When Is the Best Time to Deliver Supportive Interventions to Hospice Family Caregivers? A Multi-Method Study

Abstract

Background and Objectives

While problem-solving interventions can teach caregivers effective coping skills throughout hospice, the optimal timing for introducing such resources remains unclear. We explored how the timing of a problem-solving intervention affects its effectiveness for hospice caregivers.

Research Design and Methods

We conducted a multi-method study analyzing quantitative and qualitative data from a randomized clinical trial of a Problem-solving Intervention to Support Caregivers in End-of-life care Settings (PISCES). Caregivers were randomly assigned to 3 intervention groups: PISCES delivered face-to-face (F2F), PISCES delivered in a hybrid format, and PISCES integrating positive appraisal elements (PISCESplus). We compared the anxiety and depressive symptoms before and after the intervention among 318 caregivers across various stages of hospice. We conducted a content analysis of 45 exit interviews to explore how caregivers perceived PISCES and their hospice experience in relation to its timing.

Results

Caregivers’ anxiety showed significant pre–post differences regardless of the intervention timing, modality, and components. The impact on depressive symptoms differed: While the PISCES F2F group showed significant changes at all timings, only bereaved caregivers had significant changes in the PISCES Hybrid group (p < .001). In the PISCESplus group, caregivers in the midst of hospice and bereaved showed significant changes (p = .043 and <.001, respectively). Three themes emerged from the qualitative analysis: timing for PISCES to be most effective, emotions during various stages of hospice, and the length of PISCES.

Discussion and Implications

Strategically integrating PISCES into hospice practice can help alleviate caregivers’ distress. More work is needed to improve the real-world applicability of caregiver-focused interventions in hospice.

When caring for a terminally ill individual, caregivers—namely those who provide informal or unpaid care to a relative or a friend (AARP and National Alliance for Caregiving, 2020)—play an essential role, both physically and emotionally. For instance, Michaels et al. (2022) conducted a meta-synthesis on end-of-life caregiving in the community settings and identified four phases: managing multiple roles and responsibilities, addressing challenges with poor healthcare organization and fragmented care, utilizing resources to gain support and maintain a safe caregiving environment, and acknowledging that death is approaching. Throughout this time, caregivers strive to cope and carry out various tasks to honor their family members’ final wishes (Michaels et al., 2022; Waldrop et al., 2005). As the care needs of a dying loved one intensify, caregivers provide an average of 41.0–61.3 hr of care per week during the last 12 months (Kumar et al., 2020; Ornstein et al., 2017).

For terminally ill individuals, the interdisciplinary hospice model is considered the gold standard for end-of-life care, offering clinical, psychosocial, spiritual, and emotional support (National Consensus Project for Quality Palliative Care, 2018). While the caregivers are also included in the unit of care within hospice (National Hospice and Palliative Care Organization, 2024), there is a paucity of interventions specifically targeting end-of-life caregivers (Chi et al., 2016). Alshakhs et al. (2023) conducted a scoping review on interventions for caregivers of terminally ill individuals and reported that more than 40% of the literature identified were pilot or feasibility studies. The authors also highlighted that it was unclear whether the interventions could be pragmatically implemented into standard hospice practice. Such results underscore the need for future studies to inform how interventions for hospice caregivers can be effectively integrated into real-world end-of-life settings.

Problem-solving therapy (PST) is a cognitive-behavioral intervention that systematically encourages individuals to adopt adaptive mindsets and teaches them to perform effective problem-solving behaviors (Nezu et al., 2012). Developed based on the relational/problem-solving model of stress (D’Zurilla & Nezu, 2007), PST aims to enhance participants’ coping strategies during stressful times (Nezu et al., 2012). In a previous study, PST was tailored for the hospice setting in an intervention labeled PISCES (Problem-solving Intervention to Support Caregivers in End-of-Life care Settings). In that earlier study, the authors demonstrated PISCES’s efficacy in reducing caregivers’ anxiety and increasing their quality of life when delivered in person (Demiris et al., 2019), highlighting the potential of supportive therapies for hospice caregivers. The delivery modality also played a role in the participants’ acceptance of the intervention as some reported preferring videoconferencing due to scheduling and conveniency issues. In terms of the intervention content, several caregivers mentioned wanting to recognize the positive aspects of caregiving in addition to gaining the skills for effective problem-solving (Demiris et al., 2019).

