Comfort Needs of Cancer Family Caregivers in Outpatient Palliative Care

Abstract

Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Seven themes describing caregivers’ comfort needs were identified including the need to understand, need for self-efficacy, need to derive meaning, need for informal support, need for formal support, need for resources, and need for self-care. Findings have clear implications for palliative nursing, as they directly address cancer family caregivers’ needs in five of the eight domains of care delineated by the National Consensus Project for Quality Palliative Care’s Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers’ needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.

Unprecedented growth in the number of people living with serious or life-limiting illnesses such as cancer, coupled with the challenges associated with managing complex symptomatology, has resulted in the rapid expansion of palliative care in recent decades.¹ Although most palliative care services to date have been provided on an inpatient basis, experts have identified outpatient clinics as a key point of entry for timely access to palliative care, which has the potential to improve clinical outcomes while aligning healthcare use with patients and families’ individualized goals and preferences.^2–3 Outpatient palliative care fills a critical gap for non-hospitalized patients whose prognosis or treatment choices render them ineligible for other types of community-based care, such as hospice, which in the United States is available solely at end of life and primarily limited to individuals who elect to forgo disease-directed treatments such as chemotherapy, non-palliative radiation, and surgery.⁴

Central to the palliative care philosophy is a commitment to meeting the biopsychosocial needs of both patients and their families as an interdependent unit of care,^5–6 yet little evidence exists to inform effective service provision to outpatient palliative oncology patients and families with unmet psychosocial needs. This is particularly true with regard to services for family caregivers (FCGs), the “hidden patients” who provide the majority of round-the-clock, day-to-day cancer care in the community. Research studies have found numerous stressors to be associated with cancer family caregiving, including problems communicating with health care providers; insufficient training, knowledge, or skills needed to complete specific tasks (e.g., administering medications); social isolation; and lack of medical information.⁷ However, there is a lack of research on outpatient palliative care as a unique setting and cancer care delivery model. Therefore, it is not known if these challenges are shared by family caregivers of outpatient palliative oncology patients.

Comfort Theory

Comfort Theory⁸ provides a useful lens through which to examine the needs of cancer family caregivers receiving outpatient palliative care. Comfort Theory conceptualizes comfort as a fundamental human need for relief, ease, or transcendence of distress in four contexts of experience: psychospiritual, sociocultural, environmental, and physical. The psychospiritual context pertains to a person’s internal awareness of self, understanding of the world, cognitive functioning, sense of meaning in life, and understood connection to a higher order or being. The sociocultural context pertains to a person’s interpersonal, familial, and societal relationships. The environmental context pertains to the external factors that influence a person’s life, including their surroundings and resource availability. The physical context pertains to one’s physical body, including bodily sensations and functions. When applying Comfort Theory to clinical practice, clinicians first assess patients and families’ unmet comfort needs in each of these four contexts and then design and deliver interventions that, if effective, meet unmet needs and result in enhanced comfort.⁸

While primarily applied to the study of nursing practice, Comfort Theory is also highly relevant to the care provided by interdisciplinary palliative care teams, which work to provide patients and families with relief from the symptoms and stress of serious illnesses.^9–10 Comfort Theory’s holistic view of the patient and family experience in its psychospiritual, sociocultural, environmental, and physical contexts aligns with palliative care’s conceptualization of total pain, defined as a multidimensional experience inclusive of patients and families’ physical, psychological, social, spiritual, and practical struggles.¹¹ In addition, Comfort Theory and palliative care share an understanding of the patient and family as a collective unit of care and, thus, conceptualize effective interventions as those that enhance comfort for patients and their family members.^6,8

Study Purpose and Research Question

The overarching purpose of this study was to better understand the challenges faced by cancer family caregivers who receive services from outpatient palliative care teams. With Comfort Theory as a theoretical foundation, researchers sought to answer the following question: What are the comfort needs of family caregivers of patients with cancer receiving outpatient palliative care?

