"It's harder for the likes of us": racially minoritised stem cell donation as ethico-racial imperative.
Ontology highlight
ABSTRACT: Supplementary information
The online version contains supplementary material available at 10.1057/s41292-021-00241-9.
SUBMITTER: Williams R
PROVIDER: S-EPMC8275909 | biostudies-literature | 2021
REPOSITORIES: biostudies-literature
Publications
"It's harder for the likes of us": racially minoritised stem cell donation as ethico-racial imperative.
BioSocieties 20210713 4
How best are we to understand appeals to participate in a biomedical project that are based both on invoking shared racial identity, and on framing engagement as the clear moral course of action? Stem cell donor recruitment, which often focuses on engaging racially minoritised communities, provides useful insight into this question. This article proposes that it is not an essential mutual racial identity between the person asking and the person asked at play. Rather, it is the creative 'doing' o ...[more]
Similar Datasets
Project description:ObjectiveThe degree awarding gap indicates that racially minoritised higher education students receive lower degree classifications relative to their white peers. While the reasons for this are complex, research suggests that educator and practitioner attitudes and behaviour towards racially minoritised students are a significant contributing factor. This preregistered study evaluates the effectiveness of unconscious racial bias training (URBT) to enhance National Health Service senior practitioner's recognition of how racial inequalities negatively impact racially minoritised students.DesignA mixed-methods study with a pretest and post-test design was conducted in the higher education and healthcare practice environment.MethodsForty-nine NHS senior practitioners completed a 4-hour URBT workshop with activities focusing on activating stereotypes, exploring differences between unconscious and implicit bias, discussing the development of bias, and reflecting on student experiences of prejudice, harassment and discrimination. They completed pre- and post- quantitative measures that assessed the effectiveness of URBT and changes in racial competency, awareness and perceptions of unconscious racial bias. Qualitative measures explored the usefulness and perceived applications of URBT, and a 1-month follow-up assessed further how it had been applied within practice.ResultsParticipants reported positive evaluations of URBT, higher perceived racial competency, awareness and perceptions of racial bias (ps<0.001, dz>0.35). After 1 month, key themes from qualitative responses suggested that participants had increased self-awareness and were exploring how to set up mentoring and working groups, change recruitment and progression processes, and diversify the taught curriculum.ConclusionsURBT may be one effective strategy to enhance awareness and encourage reflections of racial bias. We discuss how reducing racial inequalities requires a multifaceted approach that affords upfront conversations about systemic racism, implements effective initiatives, policies and procedures, and engages in continuous evaluation.
| S-EPMC9872466 | biostudies-literature
Project description:Past research has produced evidence that parsing commitments strengthen over the processing of additional linguistic elements that are consistent with the commitments and undoing strong commitments takes more time than undoing weak commitments. It remains unclear, however, whether this so-called digging-in effect is exclusively due to the length of an ambiguous region or at least partly to the extra cost of processing these additional phrases. The current study addressed this issue by testing Japanese relative clause structure, where lexical content and sentence meaning were controlled for. The results showed evidence for a digging-in effect reflecting the strengthened commitment to an incorrect analysis caused by the processing of additional adjuncts. Our study provides strong support for the dynamical, self-organizing models of sentence processing but poses a problem for other models including serial two-stage models as well as frequency-based probabilistic models such as the surprisal theory.
