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1.
International Journal of Infectious Diseases ; 130(Supplement 2):S61, 2023.
Article in English | EMBASE | ID: covidwho-2326324

ABSTRACT

Intro: COVID-19 the most notorious Public Health Emergency (PHE), changed the way we practice medicine and taught us important lessons. The most effective measures to control pandemic are early administration and equitable access to vaccines and treatments. Governmental Public Health Agencies (GPHA) at all levels should have a leading role in coordination and implementation of control measures. Partnership between GPHA and health systems (HS) may significantly impact the scope of provided services. Monkeypox was declared PHE during the COVID-19 pandemic. It provided an opportunity to apply learned lessons that mitigated COVID-19 pandemic. Method(s): Spectrum Health (SH) is a quaternary-care HS based in Grand Rapids, Michigan. We will describe SH's response to COVID-19 and how we used our COVID experience to handle the Monkeypox outbreak. Finding(s): In response to COVID, through the phased approach (Picture 1) and collaboration with internal departments and GPHA, we opened a new clinic. Clinic was initially intended for parenteral COVID treatments but gradually evolved into a full COVID treatment center. Within 18 months we treated 12666 patients. Clinic success, efforts made to establish it, and concerns about future pandemics defined the need for a permanent and scalable centralized department which would provide continual community support with a measured response to meet community needs while minimizing impact on hospital resources, thus Community Response Department (CRD) was born. When Monkeypox PHE was declared, CRD responded immediately and efficiently using its resources and established pathways and demonstrated its own utility. Monkeypox treatment and vaccine were available to patients through the CRD within 7 days from governmental approval.Copyright © 2023

2.
Labour and Industry ; 2023.
Article in English | Scopus | ID: covidwho-2325775

ABSTRACT

This paper investigates the way in which COVID-19 has exacerbated the poor work conditions within community support work in Aotearoa-New Zealand. It examines the invisibility of care work in New Zealand during the COVID-19 pandemic, in terms of Government policy and communication, societal recognition of care work, and the spatially hidden nature of the work. It does so within the of gender norms in the socio-cultural, socio-spatial and socio-legal spheres that render this work and workers invisible. This paper documents the experiences of community support workers and contributes to our theoretical understanding of frontline health workers' experiences of work during a global public health crisis. © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

3.
Scand J Public Health ; : 14034948221139005, 2023 Apr 12.
Article in English | MEDLINE | ID: covidwho-2296586

ABSTRACT

BACKGROUND: In Nunavut, where 70% of children are food insecure, many households rely on school breakfast or community food programmes for nourishment. The COVID-19 pandemic and resulting policies to reduce the spread of the disease have the potential to exacerbate existing issues, including increasing food insecurity in households. Funding programmes were implemented to limit the impact of public-health measures on household and community food security. The overall effects of the actions are not yet understood. METHODS: This project used a qualitative approach to examine the determinants of food security and sovereignty and the impact of the COVID-19 pandemic policy responses on these determinants in Arviat and Iqaluit. Narrative analysis applied within a relational epistemology was used to describe the experiences of community members in Iqaluit and Arviat during the COVID-19 pandemic. RESULTS: Seven participants were interviewed in Iqaluit (n=3) and Arviat (n=4). Key themes included the importance of decolonisation for food sovereignty, the importance of food sharing to communities and the resilience of communities during COVID-19. Community members wished to see greater support and strengthening of the country (locally harvested) food economy to increase knowledge of food and harvesting skill, and for communities to find ways to reach residents who may fall through the cracks during times of need or crisis. CONCLUSIONS: This study is one of the first to document Nunavummiut experiences and perspectives of food security and sovereignty in Arviat and Iqaluit during the COVID-19 pandemic.