Methods

Data Source

Researchers conducted a secondary analysis¹² of qualitative data generated during in-depth, semi-structured, individual interviews of family caregivers participating in a National Cancer Institute-funded (R21CA191165; Principal Investigator: Washington), single-site, randomized clinical trial (RCT) of a caregiver support intervention delivered in cooperation with an outpatient palliative care clinic located in the Midwestern United States (a detailed description of the original trial has been previously published¹³). Inclusion criteria required that RCT participants were age 18 or older, able to speak and read English, and providing unpaid care to an adult patient with cancer receiving outpatient palliative care services at the time of their enrollment in the study. The University of Missouri Institutional Review Board approved all research activities associated with the original trial (IRB Project #2002215).

Interviews were conducted upon caregivers’ exit from the RCT. Those who exited early (most commonly due to patient death) were allowed to choose whether or not to be interviewed. Approximately 22% of the RCT participants (18 of 83) declined to be interviewed, and audio-recording failed during 2 interviews, resulting in 63 interviews that were transcribed by a third party and subsequently made available for analysis. All interviews were conducted in person or via telephone by our team’s research nurse or social worker. On average, interviews lasted 29.6 minutes (SD = 14.5 minutes). Sample interview questions included What are some of the problems you face when caring for someone with cancer? and What do you find helpful when facing caregiving problems?

Data Analysis

Two members of the research team (DEC, KTW) used Dedoose (Version 8.0.17), a web-based data analysis application, to perform a reflexive thematic analysis¹⁴ of family caregivers’ transcribed interview data and corresponding field notes. They used a combined technique of inductive and deductive coding and theme development, first describing caregivers’ needs as they were reflected in the data (inductive), then using Comfort Theory as an organizational framework to determine whether the identified needs pertained to caregivers’ psychospiritual, sociocultural, environmental, or physical contexts of experience (deductive). The first researcher involved in the analysis (DEC) was a registered nurse and board-certified case manager who was completing coursework toward her PhD in Nursing after working in clinical practice for over 25 years. The second researcher involved in the analysis (KTW) was a doctorally-prepared health services researcher and licensed clinical social worker who was Principal Investigator of the original study from which data for the secondary analysis were drawn.

The analysis began with researchers carefully reviewing the first 20 transcripts and generating an initial list of descriptive codes that reflected caregivers’ needs, consistent with the study’s research question. Next, DEC applied the codes to the interview data, generating new codes as necessary and creating detailed memos to record emerging impressions about data meanings and relationships.¹⁵ After the first 20 interviews were coded, DEC and KTW met to review the coding and discuss emerging themes. They followed the same process for the next 15 transcripts, concluding that they had achieved saturation¹⁶ after they had analyzed 35 interviews and not gained substantive new insights into the study’s research question during analysis of the last 5. However, in reviewing the demographic characteristics of the family caregivers whose interviews had been analyzed, they discovered that their sample was almost entirely female and Caucasian. In an effort to maximize variation in the study sample,¹⁷ they extended their analysis to include an additional four existing transcripts (three of interviews with male caregivers, one of an interview with a racial minority caregiver), resulting in a total sample of 39 family caregiver interviews (see Table 1 for detailed information on participant characteristics).

Table 1.

Participant Characteristics (N = 39)

Characteristic	n (%)a
Age, mean (SD)	51.8 (12.6)
Gender
Female	25 (64.1)
Male	14 (35.9)
Relationship to Patient
Spouse/Long-term Partner	23 (59.0)
Adult Child/Grandchild	8 (20.5)
Sibling	3 (7.7)
Parent	2 (5.1)
Other Relative (Ex-spouse, Nephew)	2 (5.1)
Friend	1 (2.6)
Residence
Lives with Patient	27 (69.2)
Lives < 1 Hour from Patient	11 (28.2)
Lives > 1 Hour from Patient	1 (2.6)
Ethnicity
Latinx	1 (2.6)
Non-Latinx	38 (97.4)
Race
Caucasian	37 (94.9)
Native American	2 (5.1)

^aUnless otherwise noted; Percentages may not total 100 due to rounding.

Strategies to Enhance Trustworthiness

Researchers employed numerous strategies to enhance the trustworthiness of the study by establishing dependability (demonstrating that the research process was logical, traceable, and clearly documented), confirmability (demonstrating that their interpretations and findings were clearly derived from the data), transferability (providing sufficiently thick description to allow others to judge whether study findings would be applicable to other settings or populations), and credibility (demonstrating goodness-of-fit between participants’ experiences and researchers’ representation of them).¹⁸ A summary of these strategies is provided in Table 2.