| S-EPMC4894567 | biostudies-literature
Project description:BackgroundCodesign of mental health interventions entails the active involvement of end users and other stakeholders in various stages of the developmental process. This has emerged as a promising approach for developing evidence-based mental health interventions aligned with minoritised populations' needs and preferences. However, key questions remain about the methods and outcomes of codesign studies focused on young people from racially minoritised groups. The current review aimed to explore the codesign approaches and phases used in developing mental health interventions with young people from racially minoritised populations, analyse the codesign outcomes for participants and examine the contextual enablers and barriers impacting the codesign process.MethodsA systematic search was conducted across MEDLINE, EMBASE, PsycINFO, Global Health, Web of Science and Scopus. Citations and references of included studies were also checked. Study quality and reporting of codesign were assessed using the Mixed Method Appraisal Tools and the Guidance for Reporting Involvement of Patients and the Public-2 checklist. Data were synthesised using narrative synthesis, content analysis and meta-synthesis.ResultsEighteen eligible studies reported various codesign and participatory approaches, including community-based participatory research, co-production, human-centred design, youth and family codesign model, community engagement research, community development model, participatory evaluation model, participatory research design approach and community participatory research partnership. The most common codesign stages followed were exploring problems and solutions, ideating and creating, and refining. In terms of outcomes, the reported benefits of codesign for young people included personal development and well-being, enhanced knowledge and career skills, and better mental health outcomes. Codesigning with youth and other stakeholders (e.g., family members, other caregivers, community members and practitioners) also improved the research projects by identifying specific problems, increasing participant recruitment and enhancing data collection. Additionally, other stakeholders gained a platform to share their expertise, understand youth mental health and build capacity through codesign. Regarding enablers and barriers, reducing power differentials, fostering community engagement and collaboration with other stakeholders facilitated the codesign process, whereas barriers included lack of resources, power imbalances, lack of rapport building and selection bias.ConclusionsThis review outlines the potential benefits of codesign for developing mental health interventions for racially minoritised youth. These benefits include continuous stakeholder engagement to understand community needs better, reducing power differentials and building trust through culturally tailored activities and communication strategies.Patient and public contributionPatients and the public did not contribute directly to this review though the reviewed literature was specifically concerned with participatory research activities.
| S-EPMC11883660 | biostudies-literature
Project description:Workplace incivility is a pervasive complex problem within health care. Incivility manifests as subtle disrespectful behaviours, which seem inconsequential. However, evidence demonstrates that incivility can be harmful to targets and witnesses through negative emotions, poorer mental health, reduced job satisfaction, diminished performance and compromised patient care. It is unclear to what extent existing research critically explores how ethnicity, culture and racism influence how hospital staff experience incivility. This global scoping review systematically analysed existing research exploring the specific ways incivility manifests and impacts racially minoritised hospital workers. Of 2636 academic and 101 grey literature articles, 32 were included. Incivility experiences were categorised into four themes: (1) Cultural control, (2) Rejection of work contributions, (3) Disempowerment at work and (4) Managerial indifference. The included articles highlighted detrimental consequences, such as negative emotions, silencing, withdrawal and reduced support-seeking behaviours. Few studies presented evidence regarding the negative impacts of incivility on patient care. Racialisation and racial dynamics are a significant factor for hospital-based incivility. Currently we do not know the extent to which racialised incivility is associated directly or, perhaps either via burnout or disengagement, indirectly with poorer care. This knowledge can inform the creation of comprehensive, evidence-based interventions to address this important issue.
| S-EPMC11684503 | biostudies-literature
Project description:Within high-income-countries, the COVID-19 pandemic has disproportionately impacted people from racially minoritised backgrounds. There has been significant research interrogating the disparate impact of the virus, and recently, interest in the long-term implications of the global crisis on young people's mental health and wellbeing. However, less work explores the experiences of young people from racialised backgrounds as they navigate the pandemic, and the specific consequences this has for their mental health. Forty young people (age 16-25) from Black, mixed and other minority backgrounds and living in London, participated in consecutive focus group discussions over a two-month period, to explore the impact of the pandemic on their lives and emotional wellbeing. Thematic analysis identified seven thematic categories describing the impact of the pandemic, indicating: deepening of existing socioeconomic and emotional challenges; efforts to navigate racism and difference within the response; and survival strategies drawing on communal and individual resources. Young people also articulated visions for a future public health response which addressed gaps in current strategies. Findings point to the need to contextualize public health responses to the pandemic in line with the lived experiences of racialised young people. We specifically note the importance of long-term culturally and socio-politically relevant support interventions. Implications for policy and practice are discussed.
