WORRIED TOGETHER: A QUALITATIVE STUDY OF SHARED ANXIETY IN

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Support Care Cancer (2015) 23:1035–1041 DOI 10.1007/s00520-014-2431-9

ORIGINAL ARTICLE

Worried together: a qualitative study of shared anxiety in patients with metastatic non-small cell lung cancer and their family caregivers Ellen Hendriksen & Emma Williams & Nora Sporn & Joseph Greer & Alexandra DeGrange & Cheryl Koopman

Received: 9 July 2014 / Accepted: 2 September 2014 / Published online: 3 October 2014 # Springer-Verlag Berlin Heidelberg 2014

Abstract Purpose Anxiety is prevalent, distressing, and understudied among patients with advanced lung cancer and their family caregivers. Preliminary evidence suggests that anxiety is not only present in both patients and caregivers but shared by the dyad. Few studies have examined the nature of shared anxiety and its impact on patient-caregiver dyads. Methods This study was developed to identify shared causes and manifestations of anxiety experienced by patients with stage IV non-small cell lung cancer (NSCLC) and their primary caregivers. Data were collected through in-depth semistructured interviews with ten matched patient-caregiver dyads and one unmatched patient (N=21) recruited from two comprehensive cancer care centers. Results Using grounded theory, eight themes emerged characterizing shared causes and manifestations of anxiety: (1) uncertainty, (2) loss and impending loss, (3) changing roles, (4) conflict outside the dyad, (5) finances, (6) physical symptoms, (7) fears of decline and dying, and (8) life after the

E. Hendriksen (*) : C. Koopman Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, MC: 5718, Stanford, CA 94305-5718, USA e-mail: [email protected] E. Williams : A. DeGrange PGSP-Stanford Psy.D. Consortium, Palo Alto, CA, USA N. Sporn Department of Psychology, University of Kansas, Lawrence, KS, USA J. Greer Massachusetts General Hospital Cancer Center, Boston, MA, USA J. Greer Harvard Medical School, Boston, MA, USA

patient’s passing. All themes were shared by patients and caregivers. Conclusions Implications for future research include the development and evaluation of interventions to reduce anxiety in cancer patient-caregiver dyads. Keywords Lung cancer . Patients . Caregivers . Anxiety . Uncertainty . Loss

Introduction In the USA, lung cancer is the second most commonly diagnosed cancer among men and women and is the leading cause of cancer death [1]. Non-small cell lung cancer (NSCLC) is the most common type of lung cancer and comprises 85–90 % of lung cancer cases [2]. NSCLC is most often diagnosed in stage IV, the most advanced stage, at which point the primary tumor has metastasized. The 5-year survival rate for NSCLC diagnosed in stage IV is just 1 % [3]. Caregivers of patients with advanced NSCLC, who may be partners, adult children, parents, or other loved ones, bear the brunt of tasks once reserved for trained health-care professionals such as managing complex medication regimens, assisting with activities of daily living, and navigating a complicated medical system [4, 5]. Overall, caregivers for patients with lung cancer spend, on average, more than 10 h per day in caretaking tasks, the greatest number of hours across cancer types [6]. Understandably, anxiety is prevalent among both NSCLC patients and caregivers. Fourteen percent (14 %) of patients develop a diagnosable anxiety disorder [7, 8], while 25 % of caregivers seek psychological treatment [9]. Apart from distress and impairment, anxiety also negatively impacts physical health and increases mortality risk for both patients [10, 11] and caregivers [12–15]. Furthermore, caregiver anxiety shared

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with the patient at the end of life has even been shown to linger on years after a patient’s death [16]. In addition to existing as separate phenomena in each group, anxiety appears to be shared within the dyad [17–20], and the severity of anxiety varies together over time [21, 22]. This notion of shared anxiety fits within descriptions of cancer as a “we-disease” [23] or a “family illness” [24]. In addition, such mutuality extends to diagnosable anxiety disorders. Bambauer et al. found that when patients with advanced cancer met criteria for any psychiatric diagnosis, including panic disorder, generalized anxiety disorder, and post-traumatic stress disorder, caregivers were almost eight times as likely to meet criteria for a diagnosis as well and vice versa [17]. A small but growing body of research views the patientcaregiver dyad as the smallest unit of study [25, 26], and a call for more qualitative research with a focus on “excavating the social contours of the lived experience of cancer caring” [27] continues. To date, however, no published studies address anxiety in advanced NSCLC patients and their caregivers with a focus on the dyad as the smallest indivisible unit. To that end, this qualitative study aims to use grounded theory methodology to further characterize the dyadic connection. This will lay the groundwork for developing and testing interventions to reduce anxiety in patients with NSCLC and their primary caregivers by identifying shared causes and manifestations of anxiety experienced by these two groups.

