Abstract
Context.
Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being.
Objectives.
1) Assess home hospice caregivers’ use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms.
Methods.
Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes.
Results.
Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, p=.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%).
Conclusions.
Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions.
Keywords: hospice, end of life, caregiver, cancer, patient-reported outcomes, audio diaries, symptom management
Background
Hospice services delivered in the home setting need to address both the patient and family caregiver’s end-of-life (EOL) support needs. (1-3) Hospice family caregivers receive support from professional hospice care providers who coordinate care, assess symptoms, adjust medications, assist with bathing, and provide information along the EOL trajectory. Most daily patient care, however, is performed by family caregivers, who are also responsible for making critical decisions that directly impact patients’ EOL experiences. (4, 5) The risks for stress, burden, physical illness, and psychosocial distress for hospice caregivers are high, as is the need for effective support to mitigate these risks. (6, 7) Caregivers can also experience physical and psychological symptoms related to their own illnesses, the strain of EOL caregiving, or both. (8, 9) These risks are present for all hospice family caregivers but may be particularly impactful for those of advanced cancer patients, whose EOL trajectory of cancer patients is often shorter, more rapid, and more precipitous in final days before death compared with other diagnoses.(10) Cancer hospice patients also have the shortest median length of stay among major admitting diagnoses (11) which can make it challenging to track and manage rapidly changing symptoms.
Family caregivers derive benefits from both periodic assessments of their own health and well-being and opportunities to reflect on and process their experiences. (12) Events and experiences that occur during hospice caregiving can positively or negatively affect the bereavement experience, and caregivers have reported having unmet support needs during EOL caregiving. (13) For example, unacknowledged anticipatory grief can be particularly challenging for hospice family caregivers and, if left unaddressed, is associated with exhaustion and worse mental health and bereavement outcomes. (14)
Family caregivers can also benefit from reflective practices such as journaling and keeping diaries. (15) Reflective journaling has been associated with increased self-efficacy and the ability of cancer caregivers to provide high-quality social support to patients. (16) Caregiver diaries can also provide a mechanism for probing and clarifying symptoms and offer a space for processing difficult emotions and meaningmaking. (17) While written or typed journals and diaries have long been used clinically and in research, more recent work examines the utility and potential benefits of recording audio diaries. (12, 18) Compared with text-based diaries, audio diaries—especially those recorded routinely and temporally close to the focal topic or event—may enhance the immediacy and accuracy of caregivers’ reporting and reflection. (19) Prior research suggests that the act of verbalizing vs. writing or typing may also activate different cognitive processes to bring the topic of reporting or reflection into more immediate, active awareness while also reducing tendencies to filter or edit thoughts. (17, 20)
Previous research has also demonstrated the feasibility and benefit of family caregivers’ prospective reporting of patient-reported outcomes for reducing ER visits and improving quality of life, and patient care. (21, 22) Less has been done to elicit caregiver-reported outcomes for both perceptions of patient symptoms and caregiver wellbeing. Pairing longitudinal audio or text-based journaling to PRO platforms has the potential to improve caregiver support and outcomes and to date has not been studied. (23)
Purpose
The purpose of this study was threefold. First, we assessed the use of prospective, longitudinal audio diaries, along with routine IVR-automated caregiver-reported patient symptoms and caregiver well-being indicators, by cancer family caregivers engaged in providing home hospice care. Second, we explored a patient-focused prompt eliciting description of patient symptoms, and a caregiver-focused prompt eliciting reflection on caregiving-related thoughts and feelings, to see which generated longer diaries and more new information. Third, to assess whether diary data could augment automated caregiver-reported symptom-tracking systems, we identified the patient and caregiver symptoms most frequently mentioned in the diaries that were also tracked in daily IVR ratings and identified additional symptoms not assessed by the IVR.
Methods
Design.
This was a multi-site, mixed methods prospective study funded by the National Institute of Nursing Research (NR016249) and approved by the University of Utah IRB. A detailed description of study procedures was previously reported. (1, 24)
Eligibility and Recruitment.
