Hospice Family Caregivers’ Uncertainty, Burden and Unmet Needs in Prospective Audio Diaries

Abstract

Hospice cancer caregivers’ (HCC) burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. HCC daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs’ day-to-day burden and unmet needs with prospective HCC (N=50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs’ burden were dissonance between how they “should” feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs’ experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs.

Caring for a family member on hospice care can engender closeness with the care recipient, fulfil a personal sense of responsibility, enhance meaning-making during a difficult time, and foster personal growth for family caregivers.¹ However, home hospice caregiving often also requires family caregivers to navigate multiple psychosocial burdens related to the intensity of the caregiving experience as well as emotional burdens of coming to terms with the death of the care recipient.^2–3 It is well documented that many caregivers report unmet needs during the end-of-life (EOL) caregiving period, including support from healthcare providers, information about caregiving, and practical support.⁴

What is missing from current research, however, is an understanding of the daily personal context of care at home that contributes to burden and unmet needs for hospice cancer caregivers (HCC). Much of the research on caregiver burden and benefit relies on survey methods that ask caregivers to recall experiences using a limited response set.⁵ While interview methods may allow for a more full and nuanced expression of their end-of-life caregiving experiences, interviews are commonly conducted during bereavement, the stress and emotional burden of providing care may affect recall, and the presence of an interviewer may lead to filtered responses. Naturalistic, longitudinal methods of data collection such as daily diaries may elicit a more realistic picture of end-of-life for HCC.^6–7

Few studies capture HCC reporting needs and burden in real-time.⁸ In particular, recall may be affected by stressful or traumatic events, such as caring for someone who is ill or watching a loved one die.^6–7 The use of daily audio diaries for symptom reporting and emotional expression allows for real-time data capture and aligns with studies demonstrating the utility of narrative expression to process challenging experiences and emotions.⁹ Finally, providing space for free response, rather than measures or checklists, may allow HCC to expand on the burdens and unmet needs they experience. A prior report using feasibility data from this current sample demonstrated that audio diaries are feasible and acceptable for HCC, and found that mental and emotional needs and symptoms of both the HCC and patients were captured in the audio diaries beyond a standardized checklist.¹⁰ Therefore, the purpose of this study was to capture the day-to-day lived experience of hospice cancer caregivers, including burden and unmet needs.

Theoretical Framework

Mishel’s Uncertainty in Chronic Illness theory has been used to understand the uncertainty experienced by both cancer patients and cancer family caregivers.¹¹ It is particularly useful when applied to the end-of-life experience, due to the high level of physical and emotional burden for caregivers and uncertainty about the end-of-life timeline and trajectory.¹² In addition, caregivers face much uncertainty related to their own emotional responses to hospice caregiving, and their daily life while caregiving.¹³ For caregivers, higher levels of uncertainty are associated with higher levels of perceived stress and caregiver burden.¹⁴ One study found that caregiver uncertainty mediated the relationship between caregiver resilience and caregiving ability.¹⁵ Furthermore, factors related to caregiver uncertainty in illness experiences include: symptom severity, resentment towards care recipient or caregiving situation, poor family support, financial strain, loss of freedom, unhelpful support from health care professionals, and lack of coping.^{13, 16} Mishel’s theory provided an analytic framework that focused interpreting and synthesizing findings from inductive coding.

Methods

This was a secondary analysis of a multisite, mixed methods prospective study. The study was approved by the University of Utah IRB. Study procedures were previously reported.¹⁷

Participants and Procedures

Participants were recruited from four hospice agencies located in US states in the Northeast, Southeast, Midwest, and Intermountain West. Recruitment was supported by a partnership with the Palliative Care Research Cooperative.¹⁸ Eligibility criteria for caregiver participants included: 18 years of age or older, able to speak and read English, and were nonparent biological/legal relatives or friends providing in-home care for patients with a primary hospice admission diagnosis of cancer and a prognosis of ≥ 1 week to live.¹⁷

After study enrollment, caregivers completed baseline demographic measures and were oriented to study procedures, common patient and caregiver symptoms, and a secure study phone. They were instructed to call the study’s interactive voice response (IVR) system daily during the hospice caregiving period (i.e., before patient death) to answer a survey assessing patient symptoms and their own symptoms. Participants were then asked to record a brief audio diary at the end of the IVR survey. Participants received one of two prompts: 1) “This is your time to say whatever you want about how your family member is doing today and any of your concerns about how they are doing;” or 2) “Tell me your deepest thoughts and feelings about what you are going through. Talk about good and bad things that happened today.” The different prompts were designed to elicit differing caregiver responses, with one focused more on symptoms (prompt 1), and the other focused more on emotional responses (prompt 2). The median recording audio diary recording time for both groups after outliers were removed was 97 seconds.¹⁰ The present study focused on caregivers who received either prompt prior to patient death. A more detailed description of the IVR surveys and audio diaries has been reported elsewhere.¹⁰