Table 2.

Strategies to Enhance Trustworthiness

Criteria Met
	Dependability	Confirmability	Transferability	Credibility
Established an audit trail	X	X
Audio-recorded interviewsa				X
Transcribed interviews verbatima
Ensured saturation was achieved			X	X
Verified transcription accuracya				X
Searched for confirming evidence		X	X	X
Participated in peer debriefing		X		X
Documented quality-enhancement efforts			X	X
Provided thick, vivid description			X	X
Disclosed researcher credentials, background				X
Documented reflexivity				X

^aStrategy employed in the original study from which data for the secondary analysis were drawn

Findings

Researchers identified seven themes, which are described in detail below, organized according to which of Comfort Theory’s four contexts of experience they are most directly related. Direct quotations are provided where helpful in illustrating key ideas. A summary of findings is provided in Table 3.

Table 3.

Summary of Themes Describing Family Caregivers’ Comfort Needs by Context of Experience

Context	Context Definitiona	Theme/Need	Theme Definition
Psychospiritual	Need pertains to caregivers’ internal awareness of self, understanding of the world, cognitive functioning, sense of meaning in life, or understood connection to a higher order or being.	Need to understand	Caregivers need to understand their patient’s diagnosis and treatment.
		Need for self-efficacy	Caregivers need to feel confident in their ability to provide good care.
		Need to derive meaning	Caregivers need to find meaning in their caregiving experiences.
Sociocultural	Need pertains to caregivers’ interpersonal, family, or societal relationships.	Need for informal support	Caregivers need support from friends, family members, co-workers, and other family caregivers.
		Need for formal support	Caregivers need support from healthcare professionals.
Environmental	Need pertains to caregivers’ external surroundings and available resources.	Need for resources	Caregivers need adequate resources to meet their basic needs and fulfill caregiving responsibilities.
Physical	Need pertains to caregivers’ physical self, including bodily sensations and functions.	Need for self-care	Caregivers need to tend to their own physical health and wellbeing.

^aContext definitions have been modified to ensure mutual exclusivity and applicability to the experience of family caregivers in community settings.

Psychospiritual Context

Researchers identified three themes that described caregivers’ psychospiritual needs: need to understand, need for self-efficacy, and need to derive meaning from caregiving experiences. Study participants emphasized the need to understand their patient’s cancer diagnosis and treatment. In many instances, this manifested as a need to access and make sense of information on a wide range of topics including diagnosis and prognosis, disease-directed treatments, pain and symptom management, durable medical equipment, and healthcare insurance. One study participant described his reaction to being informed that his father’s cancer was inoperable: “I’m like ‘why can’t you do this and this?’ and they’re like ‘we can’t.’ Well, ‘can’t’ isn’t an answer I want to hear. I want to know why.” Some caregivers differentiated between the ability to access information and the ability to comprehend that information. For example, one caregiver referenced a discussion with a healthcare provider in which the provider used an abbreviation to refer to a specific vertebra: “They need to explain [things]. Break it down … some people don’t understand medical terms … We don’t understand, you know, what C3 is … we don’t understand that stuff.” Other caregivers reported a greater ease of understanding the biomedical realities of cancer and its treatment, yet wanted more information on what those realities would mean in terms of patients and families’ functional ability and overall quality of life.

Caregivers’ need for understanding was directly related to their need for self-efficacy, or their perception of their ability be effective in their caregiving role. One caregiver linked these two ideas by explaining, “Whenever [healthcare providers] give me information, it gives me ideas and … things to think about. I feel like I’m involved, you know, and I’m able to do something.” Several caregivers candidly described the distress they experienced when they felt incapable of performing necessary tasks. For example, a son described the “very anxious” experience of changing his father’s briefs: “The aides, they showed me [how to change his briefs] … [but] I had so many things going through my mind [when] they were showing me …. I couldn’t remember it when it came time to do it.” Other caregivers discussed self-efficacy more broadly, indicating a lack of confidence in many caregiving tasks. This was true for one study participant who, when asked to describe some of the problems caregivers face, replied, “not knowing what you need to do, or what [the patient] need[s], or what you can do.”