Eligible participants were ≥18 years of age, able to speak and read English, and were nonparent 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. A partnership with the Palliative Care Research Cooperative supported the identification of study sites. Participants were recruited from four hospice agencies located in four US states in the Northeast, Southeast, Midwest, and Intermountain West between 2017 and 2020. Research staff screened hospice admissions records to identify newly-admitted hospice patients with eligible kin and non-kin caregivers who were contacted by phone to assess interest in participation and screen for eligibility. Research staff scheduled in-home follow-up visits to answer questions and consent caregivers. Recruitment details were previously reported (22) and are outlined in Figure 1.
Figure 1.
Caregiver Recruitment into Daily IVR Reports and Optional Audio Diaries
Data Collection.
Caregivers completed baseline surveys, including demographic information. They received a manual describing 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 up until the day of patient death to report patient symptoms (pain, confusion, constipation/diarrhea, fatigue, depressed mood, anxiety/nervousness, trouble sleeping, poor appetite) and their own symptoms (fatigue, trouble sleeping, depressed mood, anxiety/nervousness, spiritual distress) over the previous 24 hours. Caregivers reported whether the patient and they were experiencing each symptom that day (yes/no) and rated symptoms on a severity scale of 0-10 with 10 being the highest severity. Selection of both patient and caregiver symptoms were informed by previous work (21, 25) and validated by a panel of palliative care and hospice experts as common cancer-related EOL symptoms and the most common caregiver concerns.
Audio Diaries.
Participants were then asked to record an audio diary at the end of each IVR report during the hospice caregiving period. Participants were randomly assigned to receive one of two types of audio prompts throughout the study, to explore whether there would be differences in caregivers’ responses when asked to focus on the patient vs. when asked to focus on themselves. The prompts, piloted in this study, were developed over a series of meetings with interdisciplinary hospice researchers led by the study PI (LE) who is a licensed clinical psychologist with experience in designing and testing caregiver and patient communication interventions. A patient-focused prompt asked caregivers to describe more about how the patient was feeling and other symptoms not assessed in the IVR survey: “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. ” A caregiver-focused prompt asked caregivers to reflect on their own feelings and experiences as a hospice family caregiver: “Tell me your deepest thoughts and feelings about what you are going through. Talk about good and bad things that happened today. ”
Data Analysis
Indicators of feasibility included the proportion of times caregivers recorded diaries relative to the number of opportunities to record, recording length, and presence/absence of new information. We used descriptive statistics to summarize and compare caregiver demographic data and diary characteristics and to make between-group comparisons based on prompt type. Because the diary variables were not normally distributed, nonparametric tests were used to determine differences between groups.
Before transcription, team members reviewed all audio recordings labeled by participant ID and diary number. Three types of recordings were identified based on diary length and whether new information was reported and coded as follows: No diary meant that the participant had the opportunity to record a diary (i.e., answered the call and completed at least part of the daily IVR survey) but did not say anything or hung up before the diary prompt. In low-information recordings, participants spoke for < 5 seconds and/or did not share any new or in-depth information, but they did speak (e.g., “I don’t have anything new today”). In new-information diary recordings, participants spoke for ≥ 5 seconds and added new information that expanded on IVR ratings or introduced new concerns or topics.
All low- and new-information audio diaries were transcribed and labeled by prompt type. Using NVivo (26) a team of four coders coded all pre-death diaries for both patient and caregiver symptoms, adapting a procedure for enhancing intercoder reliability for complex qualitative data. (27) Coding occurred in a series of six steps. First, the lead author (KGC) constructed a codebook defining each IVR-tracked patient and caregiver symptom and an “other symptoms” code to capture symptoms reported in diaries but not included in the IVR and used these to code all diaries. Second, a team member with qualitative expertise (SJR) purposively selected a subset of six new-information diaries containing all symptom codes from each prompt group. Third, she exported a copy of these 12 diaries (previously coded by the lead author in step 1) with coded areas highlighted but coding labels removed and trained two other coders (MTH, MV) on the codebook. Fourth, these team members then coded the highlighted areas in the diary subset, following the codebook and Cohen’s kappa was calculated to assess inter-rater reliability (κ=0.93). Fifth, the team then independently coded the remaining diaries using the codebook-defined codes. Finally, the team inductively coded the data captured within the “other symptoms” code; inductive coding was reviewed, discussed, and distilled into a list of additional symptoms mentioned by caregivers and not assessed by IVR surveys.
