Hospice Caregivers Research Articles

Development of a Hospice Perceptions Instrument for Diverse Patients and Families: Establishing Content and Face Validity.

For many, the perception of "hospice" is synonymous with "death." Even clinicians struggle to have conversations that distinguish between hospice and palliative care for fear that discussing hospice may diminish hope. To date, there are no existing measurement tools to evaluate patient and family perceptions of hospice care. This research aimed to develop a Hospice Perceptions Instrument (HPI) to capture these perceptions among diverse patients and families. Building on previous studies and literature, 79 potential items were drafted for the instrument. Our interprofessional team independently and collectively evaluated these, resulting in 36 items rated on a 5-point Likert scale. Overarching domains include (1) hospice philosophy and definitions; (2) hospice services; (3) values; and (4) counter-perceptions. Sixteen national subject matter experts from various professions and roles were invited to participate in the content-validity index and five hospice caregivers were invited to participate in face validity. Fourteen experts responded, with ten meeting inclusion criteria: one physician, four nurses, three social workers, and two chaplains. Six of the ten identified as Black. Three items were removed (I-CVI ranged from 0.5-06), and nine items were revised (I-CVI ranged from 0.6-07). The overall Content Validity Index (CVI) was 0.83, indicating excellent content validity. After revisions, five hospice caregivers assessed face validity and no changes were made based on feedback. Results reveal a disconnect between professional expertise and patient/family voices related to hospice perceptions. Development of this instrument invites a better understanding of perceptions leading to new opportunities for patient/family engagement.

Experiences and barriers in downward referral decision-making for palliative care patient caregivers under China's three-tiered linkage model: A qualitative study

ObjectiveThis study aimed to explore hospice caregivers’ downward referral decision-making experiences and barriers under the triadic linkage model in China and to analyze the deeper social dynamics of hospice referral choices. MethodsSemi-structured interviews were conducted with caregivers handling hospice referrals from two primary hospice agencies in Nanjing, China. The themes were analyzed and summarized using the Colaizzi 7-step analysis. ResultsFour themes and nine subthemes were extracted: multidimensional caregiver psychological experience (Dilemma and Guilt, Emotional Support and Psychological Adaptation), perceived disparities between referral organizations (convenience and affordability in the home community, perceived lack of primary health care resources), limitations of caregiver decision-making (cognitive comprehension bias, difficulty in information seeking, and passive acceptance of decision making), and limitations of health care referral support (lack of health care referral guidance, inadequate referral handoffs). ConclusionsFeedback from caregivers of hospice-referred patients reveals many barriers to hospice referral decision making and referral implementation. Overcoming these barriers entails efforts to change the cognitive misunderstandings regarding hospice referrals from patients' perspective, clarify the distribution of responsibilities among hospice agencies, and provide information support and decision-making assistance. These measures must be employed to improve the implementation of hospice referral, realize the multiple benefits of hierarchical diagnosis and treatment, boost patients’ satisfaction with the referrals, and ensure the rational and efficient distribution of hospice resources.

Longitudinal Analysis of Cancer Family Caregiver Perception of Sleep Difficulty During Home Hospice.

Sleep difficulty in caregivers is associated with poor physical and psychological outcomes. The purpose of this study was to describe family caregivers' perception of sleep difficulty through the hospice trajectory after a cancer diagnosis as predicted by age, sex, self-report of anxiety or depression, and cohabitation. We conducted a secondary analysis of longitudinal data using multilevel modeling with nested model comparisons. Beginning with an unconditional growth model, predictors were added to nested models to test differential impact. Caregivers (n = 164) were predominately white (n = 160; 97%) and female (n = 113, 69%). We hypothesized that age, sex, history of anxiety or depression, and cohabitation would predict sleep difficulty. The cohabitation predictor model was a statistically significant model for caregiver perception of sleep difficulty that worsened throughout hospice caregiving (b = .184, 2 = 7.199, P = 0.027) but age, sex, and history of depression or anxiety did not improve model fit. Our findings indicate that family caregivers who cohabitate exhibit increased perception of sleep difficulty over the course of hospice. Future studies and interventions for hospice family caregivers' sleep should consider cohabitation between the patient and the caregiver as a significant predictor of sleep difficulty to observe and potentially mediate the negative outcomes associated with caregiver sleep difficulty. Further, determining the underlying reasons for sleep difficulty in cohabitation (e.g., patient symptoms or treatments) should be explored.