Data Analysis

Audio diary recordings were reviewed by the team and those that a) contained meaningful information (e.g., reported substantive and/or new information related to the assigned prompt)¹⁰ and b) were recorded before patient death were selected for transcription. Team members then transcribed the diaries and checked transcripts against the audio for accuracy. These transcripts were then imported into NVivo (released March 2020) for data management and coding.¹⁹

A four-member qualitative analysis team coded the data using a qualitative descriptive approach.²⁰ First, diaries were deductively coded to identify and categorize material related to burden and unmet needs. These data were then compiled and inductively coded to describe specific HCC concerns and experiences in each category with the lens of Mishel’s Uncertainty Theory.¹¹ Inductive codes from all team members were then compiled, reviewed, and synthesized into descriptive themes that integrated uncertainty in interactions with the health care team and caregiver emotional responses to hospice caregiving.²⁰ Trustworthiness was maintained using reflexivity (coders acknowledging positionality during coding meetings), coder triangulation, and an audit trial (meeting notes and codebook).²¹

Results

Caregiver Demographics

Participants were mostly white (n=42, 84%) non-Hispanic (n=43, 86%) married (n=32, 64%) women (n=38, 76%) who had completed at least some college (n=44, 88%). About half were not currently working for pay (n=26, 52%). Twenty-two caregivers were the adult child of the hospice patient (44%) and 20 (40%) were a spouse or partner (see Table 1).

Table 1:

Participant demographic and caregiving characteristics

Variable	N=50
	Mean, (SD)	Range
Age	57.06 (25.95)	30–86
	N (%)
Race  White  Black or African American  Asian  Native American or Alaska Native  Eastern Indian  Multiple Races	42 (84) 1 (4) 1 (4) 1 (4) 1 (4) 4 (8)
Ethnicity  Hispanic/Latinx  Non-Hispanic/Non-Latinx	43 (86) 7 (14)
Gender  Woman  Man  Transgender	38 (76) 12 (24) 2 (4)
Sexual Orientation  Heterosexual/Strait  Lesbian, Gay, or Bisexual  Prefer to self-describe/Missing	44 (88) 4 (8) 2 (4)
Relationship Status  Married/Partnered  Separated or Divorced  Single (never married)  Widow or Widower	34 (68) 11 (22) 4 (8) 1 (2)
Highest Level of Schooling  HS graduate/Some college/Voc school  College graduate  Some graduate or professional schooling  Graduate or professional degree  Missing	23 (46) 12 (24) 3 (6) 11 (22) 1 (2)
Current Employment Status  Not working for pay  Part-time  Full-time  Missing	26 (52) 17 (34) 6 (12) 1 (2)
Total Annual Household Income  Less than $24,999  $25,000 - $39,000  $40,000 -$74,999  $75,000 or more  Missing	9 (18) 8 (16) 12 (24) 17 (34) 4 (8)
Relationship to Patient  Child  Spouse or Partner  Other Family/Friend	22 (44) 20 (40) 8 (16)

Caregiver Burden

Caregivers expressed a sense of burden in their diaries in terms of the following: 1) Conflicting, ambiguous, or difficult emotions including a sense of mismatch between how they “should” have felt and how they actually felt; 2) Having no outlet to express their emotions and feeling alone; 3) Concerns about their own health status including acute and chronic illnesses and how this impacted their ability to be a caregiver; and 4) Feeling helpless within a liminal (occupying both sides of a boundary) space (see Table 2).