Finally, we examined the frequency with which caregivers mentioned IVR-congruent patient and caregiver symptoms in audio diaries, and we counted and described the additional symptoms mentioned by caregivers that were not captured in IVR reports. We grouped similar additional symptoms into descriptive categories based on team discussion and consensus.
Results
Demographics
Table 1 presents demographic data for all participants who had an opportunity to record a diary (n=70) across both prompt groups. There were no significant demographic differences between prompt groups. Participants’ average age was 58.99 (SD=13.70, 27-86). Most were white (n=62, 83.78%), women (n=53, 75.70%), non-Hispanic (n=61, 87.1%), married (n=46, 65.70%), had completed at least some college or vocational school (n=58, 82.86%), were not currently employed (n=32, 45.70%), and had a total household income ≥ $75K (n=23, 32.90%). Caregivers were closely split between being spouses or partners of the person they cared for (n=31, 44.30%) or adult children (n=29, 41.40%).
Table 1.
Demographics of hospice family caregiver audio diary participants
| All (n=70) | Patient-focused Group (n=37) |
Caregiver-focused Group (n=33) |
|
|---|---|---|---|
| Yrs. (SD, range) | Yrs. (SD, range) | Yrs. (SD, range) | |
| Age | 58.99 (13.70, 27-86) | 56.73 (13.4, 30-82) | 61.77 (13.77, 27-86) |
| Gender | N (%) | n (%) | n (%) |
| Woman | 53 (75.70) | 29 (78.40) | 24 (72.70) |
| Man | 17 (24.30) | 8 (21.60) | 9 (27.30) |
| Race | |||
| American Indian, Alaska Native, Aleut, Eskimo | 1 (1.35) | 1 (2.70) | -- |
| Asian | 2 (2.70) | 2 (5.40) | -- |
| Native Hawaiian or Other Pacific Islander | -- | -- | -- |
| Black or African American | 2 (2.70) | 2 (5.40) | -- |
| White | 62 (83.78) | 30 (81.10) | 29 (90.60) |
| Multiple races | 6 (8.11) | 2 (5.40) | 3 (9.10) |
| Missing | 1 (1.35) | -- | 1 (3.00) |
| Orientation | |||
| Heterosexual | 63 (90) | 32 (86.50) | 31 (93.90) |
| Lesbian or Gay | 3 (4.29) | 1 (2.70) | 1 (3.0) |
| Bisexual | 2 (2.9) | 1 (2.70) | 1 (3,0) |
| Missing | 2 (2.9) | 2 (5.40) | -- |
| Transgender or cisgender | |||
| Transgender | 2 (2.9) | 1 (2.70) | 1 (3.0) |
| Cisgender | 68 (97.1) | 36 (97.30) | 36 (97.0) |
| Ethnicity | |||
| Hispanic | 8 (11.40) | 3 (8.11) | 5 (15.20) |
| Not Hispanic | 61 (87.10) | 34 (91.89) | 27 (81.80) |
| Missing | 1 (1.40) | -- | 1 (3.00) |
| Relationship Status | |||
| Single (never married) | 4 (5.70) | 3 (8.10) | 1 (3.00) |
| Separated or divorced | 13 (18.60) | 8 (21.62) | 5 (15.20) |
| Married | 46 (65.70) | 22 (59.46) | 24 (72.70) |
| Committed relationship | 4 (5.70) | 2 (5.40) | 2 (6.10) |
| Widowed/Widower | 2 (2.90) | 2 (5.40) | -- |
| Missing | 1 (1.40) | -- | 1 (3.0) |
| Education | |||
| High school graduate or equivalent | 10 (14.30) | 3 (8.10) | 7 (21.20) |
| Some college or vocational school | 26 (37.10) | 13 (35.14) | 13 (39.40) |
| College graduate (4 years) | 16 (22.90) | 11 (29.73) | 5 (15.20) |
| Some graduate or professional school | 4 (5.70) | 3 (8.10) | 1 (3.0) |
| Graduate or professional degree | 12 (17.10) | 6 (16.22) | 6 (18.20) |
| Missing | 2 (2.90) | 1 (2.70) | 1 (3.0) |
| Current Employment | |||
