Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Hospice Composition Based on Diagnosis is Associated with Caregiver-Reported Quality Measures.

Context: Given that the composition of hospice patients' terminal diagnoses has become increasingly diverse, understanding whether hospices provide quality care to patients, regardless of disease, is important. However, data comparing diagnosis and caregiver-reported outcomes remain scarce. Objectives: To analyze the association between the composition of patients' terminal diagnoses and caregiver-reported quality measures. Methods: Using cross-sectional, publicly available data from the Centers for Medicare & Medicare Services (CMS), we analyzed data collected from 2015-2019. We conducted general linear model analyses to identify associations between hospice characteristics/practices and caregiver-reported outcomes. Results: Of the 2810 hospices, those that cared for a greater percentage of dementia patients had fewer caregivers, on average, who rated hospice a 9 or 10 (where 0 = low, 10 = high; ß = -.094; 95% CI = -.147, -.038), reported they always received help for pain and symptoms (ß = -.106, CI = -.156, -.056), and reported definitely having received the training they needed (ß = -.151, CI = -.207, -.095). Those caring for more stroke patients had fewer caregivers, on average, who rated hospice a 9 or 10 (ß = -.184, CI = .252, -.115), reported they always received help for pain and symptoms (ß = -.188, CI = -.251, -.126), reported definitely having received the training they needed (ß = -.254, CI = -.324, -.184), and reported that the hospice offered the right amount of emotional/spiritual support (ß = -.056, CI = -.093, -.019). Conclusion: Hospices that cared for a greater proportion of dementia and stroke patients had poorer scores on caregiver-reported quality measures. These findings support efforts to identify mechanisms underlying these differences and to design strategies to ensure optimal outcomes for hospice patients regardless of diagnosis.

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors.

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants' responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient's terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient's needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs' expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.