4.
Proceedings of the Association for Information Science and Technology ; 59(1):469-473, 2022.
Article in English | Scopus | ID: covidwho-2274178

ABSTRACT

Information resilience has become a topic of interest to the information science community in recent years. The COVID-19 pandemic has shone a light on the vulnerability of information and other networks and the impact on information providers and the information seekers who rely on them. In an exploratory study, we interviewed support workers who act as information intermediaries as part of their work roles about their experiences of providing information to vulnerable and marginalised people during the UK COVID-19 lockdown. We present findings organised in three themes: shifting client information needs and support provisions, adjusting information sharing and communication practices and workarounds for physical information work. Throughout the themes, information resilience is evident as information intermediaries adapt their work practices to ensure they can continue to serve their clients. In this first stage of research our findings provide insight into the changes to information intermediaries' information behaviour and information work during a crisis, as well as the impact of these changes on the services they provide. 85th Annual Meeting of the Association for Information Science & Technology ;Oct. 29 – Nov. 1, 2022 ;Pittsburgh, PA. Author(s) retain copyright, but ASIS&T receives an exclusive publication license.

5.
8th EAI International Conference on Smart Objects and Technologies for social Goods, GOODTECHS 2022 ; 476 LNICST:63-79, 2023.
Article in English | Scopus | ID: covidwho-2269171

ABSTRACT

COVID-19 showed the need for community support networks to help vulnerable individuals that were forced to stay in their homes during extended periods. While the pandemic is slowly passing, there is still a need for this type of help, especially for elderly who nowadays want to live longer in their own home. Several social engagement platforms are already offering support for this type of services. However, some became rather inactive, while others are successful but not always in the context of offering help to vulnerable elderly. In this paper we present 16 design recommendations to consider when designing (or to improve) social engagement platforms focused on volunteerism for helping older people. These recommendations are based on the evaluation of 10 digital social engagement platforms that allow asking for assistance and/or volunteering to provide help. © 2023, ICST Institute for Computer Sciences, Social Informatics and Telecommunications Engineering.

6.
Form@re ; 23(1):89-100, 2023.
Article in English | ProQuest Central | ID: covidwho-2256645

ABSTRACT

In this article, we will try to follow a narrative trajectory that, through the first-person story of Marta as a volunteer educator, introduces some of the territorial educational experiences organized by local commons in the city of Naples. The nature of these spaces tries to put the needs of the common individual at the center and each educational reality narrated, each in its own way, tries to create community through dialogic actions with the people living in the neighborhood, engaging in the promotion of paths of mutual help, built from below starting by sharing practices of community support. In the story of educational experiences, experiences that have abruptly interrupted with the pandemic, we will let ourselves be supported by the theoretical frame of reference of Paulo Freire's critical pedagogy, just as we will try to reflect, in terms of spaces as horizons of educationally sustainable possibilities, the post-pandemic situation. L'educazione popolare prima e dopo il covid: esperienze partenopee. In questo articolo cercheremo di percorrere una traiettoria narrativa che, attraverso il racconto in prima persona di Marta in qualità di educatrice volontaria, introduca ad alcune delle esperienze educative territoriali organizzate dai beni comuni presenti nel territorio di Napoli. La natura di questi spazi prova a mettere al centro i bisogni del cittadino ed ogni realtà educativa narrata, ognuna a suo modo, cerca di creare comunità attraverso azioni dialogiche con gli abitanti dei diversi quartieri, impegnandosi nella promozione di percorsi di mutuo aiuto, costruiti dal basso a partire dalla condivisione di pratiche a supporto della comunità. Nel racconto delle esperienze educative, esperienze che si sono interrotte bruscamente con la pandemia, ci lasceremo supportare dalla cornice di riferimento teorico della pedagogia critica di Paulo Freire, così come proveremo a riflettere, in termini di spazi quali orizzonti di possibilità educativamente sostenibili, la situazione post-pandemica.