161 Peer Caregiver Navigation for Hospice Caregivers of Cancer Patients: A Feasibility Study

OBJECTIVES/GOALS: To evaluate the feasibility, acceptability, and appropriateness of a 1:1 peer-delivered psychosocial support intervention to family caregivers of hospice patients with cancer, and determine a range of potential effects of the intervention on psychological distress symptoms and perceptions of the caregiving experience. METHODS/STUDY POPULATION: Quantitative and qualitative data were collected from hospice caregivers of cancer patients who participated in a non-controlled pilot feasibility trial of a 1:1, peer-delivered psychosocial intervention called Peer Caregiver Navigation (PCN). The purpose of this study was to evaluate the feasibility, acceptability, and appropriateness of delivering PCN to hospice family caregivers of cancer patients, and to determine a range of potential effects of PCN on caregivers’ anxiety symptoms, depressive symptoms, self-efficacy, and benefit finding. Qualitative data were analyzed using deductive thematic analysis. For our study outcomes, we used both parametric and nonparametric t-tests to examine mean differences between outcomes at baseline and midpoint, and baseline and endpoint. RESULTS/ANTICIPATED RESULTS: The findings demonstrate that Peer Caregiver Navigation (PCN) is acceptable, appropriate, and feasible to deliver to hospice family caregivers of cancer patients. Appropriateness of our selected target outcomes was determined by confirming expected measurement change in depressive symptoms (lower), anxiety symptoms (lower), benefit finding (higher), and self-efficacy (higher). Exit interviews revealed that participants responded favorably to our selected measures for these outcomes and to our data collection time intervals. Moreover, recruitment and consenting processes, survey completion rates, and attrition outcomes (i.e., study exit due to active withdrawal vs. patient death) were analyzed to inform recruitment and retention feasibility for future studies. DISCUSSION/SIGNIFICANCE: Peer Caregiver Navigation (PCN) was determined to be feasible, acceptable, and appropriate to hospice family caregivers of patients with cancer. Moreover, PCN has the potential to improve caregivers' symptoms of psychological distress by providing them much needed psychoeducation, coping skills training, and emotional support.

Promising Impact of Telenovela Intervention for Caregivers of Hospice Patients: A Pilot Study.

Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%). This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed. Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (P > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%. Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.

BLACK CAREGIVERS’ CULTURAL, RELIGIOUS, AND SYMPTOM MANAGEMENT EXPERIENCES WITH HOME HOSPICE CARE

Abstract Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment. This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers’ experiences around cultural, religious, and symptom management challenges during home hospice care. Data from semi-structured interviews with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Regarding symptom management, caregivers struggled most with managing patients’ pain, lack of appetite, and decline near End of Life (EoL). Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around EoL symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers’ existing religious networks. Larger quantitative studies are needed to examine the clinical implications of these results in terms of patient, caregiver and hospice outcomes.

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.

Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment. This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care. Data from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. Caregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.

Choosing Hospice is Not Giving Up

Choosing Hospice is Not Giving Up

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.

Overall US Hospice Quality According to Decedent Caregivers-Natural Language Processing and Sentiment Analysis of 3389 Online Caregiver Reviews.