| No | 32 (45.70) | 14 (37.84) | 18 (54.50) |
| Full time | 25 (35.70) | 16 (43.24) | 9 (27.30) |
| Part time | 11 (15.70) | 6 (16.22) | 5 (15.20) |
| Missing | 2 (2.90) | 1 (2.70) | 1 (3.0) |
| Income | |||
| <$10,000 | 1 (1.40) | -- | 1 (2.00) |
| $10,000-$24,999 | 11 (15.70) | 5 (13.51) | 6 (18.20) |
| $25,000-$39,999 | 11 (15.70) | 6 (16.22) | 5 (15.20) |
| $40,000-$49,999 | 8 (11.40) | 5 (13.51) | 3 (9.10) |
| $50,000-$74,999 | 11 (15.60) | 6 (16.22) | 5 (15.20) |
| $75,000 or more | 23 (32.90) | 14 (27.84) | 9 (27.30) |
| Missing | 5 (7.10) | 1 (2.70) | 4 (12.12) |
| Religion | |||
| Catholic | 15 (21.40) | 10 (27.03) | 5 (15.20) |
| Jewish | 4 (5.70) | 2 (5.41) | 2 (6.10) |
| Latter Day Saints | 15 (21.40) | 6 (16.22) | 9 (27.30) |
| Protestant | 9 (12.90) | 6 (16.22) | 3 (9.10) |
| Other | 3 (4.30) | 1 (2.70) | 2 (6.10) |
| No religious preference | 23 (32.90) | 12 (32.43) | 11 (33.30) |
| Missing | 1 (1.40) | -- | 1 (3.00) |
| Relationship to patient | |||
| Spouse/Partner | 31 (44.30) | 14 (27.84) | 17 (51.50) |
| Sibling | 3 (4.30) | 3 (8.11) | -- |
| Child | 29 (41.40) | 18 (48.65) | 11 (33.30) |
| Friend | 3 (4.30) | 1 (2.70) | 2 (6.10) |
| Other | 3 (4.30) | 1 (2.70) | 2 (6.10) |
| Missing | 1 (1.40) | -- | 1 (3.00) |
| Length of hospice caregiving period | |||
| Days to patient death (Median) | 32.50 (range 1-379) | 32.50 (range 1-372) | 34 (range 4-379) |
Feasibility Results
Out of 102 participants who initially consented and enrolled, 32 (31%) did not call or enter data into the IVR system and therefore did not engage the optional audio diary function; 15 of these were in the patient-focused group, 15 were in the caregiver-focused group, and 2 dropped before prompt assignment. Four additional participants enrolled in the caregiver-focused prompt group and their care recipient died shortly thereafter, and they were unable to complete IVR ratings or diaries during the caregiving period.
Seventy participants made IVR calls and thus had an opportunity to record at least 1 diary and overall, participants recorded a diary 61.73% of the time (Median=83.33, SD=41.73, range=0-100). Fifty-four participants (77.14%) recorded something at least once during the caregiving period (M=8.4, Median=3.00, SD=13.53, range=1-66 diary recordings), and n=27 (38.57%) recorded a diary every time they reported symptoms. Fifty-one participants (72.86%) recorded at least one new-information diary, and there was a total of 451 new-information diaries overall Twenty-seven (38.57%) recorded at least one low-information diary. Thirteen participants (18.57%) did not record either a high- or low-information diary.
Overall, participants recorded a new-information diary 49.57% of the time (Median=50.00, SD=40.68, range 0-55), a low-information diary 11.73% of the time (Median=0.00, SD=21.29, range=0-63), and did not record 36.25% of the time (Median=0.10, SD=41.30, range=0-101). The median length of new-information diaries was 53.00 seconds (SD=53.36) and participants spent an average of 9.92 total minutes recording new-information diaries during the study (Median=2.91 minutes, SD=16.83, range=5 seconds-84.01 minutes.)