Despite an evidence base supporting problem-solving interventions such as PISCES for hospice family caregivers (Demiris et al., 2010, 2019; Gregory & Gellis, 2020; Washington et al., 2012), given limited resources and the often unpredictable and complex trajectory of end-of-life care, significant knowledge gaps remain regarding the best timing for introducing new interventions to caregivers (e.g., close to hospice admission or later). Hospice entails major transitions that require caregivers to adjust to changes and new administrative tasks over time. For instance, the initial transition to hospice can be challenging for families as it signals acceptance that their loved ones’ death is likely imminent (El-Jawahri et al., 2017). Bereavement marks another difficult transition, requiring not only emotional support but also assistance with practical matters, such as funeral arrangements and post-death planning (National Consensus Project for Quality Palliative Care, 2018). Logistical issues associated with each transition may also provoke distress among caregivers (Cross et al., 2022). In light of Hebert et al. (2006)’s theoretical framework on caregivers’ preparedness for the potential death of a loved one, being unprepared for these challenging transitions can greatly affect their psychological adjustments and well-being. Interventions such as PISCES can help hospice agencies provide caregivers practical support that is responsive to their individualized needs and improve the end-of-life caregiving experience. Yet, further exploration is needed regarding the timing of such interventions, as well as its effectiveness in relation to various delivery modalities, to increase their translatability into real-world practice.

Therefore, the purpose of this study was to examine how the timing for different modalities of a supportive intervention like PISCES affects its effectiveness. The specific aims were (1) to examine how the timing of the PISCES intervention affected the pre–post intervention changes in hospice caregivers’ anxiety and depressive symptoms and (2) to explore caregivers’ perception toward the timing of PISCES interventions based on their own experiences in hospice.

Method

Based on a three-arm randomized clinical trial (RCT) of the PISCES intervention (ClinicalTrials.gov identifier: NCT03712410), we conducted a quantitative and qualitative analysis in parallel to achieve each specific aim, adopting a multi-method design for this study (Anguera et al., 2018; Johnson et al., 2007). Building on the findings from the aforementioned study testing the effectiveness of PISCES (Demiris et al., 2019), this extended RCT randomly assigned hospice caregivers into three groups: (1) PISCES face-to-face (F2F), (2) PISCES in a hybrid format (i.e., first session conducted in person and the subsequent two sessions delivered via videoconferencing), and (3) a refined version of PISCES integrating a positive appraisal approach and a hybrid delivery format (PISCESplus; Table 1). Each group received three individual sessions, each session lasting approximately 45 min. All participants learned a structured problem-solving process and applied it to a problem of their choice. The study was approved by the Institutional Review Board at the University of Pennsylvania (#828990, February 27, 2018).

Table 1.

PISCES Groups

	PISCES F2F	PISCES Hybrid	PISCESplus
Delivery modality
All sessions delivered in person	√
Session 1 delivered in person, followed by two sessions delivered via Zoom		√	√
Intervention components
Problem-solving skills training	√	√	√
Positive appraisal instruction and practice			√

Notes: F2F = face-to-face; PISCES = Problem-solving Intervention to Support Caregivers in End-of-life care Settings.

Setting and Participants

Informal caregivers, including family caregivers, were recruited from three large hospice agencies located in the eastern United States. Inclusion criteria required participating caregivers to: (1) be 18 years or older, (2) have access to standard phone line or computer with internet access, (3) have sufficient hearing for telephone or internet conversations, and (4) be able to read and speak English as assessed by the research staff. The hospice admission staff inquired whether caregivers were open to being contacted by our research team to learn about the study. If they expressed interest, a member of our team contacted the caregiver to assess eligibility and scheduled a visit to obtain consent.

