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1.
Am J Pharm Educ ; : 100749, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38960070

ABSTRACT

OBJECTIVE: Competencies related to diversity could be essential to training and assessing student pharmacists in their readiness to provide equitable and inclusive care. Such competencies are lacking in pharmacy education; therefore, this study aimed to explore the development of diversity competencies and supporting factors needed to prepare students to meet the competencies and provide patient care in a diverse, equitable and inclusive manner. METHODS: Pharmacy diversity thought leaders were invited to participate in a three-round modified Delphi survey. Survey items were created using a Backward Design. Qualitative data were analyzed using the Constant Comparative Method. Draft competency statements were created based on the collective comments from Round 1 along with themes related to the supporting factors needed to achieve the competencies. Consensus on themes, competency statements and edits were identified in Round 2. Additional comments and feedback on edits were gathered in Round 3. Consensus was preset at 85.7%. RESULTS: Seven competency statements were created. Knowledge, skills, attitudes, behaviors, values, curricular content/pedagogy and resources needed to prepare students to meet the competencies and support faculty would need were identified. CONCLUSION: Preliminary diversity competencies and supporting factors needed were developed using the perspective of thought leaders. Further evaluation, including development of student-appropriate competencies, testing and validation of content and assessment tools, and determining place in the pharmacy curriculum, are future steps that should be considered in the competency development process.

2.
Curr Med Chem ; 2024 Jul 03.
Article in English | MEDLINE | ID: mdl-38963104

ABSTRACT

BACKGROUND: Neglected Tropical Diseases (NTD) are chronic infectious conditions that primarily affect marginalized populations. The chemotherapeutic arsenal available for treating NTD is limited and outdated, which poses a challenge in controlling and eradicating these diseases. This is exacerbated by the pharmaceutical industry's lack of interest in funding the development of new therapeutic alternatives. In addition, a considerable number of drugs used in NTD therapy have low aqueous solubility. To address this issue, solubility enhancement strategies, such as the use of inclusion complexes with cyclodextrins (CD) can be employed. OBJECTIVE: Therefore, this systematic review aims to present the application of CD in complexing with drugs and chemotherapeutic compounds used in the therapy of some of the most prevalent NTD worldwide and how these complexes can enhance the treatment of these diseases. METHODS: Two bibliographic databases, Science Direct and PubMed, were used to conduct the search. The selection of studies and the writing of this systematic review followed the criteria outlined by the PRISMA guidelines. RESULTS: From a total of 978 articles, 23 were selected after applying the exclusion criteria. All the studies selected were consistent with the use of CD as a strategy to increase the solubility of therapeutic agents used in NTD. CONCLUSION: The results indicate that CD can enhance the solubility of chemotherapeutic agents for the treatment of Neglected Tropical Diseases (NTD). This review presents data that clearly highlights the potential use of CD in the development of new treatments for neglected tropical diseases. It can assist in the formulation of future treatments that are more effective and safer.

3.
Article in English | MEDLINE | ID: mdl-38967842

ABSTRACT

Recovery is real and has had a transformative impact on mental health policies and services, including shifting the focus from chronicity and symptom management to the realization that individuals with mental health issues can lead meaningful lives. However, recovery has been defined, described, understood, and measured in a wide variety of ways that may account for misuses and abuses in its application and possible stagnation in its impact. It is argued that the mental health field must now build upon the strong foundations of recovery by integrating a well-established rights-oriented framework. While recovery emphasizes personal growth and hope, a rights-based perspective underscores inherent dignity, autonomy, and opportunities for acceptance and embrace in engaging in valued social roles. The addition of a rights-based framework - community inclusion, to conversations involving recovery, is aligned with the origins of recovery and how it is commonly understood, and also connects the mental health field to the dramatic positive impacts that have emerged from the longstanding centrality of this concept in the broader disability community.

4.
Sci Rep ; 14(1): 15036, 2024 07 01.
Article in English | MEDLINE | ID: mdl-38951633

ABSTRACT

Overly restrictive clinical trial eligibility criteria can reduce generalizability, slow enrollment, and disproportionately exclude historically underrepresented populations. The eligibility criteria for 196 Alzheimer's Disease and Related Dementias (AD/ADRD) trials funded by the National Institute on Aging were analyzed to identify common criteria and their potential to disproportionately exclude participants by race/ethnicity. The trials were categorized by type (48 Phase I/II pharmacological, 7 Phase III/IV pharmacological, 128 non-pharmacological, 7 diagnostic, and 6 neuropsychiatric) and target population (51 AD/ADRD, 58 Mild Cognitive Impairment, 25 at-risk, and 62 cognitively normal). Eligibility criteria were coded into the following categories: Medical, Neurologic, Psychiatric, and Procedural. A literature search was conducted to describe the prevalence of disparities for eligibility criteria for African Americans/Black (AA/B), Hispanic/Latino (H/L), American Indian/Alaska Native (AI/AN) and Native Hawaiian/Pacific Islander (NH/PI) populations. The trials had a median of 15 criteria. The most frequent criterion were age cutoffs (87% of trials), specified neurologic (65%), and psychiatric disorders (61%). Underrepresented groups could be disproportionately excluded by 16 eligibility categories; 42% of trials specified English-speakers only in their criteria. Most trials (82%) contain poorly operationalized criteria (i.e., criteria not well defined that can have multiple interpretations/means of implementation) and criteria that may reduce racial/ethnic enrollment diversity.