On the surface, these challenges were simply frustrating; caregivers needed to perform tasks but lacked the necessary training, knowledge, or skills. However, as researchers delved more deeply into their analysis, they identified linkages between caregivers’ need for understanding, need for self-efficacy, and need to derive meaning from their experiences. Almost every caregiver expressed a desire to be useful, to relieve suffering, or simply to help. For many, caregiving was the mechanism by which they sought to show love, reciprocate prior care, or honor deeply-held values and aspects of their identity. For example, one study participant described caregiving an act of selflessness, a value she seemed to hold in particularly high regard. She stated, “That’s what the job means is ‘giving care.’ … To be a good, effective caregiver you have to … give up yourself for a while …. That person is dependent on you, and you have to realize that.” Other caregivers’ need to finding meaning resulted from challenges to old ways of viewing themselves and the world. One study participant, who self-identified as “a big control freak,” described her need to rethink what it meant to be a caregiver in light of her husband’s cancer diagnosis: “As a wife and mom, you kind of control everything …. [but] you can’t control cancer at all. It’s like you just have to watch everything happen … [Before my husband got sick], I could fix anything. … That’s what I do. But then with this, you can’t fix it.” Numerous caregivers indicated that their religious faith helped them find meaning in their experiences, viewing both their family member’s illness and their involvement in caregiving as part of “God’s plan.”

Sociocultural Context

In the sociocultural realm, family caregivers repeatedly expressed a need for connection with others. This was described in terms of two core comfort needs: a need for informal support from friends, co-workers, family members, and other family caregivers, and a need for formal support from their healthcare team. Caregivers described these needs by discussing both the absence and the presence of support from others. When asked about the problems she faced as a family caregiver, a woman who was caring for her mother spoke about the lack of support she received from friends and family members. She stated, “It’s uncanny how they just disappear.” She went on to explain, “They’ll call and they’re like, ‘How are you all doing? If you all need anything, just say so,’ and [I’ll reply], ‘Well, we do’ …. [and they’ll reply], ‘Oh, well, I’ve got to go.’” She summarized her experience by stating, “They abandoned [my mother] and left it on me.” Conversely, another caregiver described the comfort he and his family derived from an extensive social support network. When asked what things were most helpful to him as a caregiver, he replied, “Being surrounded with a lot of people that were willing to help …. Not only did they help take care of [my wife], they were there to support me. And even a lot of the kids, their friends were there to support them, which made that part easier for me, allowed me not to worry so much about [them].”

In addition to friends and family members, several study participants expressed a desire to connect with other family caregivers. They described needing “somebody to talk to [so] you [are not] talking to yourself” and emphasized that “no one knows what someone goes through without … walking a mile in their shoes.” Several caregivers discussed support groups (“groups where caregivers [can] talk amongst themselves about their feelings”) as potentially valuable, although few reported having actually participated in one, citing unavailability of groups in rural communities and a lack of knowledge of existing groups in more populated areas. Others focused on the comfort of naturally-occurring support systems, such as the relationships developed among patients and family caregivers in the cancer center waiting rooms or treatment areas. One study participant indicated that it would be helpful to cancer family caregivers “if there was a way to have other caregivers just sitting down and visiting with them.”

Family caregivers also expressed a need for formal support from healthcare providers. In some respects, the nature of support they desired from their healthcare team was similar to that sought from friends and family members. For example, as with family members and friends, caregivers sought emotional support from healthcare providers. A woman caring for her husband illustrated this need with the following story: “I just remember expressing myself [to a healthcare provider] … saying I felt overwhelmed …. It wasn’t anything that I wanted advice on, but I felt like I was getting advice on how to not feel overwhelmed, and I think I just wanted the validation of [someone] saying, ‘Yeah, it is overwhelming.’” Another caregiver emphasized the need for emotional connections with healthcare providers, contrasting care from empathetic providers with that from providers “acting like … robots.”