Quantitative Analysis

The purpose of our quantitative analysis was to compare the pre–post intervention differences in caregivers’ depressive and anxiety symptoms based on the different timings of receiving PISCES. Among 322 participants who completed the postintervention assessment, we extracted data for 318 caregivers. Four participants were excluded because, despite being active caregivers at baseline, they had missing data on their length of hospice service.

Measures

Depressive symptoms

Depressive symptoms were assessed using the total score of the Patient Health Questionnaire nine-item (PHQ-9) scale. PHQ-9 assesses how often caregivers experienced 9 depressive symptoms over the past 2 weeks. Total scores range from 0 to 27, with a higher score indicating higher levels of depressive symptoms (Kroenke et al., 2001). PHQ-9 scores were assessed at baseline and postintervention; the Cronbach’s alpha based on our sample’s baseline PHQ-9 score was 0.85, indicating good internal consistency.

Anxiety symptoms

Anxiety symptoms were assessed using the total score of the seven-item Generalized Anxiety Disorder (GAD-7) scale. Participants were asked how often they had experienced seven anxiety symptoms in the prior 2 weeks. Total scores range from 0 to 21, with a higher score indicating greater severity in anxiety (Spitzer et al., 2006). GAD-7 scores were measured both at baseline and after the intervention; the Cronbach’s alpha for our sample’s baseline GAD-7 score was 0.87, demonstrating acceptable reliability.

Timing of the intervention

Each hospice caregiver received the PISCES intervention at different time points in their hospice journey. The timing of the intervention was categorized three ways: during recent transition to hospice, in the midst of hospice, and bereaved. Such categorization was based on the hospice caregivers’ caregiving status (active caregiver vs bereaved) and the patients’ length of stay in hospice at baseline. Caregivers were considered bereaved if their family member had already passed at baseline. Among others who were actively caregiving, those who were offered the intervention within the initial 14 days of hospice admission at baseline were considered recently transitioned to hospice. This time frame aligns with the first on-site home visit by a nurse mandated by Medicare to supervise the quality of care provided by hospice (Centers for Medicare & Medicaid Services, 2023). Caregivers who were actively caregiving at baseline but were offered the intervention after 14 days of hospice admission were considered being in the midst of hospice.

Caregiver characteristics

Caregivers’ age, gender, race and ethnicity, education level, and relationship to the patient were collected via self-report.

Data analysis

We subdivided the three PISCES groups based on three time points, which resulted in nine subgroups. We performed a two-sided Wilcoxon signed rank test (Wilcoxon, 1945) to determine whether there was a significant change in each subgroup’s depressive and anxiety symptoms before and after the intervention. We set the a priori level of statistical significance at a p value of <.05. Data were analyzed using R version 4.3.2 (R Core Team, 2023).

Qualitative Analysis

The purpose of the qualitative analysis was to explore how hospice caregivers perceived the timing of PISCES interventions in relation to their experience in hospice. We employed a qualitative descriptive approach using the exit interviews. Caregivers were asked about their thoughts on PISCES, including the perceived usefulness, its benefits or disadvantages, whether it should be a part of standard hospice practice, and challenges in navigating different healthcare systems. A subset of the exit interviews was transcribed verbatim by a professional transcriptionist; we selected a purposive sample of 45 hospice caregivers, whose interviews provided insights for the research question.

For our analytic technique, we chose to apply conventional content analysis to attain insights for describing our phenomenon of interest (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005). Conventional content analysis adopts a naturalist paradigm as it involves interpreting meaning from the text content (Hsieh & Shannon, 2005). Given its inductive nature, this approach assumes that the codes and categories are derived directly from the data itself rather than being operationalized by previous knowledge (Elo & Kyngäs, 2008). Conducting a conventional content analysis involves several steps: familiarization with the data, open coding of an initial batch of transcripts to highlight key thoughts and in vivo codes (i.e., first-level coding), grouping codes into categories that share meaning (i.e., second-level coding), applying the established codes to the remaining transcripts and recoding the original ones if necessary, and finally examining and organizing all codes into a hierarchical structure (Hsieh & Shannon, 2005).