Comparing Prompt Types
Twenty-seven participants in the caregiver-focused group (81.82%) recorded ≥ one new-information diary compared with n=24 (64.86%) of participants in the patient-focused group (U=451.50, p=.01). There was no difference in the number of participants who recorded ≥ one low-information diary (n=14, 42.42% in caregiver-focused group vs. n=13, 35.14% in patient-focused group; U=492.00, p=.105). Similarly, there was no difference in the number of participants who chose not to record a diary at least once (n=25, 67.57% in patient-focused group vs. n=18, 54.55% in caregiver-focused group, U=535.00, p=.275).
Table 2 shows a between-prompt comparison by diary type and proportion of recording opportunities used to record a diary. The caregiver-focused group recorded significantly more diaries overall (high- and low-information combined) than the patient-focused group (Median=2.00, SD=7.03 vs. Median=4.00, SD=17.82; U=437.50, p=.04). More participants in the patient-focused group did not record any diaries during the study compared with those in the caregiver-focused group (n=11, 29.7% vs. n=2, 6.1%; U=466.00, p=.012), and did not record anything when given the opportunity significantly more often (U=437.50, p=.036). There was no difference between groups in the median recording length of new-information diaries (patient-focused group Median=21.00, SD=40.29 vs. caregiver-focused group Median=44.0, SD=34.36; U=482.50, p=.128).
Table 2.
Comparison of proportion of type of diaries by prompt type
| Prompt Type | New- information Diaries |
Low- information Diaries |
New + Low- information diaries |
Percent of Reporting Opportunities Used to Record a Diary |
|
|---|---|---|---|---|---|
| Patient-focused | Median by type | 1.00 | †0.00 | 2.00 | ‡50.00 |
| Std. Deviation | 6.82 | 1.12 | 7.03 | 42.17 | |
| Caregiver-focused | Median by type | 3.00 | 0.00 | ‡4.00 | 95.92 |
| Std. Deviation | 14.03 | 11.40 | 17.82 | 39.13 | |
Data were not normally distributed
Value indicates skewness of data as n=19 participants (n=13 in patient-focused group, n=6 in caregiver-focused group) did not record any low-information diaries
U=437.500, p=.036
Prevalence of IVR-Tracked Symptoms
Table 3 shows the frequency with which caregivers mentioned the IVR-tracked patient and caregiver symptoms in the audio diaries and provides exemplar quotes for each symptom.
Table 3.
Prevalence of IVR-tracked patient and caregiver symptoms reported in audio diaries
| Patient | ||
|---|---|---|
| Symptom | Frequency (%) |
Exemplary Quote |
| Fatigue or weakness | 138 (26.54) | He has declined significantly. He can’t stand, he can’t even sit up anymore. We’ve got him in a hospital bed, and we put a catheter in today. He’ll never walk again. He’ll never sit up on his own. |
| Pain | 120 (23.08) | It’s just that when he has so much pain it is hard for him to think straight or to rationalize correctly. But once the pain is gone, he is fine. And because of the pain he knows that the cancer is advancing. |
| Confusion | 83 (15.96) | Evidently a couple of days ago he said he thought he heard my voice calling him and so he wandered around outside looking for a while. He didn’t get lost which was sort of amazing and he did come back in the house. And he didn’t realize he’d ever had cancer when my daughter talked to him this morning. |
| Trouble eating, poor appetite | 55 (10.58) | She ate two bites, not even and a sip of coffee and that was it. That was her whole meal yesterday but literally that was more than she’d eaten for some days, for a few days at a time. |
| Trouble sleeping | 41 (7.88) | My husband was getting upset because he couldn’t sleep that night. He was sitting up in our TV room. |
| Depressed mood | 30 (5.77) | For the first time in a long time, she was very down about how she’s doing and how long she’ll be able to hold on. |
| Constipation or diarrhea | 28 (5.38) | He has constipation- has not had a bowl movement probably this will be day 4 – he doesn’t want to take Zena or parallax often. |
| Anxiety or nervousness | 25 (4.81) | The last thing I want is for her to be experiencing any kind of negative emotions. I don’t want her worrying about anything, I don’t want her thinking about bad things that happened in the past, and she said she just can’t stop thinking about these things. |
| Caregiver | ||
| Anxiety or nervousness | 86 (47.51) | In any case, we don’t know. And so new symptoms are what would I say…. Worrisome, and different symptoms are worrisome, and you always wonder. |