7.
Social & Cultural Geography ; 24(3-4):542-562, 2023.
Article in English | ProQuest Central | ID: covidwho-2255284

ABSTRACT

Throughout this article, we focus on the lives and experiences of residents in the Sun Valley public housing project in Denver. During the stay-at-home orders, the Sun Valley residents – an economically impoverished yet diverse community that includes refugees, Black and LatinX families, single-parent households, and individuals who are permanently disabled – faced extremely precarious conditions. COVID exposed and exacerbated the already failed infrastructures in Sun Valley, but within this failure, radical openings emerged, new connections surfaced and alternative practices developed among the residents leading to vernacular infrastructures of care. To understand and highlight these vernacular infrastructures, we utilized a combination of photography and interviews to understand 17 residents' and key community support actors' experiences during the initial stay-at-home orders from March to June 2020. From this data, we argue that, through community practices and relationships, Sun Valley residents' and community support networks addressed the crisis and uncertainty by developing vernacular infrastructures of care.

8.
Psychosis: Psychological, Social and Integrative Approaches ; 12(2):101-105, 2020.
Article in English | APA PsycInfo | ID: covidwho-2285778

ABSTRACT

The Chair of The National Hearing Voices Network (http://www.hearing-voices.org/HVN) prepared this document, on behalf of the HVN Board, to provide some sources of information and support for its members, and others, during the Covid-19 pandemic. At the request of the journal Editor (also a member of the HVN Board), the document is published here, verbatim, for Psychosis readers around the world. Although targeted at people in the UK who hear voices or see visions, much of the information is potentially also relevant for other people, including mental health professionals. Like HVN, neither the journal nor ISPS endorse or recommend specific mental health services or practitioners. We recognise that different things are helpful for different people. The document is published merely to increase the range of options for people to choose from if they feel the need for additional support or information. All at HVN, Psychosis and ISPS wish readers a safe passage though the current stormy waters, which, despite all the fears and losses, are providing us all with opportunities to take care of one another like many of us have never experienced before. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

9.
Cancer Research Conference ; 83(5 Supplement), 2022.
Article in English | EMBASE | ID: covidwho-2282478

ABSTRACT

Early in the pandemic, cancer centers across the nation and Oregon canceled their cancer support programs as non-essential medical care. Breast cancer patients were forced to look elsewhere for essential assistance and community support to move along their cancer journeys. Pink Lemonade Project (PLP), a Vancouver, WA based community based nonprofit, helped fill the gaps and expanded its local support for breast cancer patients. A virtual format allowed PLP to serve more individuals with our psychological, emotional and financial support programs. Next, PLP convened an informal coalition of all the local breast cancer support organizations including those that offer breast cancer support programs, community including dragon boating and rowing, and others that serve broader communities and more people of color. Then, as Komen National announced its restructuring, and closed the Oregon-Southwest Washington affiliate in Spring 2021, Pink Lemonade Project stepped up again to maintain two locally-grown Komen programs that met critical community need-the MBC Dinner Series and the Treatment Access Program (TAP), a transportation assistance program that served all of Oregon and reduced the geographic barrier to care. Through the coalition, PLP heard patients express concern that they were receiving outdated information and were struggling more to find needed support and resources from their providers. Understandably, nurse navigators and social workers could not maintain and/or update patient resources while they assisted COVID patients. The goal of the coalition was to increase communication across the organizations and to share more event schedules for the ease of patients to understand what support programs are available. This session, delivered by an all breast cancer patient panel, will give an overview of Pink Lemonade Project;its programs that helps with psychological, emotional, community and financial support for breast cancer patients, survivors and those living with metastatic breast cancer;and will highlight the results from the patient point of view of the systematic review of the contents of 6 regional health systems new patient binders and present recommendations for consistent, community-wide content for all future breast cancer patients. The project's main strength was that Pink Lemonade Project could draw upon on an existing coalition of local, community-based breast cancer organizations to help update and standardize breast cancer support information from the patient point of view. Then by acting as a neutral convener, PLP could request and receive the binders from all the region's healthcare providers to help standardize and update the community resources across all the region's cancer centers. The result is that any new breast cancer patient, regardless of where their access to care is, can receive consistent community-based information and resources. Another result of this project showed the importance of the partnership of healthcare and human service agencies, especially in a post-pandemic world. As the pandemic continues to strain healthcare, community-based nonprofits have a unique role to help coordinate community resources and improve the quality of life for those affected by breast cancer.