We uploaded all transcripts to Atlas.ti software 24.1.1 (ATLAS.ti Scientific Software Development GmbH, 2024) for data storage, coding, and management. The first author (O. Oh) read the transcripts in full and conducted first-level coding on 10 transcripts, highlighting key phrases and generating in vivo codes. These codes were then reviewed by the last author (G. Demiris) and the two authors developed the initial codebook based on the emerging categories. Subsequently, the two authors independently applied second-level coding to five transcripts, later meeting to discuss coding decisions and arrive at consensus regarding any coding discrepancies. The remaining 30 transcripts were then coded by the first author and the codes were discussed with the last author to confirm face validity. The definitions and grouping of the codes were iteratively refined to ensure accurate representation of the data. Authors had regular meetings and discussed the codes, categories, and themes. Trustworthiness of the study was ensured by prolonged engagement in the field, modified member checking involving members of our research team who conducted the intervention and the exit interviews, and an audit trail documenting our analytic decisions (Korstjens & Moser, 2018). Peer debriefing of the results was also conducted with the coauthors (D. P. Oliver and K. Washington; Janesick, 2015).

Results

Quantitative Findings

Sample characteristics

Among 318 hospice caregivers, the mean age was 58.96 (standard deviation [SD] = 12.07), and 259 (81.45%) caregivers were female (Table 2). Approximately half identified as white (55.03%), had completed a bachelor’s degree or higher (55.97%), and were an adult child of the hospice patient (49.06%). Among 218 caregivers who were actively caregiving at baseline, 124 (56.9%) were living with the hospice patient, and 66 (30.28%) became bereaved at some point after baseline while participating in the study.

Table 2.

Sample Characteristics (N = 318)

Age (mean (SD))	58.96 (12.07)
Gender (n (%))
Female	259 (81.45)
Male	59 (18.55)
Ethnicity (n (%))a
Hispanic	19 (5.97)
Non-Hispanic	294 (92.45)
Race (n (%))b
American Indian or Alaska Native	4 (1.26)
Black/African American	117 (36.79)
White	175 (55.03)
Asian American	5 (1.57)
Native Hawaiian or other Pacific Islander	1 (0.31)
Other	17 (5.35)
Education level (n (%))
Less than high school	5 (1.57)
High school or equivalent	47 (14.78)
Some college, associate degree	88 (27.67)
Bachelor’s degree	83 (26.10)
Graduate or professional degree	95 (29.87)
Relationship to patient (n (%))
Spouse/partner	101 (31.76)
Adult child	156 (49.06)
Other (e.g., friend, sibling, friend, etc.)	61 (19.18)
Intervention (n (%))
PISCES F2F	114 (35.85)
PISCES Hybrid	105 (33.02)
PISCESplus	99 (31.13)
Timing of intervention (n (%))
Recent transition to hospice	85 (26.73)
In the midst of hospice	133 (41.82)
Bereaved	100 (31.45)
Baseline outcomes
Depressive symptoms	7.14 (5.46)
Anxiety symptoms	6.24 (4.96)

Notes: F2F = face-to-face; PISCES = Problem-solving Intervention to Support Caregivers in End-of-life care Settings; SD = standard deviation.

^aFive declined to answer.

^bEight declined to answer.

A total of 114 (35.85%) caregivers received PISCES F2F, 105 caregivers (33.02%) received PISCES Hybrid, and 99 (31.13%) caregivers received PISCESplus. In terms of the timing, 85 (26.73%) caregivers had recently transitioned to hospice at baseline, 133 (41.82%) were in the midst of hospice, and 100 (31.45%) were bereaved. At baseline, the mean PHQ-9 score was 7.14 (SD = 5.46), indicating mild depression; the mean GAD-7 score was 6.24 (SD = 4.96), indicating mild anxiety.

Pre–post differences in caregiver outcomes based on the timing of the intervention

Among caregivers assigned to PISCES F2F, declines in the postintervention depressive symptoms were observed across all time points, including those who had recently transitioned to hospice (mean difference = −2.83, SD = 5.00), those who were in the midst of hospice (mean difference = −2.22, SD = 3.83), and the bereaved (mean difference = −3.34, SD = 4.36; Table 3). These pre–post differences were all statistically significant (p = .013, p < .001, p < .001, respectively). Among the PISCES Hybrid group, only those bereaved at baseline showed significant changes in their depressive symptoms after the intervention, with a mean decrease of 2.94 (SD = 4.00, p < .001). Within the PISCESplus group, the pre–post differences were significant among caregivers in the midst of hospice (mean difference = −1.66 [SD = 5.57], p = .043) and those who were bereaved (mean difference = −2.28 [SD = 3.91], p < .001).