Table 2:

Audio Diary Burden and Unmet Needs Coding

Main Code	Sub-Codes	Quotes
Hospice Cancer Caregiver Burden “Being a hospice caregiver is certainly straining. You get to a point where it’s the worst thing you’ve ever done in your entire life and you’d like it to be over. It’s terrible watching someone you love and have been with slowly passing away and losing their mental capacities. It’s very draining and something I’d like to get over because she has a better place to be than here.” (1049)	Mismatch between how they “should” feel and how they actually feel	“I’m very tired, um, I got this feeling like I can’t handle it, that its overwhelming and I’m tired. I have terrible thoughts like let’s hurry up and end it. I feel like I don’t want to do this anymore.” (1094)
	Having no outlet to express feelings/Loneliness	“The shifting of symptoms means that it’s hard to anticipate what a day will be like. It’s difficult to be in a position of feeling the need to be somewhat reassuring of people who visit that what he’s doing is ok. When people want him to get better I don’t think it’s my place to say, “No he won’t get better”. On the other hand, it may not be a very nice thing for him to hear. It’s not blaming some others it’s kind of difficult to be in the real moment.”(1070)
	Concern about their own health and/or and how this will impact the patient.	“I am kind of worried who is going to be his caretaker if I am no longer here or no longer able to do it.” (1084)
	The need for more focus on education and information provision for family to reduce this burden on primary caregivers.	“I think it would be helpful for the medical professional when they put somebody onto home hospice…. Particularly when the have a DNR DNI order that they explain in detail what some of that can mean to a person or to a family.” (1129)
	Feeling helpless and in a liminal space	“I guess for him and for me to a certain extent--The waiting to die its—painful—not painful in the sense there is a lot of pain associated with it—it is just- uncertain. We know he is going to die—he knows he is going to die- it’s just the waiting period of not having been able to do much in between now and the end.” (1084)
Hospice Cancer Caregiver Unmet Needs “The nurse did not show up. Hospice care has sort of disappeared. It leaves me absolutely feeling alone and unsupported in a way that just seems not very nice.” (1066)	Unclear and unmet expectations regarding hospice care team support	“I’m just finding that, probably because of my perception of what hospice was, I’m feeling abandoned, alone, and disappointed. I mean the people are great but I thought there would be more frequent visits more accessibility.” (1024)
	Not foreseeing or understanding extent of hospice family caregiver role and involvement	“This has been more challenging than I thought it was because as a caregiver I am more on my own. The aides, we have arranged for aides to come five times a week for one hour each time, and yesterday the aide could not come and I was on my own for most of the day. And it seemed, yesterday, like a never-ending job helping my husband on to the, to go to the bathroom, bringing him something to drink, just wanting, he just wanting me to be there, bringing him his food, emptying urinals.” (1027)
	Communication challenges with hospice care team members	“The last 24 hours have been a little frustrating because we can’t get a hold of the hospice. We’ve had a lot of difficulty. I leave messages for the nurse, we needed some prescriptions—couldn’t get them—finally got a hold of an on-call nurse in the night and she ordered them.”(1077)

HCC identified a dissonance between how they “should” feel and how they actually feel, which contributed to their experiences of uncertainty. One caregiver described being ready for the care recipient’s death, but also feeling guilty about this readiness: “I feel like I’m in purgatory waiting for this event to happen. Wanting it and feeling guilty for wanting it. Just wanting it to be all over.” Another caregiver described feeling conflicted about expressing anger: “I had a, I’ll call it a meltdown, a couple of days ago. I ended up screaming at my husband and crying for a couple of hours.”

Caregivers also felt that they were alone in this experience and had no outlet to express their feelings: “Today I was just dealing with my own emotions and feelings of being very alone in the situation.” One caregiver described the challenge of having to provide reassurance and manage other people’s emotions related to imminent death:

It’s difficult to be in a position of feeling the need to be somewhat reassuring of people who visit that what he’s doing is ok. When people want him to get better I don’t think it’s my place to say ‘No he won’t get better’…it’s kind of difficult to be in the real moment.

A number of caregivers were also managing their own health concerns and noted their worries about how this would affect their ability to fulfill their caregiving role. This included both managing acute illnesses and injuries, chronic conditions, and new diagnoses the caregivers received just prior to or during their EOL caregiving experience. This caregiver described how a dental emergency created additional stress and concern and would complicate EOL caregiving:

My tooth fell apart yesterday after I saw the dentist and then the rest of it came apart tonight as I was brushing my teeth. I’m really concerned that it’s going to break off and I’m going to have to have it pulled. Have to have an implant or something. It’s really bad timing to have to deal with this on top of everything that my husband’s going through.

Another caregiver described feeling concerned if their health made it so they could not provide care: “I am kind of worried who is going to be his caretaker if I am no longer here or no longer able to do it.”