10.
Vaccine: X ; 13, 2023.
Article in English | EMBASE | ID: covidwho-2246610

ABSTRACT

Safe, effective, and accessible vaccines are urgently needed to end tuberculosis (TB) by 2030. The 6th Global Forum on TB Vaccines, convened virtually 22–25 February 2022, was hosted by Toulouse, France, under the high patronage of President Emmanuel Macron, and the patronages of Minister for Solidarity and Health, Olivier Véran, and Minister for Higher Education, Research and Innovation, Frédérique Vidal. The theme for the meeting, "New horizons for TB vaccines”, reflected the changing landscape in which TB vaccine research and development (R&D) is being conducted: TB vaccines advancing into late-stage clinical trials and toward licensure, innovative research toward diversifying the TB vaccine pipeline and developing the next generation of candidates, increasing political, civil society, and community support for TB vaccines, and the ongoing COVID-19 pandemic. In this report, we summarize key themes and findings from the meeting, highlighting progress and gaps in the TB vaccine field.

11.
Gac Sanit ; 37: 102265, 2022 Oct 11.
Article in English | MEDLINE | ID: covidwho-2245939

ABSTRACT

OBJECTIVE: To identify the driving and inhibiting factors and to find a prototype of community involvement in the COVID-19 vaccine. METHOD: Data sources from PubMed database, Google Scholar, Web of Science, and ProQuest. The data were obtained based on searches using the keyword COVID-19 (n=11,.599), focusing on community acceptance (n=813), community involvement (n=86), and types of articles (n=46). Articles that meet the inclusion criteria are seven, and the data were analyzed with ATLAS Ti.9 software. RESULTS: Engagement and driving factors have the highest correlation (0.38). The drivers, perceptions of vulnerability, and inhibiting factors determine community involvement. The perception of exposure can be a supporting or inhibiting factor influenced by information reinforcement. CONCLUSIONS: Strengthening positive information can alter the sense of community vulnerability, making it a driving force for participation in the COVID-19 vaccine campaign. This finding is an appropriate strategy to expand the reach and resolve public doubts about accepting the vaccine.

12.
J Community Psychol ; 2022 Jun 30.
Article in English | MEDLINE | ID: covidwho-2242233

ABSTRACT

The Ultra-Orthodox community in Israel, characterized by close-knit ties and strong community values, has been particularly vulnerable to COVID-19, both epidemiologically and socially. Accordingly, the current study examined whether the connection between the sense of community and life satisfaction in this population is mediated by meaning in life (MIL). Three hundred and fifty-eight Ultra-Orthodox participants (age range: 30-70; M = 49.50, SD = 10.24) filled out scales assessing MIL, sense of community, and satisfaction with life (SWL), as well as sociodemographic and COVID-19-related scales. Sense of community was linked with increased MIL and life satisfaction. Moreover, the connection between sense of community and life satisfaction was mediated by MIL. This study highlights the roles of sense of community and MIL for Ultra-Orthodox individuals and emphasizes the importance of both concepts for maintaining SWL during COVID-19. Practical implications for Ultra-Orthodox communities are suggested.

13.
BMJ Supportive & Palliative Care ; 13(Suppl 1):A6, 2023.
Article in English | ProQuest Central | ID: covidwho-2223773

