We interviewed 16 lung cancer survivors and 5 lung cancer caregivers (Table 1). All survivors and caregivers were Non-Hispanic White race. Most survivors and caregivers were 65 years old or older, married, male gender, received at least a high school diploma, not currently smoking, had an annual income of $49,999 or less, and traveled less than 30 minutes to their primary care provider or the oncologist, and consulted a nurse or oncologist for survivorship care information. Compared to caregivers, survivors were older, had lower levels of education, lifetime smoking history, had a lower annual income, and consulted members outside of a clinical care team (e.g., support group, Facebook) for survivorship care information.
Survivors and caregivers reported four major themes regarding their experiences with survivorship care: (1) frustrations and uncertainty regarding the unexpected barriers, (2) strategies to improve the delivery of posttreatment information, (3) strategies to remain positive and respond to emotional concerns of survivorship care, and (4) the impact of engaged and patient-centered caregivers and care teams. Tables 2-5 provide exemplar quotes that represent each theme and corresponding subthemes.
I. Frustrations and uncertainty regarding unexpected barriers
A commonly discussed survivorship care concern was the frustrations and uncertainty regarding unexpected barriers (Table 2). This theme emphasizes that while participants accepted some barriers—unexpected barriers punctuated a frustrating and uncertain survivorship care experience. Namely, survivors and caregivers described those unexpected barriers arising from 1) adhering to posttreatment survivorship care recommendations and 2) challenges completing daily tasks that lead to frustration and uncertainty.
Barriers to adhering to clinical posttreatment survivorship care recommendations. Among the identified barriers limiting adherence to survivorship care recommendations included limited survivorship care information, poor preparation for daily posttreatment care, trouble obtaining medications, and poor care coordination. As a result of the frustrations and uncertainty that arose due to barriers to adhering to posttreatment survivorship care recommendations, survivors likely delayed their care and experienced cancer-related distress or general anxiety. A survivor described a barrier to adhering to care recommendations as, "I [don't] blame it on the doctor… but I think they could have put a little effort or give me a list [of providers to contact]."
Similarly, caregivers mentioned barriers to helping survivors adhere to their survivorship care. One caregiver commented on their frustrations with receiving timely follow-up care appointments for a cancer survivor: "[The provider] was two hours late…But we knew we were right because we - we - both - both of us had it written down on our calendars."
Barriers to daily living. In addition to barriers impeding adherence to posttreatment survivorship care recommendations, survivors and caregivers commonly commented on uncertainty regarding unexpected barriers to carrying out activities of daily life. Frustrations and uncertainty stemming from barriers to daily living often included challenges associated with treatment-related side effects and getting acclimated to day-to-day living as a posttreatment survivor. A survivor succinctly describes their functional limitations as,
"You don't really realize that you're gonna need that help with your food, and eating, and your bedsheets, and getting in and out of the bath or whatnot, or going on - doing your errands, picking up your medicine."
Notably, caregivers reported barriers to the daily activities of the survivor, not their own daily activities. For example, a caregiver said, "I made many meals for her. Um, because, you know, when they're done with their treatments, and they go home, they don't feel well. They're not going to cook for themselves."
II. Strategies to improve delivery of posttreatment information
Many participants also discussed how they preferred to receive their posttreatment survivorship care information. In this context, posttreatment survivorship care information included but was not limited to provider care recommendations, personal health information, and supportive care service recommendations. Participants preferred to receive this information 1) as clear and specific care recommendations and 2) in a way that was convenient, direct, and delivered through multiple modalities (Table 3).
Communication needs to be clear and specific. Specific and clearly communicated recommendations were often described as easy to follow and responsive to the survivor’s needs. For example, a survivor reflected on their conversation with a provider regarding their survivorship care as, "[My provider is] very good about sitting there and explaining everything and what will be done, how things will be done." Furthermore, participants discussed desired care information about personal needs and care expectations. Regarding care expectations, a survivor "wished" that they had been told that, "if you're going to have difficulty breathing, then you will be given an inhaler, or you can have respiratory therapy."
Modes of communication were diverse but needed to be convenient and direct.Participants appreciated receiving their posttreatment information through varied modes. Primarily, they preferred to receive this information in-person with supplemental written information that included patient-specific care recommendations (e.g., specific care plans) and more general health information. Participants were receptive to receiving posttreatment information via telephone for patient-specific needs (e.g., medical information) or more generalized tasks (e.g., scheduling). For example, a caregiver explained their satisfaction with communicating with a nurse coordinator via telephone and digital photographs, "I would get a hold of [the nurse coordinator] ...and tell her about the wound. And…what was nice, I snapped some pictures of it, and I sent it to her. ...She said, yeah, that's - that's the way it should be." Another survivor appreciated receiving information "in the doctor's office" and through "follow-up calls."