Finally, caregivers described a sense of helplessness with being able to support the patient: “. . .that sense of helplessness is probably a thing I’ve experienced the most. It’s not a frustration. . . it’s a sense of helplessness.” Along with helplessness, caregivers felt like they occupied a liminal space, unable to plan or progress beyond their hospice caregiving situation: “The uncertainty of the situation is really getting to me. I can’t plan anything, I can’t do anything.” Another caregiver described putting their life on hold and living for the care recipient and not themselves: “Basically you put your own life on hold. You live your life for the person that you are caring for. It is brutal and exhausting both mentally and physically.”

Unmet Needs

Unmet needs reported by HCC related to three topics: 1) Unclear and unmet expectations regarding the nature and availability of hospice care team support; 2) Not foreseeing or understanding the extent of hospice family caregiver role and involvement beforehand; and 3) Communication challenges with hospice care team members (see Table 2).

When discussing unclear or unmet expectations regarding hospice care team support, HCC reported feeling abandoned by hospice staff. One caregiver stated: “I’m just finding that, probably because of my perception of what hospice was, I’m feeling abandoned, alone, and disappointed. . . I thought there would be more frequent visits, more accessibility.” This sense of feeling abandoned occurred on weekends or when caregivers needed support and received no follow-up from the hospice care team. Caregivers also described not receiving enough respite and needing more help: “Basically I just feel that I’m doing the hard stuff all on my own. No respite, no break, it’s hard to get a break.” This also encompassed feeling trapped, like they could not go anywhere, just needing an hour to themselves, and needing more real-time help with procedures or symptom management. Caregivers also identified a lack of anticipatory planning for issues that arose during hospice care, such as worsening symptoms or changes consistent with the dying process. They felt that they and the hospice care team were reacting to rather than anticipating change: “I’m always distressed and upset as new symptoms appear. Some of which are due to the disease and sometimes they’re just due to something else.”

Hospice cancer caregivers described not foreseeing or understanding the extent of their role and involvement in symptom management and supporting the dying process for the care recipient. They discussed the difficulty of coordinating other care needs such as dental care or social interactions: “The past 24 hours have been difficult. She has had some difficult dental work done. Not all of these related to her cancer but certainly her cancer diagnosis has made the dental work more problematic or complicated.” They also identified not understanding how much hands-on care would be required from them. One caregiver stated: “Now the real nursing care that I’m having to give comes in. I just don’t like it. I’m resentful that he’s like he is.”

Communication with the hospice care team was another unmet need identified by HCC. Caregivers did not feel confident telling hospice care team members what they think the patient needs, including treatment changes or care that aligns with their expectations: “I was not happy with myself for not being more strong and expressing my feelings and telling the nurse what I thought should be done and I don’t know.” Caregivers also discussed finding it difficult to retain information they were given by the hospice care team: “They do give you the tools that you need it’s just hard to absorb everything.” Caregivers expressed a great deal of distress with not receiving clear or early enough communication regarding the dying process and grief: “I’m dumbfounded that nobody thought to tell me that this was going to happen as the tumor progressed.” In addition to this, caregivers described feeling that more education and information was needed to reduce the burden on them: “I think it would be helpful for the medical professional when they put somebody onto home hospice…. Particularly when they have a DNR/ DNI order that they explain in detail what some of that can mean to a person or to a family.”

Discussion

This study, with real-time audio diaries recorded by HCC during the EOL caregiving periods, provided perspective regarding their daily experiences and needs. Our findings suggested that uncertainty overlays the hospice cancer caregivers’ experiences of burden and unmet needs. This occurred within their daily, personal contexts that may be influenced by the hospice care team, the dying process, and other external support systems. Much of this uncertainty included the course of illness, the perceived gaps in support and communication provided by the hospice care team, HCCs’ emotional responses, HCC role ambiguity, and management of HCCs’ own health concerns.¹¹ Other research suggests that the bulk of emotional support related to hospice caregiving is more available during the bereavement period, even though there is anticipatory grief to navigate.^22,23

Hospice cancer caregivers reported multiple burdens including the cognitive dissonance of how they thought they should feel and how they actually felt. Caregiving does come with rewards, but HCC may not have a way to frame the narrative of their caregiving experience that addresses both the challenges and the positive aspects.²⁴ In line with this, HCC reported feeling alone during the caregiving experience, without an outlet to express their feelings. Interestingly, caregivers described feeling responsible for others’ feelings. Caregivers providing reassurance (care recipient, family, and friends) is a current research gap related to caregiver burden. These complex emotions experienced by HCC contribute to overall uncertainty in making meaning of end-of-life experiences.^12–13

