her along. But you know, she discussed it with me and dad, and we did a lot of research on the internet, and got second opinions, you know, the pros and cons of this surgery. You know, it was ultimately up to mom what she wanted to do. It was her body. (Hospital 2 Caregiver #9)

Support for the patient at home

In addition to the clinical setting, the role of the caregiver was described as requiring effective supportive skills at home. This includes helping patients deal with their cancer diagnosis and treatment and its implications in a variety of ways. Among discussions, the following needs emerged regarding caregivers effectively supporting the patient at home: (1) provide medical care at home, (2) communicate and provide emotional support, and (3) assist with unfamiliar or new tasks.

Provide medical care at home

The caregiver discussions highlighted ways in which considerable medical/treatment work now falls upon informal caregivers, often with little or no accompanying medical training. Caregivers’ accounts included extensive evidence of psychological distress and physical harm related to such tasks and suggested little perceived ability to manage such work. Notably, the substantial actual care work involved for caregivers was articulated in the caregiver focus groups but not in the survivor groups.

He was really sick. I had to sit down and go through it and map out a way to implement what they asked me to do at home. No one else could help me do it. I had to figure that out. I had to do it. I had a little chart that went from 5:30 in the morning to one in the morning. Every hour of the day had something that had to be done in it and I had like a little window in the afternoon, I could sleep. And I got about two or three hours of sleep after his three o’clock medication. And this went on for months. It was crazy. (Hospital 1 Caregiver #5)

The relationship between the patient and the caregiver sometimes presented challenges to managing such work, as the caregiver was not always accustomed to providing care for the patient in this way. This was especially evident when the caregiver was the child of the patient. In the following quote, a daughter caregiver describes the stress involved in caring on the basis that it was for her mother, and also her inability to share this stress with her mother.

She had a double mastectomy. And they’re like … and they’re showing you how to take care of them. She had drains … and they showed me how to do the drains and there was a lot of stress and fear and I’m like sitting there and I’m like am I going to like pull the drain out? And there’s just like a lot of stress with that kind of care stuff. And if you have someone like my mom … she’s very strong, but she doesn’t want to like look at any of it. I couldn’t explain any of it to her. So, it’s just one of those things where I’m experiencing stress, but I can’t convey it. So, it’s like you have to be so strong. But I felt like I had no idea what I was doing. (Hospital 1 Caregiver #2)

Communicate and provide emotional support

Caregivers presented having an easier time with practical tasks than with communicating with the patient and in offering effective reassurance. Caregivers also discussed difficulties about knowing what to say and the importance of listening.

I could physically help her. I could get her food. I could move things, but I couldn’t get in her mind and tell her that everything is going to be okay. I think that’s the biggest thing. (Hospital 1 Caregiver #1)

Communicating with him. Just listening mostly, not telling him what he needs to do. Letting him decide that. Because like you said, it’s ultimately their decision. You know, you can lay out the information for them. He did a lot of the research himself, so it’s a matter of what do you think? And I would give him my opinion. So, I think listening was the biggest thing. Listening to what he had to say and how he felt about it. Because I would have gone a different way, you know, but I never told him that. Because I wanted him to make that decision. (Hospital 2 Caregiver #1)

Caregivers described an important part of their role as providing emotional support that is in line with the specific needs of the survivor. Similar to what was heard during discussions on providing clinical support, the relationship and typical roles between the caregiver and patient may have led to challenges.

Yeah, being there for your spouse probably is one of the most important things. But my wife has been fairly independent all of her life and when she was diagnosed and she started receiving the chemo, she kept insisting, well, you don’t have to come with me. I can drive. We were both retired so I knew that she was looking out for me and of course, I wanted to look out for her, so I attended all of her chemo sessions and she started … when she started getting her radiation, she was further along mentally and physically and she did that on her own, but she told me afterwards how much it meant to her to have someone there to talk with. (Hospital 2 Caregiver #4)

There was also some discussion in the survivor focus groups about the role that caregivers played in getting them into care and keeping them in care when the process became difficult/frightening. In particular, men with a prostate cancer history discussed the role that female caregivers played in the provision of psychosocial support.

My wife was with me every step of the way. She emptied out her closet. We were here for eight weeks. She wore a different outfit regardless of what it looked like every day because she wanted to look sharp for the people that were over here because we were seeing the same people on a regular basis. (Hospital 1 Survivor #13, Prostate)

Assist with unfamiliar or new tasks

In addition to emotional support, one caregiver described their desire to remove the burden of the management of the financial aspects of cancer care from the patient and to take care of managing dietary issues. The description of these burdens seemed to resonate with other group participants, highlighting how caregivers must learn a variety of new and important tasks in a short period of time.