| Fatigue | 40 (22.10) | I’m extremely tired. I’m so fricking tired I can’t get anything straight. I’m so tired. |
| Depressed mood | 29 (16.02) | This has been a difficult day for me emotionally where I have just started crying from time to time and I don’t even know why I’m crying. |
| Trouble sleeping | 17 (9.39) | I’ve been woken up every 3 to 4 hours by my relative who has been having a very hard time breathing and so I’ve been very tired. |
| Spiritual distress | 9 (4.97) | You feel like you lose your life because you have no freedom anymore. You’re tied to home and tied to caring for them. You love them and stuff, so you stay and do it but it’s very emotional, very draining. |
There was a total of 551 mentions of IVR-tracked patient symptoms (Median=3.5, SD=15.45, range=0-65) and n=52 participants (70.27%) mentioned ≥ 1 patient-related IVR-tracked symptom. The patient symptoms most frequently mentioned by caregivers were fatigue or weakness (n=138, 26.54% of IVR-tracked patient symptoms) followed by pain (n=120, 23.08%). The least frequently mentioned patient symptoms were constipation or diarrhea (n=28, 5.38%) and anxiety or nervousness (n=25, 4.81%).
There were 181 mentions of IVR-tracked caregiver symptoms (Median=1.00, SD=7.70, range=0-53), and n=31 participants (41.89%) mentioned ≥ 1 IVR-tracked caregiver symptom. Most frequently mentioned was anxiety or nervousness (n=86, 47.51% of total HFC symptoms mentioned), occurring more than twice as often as the next most prevalent caregiver symptom, fatigue (n=40, 22.10%) and followed by depressed mood (n=29, 16.02). Trouble sleeping (n=17, 9.39%) and spiritual distress (n=9, 4.97%) were the least prevalent caregiver symptoms.
Prevalence of Additional Symptoms
Table 4 shows the frequency of “other” patient and caregiver symptoms the caregivers noted in the audio diaries with exemplar quotes. Among the 451 new-information diaries, n=118 entries (26.16%) reported ≥ 1 additional patient symptom that the daily IVR surveys did not track. Increased sleepiness and/or time spent sleeping was the most frequently cited “other” patient symptom noted by caregivers (n=40, 26.32%), followed by breathing difficulties (n=37, 24.32%) and edema and swelling (n=16, 10.53%).
Table 4.
Prevalence of additional patient and caregiver symptoms reported in audio diaries
| Patient | ||
|---|---|---|
| Symptom | Frequency (%) | Exemplary Quote |
| Increasing sleepiness/sleep | 40 (26.32) | [His] symptoms of falling asleep all day long is getting worse and worse. He’s been asleep most of the day. |
| Breathing difficulties | 37 (24.32) | She has been wheezing really bad, I mean you can hear her from far away, and she says that she can’t get enough air. Sometimes she feels like she’s not able to catch her breath. |
| Edema and swelling | 16 (10.53) | I’m amazed that his feet don’t hurt because the edema is so bad. I mean the skin is just so stretched out. |
| Nausea and vomiting | 10 (6.58) | He’s been having a lot of nausea and a lot of vomiting in the last several days. Really in the last 24 hours. |
| Skin issues (e.g., breakdown, ulcers, bruising) | 10 (6.58) | She has begun to develop a bedsore on her back, lower back which has been distressing. And very distressing for her because it is a symptom that is of course not directly… we’ve gotten used to her cancer and this is something that’s a little bit different and obviously concerning for us. |
| Sensory changes (sight, hearing) | 10 (6.58) | The hearing is still weak. We thought maybe yesterday he heard a little bit but now I don’t think so. That’s the difficult part. Him not being able to hear anything to say. |
| Behavioral changes/difficult behaviors | 7 (4.61) | We had a sleepless night last night because of her restless ness and her actually physically combating in trying to get her medications down. The biggest challenge in my life by the very worst magnitude. |
| Neuropathy | 7 (4.61) | [He] started feeling increased pain in his extremities especially for the last two or three days and increased neuropathy. Which really got him down. This is what he really wants to be able to get over with before he dies so he has a time, a period of time that we can do things in our little bucket list. |
| Communication changes | 5 (3.29) | I feel stressed because he’s lost his voice and he can’t talk and relay his thinking. |