Method

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referred through an online listing of cancer-related clinical trials. All patients and caregivers completed the informed consent process. Of the 12 dyads who were consented for the study, one caregiver consented but did not complete the interview, and one dyad did not qualify after consent, resulting in ten matched pairs and one unmatched patient (N=21). Study procedures Interviews were semi-structured and were conducted using a standard set of open-ended questions. Interviews were led in a private office, private infusion room, or reserved cancer center conference room by a trained master’s level clinician or the PI of the study, each of whom had experience interviewing medical patients and their family members. Three introductory questions focused on disease and treatment history, and 11 questions focused on physical symptoms of anxiety, sources of anxiety, treatment adherence, perceptions of giving or receiving care, communication and lack of communication around topics of anxiety, and most difficult aspects of having or caring for someone with stage IV NSCLC. Interviews, which were digitally recorded, ranged from 20 to 67 min. Patients and caregivers were interviewed separately, rather than as a dyad, to maximize confidentiality and facilitate openness, which may have been compromised by the presence of a loved one. Each participant reported demographic information and, following completion of the interview, received $25 for his or her participation, for a total of $50 per dyad.

Participants Data analysis Eligible patient participants were diagnosed with stage IV non-small cell lung cancer, achieved a score of at least 14 on the Hamilton Anxiety Rating Scale (HAM-A), and were at least 6 weeks post-diagnosis in order to ensure a washout period for the initial spike of anxiety following diagnosis. Eligible caregiver participants were identified by the patient as the primary caregiver, spent at least 14 h a week caring for the patient (defined as direct care, rearranging one’s schedule to be with the patient at appointments, or performing tasks usually done by the patient), and achieved a score of at least 14 on the HAM-A. Both patient and caregiver were required to meet all inclusion criteria in order to participate. Exclusion criteria included active, unstable, and untreated serious mental illness or other cognitive inabilities to complete informed consent or study procedures. All study procedures were approved by the cancer centers’ institutional review boards. Matched pairs of patients with stage IV NSCLC and family caregivers were recruited from two comprehensive cancer care centers, one in Boston, MA, and one in the San Francisco Bay area. Patients and caregivers were referred by their oncologist or social worker or were self-

Data were analyzed using grounded theory methodology. Grounded theory, introduced by Glaser and Strauss [28–30], is an inductive form of qualitative research with a goal of generating theory. The research method operates in the opposite direction of traditional social science research, which usually begins with a hypothesis. Grounded theory, by contrast, uses constant comparison to systematically discover the theory within the data, which can then be used for hypothesis generation for subsequent projects. As a result, theories are grounded in the data rather than being generated abstractly. All digital recordings of the interviews were transcribed verbatim. The study team drew from existing literature to inform development of the interview guide; however, in order to reduce investigator bias, no codes, categories, or themes were specified a priori. Coding procedures were consistent with Strauss and Corbin’s grounded theory procedures and techniques [30]. Data were analyzed using NVivo10 software. As multiple coders enhance the validity of the analysis [31], two coders experienced in qualitative data analysis (EH and EW) created the codebook in an iterative fashion, using

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constant comparison. Then, all data were coded separately. Differences were discussed and made consistent.

Results Demographic characteristics for both patients and caregivers are listed in Table 1. Across interviews, both patients and caregivers described their situations, stressors, and worries in the context of having stage IV NSCLC or caring for a loved one with stage IV NSCLC. Interviews were often tearful and emotional for both patients and caregivers. While some worries fell primarily to only patients or primarily to caregivers, all antecedents to anxiety and topics of worry were shared by both, whether or not this worry was communicated between them. The following themes emerged from the data.