One of the things that I had to do was to take care of the legal aspect of things. The health insurance. Which was a roller coaster ride. And the dietary part of it. Which I felt was very important. (Hospital 2 Caregiver #8)

Care for oneself

Discussions among caregivers highlighted the need for acknowledgement of forms of self-care in addition to caring for the patient throughout and beyond the treatment process. Numerous caregivers described how this process depended on how well they were able to address the following needs: (1) adjust to “a new normal,” (2) check in with providers regarding patient and caregiver needs, (3) anticipate relationship changes with the patient, (4) address emotional and physical needs, and (5) anticipate that the patient and caregiver may disagree on needs and how to address them.

Adjust to a “new normal”

The concept of a “new normal” was one that was raised in each focus group—both among survivors and caregivers. In the survivor focus groups, discussion of the “new normal” was squarely around the change for the survivors themselves. How had their life changed in irreparable ways? How did they see the world differently? How had notions of the future shifted? Survivors tended not to reference their caregivers or family members in their discussions of such changes. Somewhat in contrast, discussions in the caregiver focus groups revealed a strong sense that the “new normal” went beyond the person with the cancer diagnosis to include caregiving family members. The new normal was described as starting with diagnosis and treatment decisions, where life is quickly changing for caregivers at the same time that they are faced with difficult and important new tasks. It is also important to note that role adjustment extends into the period beyond active treatment.

I call it through the looking glass. It’s like where did my normal go? So fast. It’s like being dropped out of your world and into a strange world that you don’t even know what you’re talking about and you have to get on board really fast. It felt like it was really up to us to … you have to. It’s your responsibility to get as much information as you can. (Hospital 1 Caregiver #5)

The transition thing is hard … some members of my family have struggled … our lives are different. I think that’s part of the transitioning to it being over. I think a lot of people envision it as all right, we did it, it’s over. But like, life is different now. It’s not just over. My mom’s a different person. We’re different people and no one kind of tells you that. (Hospital 1 Caregiver #2)

Caregivers’ description of the “new normal” for them (as well as the patient) also provided insight into the emotional toll that the cancer experience had the potential to take for those around the person with a cancer history. The following extract bridges the experience of overwhelming change in expectations with role burden and emotional impact in such a way as to make the toll of cancer on the caregiver quite easy to conceptualize.

In our family, my wife and I have always been very independent … she still has the independence. She’s still trying to hold it. She realizes where her limits are now. I’m the one that’s having trouble with all this. That’s why I said just … I’ll always be strong for her and try to manage everything and take control of everything. I didn’t realize how it was going to affect me afterwards. You know what I’m trying to say? … They say it’s normal, but I don't know. I’m just … it’s hard to me, and I know this is going to sound contradictory, but I’ve always been one, I keep a lot of thoughts and opinions to myself up until all this happened. Then, it’s hard to find somebody that I can feel comfortable with and talk to. Here, this group here, we’re all here. Everybody can relate to it the same. (Hospital 2 Caregiver #5)

Check in with providers regarding patient and caregiver needs

Caregivers described needing to re-evaluate their own life, goals, and sense of the future due to cancer. In the following quote, a caregiver in his 30s describes “our [not her] situation” and how his wife’s breast cancer diagnosis and the resulting treatment impacted their plans for starting a family. He described this as an area for potential improvement for the health care system and expressed a need for check-ins with both survivor and caregiver.

But I think that knowing who the patient is and the amazing treatment we got here … everybody specialized in something and I just felt that small gap may be the mental help, but also the follow-up goals. Especially if it’s something in our situation, in particular to … hey in 18 months, we’ll see how tamoxifen was and analyze that. Well, now children are very important and I can only imagine my wife’s mental health in 18 months if that’s not the timeframe. And you know, we’d deal with it if we come to that crossroad. Someone that talked about the goals. Someone that calls you maybe once every two months or follows up with you from your treatment just to say … you know are we still on track for December? We’re going to get together with the oncologist and the oncologist worked great with the doctor for the pregnancy and everything. They talk. Maybe just a checkup to give that relaxation to the patient and also the caregiver. (Hospital 1 Caregiver #1)

Anticipate relationship changes with the patient

One of the ways that caregivers described “normal” as having shifted is in the relationship between the patient and the caregiver; focus group discussions revealed that these changes may be positive or negative. Caregivers tentatively described somewhat difficult changes in the patient’s emotional outlook towards themselves and others. They also described some difficulties because they did not feel that there was anybody with whom they could share challenging experiences and feelings that these changes generated.