| S-EPMC9067664 | biostudies-literature
Project description:There is a lack of theoretical framework supporting stem cell transplant nurses in their assessment, judgment and caring interventions of sibling stem cell donors.The purpose of this study was to explore sibling stem cell donors' main concerns and how they deal with them before and after donation.Ten healthy sibling donors, 5 men and 5 women, with a median age of 54 years were included in this study when they were due to donate stem cells to a brother or sister. Data were collected prospectively on three occasions (before the donation and three and twelve months after it) through in-depth interviews, which were recorded and transcribed verbatim for analysis by the Grounded Theory method according to Charmaz.This study describes the efforts of the ten donors to fulfil their duty as a sibling by doing what they considered necessary in order to help. Their efforts were summarised in a process wherein the grounded theory generated three main categories; Prepare, Promote and Preserve. A clear path of transition leading to fulfilment is evident, starting before the donation and continuing for one year afterwards.Being a sibling stem cell donor means doing what you have to do to fulfil your duty and if possible, saving the life of a seriously ill brother or sister. The relationship between the siblings is strengthened by the donation process. Sibling stem cell donation appears to be about fulfilment and the theoretical framework may support clinicians in their evaluation and support of donors.
| S-EPMC5543621 | biostudies-other
Project description:ObjectivesTo identify reasons for lower organ donation rates by African Americans, we examined knowledge and attitudes about brain death, donation, and transplantation and trust in the health care system.MethodsData were collected from 1,283 subjects in Ohio using a random digit dial telephone survey. Items were developed based on focus group results. Willingness-to-donate indicators included a signed donor card and willingness to donate one's own and a loved one's organs.ResultsCompared with whites, African-Americans had lower rates of signing a donor card (39.1% vs 64.9%, P < .001), and willingness to donate their own organs (72.6% vs 88.3%, P < .001) or a loved one's organs (53.0% vs 66.2%, P < .001). African Americans had lower scores on the Trust in the Health Care System scale (mean scores +/- SD, 9.43 +/- 3.05 vs 9.93 +/- 2.88, P < .01) and were more likely to agree that "if doctors know I am an organ donor, they won't try to save my life" (38.6% vs 25.9%, P < .001), the rich or famous are more likely to get a transplant (81.9% vs 75.7%, P < .05), and less likely to agree that doctors can be trusted to pronounce death (68.2% vs 82.9, P < .001). African Americans were also more likely to agree that families should receive money for donating organs (45.6% vs 28.0%, P < .001) and funeral expenses (63.1% vs 46.6%, P < .001).ConclusionsAfrican Americans reported greater mistrust in the equity of the donation system and were more favorable about providing tangible benefits to donor families than white respondents.
| S-EPMC1831604 | biostudies-literature
Project description:ObjectiveDespite calls to increase the 'cultural competence' of health care providers, racially minoritised people continue to experience a range of problems when it comes to health care, including discrimination. While relevant qualitative meta-syntheses have suggested better ways forward for health care for racialised minorities, many have lacked conceptual depth, and none have specifically investigated the relational dimensions involved in care. We set out to investigate the social and cultural influences on health care interventions, focusing on psychological approaches and/or cancer care to inform the trial of a new psychological therapy for those living with or beyond cancer.MethodA meta-ethnography approach was used to examine the relevant qualitative studies, following Noblit and Hare, and guided by patient involvement throughout. Papers were analysed between September 2018 and February 2023, with some interruptions caused by the Covid pandemic. The following databases were searched: Ovid MEDLINE, EBSCO CINAHL, Ovid Embase, EBSCO PsycINFO, Proquest Sociology Collection (including Applied Social Sciences Index & Abstracts (ASSIA), Sociological Abstracts and Sociology Database), EBSCO SocINDEX, Ovid AMED, and Web of Science. The systematic review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42018107695), and reporting follows the eMERGe Reporting Guidance for meta-ethnographies (France et al. 2019).ResultsTwenty-nine journal papers were included in the final review. Themes (third-order constructs) developed in the paper include the centrality of the patient-practitioner relationship; how participants give meaning to their illness in connection to others; how families (rather than individuals) may make health decisions; how links with a higher power and spiritual/religious others can play a role in coping; and the ways in which a hierarchy of help-seeking develops, frequently with the first port of call being the resources of oneself. Participants in studies had a need to avoid being 'othered' in their care, valuing practitioners that connected with them, and who were able to recognise them as whole and complex (sometimes described in relational languages like 'love'). Complex family-based health decision-making and/or the importance of relations with non-human interactants (e.g. God, spiritual beings) were frequently uncovered, not to mention the profoundly emergent nature of stigma, whereby families could be relatively safe havens for containing and dealing with health challenges. A conceptual framework of 'animated via (frequently hidden) affective relationality' emerged in the final synthesis, bringing all themes together, and drawing attention to the emergent nature of the salient issues facing minoritised patients in health care interactions.ConclusionOur analysis is important because it sheds light on the hitherto buried relational forces animating and producing the specific issues facing racially minoritised patients, which study participants thought were largely overlooked, but to which professionals can readily relate (given the universal nature of human relations). Thus, training around the affective relationality of consultations could be a fruitful avenue to explore to improve care of diverse patients.
