Background: There is evidence that community-based palliative care programmes can improve patient outcomes and caregiver experiences cost-effectively. However, little is known about which specific components within these programmes contribute to improving the outcomes. Aim: To systematically review research that evaluates the effectiveness of community-based palliative care components. Design: A systematic mixed studies review synthesising quantitative, qualitative and mixed-methods study findings using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PROSPERO: ID # CRD42022302305. Data sources: Four databases were searched in August 2021 (CINAHL, Web of Science, ProQuest Federated and PubMed including MEDLINE) and a close review of included article references. Inclusion criteria required articles to evaluate a single, specific component of a community-based palliative care programme either within an individual programme or across several programmes. Results: Overall, a total of 1,674 articles were identified, with 57 meeting the inclusion criteria. Of the included studies, 21 were qualitative, 25 were quantitative and 11 had mixed methods. Outcome measures consistently examined included patient/caregiver satisfaction, hospital utilisation and home deaths. The components of standardised sessions (interdisciplinary meetings about patients), volunteer engagement and early intervention contributed to the success of community-based palliative care programmes. Conclusions: Certain components of community-based palliative care programmes are effective. Such components should be implemented and tested more in low- and middle-income countries and key and vulnerable populations such as lower-income and marginalised racial or ethnic groups. In addition, more research is needed on the cost-effectiveness of individual programme components.

In the United States, there are nearly 53 million informal or unpaid caregivers, many of whom experience mental and physical stress related to their caregiving duties and increased financial responsibility. We identified federal and state informal caregiver support policies authorized by specific legislation along with their key provisions and conducted a systematic review of the academic literature related to quantitative evaluations of these policies. Twenty policies, eight academic studies, and four gray literature reports were included in the study, with half of the policies introduced since 2000. Our study criteria yielded few academic valuations tied to caregiver policies and few policies including research provisions. Of the provision areas identified in policies, respite services, caregiver training, and workplace protections appeared the most. Future policies and the studies examining them should incorporate cost outcomes and equity as focus areas and disaggregate data by vulnerable groups to ensure value and equity in caregiver support legislation. Key messages: Increased legislation to support informal caregivers may be warranted. The limited academic research examining existing caregiver policies identifies mixed outcomes for caregivers. Prioritizing vulnerable populations in such policy research examining outcomes could help improve caregiver support efforts. The included studies investigated the outcomes of three policies and identified more negative than positive outcomes for caregivers.

Background: Racial/ethnic minority populations in the United States are less likely to utilize hospice services nearing their end of life, potentially diminishing their quality of care while also increasing medical costs. Objective: Explore the minority hospice utilization gap from the hospice perspective by examining perceived barriers and facilitators as well as practices and policies. Method: Qualitative surveys were conducted with 41 hospices across the United States. Qualitative data analysis included performing a limited content analysis, including the identification of themes and representative quotations. Results: Commonly reported barriers to hospice care for racial/ethnic minorities included culture/beliefs, mistrust of the medical system, and language barriers. A major theme pertaining to successful minority hospice enrollment was an inclusive culture that provided language services, staff cultural training, and a diverse staff. Another major theme was the importance of community outreach activities that extended beyond the medical community and forming relationships with churches, racial/ethnic minority community leaders, and Native American reservations. Conclusion: The importance of incorporating a culture of inclusivity by forming committees, providing language services, and offering culturally competent care emerged in this qualitative study. Building strong external relationships with community groups such as churches is a strategy used to increase racial/ethnic minority utilization of hospice.