ABSTRACT

IntroductionMillions became bereaved during the pandemic, with many facing challenges accessing support.AimsTo describe the use and helpfulness of different types of support in a cohort of people bereaved during the pandemic in the UK.MethodsA longitudinal survey of people bereaved during the pandemic over four time points. At 7- and 13-months post-bereavement (T2 and T3), participants rated the helpfulness of support used and described how they had been helped by this support.Results420 participants completed at least one follow-up survey (T2, T3 or both). Most respondents were female (88.3%) and had lost a parent (57.6%) or partner (24.3%), with 3.3% from a minoritised ethnic background. Support from family and friends, reported by 89.3% of participants, was rated as ‘quite helpful' (mean rating 4.3 out of 5), and included help with practical tasks, expressing feelings/sharing grief, remembering, feeling cared for and less isolated. The most commonly used form of other support was 1:1 support (e.g. counselling), used by 40.5% of participants, with an average helpfulness rating of 4.1, helping participants feel listened to and process their grief. Online community support, used by 31.0% of participants, was also rated ‘quite helpful' (3.9), enabling sharing with similar others, feeling understood and less alone. Informal and formal bereavement groups were rated as similarly helpful (4.2) while helplines and specialist mental health support were slightly less helpful (3.6) (used by 9.3%, 4.8%, 7.1% and 4.5% of participants, respectively).ConclusionsResults demonstrate the perceived benefits and helpfulness of different forms of bereavement support used during the pandemic.ImpactThese findings highlight the value of informal as well as formal support, particularly bereavement counselling. Policy makers must attend to the foundational and second tiers of the public health model of bereavement support, supporting communities as well as services.

14.
SSM - Qualitative Research in Health ; : 100225, 2023.
Article in English | ScienceDirect | ID: covidwho-2211503

ABSTRACT

The COVID-19 pandemic had a disproportionate, negative effect on Black Americans. Black-owned barbershops/beauty salons are traditionally trusted, yet little is known regarding how these "virtue locales” were affected by the pandemic. This theory-guided, qualitative descriptive study explored owners' experiences in addressing their clients' and community well-being during the first pandemic year, revealing four emergent themes: 1) "blessings” and cultural expectations informed a moral imperative to become servant leaders, 2) long-standing relationships resulted in opportunities to engage on topics of physical and mental health, 3) Barbershop/beauty salon-based COVID-19 information and resources led to individual and community empowerment, and 4) Barbershops and beauty salons were "virtue locales”, or physical manifestations of social responsibility and psychological safety during the pandemic. These results support that these locations are trusted spaces where health issues can be discussed, and that their owners are willing and trusted community leaders that can be leveraged to implement culturally appropriate health interventions.

15.
Int J Environ Res Public Health ; 19(21)2022 Nov 06.
Article in English | MEDLINE | ID: covidwho-2099554

ABSTRACT

To explore the relationship between community support in tourist destinations and residents' psychological well-being in the post-COVID-19 pandemic period, this study adopts the questionnaire survey method and draws the following conclusions by constructing a structural equation model: (1) perceived community support is very helpful for the psychological well-being of residents, (2) psychological resilience significantly mediates the relationship between perceived community support and residents' psychological well-being, (3) the resident-tourist interaction mediates the relationship between perceived community support and residents' psychological well-being, and (4) the resident-tourist interaction and psychological resilience play an ordered chain-mediating role between perceived community support and residents' psychological well-being. These findings not only fill the gap in tourism research regarding destination-based community support studies but also provide a theoretical basis for maintaining residents' psychological well-being in a given destination in the context of the COVID-19 pandemic. To a certain extent, improving residents' well-being is helpful for promoting the healthy and sustainable development of tourism activities and realizing a "win-win" situation in which tourist destinations develop economically while promoting their residents' living standards.


Subject(s)
COVID-19 , Community Support , Humans , COVID-19/epidemiology , Pandemics , Surveys and Questionnaires , Health Status
16.
Journal of Beliefs & Values ; 43(4):512-524, 2022.
Article in English | ProQuest Central | ID: covidwho-2062666

ABSTRACT

This research explored how religious coping and religious identity are related to post-pandemic well-being among Chinese university students. The brief RCOPE, Multi-Religion Identity Measure, and post-pandemic well-being scale were administered to 1739 university students. Results showed that religious coping was significantly positively related to post-pandemic well-being, while religious identity was significantly negatively related to post-pandemic well-being beyond demographic variables. The research implicated that university administrators and teachers can use the above inventories to understand religious coping, religious identity, and post-pandemic well-being among university students more comprehensively. Second, professional religious personnel such as Dharma Masters, Preachers, and Imams could promote students’ post-pandemic well-being by increasing their religiousness within legal places of worship. Third, the findings can help students understand the associations between religious coping, religious identity, and post-pandemic well-being, which may stimulate them to improve the latter by increasing their religious coping and religious identity. The significance and limitations of the present research are also discussed.

