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BACKGROUND: Vital components of communicating goals of care and preferences include eliciting the patient and caregivers definition of quality of life, understanding meaningful activities and relationships, and exploring wishes for care at the end of life. Although current literature suggests framing conversations regarding end of life through the lens of meaning and quality of life, there is limited literature exploring dyadic congruence surrounding these important constructs among patients with ventricular assist devices (VADs) and their caregivers. OBJECTIVES: The purpose of this study was to explore congruence of VAD patient and caregiver perspectives regarding end of life, definitions of quality of life, and meaning in life while managing the uncertainty of living with a VAD. METHODS: We used thematic analysis to analyze semistructured qualitative interviews of 10 patient-caregiver dyads 3 to 12 months after VAD implantation. RESULTS: Three major themes were identified: (1) differing trajectories of uncertainty and worry, (2) a spectrum of end-of-life perspectives, and (3) enjoying everyday moments and independence. Overall, patients and caregivers had differing perspectives regarding uncertainty and end of life. Within-dyad congruence was most evident as dyads discussed definitions of meaning or quality of life. CONCLUSIONS: Dyadic perspectives on end of life, meaning in life, and quality of life can inform how palliative care and VAD teams approach conversations about planning for the end of life. Findings from this study can inform future shared decision-making interventions for patients living with VADs and their caregivers.

Background: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent. Aim: To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs. Design: A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries. Data sources: Medline, Psychinfo, Global Health, Embase and CINAHL. Results: Thirty-five publications were included. Nearly half took place in Asia (n = 16, 45.7%). We identified five dominant typologies of primary palliative care, including delivery in primary care clinics by multidisciplinary healthcare teams and palliative care specialists, in people's homes by healthcare professionals and volunteers and in tertiary healthcare facilities by generalists. We designed a process model for how these models operate within larger health systems and identified barriers and facilitators to implementing primary palliative care in this context. Conclusion: Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need. [ABSTRACT FROM AUTHOR]

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services. [ABSTRACT FROM AUTHOR]

Aims: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. Design: Experience‐based co‐design. Methods: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. Results: Twenty‐three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient–provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow‐up care. Conclusion: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. Implications for the Profession and/or Patient Care and Impact: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. Reporting Method: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. Patient or Public Contribution: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience‐based co‐design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co‐design events, to support symptom management for people with multimorbidity. [ABSTRACT FROM AUTHOR]

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need. [ABSTRACT FROM AUTHOR]

The article presents the discussion on multimorbidity or living with two or more chronic condition. Topics include Cardiovascular disease (CVD) being a leading cause of death globally and an exemplar condition where individuals live with multimorbidity; and CVD being projected to increase globally as the population ages and advances in medical care improve longevity.

We aimed to disseminate reliable COVID-19 information to the Black and Latino communities of Baltimore City, Maryland, between July 2020 and December 2022. With community partners, we disseminated evidence-based COVID-19 information via grassroots and digital strategies, including Hopkins Opportunity for Participant Engagement, and connected volunteers to COVID-19 research. Using a multimodal approach facilitated dissemination of reliable information and raised awareness of research; evaluation of trust is ongoing. Robust, multimodal strategies are needed to foster trust and equity among diverse communities. ( Am J Public Health . 2024;114(S1):S69-S73. https://doi.org/10.2105/AJPH.2023.307492).

Background: We studied the pattern of herbal and dietary supplement (HDS) use in patients with chronic liver disease (CLD) during the first year of the COVID-19 pandemic., Methods: A questionnaire/survey was sent to hepatology patients with CLD under the care of hepatologists at Johns Hopkins University School of Medicine., Results: The 5 most taken dietary supplements during the pandemic included vitamin B12 (27.7%), vitamin C (32.4%), vitamin D (54.6%), zinc (25.4%) and green tea extract (20.8%). Most participants (82.3%) did not discuss their HDS use with their hepatology providers., Conclusions: Healthcare providers should be mindful of potential HDS use in patients with CLD., Competing Interests: Conflict of Interest None., (Copyright © 2023 InnoVision Professional Media Inc.)