So after she had the surgeries, the scars, and she got to the point … she didn’t think I found her attractive anymore. And so I tried to explain to her that my feelings have not changed and she kept insisting, saying-“I know … I know that you don’t feel the same about me. Why don’t you admit it?” Finally, she did come around, but it took her a while. And it was very hard for me to hear that from my wife. We’ve been married now for 48 years. We always got along well and all of the sudden your spouse tells you that you don’t care for them anymore, it’s a little bit hurtful. You know you try to deal with it the best you can, but regardless, it’s hurtful. (Hospital 2 Caregiver #4)

And I think it’s important to be tolerant because the person that’s undergoing treatment is in a rare state of mind and you have to be comforting to that person. Oftentimes, you’re the closest person there and if that person lashes out at someone, it’s going to be you. You’re going to have to learn how to take it. It may not be easy, but you have to take it because you’re the closest one there. I used to get it a lot and now she thanks me for it. But I went through a little abuse. (Hospital 2 Caregiver #4)

In some instances, however, caregivers were able to point to ways in which changes due to the experience of cancer were positive in terms of their relationship with the patient.

My husband and I say that this process made us just like … it just refined our souls and opened us up to life in a way that we never would have ever dreamed as a couple. We went through things together. A friend of mine said you are going to have an intimacy that will be so different than any couple could imagine. (Hospital 1 Caregiver #5)

Address emotional and physical needs

Caregivers articulated the negative impacts of cancer for themselves both physically and psychologically and described a tension around being able to convey (and even to recognize) their own needs during a time when the focus was (perhaps necessarily and appropriately) on the needs of the person with cancer. The necessity to hide one’s emotions during this time for the good of the patient was seen in and of itself as a burden.

He never skipped a beat. I think I was more a basket case than what he was. You know, I was worried about him. (Hospital 2 Caregiver #1)

I was shocked. I was very fearful because of the type of cancer that she had. And I was terrified. You know, we always thought that we would be together forever. You know? And then it dawned on me that I could lose my wife. And at the same time, inside, it was bothering me quite a bit and I had to keep … a brave appearance for her and I had to give her these pep talks and so forth and give her reasons to hope and that things would be all right and she wanted me to assure her, which I couldn’t do, really. But I had to. (Hospital 2 Caregiver #4)

Cancer’s impact on caregivers was not a topic that emerged without prompting in the survivor groups. However, when it was raised by participants in the caregiver groups, it generated widespread expressions of support and discussions of the impact of cancer on the caregiver and the need to take care of one’s self.

Caregiver 1: “Take care of yourself. You know, find a hobby … not that you don’t want to take care of your loved one. Not that you resent taking care of your loved one, but you get tired.”

Moderator: “It’s emotionally draining.”

Caregiver 1: “It’s hard to see your loved one suffer. You know, that’s my mom.”

Caregiver 5: “Right.”

Caregiver 9: “And trying to keep them up and happy. It’s exhausting. It is.” (Exchange between Hospital 2 Caregivers #’s 1, 5, and 9)

Caregiver 2: “Towards the end of my mom’s treatment, I was like wow. I don’t think I’ve really been the person that I wanted to be during this whole thing and I don’t … I’m not in a good place. And like I should go to therapy. That wasn’t until the end … and no one told me that. No one asked me how I was doing really. And that’s not wrong, and everybody’s always like how’s your mom? And of course I care mostly about my mom, but at the end, all of the sudden, I was like wow. I’m not doing okay.”

Caregiver 7: “Anytime anyone does ask about me I’m like … ecstatic because you realize I’m actually going through something, too.”

Caregiver 2: “You’re like, Oh my God. Wait. Me?”

Caregiver 7: “You actually care.” (Exchange between Hospital 2 Caregivers #‘s 2 and 7)

Anticipate that the survivor and caregiver may disagree on needs and how to address them

One of the perspectives about caregivers that was highlighted by the survivors was the idea that there were times and ways in which caregivers had not been completely successful in their caregiving role, as seen from the survivor’s perspective. Survivors described (sometimes hesitantly) ways in which their caregivers and family members did not realize what they needed or how to support them. For example, one survivor described ways in which a caregiver sought (and was able) to avoid some of the more difficult aspects of treatment and living with a cancer diagnosis.

