Public health palliative care interventions that enable communities to support people who are dying and their carers: a scoping review of studies that assess person-centered outcomes

BACKGROUND: Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers. OBJECTIVE: To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. METHODS: A scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines. RESULTS: The search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy. CONCLUSION: We found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions

Condensed-Phase Photochemistry in the Absence of Radiation Chemistry

We report post-irradiation photochemistry studies of condensed ammonia using photons of energies below condensed ammonia’s ionization threshold of ~ 9 eV. Hydrazine (N2H4), diazene (also known as diimide and diimine) (N2H2), triazane (N3H5), and one or more isomers of N3H3 are detected as photochemistry products during temperature-programmed desorption. Product yields increase monotonically with (1) photon fluence and (2) film thickness. In the studies reported herein, the energies of photons responsible for product formation are constrained to less than 7.4 eV. Previous post-irradiation photochemistry studies of condensed ammonia employed photons sufficiently energetic to ionize condensed ammonia and initiate radiation chemistry. Such studies typically involve ion-molecule reactions and electron-induced reactions in addition to photochemistry. Although photochemistry is cited as a dominant mechanism for the synthesis of prebiotic molecules in interstellar ices, to the best of our knowledge, ours is one of the first astrochemically-relevant studies that has found unambiguous evidence for condensed-phase chemical synthesis induced by photons in the absence of ionization

THE IMPACT OF PALLIATIVE CARE FOR PATIENTS REQUIRING EXTRACORPOREAL MEMBRANE OXYGENATION (ECMO) SUPPORT: A MIXED-METHODS STUDY

Background: Palliative care (PC) is a patient and family centered model of care that prioritizes quality of life for patients with life-limiting illness. There is extensive evidence demonstrating the benefits of PC in patients in intensive care but no studies to date that examined the impact of PC for patients on extracorporeal membrane oxygenation (ECMO). We aimed to describe of PC utilization in patients requiring ECMO support and to compare key outcomes and experiences between those who received PC and those who did not. Methods: For this explanatory mixed-methods study, we employed quantitative analysis of data from a prospective, observational cohort of patients who received ECMO support between July 2016 and September 2021 and qualitative data collection via semi-structured interviews. We utilized ANOVA, Fisher’s Exact tests, and multivariate linear and logistic regression. We performed thematic analysis of interviews with patients and care partners. The analysis was guided by the biopsychosocial framework of health. Results: Of the 256 patients, the median age was 55 years (range 18 to 83) and 44.1% were seen by the PC team. After controlling for age and the specialty of the attending physician, there was no significant difference mortality comparing those who were seen by the PC team and those who were not. Additionally, patients who received a PC consult were significantly less sedated than those who did not. For the qualitative portion, 10 patients and 11 care partners were interviewed. More than half (n = 13, 62%) received a PC consult while on ECMO. They recounted symptoms such like pain, withdrawal, and delirium, psychological experiences like fear, anxiety, helplessness, and uncertainty about the future, and suggestions to improve communication, education, social support. Participants reported mixed feelings about PC. Conclusion: PC can benefit patients and care partners without increasing the likelihood of mortality but was underutilized in this population. More research is needed to define and quantify PC’s benefit and to develop new strategies to increase uptake of PC for patients on ECMO

Talking Around It: A Qualitative Study Exploring Dyadic Congruence in Managing the Uncertainty of Living With a Ventricular Assist Device.

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

Engaging with communities in rural, coastal and low-income areas to understand barriers to palliative care and bereavement support: reflections on a community engagement programme in South-west England

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

Identification and developmental expression of new biomineralization proteins in the sea urchin Strongylocentrotus purpuratus.

The endoskeleton of the sea urchin larva is a network of calcareous rods secreted by primary mesenchyme cells (PMCs). In this study, we identified seven new biomineralization-related proteins through an analysis of a large database of gene products expressed by PMCs. The proteins include three new spicule matrix proteins (SpSM29, SpSM32, and SpC-lectin), two proteins related to the PMC-specific cell surface glycoprotein MSP130 (MSP130-related-1 and -2), and two novel proteins (SpP16 and SpP19). The genes encoding these proteins are expressed specifically by cells of the large micromere-PMC lineage and are activated zygotically beginning at the blastula stage, prior to PMC ingression. Several of the mRNAs show regulated patterns of expression within the PMC syncytium that correlate with the pattern of skeletal rod growth. This work identifies new proteins that may regulate the process of biomineralization in this tractable model system.</p