Additional burdens noted by HCC were concerns about their own health and subsequent patient impact and feeling helpless to change their situation, because they were in a liminal space. When discussing their own health concerns, HCC reported the additional burdens this caused due to time and energy, as well as uncertainty about who would care for the care recipient. Uncertainty was captured with caregivers’ descriptions of feeling helpless to control the course of the dying process and their own lives due to being “put on hold” with hospice caregiving. This state of waiting and uncertainty may be one of the key pre-death burdens where the hospice care team can provide substantial support. Honest conversations about uncertainty and the challenges of uncertainty for HCC may address both the emotional strain and support needs for HCC.²⁵

Caregivers reported a mismatch between what they expected from the HCT and the actual support they received. In a previous study, caregivers noted that their involvement in decision making was disproportionate to the responsibilities they had.²⁶ In addition, prior research has noted that caregivers experience frustration with health care systems and look for reliability along with assurance, empathy, and responsiveness from their health care team.²⁷ Consistent provision of assessment and support by the hospice care team can result in greater caregiver quality of life and met service expectations.^27–28

Hospice family caregivers reported uncertainty related to their own role, including the amount of time and effort required to care for the care recipient and the extent to which they would be facilitating other care. Hospice family caregivers play an important, but sometimes ambiguous role in the hospice care team—they are both team member and patient (family as the unit of care).²⁹ They bear the largest responsibility for care delivery in the home, yet communication about their role, including tasks, time, and energy does not always occur clearly or effectively.²⁹

In addition to the lack of role clarity HCC felt, they also reported lack of clear communication with the hospice care team, encompassing issues such as advocating for needed care, difficulty retaining information provided from the hospice care team, and uncertainty related to the demands of caregiving and the dying process. Palliative and hospice care research on communication often focuses on end-of-life discussions³⁰ or caregiver knowledge and skill acquisition.³¹ Yet, there are multiple communication needs and experiences within the hospice caregiving trajectory, including uncertainty and emotional/existential distress. Empathic listening and acknowledgement of uncertainty with the hospice caregiving experience are strategies that can promote healing and support for family caregivers.^32–33 While this is the ideal, the clinical reality may be quite different. [Blinded for Review]²⁸ noted that home hospice nurse visits to patient-caregiver dyads primarily focused on physical care, with nurses speaking more than caregivers. Limited conversations about the dying process, symptom changes and management, or support needs may not be enough to support caregivers during this challenging caregiving process. More frequent follow-up, clinicians trained in therapeutic assessment and communication, and creative care delivery methods are needed.³⁴ Daily audio diaries could be reviewed and summarized by a hospice care team member to ensure that HCC needs are met, potentially avoiding crises. The onus for this does not solely land on the hospice care team, but on systems level issues related to hospice care delivery in the U.S., such as workforce training, accessibility of technology and broadband internet, and funding/reimbursement mechanisms.^35–36

Clinical Implications

The burdens and unmet needs identified by HCC address some distinct areas of clinical impact for HCTs, including communication with HCC, provision of respite and supportive resources, and clearly and fully addressing the well-being of HCCs. Ideally, hospice care is family-centered, but often it still revolves around the needs of care recipient.^37–38 Intentional provision of support and care for the HCC may address their burden and unmet needs.³⁹ This would include targeted visits from the chaplain, social worker, and nurse focused on the caregiver burden and needs.⁴⁰ In line with this is more robust coverage from Medicare and other insurance providers to address hospice family caregiver needs.³⁵ This financial investment in family caregivers would support their needs and honor their immense economic contributions to chronic illness and palliative care.⁴¹

Limitations

While this study is among the first of its kind and has findings that both align with and further current understanding of HCC burden and unmet needs, there are limitations. First is the inclusion of two different kinds of diary prompts, because the diary prompts themselves could have yielded different data from the caregivers. In addition, the caregivers themselves were mostly white, limiting transferability to diverse populations. Future research with a more diverse sample and with corresponding quantitative metrics of caregiver unmet needs and burden during hospice caregiving and bereavement may build upon or expand our findings.

Conclusion

Our findings, gleaned from real-time audio diary data from HCC, suggest that these caregivers experience significant uncertainty related to burden and unmet needs throughout hospice care. These burdens and unmet needs span their experiences with the hospice care team, navigating their own health and response to impending death without feeling supported by both the hospice care team and other members of their support system. These caregivers are fundamental to care delivery for home hospice care. Structural changes within hospice care delivery and reimbursement may be needed to support these caregivers’ well-being through end-of-of life.