Subject(s)
Alzheimer Disease , Clinical Trials as Topic , Patient Selection , Humans , Alzheimer Disease/epidemiology , Alzheimer Disease/diagnosis , Cognitive Dysfunction/epidemiology , Dementia/epidemiology , Eligibility Determination , Ethnicity , National Institute on Aging (U.S.) , United States/epidemiology , Black or African American , Hispanic or Latino , American Indian or Alaska Native , Native Hawaiian or Other Pacific Islander
5.
Harm Reduct J ; 21(1): 128, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38951880

ABSTRACT

BACKGROUND: Deaths due to drug overdose are an international issue, causing an estimated 128,000 global deaths in 2019. Scotland has the highest rate of drug-related deaths in Europe, with those in the most deprived areas at greater risk than those in affluent areas. There is a paucity of research on digital solutions, particularly from the perspective of those who use drugs who additionally access harm reduction and homelessness support services. The Digital Lifelines Scotland programme (DLS) provides vulnerable people who use/d drugs with digital devices to connect with services. METHODS: This paper reports on the evaluation of the DLS from the perspective of service users who accessed services for those at risk of drug-related harms. A mixed methods approach was used including an online-survey (n = 19) and semi-structured interviews (n = 21). Survey data were analysed descriptively and interview data through inductive coding, informed by the Technology, People, Organisations and Macroenvironmental factors (TPOM) framework, to investigate the use, access, and availability of devices, and people's experiences and perceptions of them. RESULTS: Most participants lived in social/council housing (63.2%, n = 12), many lived alone (68.4%, n = 13). They were mainly over 40 years old and lived in a city. Participants described a desire for data privacy, knowledge, and education, and placed a nascent social and personal value on digital devices. Participants pointed to the person-centred individuality of the service provision as one of the reasons to routinely engage with services. Service users experienced an increased sense of value and there was a palpable sense of community, connection and belonging developed through the programme, including interaction with services and devices. CONCLUSIONS: This paper presents a unique perspective which documents the experiences of service users on the DLS. Participants illustrated a desire for life improvement and a collective and individual feeling of responsibility towards themselves and digital devices. Digital inclusion has the potential to provide avenues by which service users can safely and constructively access services and society to improve outcomes. This paper provides a foundation to further cultivate the insight of service users on digital solutions in this emerging area.


Subject(s)
Digital Technology , Harm Reduction , Humans , Scotland , Female , Male , Adult , Middle Aged , Drug Overdose/prevention & control , Drug Users/psychology , Young Adult , Ill-Housed Persons , Substance-Related Disorders , Surveys and Questionnaires
6.
Res Involv Engagem ; 10(1): 68, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38951878

ABSTRACT

BACKGROUND: Public involvement and engagement (PI&E) is increasingly recognised as an important component of research. It can offer valuable insights from those with experiential knowledge to improve research quality, relevance, and reach. Similarly, schools are ever more common sites for health research and, more recently, PI&E. However, 'gold-standard' practice is yet to be established, and activities/approaches remain underreported. As a result, knowledge can remain localised or lost. Diversity and inclusion also remains a challenge. METHODS: This protocol has been informed by UK national guidance, evidence-based frameworks and available implementation literature. It describes both rationale and approach to conducting PI&E activities within a secondary school context. Activities are designed to be engaging, safe and accessible to young people with diverse experiences, with scope to be iteratively developed in line with public collaborator preference. DISCUSSION: Young people should be architects of their involvement and engagement. Ongoing appraisal and transparency of approaches to PI&E in school settings is crucial. Expected challenges of implementing this protocol include facilitating a safe space for the discussion of sensitive topics, absence and attrition, recruiting students with a diverse range of experiences, and potential knowledge and capacity barriers of both facilitator and contributors. Activities to mitigate these risks are suggested and explored.


Schools are increasingly becoming hubs for health research. However, there is a lack of knowledge about how researchers, schools and students can best work together to shape the studies we do. This is a problem as, in the world of research, involving those with first hand experiences (public collaborators) in the research process is seen as crucial.This protocol outlines our plan for conducting public involvement and engagement activities in secondary schools. It is based on national guidance and existing evidence. The goal is to make these activities interesting, safe, and accessible to young people with diverse experiences. The approach is designed to be flexible, allowing adjustments based on the preferences of the public collaborators.We acknowledge that we may face some difficulties with our approach. This may include challenges in recruitment of public collaborators, dealing with absence and attrition, and creating a safe space for discussing sensitive topics. Collaborators from both academic and lived backgrounds may also experience barriers in knowledge and capacity. This protocol suggests activities to address and overcome these challenges. We emphasise the need for ongoing evaluation and transparency in public involvement and engagement approaches within school settings.