| Dizziness | 4 (2.63) | Extremely dizzy. Difficulty getting up on and off. |
| Seizures/Changes in consciousness | 3 (1.97) | [He] started having seizures when he stands up to pee. And now he can’t get out of bed unless somebody is there with him. So, someone has to be in the room with him all the time. |
| Bleeding | 3 (1.97) | So in the last 24 hours the vaginal bleeding has gotten significantly worse and there’s not really much we can do about it because of how far along she is in the cancer. |
| Caregiver | ||
| Difficult emotions (e.g. guilt, resentment, anger) | 14 (29.17) | I feel like I’m actually her servant and I don’t want to feel that way because I don’t want any hard feelings. I don’t want to begrudge. I don’t want to feel bad about anything because I’m trying to help her. |
| Physical illness that impacts caregiving | 12 (25.00) | What happens when the caretaker really gets sick. I am sick right now. Don’t feel very well but I’ve got to get going. Because there is nobody else to feed my husband. |
| Pain | 12 (25.00) | It has more to do with I’m arthritic and old and it’s raining and I hurt. |
| Stress | 10 (20.83) | It can be stressful it’s basically a rollercoaster and each day is drastically different than the other. |
Caregivers mentioned their own “other” symptoms 48 times, and n=38 of new-information diaries (10.64%) reported ≥ 1 additional caregiver symptom not tracked by IVR reporting. The most frequently mentioned “other” caregiver symptoms were negative emotions, such as guilt, anger, and resentment (n=14, 29.17%). This was followed by their own physical illness and related symptoms (e.g., GI upset, respiratory infections, n=12, 25.00%), pain (n=12, 25.00%), and stress (n=10, 20.83%)
Discussion
Our results suggest that asking family caregivers to record audio diaries during the home hospice caregiving period is feasible and offers a viable avenue for communication of needs between caregivers, patients, and the hospice care team. More than three-quarters of the participants recorded a diary when given the opportunity, 73% recorded at least one new-information diary, and more than one-third used the audio diary option on every IVR report they gave. The median recording time was 53 seconds, adding less than a minute to routine automated reporting, limiting additional burden for family caregivers.
We also found that participants responding to the caregiver-focused prompt recorded significantly more diaries than those in the patient-focused prompt. Perhaps caregivers in the latter group felt that felt they had already provided detail on patient symptoms, whereas caregiver-focused prompts encouraged caregivers to self-reflect and focus on their own experience. Also, while the length of recordings did not differ the caregiver-focused group recorded more often, which suggests potential utility for prospective, longitudinal, and targeted augmentation of routine caregiver-recorded patient outcome reporting systems. Offering an open-ended, caregiver-driven option to report additional needs and experiences could improve the tailoring and efficiency of EOL care for patients and family caregivers.
Participants in both groups elaborated on IVR-tracked symptoms (Table 3) and additional concerns (Table 4), providing important details about the context of the symptoms that are relevant to understanding support needs. For example, fatigue or weakness and pain are common symptoms in an EOL cancer trajectory, but the context in which they are experienced is a critical consideration for providing effective support. Some family caregivers said patient fatigue and weakness were concerning because they made caregiving more physically demanding; they might benefit from education regarding reducing physical strain, adaptive equipment, and timing activities. Other caregivers described patient fatigue and weakness as distressing because they signaled reduced vitality and “fading away”; emotional and spiritual support may be helpful in this context. Increased patient sleepiness and breathing difficulties were the most prevalent and distressing additional patient symptoms captured in the diaries, and both are typically related to the progression of EOL symptoms. Normalizing this for caregivers at the time it is occurring would help alleviate distress. This additional contextual detail may help determine educational guidance and support interventions that are most needed by hospice family caregivers.