Table 1 Participant demographics (N=21)

Age (years) Patients Caregivers Gender Patients, female Caregivers, female Education attained Patients, no college Patients, some college Patients, college degree Patients, graduate degree Caregivers, no college Caregivers, some college Caregivers, college degree Caregivers, graduate degree Race Patients, white Patients, Asian Caregivers, white Caregivers, Asian Caregivers, others Patient and caregiver live together Relationship Spouses Adult child caring for parent Patient and/or caregiver has children <18

Mean

Range

59.9 55.6

36–78 34–74

n (%)

8 (73) 5 (50) 2 (9.5) 2 (9.5) 3 (14.3) 4 (19.0) 0 (0.0) 1 (4.8) 4 (19.0) 5 (23.8) 7 (33.3) 3 (14.3) 8 (38.1) 1 (4.8) 1 (4.8) 17 (81) 17 (81) 4 (19) 7 (33)

Shared anxiety theme 1: uncertainty Uncertainty was consistently identified as the primary driver of anxiety and was discussed in many contexts. Both patients and caregivers reported that not knowing was difficult, both existentially and regarding practical matters. For instance, participants referenced uncertainty regarding making life choices, such as having children, employment decisions, retirement, financial decisions, or changing residences, as well as smaller decisions like whether or not to go on vacation. Medical uncertainty at salient times, particularly before scans and while waiting for scan results, was identified by both patients and caregivers as particularly anxiety inducing. Caregiver: Our horizons are about a week long, and it was more so when we were on chemo; our horizons were about a week. I didn’t make plans beyond a week. Caregiver: When [patient name] got this diagnosis…. I stopped working. And so, I figured I wanted to spend every moment humanly possible with her. But, it’s…if I knew she was gonna—I’m sorry, I don’t want to be callous about this—but if I knew she was gonna live another 10 years I’d go find some work. Patient: And then I have a question to [my oncologist] like, “What if I go, say, [to] Las Vegas, for after the holidays? Just to be away, and see some shows and everything. What if I get sick there?” Frequently, mortality was identified as a point of uncertainty. Even with a stage 4 cancer diagnosis, a sizeable number of both patients and caregivers were concerned not only about when, but about if the patient was going to die; some were cognizant of the discrepancies in their thinking—they simultaneously knew the disease was terminal yet hoped for a full recovery. Caregiver: [I worry] that we’re not gonna beat this. That we’re the kind of people who want to beat it. And everybody does. And I worry that we’re suckers for being that way. That we’re gonna head for a fall. Caregiver: Yeah. Just not knowing. And like I was telling [first author], it’s like, the whole illness uncertainty of, is she going to live? Is she going to die? And when is she going to die? What am I gonna do after she’s dead? What is the family going to do? What are the last days going to be like? Shared anxiety theme 2: loss and impending loss Another shared point of anxiety was impending loss, not just of the patient but of the dyad’s previous lifestyle. Several participants mentioned feeling anxiety over their physical limitations or inability to take part in activities that had

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previously defined their identity or brought them great enjoyment. Other patients and caregivers became anxious, among other emotions, when they considered the loss of the patient’s future and a future together. Patient: The things that have changed for us, I mean we were very social. We went out a lot. We have lots of friends. And unfortunately, I haven’t been able to do a lot of things like go to different [events], and dress up. Because I just don’t have the energy, the stamina. So I hate to disappoint him when he’ll say, “Let’s go, we’re gonna go.” Caregiver: But, yeah. I mean I look back at this, and I think we have a great life. We just celebrated our 21st anniversary in August. I don’t want to see that go away. And that’s my fear, right? That’s my big thing. Shared anxiety theme 3: changing roles Both patients and caregivers discussed the changing roles into which cancer had forced them. Patients often took on a dependent role and worried about being a burden on the caregiver. For caregivers, roles expanded to include many new responsibilities or duties previously fulfilled by the patient. Simultaneously, however, caregiver roles narrowed, excluding other activities, in order to care for the patient. Patient: She takes care of me. She’s very busy and she… sometimes it cuts across other things that need to be done. So I’m better at taking care of myself now, but I couldn’t do it without her. You know, I’d find it very difficult. Caregiver: And one of the things that I talk to my girlfriends about in private, what this cancer has done to me is that I don’t remember what it was I wanted to do at this point [in my life]. I don’t remember. A gunshot went off and it’s—my world. There’s a world right here, an inch and a half from my eyes, and I can’t see on the other side of it, and I don’t remember what I wanted to do. So there’s this selflessness that’s happening. There’s no ‘me’ anymore. Caregiver: I don’t know what to do. I know very little about domestic stuff. I panic because I have always depended on [patient].