| S-EPMC10171693 | biostudies-literature
Project description:PurposeHealth providers' implicit racial bias negatively affects communication and patient reactions to many medical interactions. However, its effects on racially discordant oncology interactions are largely unknown. Thus, we examined whether oncologist implicit racial bias has similar effects in oncology interactions. We further investigated whether oncologist implicit bias negatively affects patients' perceptions of recommended treatments (i.e., degree of confidence, expected difficulty). We predicted oncologist implicit bias would negatively affect communication, patient reactions to interactions, and, indirectly, patient perceptions of recommended treatments.MethodsParticipants were 18 non-black medical oncologists and 112 black patients. Oncologists completed an implicit racial bias measure several weeks before video-recorded treatment discussions with new patients. Observers rated oncologist communication and recorded interaction length of time and amount of time oncologists and patients spoke. Following interactions, patients answered questions about oncologists' patient-centeredness and difficulty remembering contents of the interaction, distress, trust, and treatment perceptions.ResultsAs predicted, oncologists higher in implicit racial bias had shorter interactions, and patients and observers rated these oncologists' communication as less patient-centered and supportive. Higher implicit bias also was associated with more patient difficulty remembering contents of the interaction. In addition, oncologist implicit bias indirectly predicted less patient confidence in recommended treatments, and greater perceived difficulty completing them, through its impact on oncologists' communication (as rated by both patients and observers).ConclusionOncologist implicit racial bias is negatively associated with oncologist communication, patients' reactions to racially discordant oncology interactions, and patient perceptions of recommended treatments. These perceptions could subsequently directly affect patient-treatment decisions. Thus, implicit racial bias is a likely source of racial treatment disparities and must be addressed in oncology training and practice.
| S-EPMC5012663 | biostudies-literature
Project description:Aims and objectivesImagine you're driving and you become so distracted by the radio that you miss your turn. Which is more likely to have caught your attention, a broadcast in your native tongue or one in your second language? The present study explores the effect of language proficiency on our ability to inhibit irrelevant phonological information.MethodologyParticipants were asked to identify which of two drawings changed color while ignoring irrelevant words in either their native language, English, or a less proficient language, Spanish. The drawings appeared on screen for either 200 or 2000ms prior to word-onset, which was followed 200ms later by a color-change. On critical trials, the irrelevant word shared phonological features with the label of the non-target drawing. Trials were blocked by preview time and language.Data and analysisReaction time data from 19 bilinguals were analyzed utilizing generalized linear mixed-effects models, with fixed effects of Competition (competitor vs. control), and Language (English vs. Spanish) and random effects for Subject and Item within each preview window.Findings/conclusionsNo interference was observed when participants heard their native tongue in either preview condition. However, participants in the long-preview condition were significantly slower to respond when there was phonological competition in their less proficient language, despite the fact that the task required no language processing.OriginalityPast work has indicated that languages are processed more automatically and cause greater interference as proficiency increases. We propose that though higher-proficiency languages may receive greater activation overall, lower-proficiency languages may be more likely to exogenously capture attention due to both relatively greater salience, and relatively less control.SignificanceThe present findings have implications for how we understand the dynamic relationship between language proficiency, activation, and inhibition, suggesting that the salience of the less familiar influences our ability to ignore irrelevant information.
| S-EPMC7963402 | biostudies-literature