17.
Journal of Policy Modeling ; 2022.
Article in English | ScienceDirect | ID: covidwho-2041973

ABSTRACT

We argue that the volume of remittances sent home by migrants is influenced by the exogenous likelihood that the duration of their migration will be cut short. A higher probability of reverse migration, brought about by the collapse of jobs in the wake of COVID-19, made migrants attach greater importance to the creation of a social and economic environment in their places of origin that can support them when they return. There are several ways in which this can be done. One is by instilling gratitude. When bigger remittances are responded to by greater gratitude, the support will be bigger. An impact of the COVID-19 pandemic on migrants’ perceived duration of their migration is an increase in the uncertainty of the duration. The good will of migrants’ families and communities at origin is a form of insurance. A standard response to uncertainty is to take out insurance, and when uncertainty is higher, insurance is more valuable, and there is a tendency to acquire more of it. As it happens, the link between the volume of remittances and the likelihood of return migration does not feature at all in Shastri’s (2022) paper, nor for that matter in related writings by the World Bank and the IMF. The purpose of this rejoinder is to draw attention to this link, inducing students of migrants’ remittances to explore the link.

18.
Journal of the Canadian Association of Gastroenterology ; 5, 2022.
Article in English | EMBASE | ID: covidwho-2032069

ABSTRACT

Background: Alcohol-related hepatitis (AH) is the most severe form of alcohol-related liver disease, with rising incidence. Stay-at-home orders for the COVID-19 pandemic were associated with increased alcohol consumption. Online sales reported a 262% increase from March 2019 to 2020. Aims: The purpose of this study was to track the epidemiology of hospitalizations for AH by sex before and after the COVID-19 pandemic. We hypothesized that AH would be more severe in females and younger individuals during the pandemic. Methods: Using the Discharge Database, we identified all hospitalizations in Alberta with international classification of disease-10 codes for AH between March 2018 and September 2020. We merged this dataset with provincial laboratory data to identify all inpatient lab values. We calculated Model for End-Stage Liver Disease (MELD) and Maddrey scores and validated a laboratory-based algorithm for AH. Severe AH was defined as Maddrey score > 32. Onset of the pandemic was defined as March 2020. Stratified by pandemic onset, descriptive statistics were done with Chi-squared and Kruskal Wallis tests. Inpatient mortality was assessed as a primary outcome. Binomial regression was used to assess changes in frequency of admission for AH with the denominator as all cirrhosis-related admissions over the same time-period. Results: We identified 991 hospitalizations for AH prior to the pandemic (n=381, 38.5% female) and 417 during the pandemic (n=144, 34.5% female). Hospitalizations for AH significantly increased during the pandemic (p = 0.04) (Figure 1). Median Maddrey score for females (30.5) before the pandemic was significantly higher than for males (22.9), p < 0.01. During the pandemic, median Maddrey for females (28.7) was higher than males 21.4, p = 0.07. Median age at admission was significantly lower for both males and females during the pandemic (age 44 and 41, respectively) as compared to prior (age 47 and 45, respectively) p < 0.05. There was no significant difference in MELD between sexes before (13.5 for females, 14.0 for males, p = 0.15) and during the pandemic (13.3 for females, 13.0 for males, p = 0.75). Additionally, there was no significant difference in mortality between sexes before (10.4% in females, 11.5% in males, p = 0.22) and after the pandemic (9.2% in females, 9.9% in males, p = 0.67). Conclusions: Hospitalizations for AH rose during the pandemic and occurred at younger ages. There was no significant difference in disease severity or mortality before and during the pandemic. Overall, females have more severe AH than males. Public health efforts should continue to be made to educate about the harms of alcohol excess and offer community support. Future studies will expand the trend through multiple pandemic waves. (Figure Presented).