Objectives: With an untapped quality resource in online hospice reviews, study aims were exploring hospice caregiver experiences and assessing their expectations of the hospice Medicare benefit. Methods: Topical and sentiment analysis was conducted using natural language processing (NLP) of Google and Yelp caregiver reviews (n = 3393) between 2013-2023 using Google NLP. Stratified sampling weighted by hospice size to approximate the daily census of US hospice enrollees. Results: Overall caregiver sentiment of hospice care was neutral (S = .14). Therapeutic, achievable expectations and misperceptions, unachievable expectations were, respectively, the most and least prevalent domains. Four topics with the highest prevalence, all had moderately positive sentiments: caring staff, staff professionalism and knowledge; emotional, spiritual, bereavement support; and responsive, timely or helpful. Lowest sentiments scores were lack of staffing; promises made, but not kept, pain, symptoms and medications; sped-up death, hasted, or sedated; and money, staff motivations. Significance of Results: Caregivers overall rating of hospice was neutral, largely due to moderate sentiment on achievable expectations in two-thirds of reviews mixed with unachievable expectations in one-sixth of reviews. Hospice caregivers were most likely to recommend hospices with caring staff, providing quality care, responsive to requests, and offering family support. Lack of staff, inadequate pain-symptom management were the two biggest barriers to hospice quality. All eight CAHPS measures were found in the discovered review topics. Close-ended CAHPS scores and open-ended online reviews have complementary insights. Future research should explore associations between CAHPS and review insights.

Suicide and Hospice Caregivers: A Case Study

In 2020, hospices supported 1.72 million Medicare patients and their caregivers. The end-of-life experience can be difficult for caregivers and many experience anxiety, depression, and suicidality. Little literature has explored the role of hospice social workers in addressing and treating caregivers’ suicidal thoughts and behaviors. This paper will explore the topic of hospice caregiver suicide, using a case study to illustrate relevant issues, practices, and needs. Implications for hospice social work practice are included.

Hospice Caregivers' Perception of Family and Non-Family Social Support and Stress over Time: Associations with Reports of General Support.

Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers' social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers' perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient's death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.

Home Hospice Family Caregivers' Use of Audio Diaries and Reported Prevalence of Patient and Caregiver Symptoms.

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. 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. 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. 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=0.04. 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%). 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.

The Burden of having to Wonder: Hospice Caregiving Experiences of LGBTQ+ Cancer Family Caregivers.

LGBTQ+ people are more likely to be caregivers for family and friends with life-limiting illnesses than non-LGBTQ+ people. LGBTQ+ caregivers may also experience stigma, bias, and discrimination, in addition to caregiving stress. Yet few studies have elicited LGBTQ+ family caregivers' perspectives on their end-of-life (EOL) experiences of home hospice. We conducted semi-structured interviews with LGBTQ+ family caregivers of home hospice patients (N = 20). Following an interpretive descriptive approach, interview data were audio recorded, transcribed, and iteratively coded, and themes were developed and synthesized. The burden of having to wonder expressed caregivers' uncertainty and concern about whether their negative experiences were common to all EOL caregivers or stemmed from cultural stigma and provider bias. Participants described how invisibility vs. risks of disclosure, anticipatory anxiety, perceived microaggressions, and protective vigilance increased stress and complicated caregiver-provider communication. Navigating EOL universalities vs. minority realities depicted underlying tensions between commonly assumed universalities of EOL caregiving and LGBTQ+-specific experiences. Providers' discomfort, awkward communication, lack of access to culturally competent EOL support resources, and broader structural and cultural discrimination eroded their sense of connectedness and safety. Together, these themes characterized the impact of minority stress at EOL. Our findings suggest that LGBTQ+ hospice caregivers are at risk for minority stress in addition to more common sources of EOL caregiving pressures and thus have specific support and communication needs. Providers must understand this to deliver effective EOL care for all families.