Family caregivers also described the need for support in navigating a medical system they described as unwieldy and disjointed. Several FCGs relied on nurses to fill that role. One caregiver discussed her relationship with her husband’s palliative care nurse practitioner: “I like the fact that … there’s kind of a central person communicating with the different doctors and nurses and those healthcare providers to make sure that everyone understands what’s going on.” Another caregiver saw an oncology nurse as the point person for her husband’s care. She explained, “I called quite frequently [with questions] …. I got to [the oncology] nurse, and I said, ‘This is my weekly call,’ you know.” One study participant reported that she viewed the palliative care team as a key support system, describing the service as a “liaison” that “help[s] ordinary people connect with the medical community.”

Environmental Context

In contrast to family caregivers’ sociocultural needs, which pertained to their relationships with other people, caregivers’ environmental comfort needs were focused on (non-human) resources, including financial resources, that were required to fulfill caregiving tasks and support patients’ and family caregivers’ quality of life. Transportation was a frequently cited environmental need for family caregivers, many of whom lived in rural areas at significant distance from the cancer center from which they were recruited for the study. Those who lived hours away or whose care recipient received frequent or lengthy disease-directed treatments also cited the need for lodging near the cancer center. While financial assistance for travel costs was available for some families through programs at the cancer center, data suggested that multiple steps were involving in accessing care, creating a potential barrier. A family caregiver explained: “I tried to sign up to get … gas money for going [to the cancer center] when we were going down every day, but you … could only turn in three [trips] at a time and you had to have receipts and doctors’ signatures … so I just gave up on it.”

Several caregivers described environmental needs that, while not directly related to the patient’s cancer treatment, were nonetheless affected by the financial realities of caring for someone living with cancer. One study participant, who was simultaneously caring for two individuals with cancer, was experiencing serious financial hardship due to missed work as a result of caregiving. She summarized her financial situation by stating, “Most of the time I sit and think that, my gosh, [I’m] going in debt twice as much. I’m already in debt on my own, and now I’ve got two other people [depending on me].” She went on to describe skipping trips to the grocery store and forgoing needed home repairs due to cost, only to feel guilty for “letting [her] house go.” Other study participants reported a longstanding need for resources that pre-dated their caregiving role. For most caregivers in this situation, their cancer caregiving experience exacerbated their financial challenges; however, in a small number of cases, the patient’s cancer diagnosis provided access to previously unavailable resources, as was the case for a woman whose partner had advanced cancer. Prior to his cancer diagnosis, the couple had been “living outside” for several years. The caregiver described how social workers at the cancer center had assisted her and her partner with housing, stating, “I’ve never had a home before and neither had [my partner] …. The social workers really made things happen for us, things that we didn’t think [were] ever going to happen.”

Physical Context

Family caregivers’ physical comfort needs pertained to their own physical health. Unlike environmental comfort needs, which related to caregivers’ need for external resources, physical comfort needs focused on internal matters, including biological processes and physical functioning. The essence of the data comprising the single theme identified in caregivers’ physical contexts was a need for self-care, which family caregivers discussed in terms of both the problematic absence of self-care and the benefits of engaging in self-care behaviors. Although some study participants were struggling with specific health conditions (e.g., bipolar disorder, history of stroke), most discussed the need for physical self-care in light of the general wear-and-tear of caregiving. For example, when asked about the problems she faced caring for her husband, one caregiver replied, “just my own health problems …. we’re getting old … we’re both like two old people trying to stumble around and do it as best we can.” Another study participant, who wore a prosthetic limb and experienced chronic back pain, discussed her need for rest amid a demanding caregiving schedule: “I was in bed all day yesterday. I didn’t even make it to church. I got up prepared to go to church [and] didn’t get there …. And this week I’ve got [appointments] Tuesday, Wednesday, Thursday, and Friday [at the cancer center].” Numerous family caregivers specifically mentioned sleep as a physical comfort need, describing the physical toll of caregiving around the clock. A caregiver whose father had a particularly intensive pain management regimen shared the following: “[I woke up] every two hours … to give him a dose [of pain medication] and then set my phone for two hours later [to] try to sleep. It was really hard.”

