Hospice Family Caregivers Research Articles

Family caregiver narratives of hospice death vigils

BackgroundOften, family members and friends gather around a dying hospice patient to say goodbye in what is known as a death vigil. The purpose of this study is to explore...

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.

Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.

Nearly half of more than 1.7 million older Americans who receive hospice care each year have a primary or comorbid diagnosis of dementia. Pain is often undertreated in this patient population owing to myriad factors, including unmet informational needs among family caregivers. We sought to inform the adaptation of a pain education intervention for hospice family caregivers to the context of dementia by eliciting feedback on the educational content covered in adapted intervention materials. We conducted a multimethod, formative research study to inform the adaptation of an existing, evidence-based intervention. The study included a purposively recruited sample (n = 33) of hospice professionals (n = 18) and family caregivers (n = 15) from across the United States. Participants quantitatively rated the importance of each of the eight pain concerns presented in the adapted intervention materials (1 = not important to 3 = very important) and provided qualitative feedback via Zoom interview on the acceptability, clinical accuracy, and potential benefits of the adapted content. We analyzed quantitative data via descriptive statistics and qualitative data via content analysis. Participants rated the adapted educational content as highly important (rangemean = 2.56-3.00), particularly regarding concerns about caregivers' pain assessment, communicating with the hospice team about pain, and addressing misinformation regarding pain medication outcomes. Participants also provided suggestions to strengthen specific educational messages to improve comprehension and uptake. Findings support the continued development and testing of the adapted intervention.

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

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

Caregiver Burden and Workplace Productivity Among Hospice Cancer Caregivers.

To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving. Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis. Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions. Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age. Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

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.

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.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

ABSTRACT Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

POOR SLEEP COMMON AMONG HOSPICE FAMILY CAREGIVERS AND ASSOCIATED WITH WORSE CAREGIVER HEALTH

Abstract Over 1.2 million hospice family caregivers in the United States are at risk for interrupted, insufficient sleep due to overnight caregiving responsibilities, anxiety or intrusive thoughts, and inadequate caregiving support. Insomnia contributes to health inequities yet is underrecognized and undertreated. The prevalence of insomnia among hospice family caregivers is not well understood. The purpose of this preliminary study was to describe insomnia prevalence among hospice family caregivers and identify factors that differentiate caregivers with sleep difficulties from caregivers without sleep difficulties. This observational study included 57 hospice family caregivers of cancer patients enrolled in a randomized clinical trial for caregivers [NCT02929108]. Results showed 49.1% of hospice family caregivers had subthreshold insomnia to severe clinical insomnia, as measured by the Insomnia Severity Index. Although social determinant of health variables did not differ based on caregiver insomnia status, caregivers with insomnia (5.0, median) self-rated their physical health significantly lower than caregivers without insomnia (8.0, median) (P< 0.001). Directionally, the distance a caregiver lived from a care-recipient also differed by insomnia status, with 70% of caregivers with insomnia co-residing compared to 46% of caregivers without insomnia. Overall, 78.9% of hospice family caregivers had no caregiving support; anxiety and depression were highly prevalent. Clinicians should screen hospice family caregivers for sleep disorders and seek to improve caregiver health by offering sleep interventions tailored to the specific needs of hospice family caregivers and connecting caregivers to health resources for their own wellbeing. Policy makers must expand hospice benefits to include additional caregiver support.

IT WAS TERRIBLE, I DIDN'T SLEEP FOR TWO YEARS: A MIXED-METHODS EXPLORATION OF SLEEP AMONG HOSPICE FAMILY CAREGIVERS

Abstract Due to overnight caregiving demands and inadequate social support, over 1.2 million hospice family caregivers in the U.S. and millions more worldwide are at risk of poor sleep and resulting negative effects on health. Sleep problems are a modifiable source of global health inequities. The purpose of this study was to describe hospice family caregiver sleep experiences, efforts to improve sleep, and effects of sleep. Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. In 2021, 47 family caregivers of hospice care-recipients from two randomized clinical trials in the United States (NCT03712410, NCT02929108) were interviewed. Sleep-related questions from PHQ-9 and GAD-7, and self-rated health and energy were administered at baseline. Three themes emerged: quality of sleep, factors influencing sleep, and effects of sleep. Hospice family caregivers commonly experienced “interrupted” sleep with frequent night-waking due to “on-call” “vigilance” and anxiety overnight and, sometimes, in bereavement. Negative effects included exhaustion, mental and physical health decline, and reduced performance. 72.5% described sleep quality as “fair” or “poor.” At baseline, 35.5% of caregivers were bothered by trouble falling asleep, staying asleep, or sleeping too much at least “more than half the days” in a week. Caregivers were reluctant to take sleep medications. Over half quit jobs or reduced work hours to provide care; few reported adequate support. Hospice family caregivers commonly experience disordered sleep with negative effects. Clinicians must assess sleep, offer tailored sleep interventions, and provide more supports to hospice family caregivers.