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related problems—care for other ill relatives, ongoing family feuds—often eclipsed cancer worries. Caregiver: And I find it easier with [the patient] than I do with my dad. And I have a lot of anxiety about my dad. He’s not doing very well either. And so I worry about [patient] dealing with that. Patient: I think we both want [our kids] to be happy. We worry about their relationships. My younger daughter just broke up with her 9 year boyfriend, and moved into our house. Our other kids were living with us for a year. Shared anxiety theme 5: finances Without specific prompting, almost all of the patients and caregivers identified finances as a focus of anxiety. As this study was performed partially in Massachusetts after the implementation of universal health care, no participants worried about lack of medical insurance. However, many dyads reported that the patient or caregiver had stopped working either by choice or by necessity, which increased financial pressures. In addition, future financial security, particularly for the caregiver, was a frequent point of worry by both patients and caregivers. In several cases, discrepancy arose between the patient’s perception of financial security and the caregiver’s perception of insecurity. Caregiver: I go over our finances on a repetitious basis. That gives you a sense of safety to a limited extent. Caregiver: So once [patient] was diagnosed, we made the decision for her not to work. She was a career person, a pretty active career person. And so we made the decision for her not to work and to remain out of work and so forth. And so there is a lot more from a financial standpoint and an insurance standpoint and everything else. There is, I feel, much more stress and tension because of that, for right or wrong. Caregiver: [Patient’s son] said, “Well don’t worry, we have money here.” Well, yeah, you’ve got $500,000. That’s going to go very fast. I mean, I can’t afford to lose $40,000 by taking half a year off. I mean there’s gonna be significant financial impact. For me, I’m probably gonna have to sell the house. Shared anxiety theme 6: physical symptoms

Shared anxiety theme 4: conflict outside the dyad Conflict and stress with other family members and friends often triggered anxiety, whether about the well-being of others, coping successfully with social conflict, or anticipating conflict in the future. Worries about conflict with others outside the dyad were often cancer-related, but non-cancer-

Physical symptoms experienced by either the patient or the caregiver were a frequent point of worry. Caregivers felt pressure to stay healthy and functional so they could continue to care for the patient. One caregiver endured a heart surgery during the patient’s treatment; another struggled through a period of rapid vision loss and subsequent eye surgery.

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Patient symptoms and treatment side effects often triggered thoughts in both members of the dyad of further metastases, decline in functioning, or as a sign that their treatment regimen had ceased to be effective. On several occasions, patients concealed new symptoms or the extent of their symptoms to avoid worrying the caregiver. Caregiver: Whenever I see something like, lately the past few days I noticed she’s been like on the verge of cold or something. And she coughs. And every time she coughs I say, “Is that related to the cancer?” Caregiver: Or she’ll have some things going on, maybe she feels dizzy or maybe something is going on. She will not say anything about that at all. And I think she doesn’t say anything because she doesn’t want to have us worry. Patient: And if I do things like that, forget things a lot, which I do, or leave something somewhere, sometimes I’ll discuss it and sometimes I won’t. Just because either I’m embarrassed or because I don’t want them to worry. That’s what I most keep from them: things I think will make them worry and they can’t do anything about it, you know it’s just worrisome. Shared anxiety theme 7: fears of decline and dying Both patients and caregivers worried about the process of decline and dying, including the experience of increasing fragility and worries about being a burden. For some caregivers, the current experience of caring for a loved one with terminal illness triggered worries about their own eventual decline. Caregiver: And I just don’t know how long the whole process is, you know I don’t know what to expect. And I realize they don’t ever know what to expect. Patient: [I worry most about] death…floundering around on a dock like a fish out of water. I just don’t wanna linger, it’s essentially, you know…. I wouldn’t mind having an extended life, but I don’t want it to be one of poor quality. That’s the issue. Caregiver: And certainly that’s some anxiety for me is “Aah, what am I gonna do if this occurs in the future?” Because I don’t have somebody. So it’s kind of like you suddenly are faced with your own mortality when this happens, right? So you know, ok, should I have had children? So that somebody could help me? You know, should I have stayed in [home state] so that I had family nearby? But I mean I have no desire to go to [home state], this is my life. So I have all of those thoughts, you know you argue with yourself.