III. Strategies to remain positive and respond to emotional concerns of survivorship care
Anxiety and stress related to cancer survivorship were common concerns; however, survivors and caregivers worked to remain positive about their conditions and cancer management (Table 4). Multiple strategies were used to manage a positive disposition and related emotional concerns, yet participants identified that a) self-reliance, b) a responsive clinical care team, and c) strong social networks were helpful.
Self-reliance. The subtheme, self-reliance, highlights a sense of independence, determination, and grit rooted in maintaining positivity and adherence to care plans despite the challenges associated with survivorship care. Namely, survivors preferred self-reliance over seeking support from social networks or support groups. A survivor commented that, "My family…I just don't want to burden anybody. I'm too strong for it. I don't sound very strong right now, but I really am." Survivors also felt the need to be self-reliant as it related to their attempt to stay positive and handle their emotional concerns in the face of pain or anxiety. As one survivor commented,
"I could feel myself getting kind of depressed, and I can't allow me to stay in that state of mind...when you wake up each morning, you have two choices; you can have a good day, or you can have a bad day."
Similarly, caregivers acknowledged their need to be self-reliant and to encourage independence among their care recipients especially as it relates to encouraging the survivor's cancer care management. A caregiver recalled that "…sometimes support groups are not success stories" and that survivors would have to "find [help] where [they] can."
A responsive care team.Regarding the ability to remain positive or handle emotional concerns, a responsive care team provided information, specific guidance, instructions, and a source of authority and companionship. The care team most often included nurses and oncologists but could also include radiologists, pulmonologists, and surgeons. Caregivers and survivors identified care teams that helped them with their stress, "made [them feel] at ease," gave them "hope," and inspired survivors with reaffirming comments. A survivor mentioned, "My whole team...the way they was treating me, it make me... feel that they they work with me." Another survivor recalled that, "[My provider] wasn't telling me to take these tests just because to make a bunch of money...You know, he was telling me to take these tests because he cared." As one survivor stated, "anyone who walked in, anybody you talked to, anybody that you had [a] question with, they was right there to answer it." Importantly, a responsive care team helped caregivers and survivors remain positive and "comfortable." A caregiver reported that their responsive care team tole them that, “'Yeah, we can kick [cancer’s] butt. We can do this."
Strong social networks. Caregivers and survivors identified that strong social networks with friends, family, and neighbors were critical for their posttreatment survivorship care management and emotional concerns. This was particularly important during the early years of the Covid-19 pandemic, as commented, "What really hurt me was this COVID because it put me in isolation." A survivor replied "the support that you're getting, it's more important. To me, it was...the best medicine." A caregiver described that having a strong "[family] support system is very important." Similarly, a survivor commented on support from their sister as,
"If I'm eating correctly, and if I'm not my one sis brings me cabbage rolls. I know I - she's know I like them. But, uh, they - they just pretty much check in to see if I'm sleeping. They want to make sure because I have four stairs that goes down from the upper - you know, my kitchen, down to my living room, and, uh, they're concerned, me walking up and down the stairs."
IV. The impact of engaging and patient-centered care teams
Engaging and patient-centered formal (i.e., clinical) and informal (i.e., neighbors, family) care teams were critical for posttreatment survivorship care management. Participants often identified the benefits of engaging and patient-centered care teams for managing: a) pain and b) stress (Table 5).
Pain management. Caregivers and survivors stressed the importance of an engaging and patient-centered care team as responsive to managing pain related to treatments and therapies throughout posttreatment survivorship care. As an example of an unresponsive care team, a survivor mentioned that, "I kept telling [my provider] I was in so much pain, and he didn't want to give me any more pain medications. That's why I wound up in the emergency room". The same survivor provided an example of an informal care team member engaging in pain management in her comment, "If it wasn't for my daughter-in-law, I would probably starve to death because I was in a lot of pain." Similarly, a caregiver described their posttreatment care as largely consumed with pain management, commenting, "And it really hurts me to see her suffering like that...And just now, we're dealing with pain."
Stress management.Stress management refers to, but is not limited to, managing stress related to receiving test results, recurrence, posttreatment care management, adjusting to life after cancer, and caregiver strain.Caregivers and survivors that valued stress management support from their engaging and patient-centered care team described them as feeling "secure instead of having to worry," without "doubt in their…words," and "somebody was looking out." A survivor commented on a member of their formal care team, "…he would tell me that even - not to worry, even if it did come back, there's other things that can be done. And I mean, just made me feel more secure instead of having to worry about it all the time.”