A QUALITATIVE EVALUATION OF A POSITIVE REAPPRAISAL INTERVENTION FOR HOSPICE CAREGIVERS

Abstract For older adults who receive hospice services in the United States, family members often become their primary caregivers playing an essential role in delivering care. Nearly 25% of hospice patients and families report the need for improved communication and additional emotional support. However, there are few interventions targeting specifically caregivers. Whereas the term caregiving implies a unidirectional flow of benefits from the caregiver to the care recipient, caregivers also experience emotional, cognitive, behavioral, or interpersonal rewards from caring for a loved one. Research has demonstrated that positive gains are common among caregivers, often manifested with negative experiences. Positive reappraisal, a form of emotion-focused coping, is especially relevant when dealing with intractable stressors. Positive reappraisal is supplemental to problem-solving therapy interventions, yet this component has never been tested in a hospice setting. In this study, we wanted to understand hospice caregivers’ impressions of a problem-solving therapy intervention enhanced with positive reappraisal modules (called PISCESplus). We conducted a qualitative study examining hospice caregivers’ perceptions of positive reappraisal. Participants received the intervention (as part of a larger clinical trial). Caregivers’ exit interviews were audio-recorded and transcribed. Thirty hospice caregivers’ interviews were analyzed. Many participants reported a paradigm shift in their thought processes. Positive reappraisal helped them reframe negative emotions to positive ones, declutter their minds, and acknowledge that caregiving required work and effort. Study findings demonstrate the potential of this intervention to improve the coping skills of caregivers in the hospice setting.

Family caregiving experiences with hospice lung cancer patients compared to other cancer types

Background Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences. Objectives This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types. Method This study is based on a secondary analysis of data generated from a parent study evaluating a behavioral intervention with caregivers of hospice cancer patients. Results When comparing caregiving experiences by patient diagnosis, significant differences were found in caregivers of hospice lung cancer demographics and experiences with caregiver-centered communication. Specifically, caregivers of lung cancer patients have significantly more trouble with exchange of information, fostering relationships, and decision making with their hospice team. Conclusion More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues.

Review: Narrative Medicine in Hospice Care: Identity, Practice, and Ethics through the Lens of Paul Ricoeur, by Tara Flanagan

Review: <i>Narrative Medicine in Hospice Care: Identity, Practice, and Ethics through the Lens of Paul Ricoeur</i>, by Tara Flanagan

“It’s Just Too Much”: The Financial Calculus in Medicare Hospice

There is extensive literature on the significance of financial incentives in the Hospice Medicare Benefit (HMB) and the growth of proprietary ownership of hospices in the United States. A literature review indicates a paucity of information on hospice nurses’ and hospice social workers’ perceptions of the impact of the HMB’s financial structure on care planning and delivery decisions. In a previous issue of this journal, the author addressed the literature gap by presenting a study on hospice nurses’ perceptions of the impact of financial factors on their decision-making regarding care for Medicare hospice beneficiaries. The study presented in this article is a companion qualitative study to the nurses’ study. This article presents background on the topic and an initial, exploratory study to address the literature gap, based on interviews of a convenience sample of 37 hospice social workers from 6 different hospices between December 1, 2018 and January 31, 2020, in the New York City metropolitan area. Six themes emerged from the interviews: finances are the guiding principle in care planning and service delivery decisions; balancing patient care needs, cost, and finance-related length of stay (LOS) is a challenge; the emphasis on finance diminishes the social workers’ ability to address hospice patient needs; the emphasis on finance diminishes the social workers’ ability to address hospice caregiver needs; the social work role is diminished because of the role of nurses in developing and implementing the plan of treatment, which influences finances; and the Interdisciplinary Team (IDT) is the crucial clinical and financial decision-making setting, but gives limited weight to social work input.

Cancer Hospice Caregivers’ Self-Care Behaviors: The Role of Mental Health, Burden, and Perceptions of Competency (RP403)

Cancer Hospice Caregivers’ Self-Care Behaviors: The Role of Mental Health, Burden, and Perceptions of Competency (RP403)