Table 3.

Pre–Post Outcome Comparison Within Each PISCES Group Base on Timing (N = 318)

Depressive symptoms
PISCES	Timing	Preintervention	Postintervention	Change after intervention	p Value
F2F (n = 114)	During recent transition (n = 29)	7.41 (5.82)	4.59 (3.41)	−2.83 (5.00)	.013
	In the midst of hospice (n = 50)	7.40 (5.82)	5.18 (4.13)	−2.22 (3.83)	<.001
	Bereaved (n = 35)	8.23 (4.78)	4.89 (3.68)	−3.34 (4.36)	<.001
Hybrid (n = 105)	During recent transition (n = 30)	6.50 (5.32)	5.17 (3.37)	−1.33 (4.57)	.216
	In the midst of hospice (n = 42)	5.98 (4.80)	5.33 (4.55)	−0.64 (3.91)	.335
	Bereaved (n = 33)	7.94 (6.65)	5.00 (4.59)	−2.94 (4.00)	<.001
Plus (n = 99)	During recent transition (n = 26)	4.85 (4.37)	3.50 (3.34)	−1.35 (3.58)	.076
	In the midst of hospice (n = 41)	7.07 (5.72)	5.41 (5.28)	−1.66 (5.57)	.043
	Bereaved (n = 32)	8.56 (4.96)	6.28 (5.18)	−2.28 (3.91)	<.001

Anxiety symptoms
PISCES	Timing	Preintervention	Postintervention	Change after intervention	p value
F2F (n = 114)	During recent transition (n = 29)	6.86 (5.66)	4.41 (3.02)	−2.45 (4.56)	.009
	In the midst of hospice (n = 50)	6.54 (5.28)	4.16 (3.88)	−2.38 (4.19)	<.001
	Bereaved (n = 35)	6.97 (4.90)	4.06 (3.79)	−2.91 (4.22)	<.001
Hybrid (n = 105)	During recent transition (n = 30)	6.33 (4.54)	4.53 (3.50)	−1.80 (4.19)	.038
	In the midst of hospice (n = 42)	5.62 (4.83)	4.21 (4.43)	−1.40 (4.38)	.023
	Bereaved (n = 33)	5.33 (5.52)	3.97 (4.29)	−1.36 (3.66)	.016
Plus (n = 99)	During recent transition (n = 26)	4.50 (3.95)	2.69 (2.68)	−1.81 (3.82)	.037
	In the midst of hospice (n = 41)	6.51 (5.35)	4.02 (4.21)	−2.49 (4.70)	.002
	Bereaved (n = 32)	7.09 (3.94)	5.09 (5.09)	−2.00 (4.84)	.020

Notes: Values are in mean (standard deviation). F2F = face-to-face; PISCES = Problem-solving Intervention to Support Caregivers in End-of-life care Settings.

All subgroups demonstrated significant differences in their anxiety symptoms after the intervention, regardless of the type of PISCES intervention and its timing (Table 3). The mean differences ranged from −2.91 to −1.36.

Qualitative Findings

Our qualitative analysis identified three overarching themes on hospice caregivers’ perception toward the timing of PISCES, encompassing several categories and subcategories (Supplementary Table 1).

Timing for PISCES to be most effective

This theme specifically describes the optimal time for introducing PISCES to hospice caregivers. Some caregivers thought PISCES would likely have been useful prior to hospice: “In my experience with my dad, who’s on hospice now, and my mom was on hospice, she passed away in March. All those issues where I really could’ve used this [PISCES] happened well before they entered hospice” (Female, 58, PISCES Hybrid). Specific times that were mentioned included when their family member was in the hospital or a nursing care facility, before receiving a terminal diagnosis, and between palliative and hospice care.