19.
Ecclesiastical Law Journal ; 24(3):378-382, 2022.
Article in English | ProQuest Central | ID: covidwho-2016445

ABSTRACT

In May, Baroness Hallett published her Terms of Reference Consultation Summary Report on the responses to her consultation on the Government's proposed terms of reference for the UK COVID-19 Inquiry, together with her conclusions.1 A major criticism of the draft terms, particularly but not exclusively from faith communities, had been the total absence of any mention of the impact of the COVID-19 restrictions on the practice of religion. Baroness Hallett noted that the consultation had ‘heard from faith groups about the restrictions applied to places of worship and the impact this had on community support, the marking of life events such as marriages and funerals, and the observation of religious festivals’ and the concerns expressed about the interaction between restrictions on places of worship and Convention rights. In February 2020 the Court of Appeal had upheld the judgment of McBride J at first instance that the Charity Commission for Northern Ireland did not have implied or express power to delegate its functions to staff acting alone.6 The effect was to render unlawful all previous decisions taken by Commission staff where the staff member's authority to take the decision depended on the Commission having delegated a statutory power or duty. The Act amends the Charities Act (Northern Ireland) 2008 with retrospective effect so as to render lawful previous decisions taken by Commission staff in reliance on the unlawful delegation, where to do so is consistent with rights under the European Convention on Human Rights and where the decision to be validated was not unlawful on other grounds.

20.
Journal of Clinical Oncology ; 40(16), 2022.
Article in English | EMBASE | ID: covidwho-2009572

ABSTRACT

Background: Currently, Black patients make up 20% of people living with multiple myeloma, yet they represent only 6% of participants in clinical trials.1 The underrepresentation of Black patients in clinical trials can contribute to outcome disparities thereby negatively impacting health equity in cancer treatment and outcomes.2 This project examined attitudes towards clinical trials among Black multiple myeloma patients and caregivers. Findings will inform the development of programs aimed at increasing clinical trial participation in this population. Methods: In 2021, the Cancer Support Community conducted an online survey to gain insights on barriers, facilitators, and perceptions of clinical trials among Black multiple myeloma patients and caregivers/care partners. Survey questions were informed by insights from prior focus groups. 94 patients and 101 caregivers were surveyed. Results: Most participants were male (62%) and African American (90%). 5% identified as African Caribbean and 5% as Black and Hispanic. The average age was 46 years. Just over half (51%) currently or previously participated in clinical trials. Of those who chose not to participate in a trial, the most common reasons were fear of side effects (46%) and fear of receiving a placebo (38%). Another barrier to participation reported was discomfort with being randomly assigned to a treatment (56%). Participants reported a significant level of distrust in medical research and doctors, saying that it was “very or somewhat likely” that doctors provide treatment as part of an experiment without patient consent (41%) and that they might be used as a “guinea pig” (25%). Of note, 57% of respondents said COVID had changed their attitude towards participating in clinical trials. 14 of 16 factors mentioned in our focus groups were affirmed by more than half of respondents as facilitating participation in a clinical trial. The top factors were: Understanding potential side effects (66%) My health care team speaks to me about trials (65%) Compensation offered for transportation, childcare, or time off work (62%) My family/community support my decision (61%). Conclusions: These findings are consistent with previous research which found that cancer patients reported the biggest attitudinal barriers to clinical trial participation were fear of side effects, distrust in medical research, and random assignment to clinical trial groups.3 Our study highlights that Blacks and African Americans living with multiple myeloma value multifactorial efforts to increase clinical trial participation: logistical and financial interventions, patient/provider communication, and culturally sensitive support and education programs. These programs can also work to improve health equity by reducing barriers to overall care and encouraging Blacks and African Americans living with multiple myeloma to be active members of their health care team.

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