Since audio diaries tap thoughts and feelings that are most immediate at the time of recording (17, 19, 20) they also illuminate caregivers’ own current and long-term needs. Caregivers’ most prevalent IVR-tracked symptom was anxiety/nervousness, occurring more than twice as often as any other symptom. Similarly, their most frequently coded additional concern was distress related to difficult emotions including guilt, anger, and resentment. This suggests that mental health and emotional well-being during EOL caregiving may be areas where they lack support and has implications for their bereavement outcomes and long-term health.
Providing opportunities for family caregivers to narrate and reflect may also offer therapeutic value. (19) Hospice caregiving can be an isolating experience and family caregivers often have no point of reference for what is normal or common at EOL nor do they always have a place or method to communicate their challenges and needs. (28) Incorporating insights gleaned from diary content patterns and changes over time could enhance providers’ understanding of symptom experiences and unmet needs, and subsequently their communication with family caregivers, and promote better patient and caregiver outcomes. (29) It may also encourage hospice providers to actively include caregivers in their focus on family as the unit of care and help connect the family caregiver more fully to the hospice care team.
Limitations
Our approach was descriptive, so insight gained by comparing the two prompt types was limited. Additional work is needed to establish the feasibility of audio diaries in more socio-demographically diverse caregiver groups providing EOL care at home. Future work should explore variations in prompts to establish characteristics associated with effectiveness, examine how patterns of qualitative symptom reporting in diaries relate to severity reporting, and examine how diary-based caregiver-reported outcomes change over time with caregiver and patient symptoms and outcomes.
Clinical and Research Implications
EOL symptoms and experiences are dynamic. Longitudinal audio diaries offer a cost-effective way to augment systematic tracking of common concerns and emerging issues that affect hospice family caregivers’ ability to provide EOL care, and their mental health and well-being. Audio diaries are generally accessible, needing only a landline or mobile phone, and can be used by participants who may have lower literacy levels or other barriers to participation. Diary data provides important context to help providers to better understand and respond to patient and caregiver needs. Further, audio diaries may provide therapeutic value by creating an outlet for caregivers to express and cognitively process their experiences.
We recommend further study of the use of opened ended prompts in eliciting symptom experiences in addition to the numeric assessments that are typically the focus of patient-reported outcomes assessment systems. This includes assessing the ways providers could use these data and methods for rapid interpretation for clinically relevant information to inform providers’ planning and timely intervention. Developments in machine learning and signal processing may make clinically meaningful interpretation faster and more cost-effective.
Longitudinal analysis is also needed to examine what information can be gained by focusing not only on changes on diary content, but also in linguistic and acoustic features and how these characteristics may align with formal caregiver-reported outcome measures, symptom severity and fluctuations in caregivers’ wellbeing and distress. For example, our future work will report how the audio diaries align temporally with IVR-reported symptoms, severity, and hospice provider responses over the EOL caregiving period.
Conclusion
To our knowledge, this is the first study to use prospective, longitudinal audio diaries with hospice family caregivers. We found that hospice family caregivers will use audio diaries to communicate symptoms and concerns, and that family caregivers experienced their own symptoms and unmet needs—particularly emotional support needs. Audio diaries are an accessible way to allow caregivers to provide context for patient and caregiver symptoms and needs during the hospice caregiving experience not captured through automated caregiver-reported systems exclusively using numeric rating scales. The addition of audio diaries to caregiver-reported automated systems is a feasible and accessible way to provide additional support to hospice family caregivers, with the potential to add value and scalability to home-based cancer care interventions at end of life.
Funding
This work was supported by the National Institute of Nursing Research, Grant/Award Number: NR016249- 01; the National Center for Advancing Translational Sciences of the National Institutes of Health, Grant/Award Numbers: UL1TR001067, UL1TR002538; the University of Utah College of Nursing T32 Interdisciplinary Training in Cancer, Caregiving, and End- of- Life care program, Grant/Award Number: T32NR013456.
Footnotes
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Disclosure
KGC, MCTH, MV, SR, DT, MR, KM, and LE have no conflicts to disclose.
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