Many also recommended that PISCES be delivered at the onset of hospice: “It has to be done, I think, immediately or very soon after introduction” (Male, 61, PISCES Hybrid). They believed beginners to hospice would benefit from PISCES as it makes the transition much easier. While acknowledging the benefits of PISCES, another participant was concerned about caregivers being overwhelmed at this stage by their loved ones’ potential death: “How you would introduce it in that situation when somebody’s not thinking very rationally? That’s a little harder question” (Male, 71, PISCES Hybrid).

Some caregivers, all of whom were bereaved when offered PISCES, felt in retrospect that the intervention would have been helpful when they were actively providing care for their family member in hospice. One caregiver in the PISCES F2F group and one from the PISCESplus group, both of whose family members passed away within a week of hospice enrollment, reflected that receiving the intervention in “the middle of a longer-term hospice situation” would have been more helpful. However, two other caregivers added, “it was hard to implement new stuff” and “If she were still alive, it would have been very hard to take the time to do this [PISCES].”

Several reported benefiting from PISCES after their family members’ death: “I needed to vent right now, and her [interventionist] timing was perfect because I felt I had nowhere else to turn” (Female, 55, PISCES F2F). Caregivers valued talking to someone outside of their family about grief and discussing solutions to grief-related issues along with other problems that arose during bereavement.

Emotions during various stages of hospice

This theme refers to caregivers’ descriptions of specific emotions they felt at a particular stage in hospice. When entering hospice, many described being overwhelmed and stressed, quoting “shellshocked,” “very scary, very angry, hurt” and “like a death sentence.”—“I had heard nightmares about hospice, and I was so scared when I got myself into it” (Female, 63, PISCES F2F). Feelings of uncertainty, guilt, and anxiety were also expressed. These intense emotions were present even among those who eventually had positive hospice experiences. Caregivers described hospice as “a new thing,” resulting in an “awful lot to cope with and a lot of changes.” They reported having “no clue what to expect,” and not having “any training for this at all.” A few reported being frustrated by logistical issues associated with hospice transition and unexpected hospice policies. On the other hand, relief was also described: “When he got to [medical center], and he got hospice, I felt like he was being taken care of” (Female, 71, PISCES Hybrid).

During active caregiving in hospice, caregivers reported having “so many things to worry about,” yet not “always hav[ing] time to deal with other situations.” Challenges varied from navigating bureaucratic issues to poor communication with staffs, not being ready for their family members’ death, family conflicts, and difficult interactions with the care recipient. While caregivers described being “emotional and then stressful,” they often felt helpless in addressing these distressful situations— “You just don’t know what to do and you get to the point it’s either scream or cry. Sometimes you feel like you’re not entitled to complain because your loved one is suffering or dying and you’re like, okay. You just feel like you don’t put yourself first” (Female, 66, PISCESplus). Nonetheless, they wanted to have “a little bit of hope when really there isn’t none,” showed strong commitment, and were grateful for the comfort care provided to their loved one.

After their loved one’s death, caregivers described being “depressed,” experiencing a “whirlwind,” “suffering through grief,” and feeling “left alone”—“I pray that this’ll pass, but this is extremely hard” (Female, 55, PISCES F2F). Despite sadness, one caregiver who received PISCES Hybrid expressed relief that “he’s in a better place.”

Length of PISCES

This theme encompasses caregivers’ feedback regarding the length of PISCES interventions. While most participants found PISCES helpful and believed it should be included in standard hospice practice, a few suggested that a “short, boiled-down version” would be better for integration: “The only problem is a lot of people don’t have a lot of time, and it [PISCES] takes a lot of work. People can often be afraid of something they’re not that familiar with” (Female, 59, PISCESplus). One caregiver in the PISCES F2F group reported that the intervention was not too long but rather designed for a “good length of time.”