Discussion

Comfort Theory is a highly adaptable framework that is well aligned with palliative nursing’s holistic view of the patient and family as an interdependent unit of care. In this study—among the first to apply Comfort Theory in outpatient palliative oncology—it proved to be a useful guide for exploration of the needs of family caregivers, allowing researchers to identify seven distinct yet interrelated comfort needs.

In the psychospiritual realm, caregivers expressed a need to understand, need for self-efficacy, and need to derive meaning, all of which have been positively linked with individuals’ subjective health and overall quality of life,^19–20 suggesting that healthcare professionals who help family caregivers meet their psychospiritual comfort needs are likely to positively contribute to caregivers’ health and wellbeing. With regard to their sociocultural needs, family caregivers emphasized the need for informal support and need for formal support, consistent with a large body of extant research findings.²¹ Of particular note is caregivers’ expressed need for formal support navigating the healthcare system and for informal support from others who have had first-had experience caring for an individual with cancer.

Caregivers’ environmental need for resources has been extensively examined, particularly with growing interest in the financial toxicity²² of cancer and its treatment. Our study findings extend that line of research in part by highlighting the ways overly bureaucratic processes create barriers for patients and family caregivers attempting to access supportive services (e.g., the caregiver who “gave up” on seeking mileage reimbursement due to excessive documentation demands). The finding that, for a small minority of family caregivers, involvement in cancer caregiving increased access to resources is also deserving of additional attention. It is unclear, for example, if those resources are designed to continue into long-term survivorship or bereavement and, if not, how patients and their family caregivers are supported beyond the active or disease-directed treatment phase of care. Finally, the need for self-care among family caregivers is so regularly discussed it has almost become cliché, yet it is still the case that a significant proportion of cancer family caregivers neglect self-care activities—particularly with regard to physical activity and health responsibility behaviors such as reporting health concerns to healthcare professionals—leaving them vulnerable to poor physical and emotional health outcomes.²³

Implications for Palliative Nursing

These study findings have clear implications for palliative nurses and their interprofessional colleagues, as they explicitly address cancer family caregivers’ needs in five of the eight domains of care delineated by the National Consensus Project for Quality Palliative Care’s Clinical Practice Guidelines including physical aspects of care; psychological and psychiatric aspects of care; social aspects of care; spiritual, religious, and existential aspects of care; and cultural aspects of care.²⁴ However, prior to intervening to address family caregivers’ needs in those domains of care or—to use Comfort Theory verbiage—those contexts of experience, nurses must first identify unmet needs via comprehensive, holistic caregiver assessment,⁷ which remains uncommon in palliative care²⁵ despite its purported commitment to family caregivers and the availability of numerous validated assessment tools.²⁶ Once identified, caregiver needs can be addressed through delivery of a growing number of evidence-based interventions that have been shown to improve caregivers’ quality of life and decrease their burden and psychological distress.²⁷

Study Limitations

This study had several limitations. First, this was a secondary analysis, which precluded simultaneous data collection, analysis, and evolving interview questions, as often occurs in qualitative studies,²⁸ and which might have provided additional insights into family caregivers’ comfort needs. Second, Comfort Theory has many elements that were not considered in the present analysis, as researchers opted to focus specifically on family caregivers’ needs, consistent with the study’s research question. Finally, despite researchers’ efforts to maximize variation with regard to the demographic characteristics of participants whose interviews were analyzed in the study, the final sample was largely homogenous with regard to race and ethnicity. Additional research is needed to determine if the needs identified in the present study are experienced in the same ways by racial and ethnic minority caregivers, given well-documented differences in the cancer caregiving experience by race and ethnicity. For example, in a study of colorectal and lung cancer caregivers, African Americans reported greater informational support and preparedness for the caregiving role than white caregivers,²⁹ which may affect the extent to which African American caregivers prefer or perceive a need for formal support from healthcare providers. Other prior research suggests that there are some similarities among cancer family caregivers that transcend race and ethnicity. For example, while studies indicate that racial and ethnic minority caregivers are more vulnerable to financial and employment loss than white caregivers, the economic consequences of cancer caregiving have been found to be substantial for nearly all but the very wealthiest families.^30–31 Thus, while the intensity of caregivers’ need for tangible resources may be variable, recognition of the need is likely to be shared across demographic groups.