ALIGNMENT OF COMMUNICATION AND SUPPORT NEEDS BETWEEN LGBTQ+ FAMILY CAREGIVERS OF HOSPICE PATIENTS AND PROVIDERS

Abstract Effective and equitable end-of-life care requires alignment between the support and communication needs of hospice family caregivers and the knowledge and competence of hospice care team members. We investigate alignment between LGBTQ+ caregivers and hospice providers in a secondary analysis of data collected in three studies: 1) Surveys identifying predictors of hospice providers’ (N=122) attitudes toward LGBTQ+ caregivers and patients; 2) focus groups assessing hospice interdisciplinary care team members’ (N=48) knowledge, training, and opinions regarding LGBTQ+ family caregiver and patient communication and care needs; and 3) in-depth interviews with LGBTQ+ hospice family caregivers (N=20). Synthesis of key findings show how alignment is impacted by lack of systematic, inclusive orientation and gender data, provider religiosity, expectations of disclosure, cisheteronormative assumptions about the universality of EOL experiences, and caregivers’ experiences of minority stress. We discuss implications for developing interventions to improve provider communication, empowering caregivers, and addressing hospice-specific sources of minority stress.

ESPO AND BEHAVIORAL AND SOCIAL SCIENCES SECTION SYMPOSIUM: TAILORING INTERVENTIONS TO REACH AND MEET THE DIVERSE NEEDS OF DIVERSE CAREGIVERS

Abstract Family caregiving cuts across populations, making caregivers a highly diverse population in terms of culture, family organization, care situations, and more. A 2021 report from the National Academies of Sciences Engineering and Medicine reinforces the need to develop and test tailored interventions in order to successfully reach and support family caregivers. Yet, there is limited practical guidance to help researchers to develop intervention programs tailored to the diverse needs of family caregivers. This symposium endeavors to address this gap by sharing accounts from researchers who have effectively tailored existing interventions to meet the diverse needs of diverse caregivers, as well as those who collaboratively worked alongside family caregivers in order to build a tailored program from the ground up. To begin, Kristin Cloyes, PhD MN RN will describe a study where she examines alignment between LGTBQ+ hospice family caregivers and other members of the hospice care teams, as it relates to support and communication needs. Next, Jung-Ah Lee, PhD, RN, FGSA, FAAN, will describe the experiences of racially and ethnically diverse caregivers who received a community health worker intervention to access resources tailored to their language needs. Jaime Perales-Puchalt, PhD, MPH, will describe the results of CuidaTEXT intervention study, which used tailored Short Messaging Service-based text message to deliver support to Latin family caregivers. Lastly, Ishan Williams, PhD, FGSA, will present on findings from research on how community engagement as well as culturally informed intervention can improve the representation of family caregivers, especially African American caregivers, in caregiving research studies

“It was terrible, I didn’t sleep for two years”: A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life

Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status. Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. Setting/participants: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. Results: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “interrupted” sleep and frequent night-waking due to “on-call” “vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. Conclusion: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.

Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers. Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls. Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors. Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider.

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers.

Recruitment and attrition are inherently challenging issues in hospice research. We sought to describe strategies of recruitment, retention, and delivery of NOVELA (short for telenovela), an intervention for hospice family caregivers (HFCG). Statistics were kept of every referral, consenting participant, visit session, and intervention activity. We used the Social Marketing Mix Framework to describe recruiting strategies employed and lessons learned. Two hospices in the U.S. Mid-Atlantic region referred 47 HFCG and N = 20 agreed to participate, out of which 50% (N = 10) completed all 4 sessions with an average of 2.8 sessions per person, each lasting an average duration of 13.5minutes (range 8.0-25.7). The main reason for missing a session was a patient's death (N = 8). Successful recruitment strategies employed in NOVELA included: (a) intensive start-up hospice engagement, (b) remote recruitment and delivery of NOVELA, and (c) scheduling flexibility to work around caregivers' other demands. The recruitment and intervention delivery had successes and challenges resulting in the identification of multiple opportunities to strengthen our strategy and inform future studies with HFCGs.

Do Hospice Family Caregivers Differ by Race? Anxiety, Depression, Quality-of-Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication Among Black and White Hospice Family Caregivers (GP739)

Do Hospice Family Caregivers Differ by Race? Anxiety, Depression, Quality-of-Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication Among Black and White Hospice Family Caregivers (GP739)

Quality of Life of Older Adults With Complicated Grief: A Mixed Methods Exploration.

The current mixed methods study investigated what changes in quality of life (QOL) mean to older adults with complicated grief treated with Accelerated Resolution Therapy (ART) post-hospice services. An informational matrix, which included select patient characteristics (e.g., number of comorbidities, single versus multiple deaths, relationship role), four identified qualitative themes, end of study QOL scores measured by the Centers for Disease Control and Prevention Health-Related QOL Healthy Days Module, and changes in scores from baseline to end of study, was created to analyze the data. Results showed that although a history of multiple deaths may contribute to greater improvements in QOL with therapy, having at least one comorbidity resulted in a richer description and endorsement of QOL in response to treatment. This is the first longitudinal, randomized controlled trial using a mixed methods approach to examine QOL of hospice family caregivers with complicated grief who are receiving ART. This study identifies potential links of QOL and caregiver characteristics, providing nurses with foundational knowledge for assessment, care, and further research on the experiences of complicated grief. [Journal of Gerontological Nursing, 48(5), 19-26.].