Discussion

Despite the growing recognition of the need to support end-of-life caregivers (Motamedi et al., 2021; Oechsle, 2019), it can be challenging to introduce a new cognitive-behavioral or educational intervention for hospice caregivers in the real-world end-of-life settings. Given the caregivers’ burdensome transition and unpredictable length of stay in hospice (Cross et al., 2022), the optimal timing for caregivers to harness the full potential of these tools remains unclear. Our study aimed to improve the translation of a promising PST intervention for hospice caregivers, labeled PISCES. Our qualitative findings revealed that caregivers experienced various emotions throughout their hospice experience and perceived PISCES to be practically and psychosocially helpful across different stages of hospice. Our quantitative findings added that the effectiveness of PISCES on specific caregiver outcomes differed based on its timing, delivery modality, and intervention components. Such findings can further inform the design of future interventions tailored to the needs of end-of-life caregivers. While our study utilized inductive approaches, theoretical frameworks like Hebert et al. (2006) may be used in future analysis to provide further insights on the role of timing in preparing caregivers at the end of life.

When actively caring for a family member in hospice, PISCES was effective in addressing caregivers’ anxiety. Such results are consistent with another study that adapted PST for caregivers of patients with cancer, where the intervention group reported less anxiety compared to those who received only usual care (Washington et al., 2018). Importantly, our study findings add that the timing of such support was not an issue for active caregivers as both caregivers recently transitioned to hospice, as well as those in the midst of it, showed significant changes in their anxiety symptoms regardless of the intervention type. Our participants described many concerns during the hospice episode—not only about their family member but also regarding administrative tasks, staff communication, and managing family conflicts, aligning with the evidence synthesized by Michaels et al. (2022). Through PISCES, caregivers learned practical problem-solving skills and explored potential resources, which helped feelings of frustration, stress, and helplessness. Such support would be particularly important for hospice caregivers due to their higher risk of experiencing negative psychological responses to stressful end-of-life caregiving experiences (Luth et al., 2021). Our findings suggest that when aiming to manage anxiety, it is not a question of when caregivers receive PISCES, but rather that gaining the support is what matters.

Interestingly, the significance of the pre- and postintervention differences in depressive symptoms differed between PISCES F2F and Hybrid during the active caregiving phase, despite the same content. In-person delivery showed significant pre–post changes for caregivers both recently transitioned to and in the midst of hospice. In contrast, the hybrid format showed no significant differences in either timing. The benefits of using telecommunications technology in healthcare are known to include cost-effectiveness, improvement of timely access to care, and its potential to mitigate geographical barriers and resource limitations (Mahtta et al., 2021). Yet, in the context of palliative care, Hancock et al. (2019) reported that there are currently lack of evaluation undertaken for these telehealth interventions. Specifically for interventions targeting end-of-life caregivers, there is a small number of studies comparing the effectiveness between in-person and virtual formats (Alshakhs et al., 2023). Our findings and those of previous literature suggest the need for future studies to refine hybrid approaches and confirm its effectiveness in end-of-life settings.

Although PISCESplus was delivered in a hybrid format, caregivers in the midst of hospice showed significant changes in their depressive symptoms, while those newly admitted did not. It is important to note that the PISCESplus group had an additional focus on recognizing the positive aspects of caregiving. This group’s unique results might suggest that the effectiveness of PISCES on hospice caregivers’ depressive symptoms could be affected not only by its timing and delivery modality, but also by the intervention component as well. Positive appraisal, which is a form of emotion-focused coping, can foster confidence in the caregivers’ skills and strengthen their resilience to stress (Han et al., 2019). However, research on finding meaning and benefits in caregiving is lacking (Lee & Li, 2022), and the effectiveness of this approach has not been thoroughly tested for hospice caregivers. Our results in relation to the timing of the intervention might suggest that such approaches of seeking to find value in caregiving may be better after caregivers have had some time to adjust to hospice. Most participants expressed negative emotions like fear, shock, and worry when entering hospice, consistent with the findings of McCarthy et al. (2023) on caregivers’ burden and fear during the transition into end-of-life care. Hence, for newly transitioned caregivers, PST curriculums with an exclusive focus on problem-based coping strategies addressing immediate challenges may be more suitable than those that also introduce emotion-based coping elements.