I was taking myself to my chemos [sic] because it was easier. Because it upset my husband so much. It upset him to see the other people. He got real panicky. (Hospital 2 Survivor #1, Breast)

This description can be viewed as a survivor’s perception of a caregiver’s fear as expressed in the previous section. It perhaps suggests that part of being an effective caregiver is being able to mask one’s own negative emotions related to the cancer experience (as expressed by the caregivers), which then may have negative repercussions for the caregiver. Similarly, the following description provides the survivor’s perspective on the potential for a communication disconnect to emerge (or widen) during the challenging period of treatment.

And my husband just looked at me and said, ‘I don’t think you understand what you’re getting ready to go through’, and I looked at him and I said, ‘Honey, I know exactly what I’m up against and this is how I’m dealing with it’. (Hospital 1 Survivor #5, Breast)

And then moving forward, I didn’t always want to bring my husband to everything. He’d been with me to all these visits and now it felt like he shouldn’t take time off of work to come to these visits, but how do you get empowered that it’s okay to be alone now because you’ve been in this team all along and the army always came with you, and now I felt like I could do it alone. (Hospital 1 Survivor #17, Colorectal)

Caregivers also articulated ways in which their attitudes and behaviors were sometimes problematic for the patient. One such scenario was related to the tendency to monitor behaviors with a goal of protecting the patient, but with a possible result of making life more difficult, and making it difficult for the patient to not always be mired in the cancer experience.

I think at the end of the day as a caregiver, the best thing I can do to cope with everything that’s going on is to try to find out what really is surviving to my wife and … she just wants to be normal again. She wants to go out and not be judged and she sees somebody that know she had it and she has a glass of wine … like is she supposed to? I think myself as a caregiver, what I can do for her is just make her feel as normal as possible and I think sometimes, maybe I even judge her and I think hey, you supposed to have cheese? It’s like really, do I need to say that? (Hospital 1 Caregiver #1)

Conclusions

As outlined in the introductory section, the increasingly successful models for cancer treatment are primarily delivered in an outpatient context. This structure is reliant on the provision of both social support and considerable informal care delivery by caregivers from within the patient’s close social or familial network. In our analysis, we sought to include perspectives from both caregivers for and survivors of breast, prostate, and colorectal cancers from two contrasting health systems to understand the work of caregivers that contributes to the health burden that they face, the needs that arose during treatment, as well as those that emerge at transition. We present the perspectives of both caregivers and survivors to inform possible interventions to promote the health and quality of life of caregivers, and in turn, those for whom they are caregivers.

Discussions among caregivers offered numerous, fruitful exchanges regarding aspects of caregiving that created difficulties, either for the caregiver themselves, or that led to interactional difficulties with the cancer survivor. These are needs that may warrant explicit attention during the transition period, as the burden of acute treatment becomes less intense and both survivor and caregiver are adjusting to a new normal that is no longer centered around getting through treatment.

From the discussions, we conclude that there would be value in giving explicit consideration to the role that caregivers play, during diagnosis and treatment as well as their potential role moving forward into survivorship. Discussions indicated that the transition and survivorship processes begin as early as diagnosis, rather than at the end of treatment, as needs continue to emerge throughout the entire process. Caregivers described having often acted as extensions of the patient at diagnosis and during treatment and described how their own needs and expectations included how well the needs and expectations of the patient they were caring for were met. Caregiver accounts also gave a sense that the need for them to simply be present at visits and accompany the patient in the process of diagnosis and treatment might not be recognized by the patient. The work of general accompaniment in the treatment process was not without costs for the caregiver, both emotionally and in terms of time and energy spent. Our discussions suggest that the toll of caregiving is often not recognized by caregivers, by the person with cancer, the medical team, or their broader social network. On the other hand, from survivors’ accounts, we also saw potential confusion over the value of such work because there were instances in which caregivers were presented as falling short in meeting the survivor’s needs in relation to being present during treatment.