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Shared anxiety theme 8: life after the patient’s passing Many patients and caregivers worried about their own capability or the capability of other loved ones, such as children or other relatives, to carry on after the eventual death of the patient. Both patients and caregivers worried about being left alone or leaving the other alone, both existentially and on a practical level. Caregiver: Well I would be living by myself. And that’s really hard to handle. So that’s a big worry for me. Caregiver: How am I gonna get my son through this? How am I gonna get myself through this? I did mention about, and again I hate thinking about it because it is a selfish thing, but if she does pass away or whatever, where am I going as a person and as a father to my son and everything. Patient: Sometimes I imagine my funeral, or what my daughter’s life will be like when I’m not here. Like what will happen to her. (crying, pause). That’s probably the worst. Those thoughts. Or what’s gonna happen to my husband…. So I don’t know whether my husband, and my daughter’s an only child, I wonder will she have the burden on her as an only child? Of taking care of my husband as he ages?

Discussion The small but growing body of literature on NSCLC patients and caregivers has, to date, focused largely on the separate experiences of having advanced cancer and caring for a loved one with advanced cancer. It is known that caregivers provide emotional and instrumental support for the patient while preparing—emotionally, financially, and existentially—for a future without them, and patients with advanced cancer experience the symptoms and side effects of cancer and its treatments while grappling with issues of changing physical capacities, re-shuffling of social circles and priorities, and preparing for the uncertain future. However, although some themes found in this study were tipped primarily toward caregivers or primarily toward patients, all themes emerged as shared between members of the dyad. Indeed, despite the very different experiences of living with stage IV NSCLC and caring for someone with stage IV NSCLC, all topics emerged as shared themes of worry. It is notable that only a small set of worries were medically related, including the themes of physical symptoms and fear of decline and dying; instead, most themes were existential or psychosocial in nature. This finding is supported by the literature; in a review of cancer patient and caregiver needs, 30–

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60 % of patients and caregivers ranked psychosocial support as an unmet need, more so than medical information, financial assistance, or home care help [32]. Despite this demand, however, many intervention studies to date have targeted areas other than psychosocial support [33] or, for patients, exclude those with advanced disease and/or psychiatric conditions [34]. This study builds on previous quantitative findings that anxiety is mutually shared by patient and caregiver [17–20]. Therefore, future interventions should not only target the dyad but also re-conceptualize the role of the caregiver from one solely of support to a parallel and independent yet linked counterpart to the role of patient. In other words, the caregiving role, rather than being ranked hierarchically solely to aid the patient, can be thought of as parallel and interconnected. This study has several methodological limitations. First, although coding reached saturation, the small sample size and limited demographics may limit the ability to generalize the findings; for instance, the sample overall was highly educated, socioeconomically advantaged, and included more female than male patients, which does not reflect the demographics of the majority of NSCLC patients and caregivers. Future research should target a wider range of socioeconomic backgrounds, racial and ethnic diversity, patient gender, and levels of education. Secondly, this sample was a self-selected convenience sample, not a random sample of all advanced NSCLC patients at the hospitals. Finally, patients and caregivers were interviewed at varying points in their care; some were in active treatment, while others were off chemotherapy. Likewise, some were feeling well or improving, while others were nearing end of life. Future research using a longitudinal design is needed to characterize the changing nature of anxiety over the trajectory of care. To date, no behavioral medicine interventions have targeted anxiety in both patients with advanced NSCLC and their caregivers. Including the patient and caregiver perspective in the design of RCTs to alleviate anxiety symptoms may facilitate recruitment, render the intervention more efficacious, and improve retention efforts. Development of a dyadic intervention addressing mutually shared concerns would be the natural next step to better serve the needs of advanced cancer patients and primary caregivers. Acknowledgments This study was supported by grant number 5R03CA159707-02 from the National Cancer Institute. The authors would like to thank the patients and caregivers who participated in this study and the thoracic oncology teams at the Massachusetts General Hospital Cancer Center and the Stanford Cancer Center. Conflict of interest The authors do not have any conflicts of interest to disclose. The authors have full control of all primary data and agree to allow the journal to review their data if requested.

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