Another important finding was that both our qualitative and quantitative findings highlight PISCES’s potential as a valuable resource for bereavement support. Bereaved caregivers, regardless of the intervention group, showed significant changes in both anxiety and depressive symptoms after the intervention, and interviews confirmed that PISCES was helpful in managing their grief. Hospice in itself does provide bereavement counseling for up to 13 months (National Consensus Project for Quality Palliative Care, 2018). However, Ghesquiere et al. (2019) reported a gap between the bereavement services offered in hospice and the type of support preferred by the caregivers, with 14.4% of their sample responding that they had received too little bereavement support. In addition, Aoun et al. (2017) demonstrated that some caregivers found bereavement support in palliative care standard and not tailored to their personal needs or preferred timing. Given that PISCES sessions are individualized, focusing on caregivers’ self-selected problems, our results suggest that PISCES can serve as an additional layer of support for bereaved caregivers.

A key question raised during the interviews was how to introduce new skills and resources to individuals undergoing mentally and, in some cases, physically challenging transitions to hospice. Interestingly, some caregivers suggested initiating PISCES even before hospice, such as during palliative care or in hospital settings. Given the limited applications of PST in the context of serious illnesses and palliative care (Garand et al., 2014; Washington et al., 2018), expanding PST interventions in various settings may offer caregivers more options to choose their most preferred time to learn new coping strategies.

Another important consideration is that some patients were referred to hospice shortly before their death, resulting in a brief enrollment. In retrospect, caregivers of these patients felt they would have benefited from PISCES more if their hospice experience had been longer. National Hospice and Palliative Care Organization (2024) recently reported that half of Medicare decedents were enrolled in hospice for 18 days or less. Because hospice is intended for individuals with a life expectancy of months, receiving it for only a few days or weeks limits the benefits for families and their access to resources that could have supported their caregiving experience (Hovland & Kramer, 2019).

To our knowledge, this is the first study to explore how timing affects the effectiveness of a PST intervention for hospice caregivers. Nonetheless, our study has several limitations. First, although the study is the largest RCT with hospice caregivers documented to date, subdividing the three intervention groups by time points resulted in a small sample size within each subgroup. We utilized a nonparametric test for this reason. However, a bigger sample size would have increased credibility. We also did not provide a descriptive analysis of the patients’ diagnoses. Diagnoses were based on caregiver reports, which may sometimes be biased without verifications through a structured questionnaire or electronic health record queries. Finally, the setting of this study was limited to eastern United States, which may limit our findings’ transferability to other sociopolitical contexts. Nonetheless, our study demonstrates strengths in equity and inclusion, as we recruited a racially diverse sample of hospice caregivers.

Conclusion

Family caregivers are considered part of the unit of care in hospice, yet there is a lack of interventions specifically for this population. Our study provided insights into how timing affects the effectiveness of a PST intervention (PISCES), demonstrating that it can benefit hospice caregivers in different ways depending on its timing, delivery, and specific intervention components. Based on our findings, we recommend strategically integrating PISCES into standard hospice practice. Further research is warranted to improve the interventions’ translatability and to develop concrete and actionable guidelines for effectively introducing PST to hospice caregivers at optimal times.

Funding

This study was supported in part by the National Institutes of Health, National Institute of Nursing Research (grant nr. 2R01NR012213).

Conflict of Interest

None.

Data Availability

The analytic methods and materials can be made available upon request to the authors. The study’s deidentified data are also available upon request under a data-sharing agreement for: (1) using the data only for research purposes and not for identifying any individual participants, (2) securing the data using appropriate computer technology, and (3) destroying or returning the data after analyses are completed. Our clinical trial was preregistered (ClinicalTrials.gov identifier: NCT03712410).

Author Contributions

Oonjee Oh (Conceptualization [lead], Formal analysis [lead], Investigation [lead], Methodology [lead], Software [lead], Writing—original draft [lead], Writing—review & editing [lead]), Debra Parker Oliver (Conceptualization [equal], Writing—review & editing [supporting]), Karla Washington (Conceptualization [equal], Writing—review & editing [supporting]), and George Demiris (Conceptualization [lead], Funding acquisition [lead], Investigation [lead], Methodology [equal], Project administration [lead], Supervision [lead], Writing—original draft [equal], Writing—review & editing [equal])