Communication also emerged as a prominent theme in the discussions. Caregivers articulated various points in which accurate and clear information was not available to them and described needing assistance navigating complex systems and processes within and outside the clinical environment. These needs are likely to be mirrored during the transition out of acute care; to the extent that survivors still feel “lost in transition,” caregivers are likely to feel similarly. Caregivers saw themselves as a hub between the patient and the clinical world and expressed often feeling uncertain as to how to communicate and provide emotional support for the patients for whom they were caring. They commented on the role that caregivers play in providing informational and support needs during treatment, but did not focus on any potential challenges or difficulties raised for caregivers due to the cancer experience. The focus group discussions among survivors also pointed to aspects of caregiving that they had found to be suboptimal, including some instances of the emotional responses of caregivers to the treatment experience. Prior research has identified a need to address communication difficulties between caregivers and patients, as well as caregiver coping skills and feelings about cancer and the future [8]. Discussions revealed potential disconnects between survivors and caregivers in terms of the impact of the cancer experience on both, and the needs that this generated.

A theme that took many forms within the caregiver groups was that of change and reconceptualization—change for the person with the cancer, for the caregiver, for each of their senses of the future, and for their relationship with one another. Interventions that provide space for individuals and the dyad to engage with such changes offer potential value to offset some of the harms imposed by cancer and its treatment. The transitional period may be a time where it is appropriate or at least possible to focus attention not only on the survivor but also on the caregiver, and for consideration of communication-focused interventions within the survivor-caregiver dyad, as both are dealing with a “new normal” and potentially altered future and sense of self.

The discussions with caregivers highlighted aspects of their newly acquired role for which they felt poorly prepared or qualified, including physical and medical aspects of caregiving in addition to providing emotional support for the survivor throughout treatment and beyond. During the transition, there is a need for consideration of the tasks that caregivers are likely to undertake as the survivor moves forward in the cancer trajectory, and support and resources that can be provided to each. The discussions pointed to ways in which the poor support for the needs of caregivers has potentially detrimental impacts for both survivors and caregivers. As a result of this analysis and the implications of the current shortfall in resources for caregivers, we added caregiver-specific resources to the materials provided to participants in all arms of our survivorship care planning trial.

The caregiver groups revealed a desire on the part of caregivers for opportunities to express their own needs and experiences with the cancer experience in settings where the focus was not specifically on the person with a cancer history. Caregivers expressed a need for encounters that would lend recognition and legitimacy to their own experiences, and the impact of cancer on their own lives and outlook in addition to the survivor’s experience. The transitional period may be one in which there is space for such explicit consideration, and even if this does not totally reverse any detrimental impact of intense caregiving during treatment, at least it may prevent compounding it going forward. The focus groups themselves were pointed to by caregivers as illustrative of the type of opportunity or exchange that they would have found to be helpful throughout the treatment process; they saw real value in opportunities to talk to people with similar experiences. Transition may be a time in which such opportunities can be made available and utilized.

In this study, we set out to explicitly acknowledge the perspective of both the caregiver and the cancer survivor in identifying the gaps and needs of caregivers during and after cancer treatment. This study was intentionally loosely structured, so the topics that emerged in each group were largely shaped by the interests and concerns of the group members. We did not raise the question of caregiver needs or experiences in our focus groups with survivors. The data from survivors analyzed in this paper are therefore limited to spontaneous discussion in these groups. It may be that some of the areas where we note that topics were raised by care partners but not survivors would be eliminated were we to do a study where survivors were specifically prompted on such issues. It is also perhaps notable that our design included three focus groups with survivors that were disease-specific and one that included three cancer types. It is possible that the discussion of caregivers among survivors might have been different if all of the groups were homogeneous as to type, although we did not see evidence to support this idea from the data in this study. Although most of our caregiver participants were recruited through survivor participants, we did not systematically record any linkages between participants across groups, which created some analytic limitations. We also note that the limited number of focus groups conducted constrains our ability to draw extensive conclusions from any comparisons between study site (rural community hospital versus urban academic hospital) or cancer type or additional roles for the caregiver (e.g., daughter or husband). While our analysis can suggest some possible differences between subgroups, it is largely descriptive and summative, as we intended to explore common experiences and possible group norms on issues related to cancer treatment and the transition to survivorship. Additional focus groups would allow us to examine subgroup differences and have more confidence in these findings. These are areas where future research is warranted.

In this study, we seek to improve long-term health outcomes for both cancer survivors and their caregivers by giving explicit consideration to the unique needs of caregivers during and after acute cancer treatment. The discussions revealed impactful aspects of the caregiver role that tended to go unacknowledged or explored during treatment that could potentially be a focus of intervention efforts during the transition period. Similarly, discussions of informational and communication needs during treatment suggest potential value for attention to these issues as part of survivorship care planning initiatives.