7.
MedEdPORTAL ; 20: 11412, 2024.
Article in English | MEDLINE | ID: mdl-38957523

ABSTRACT

Introduction: Medical curricula implicitly teach that race has a biological basis. Clinical rotations reinforce this misconception as race-based algorithms are used to guide clinical decision-making. This module aims to expose the fallacy of race in clinical algorithms, using the estimated glomerular filtration rate (eGFR) equation as an example. Methods: We created a 60-minute module in consultation with nephrologists. The format was an interactive, case-based presentation with a didactic section. A third-year medical student facilitated the workshops to medical students. Evaluation included pre/post surveys using 5-point Likert scales to assess awareness regarding use of race as a biological construct. Higher scores indicated increased awareness. Results: Fifty-five students participated in the module. Pre/post results indicated that students significantly improved in self-perceived knowledge of the history of racism in medicine (2.6 vs. 3.2, p < .001), awareness of race in clinical algorithms (2.7 vs. 3.7, p < .001), impact of race-based eGFR on quality of life/treatment outcomes (4.5 vs. 4.8, p = .01), differences between race and ancestry (3.7 vs. 4.3, p < .001), and implications of not removing race from the eGFR equation (2.7 vs. 4.2, p < .001). Students rated the workshops highly for quality and clarity. Discussion: Our module expands on others' work to expose the fallacy of race-based algorithms and define its impact on health equity. Limitations include a lack of objective assessment of knowledge acquisition. We recommend integrating this module into preclinical and clinical curricula to discuss the use of race in medical literature and clinical practice.


Subject(s)
Algorithms , Curriculum , Glomerular Filtration Rate , Students, Medical , Humans , Students, Medical/statistics & numerical data , Students, Medical/psychology , Glomerular Filtration Rate/physiology , Surveys and Questionnaires , Racial Groups/statistics & numerical data , Education, Medical, Undergraduate/methods , Male , Racism , Female
8.
MedEdPORTAL ; 20: 11402, 2024.
Article in English | MEDLINE | ID: mdl-38957525

ABSTRACT

Introduction: Without explicit education and training on how social determinants of health (SDoH) impact patient care and health outcomes, medical schools are failing to effectively equip future physicians to serve their patients. We created this workshop on health equity with a focus on SDoH to help students more effectively communicate with diverse populations. Methods: Third-year medical students and faculty were provided with class guides, learning objectives, role-play vignettes containing clerkship-specific history and physical exams, schedules, and discussion questions during a 2-hour session centered on SDoH. The workshop's impact was measured through mixed-methods analysis of surveys. Results: Based on pre- and postsurvey results from 87 participants, medical students strongly agreed that (1) SDoH factor more into a patient's health outcomes than the clinical encounter (pre: 67%, post: 87%), (2) it is their duty to gather information about SDoH (pre: 86%, post: 97%), (3) neighborhood safety is one of the key SDoH (pre: 88%, post: 97%), (4) they understood the impact of upstream interventions (pre: 35%, post: 93%), (5) they could efficiently screen all patients for SDoH at every medical encounter (pre: 27%, post: 86%), and (6) they could find preliminary resources to quickly assist patients in need of help regarding particular SDoH (pre: 26%, post: 85%). Discussion: This was the first iteration of this workshop; challenges involved piloting the content, time restraints, and organizational structure of the workshop design. Future directions include making SDoH curricula an integral part of undergraduate medical education and diverse clinical environments.


Subject(s)
Education, Medical, Undergraduate , Social Determinants of Health , Students, Medical , Humans , Students, Medical/statistics & numerical data , Students, Medical/psychology , Surveys and Questionnaires , Education, Medical, Undergraduate/methods , Curriculum , Education/methods , Male , Female
9.
MedEdPORTAL ; 20: 11415, 2024.
Article in English | MEDLINE | ID: mdl-38957527

ABSTRACT

Introduction: Community partnership is a key strategy for addressing the social determinants of health and achieving health equity. There are few examples of curricula for undergraduate medical education that teach all, rather than self-selected, medical students to collaborate with community members to improve health. We describe the design and implementation of the Community Health Advocacy Initiative (CHAI) curriculum, a new yearlong educational program for medical students at Northwestern University's Feinberg School of Medicine. Methods: CHAI aimed to fill the curricular gap in social determinants of health education by providing medical students with the knowledge and skills to improve the health of patients through collaborations with community partners. This longitudinal curriculum included structured faculty mentorship and an applied community experience. Results: The CHAI curriculum was delivered to 164 second-year medical students in academic year 2021-2022. Faculty mentors rated most students as meeting expectations for application of community partnership principles and demonstration of professionalism. Qualitative analysis of faculty mentor comments demonstrated that medical students exhibited positive outcomes in engaging with community organizations, overcoming barriers, developing feasible and impactful goals, and advancing their own knowledge and skills. Discussion: Implementing a community health curriculum for all medical students is feasible and represents an important model for teaching about the importance of community partnerships in addressing the social determinants of health.


Subject(s)
Curriculum , Education, Medical, Undergraduate , Students, Medical , Humans , Students, Medical/psychology , Students, Medical/statistics & numerical data , Education, Medical, Undergraduate/methods , Problem-Based Learning/methods , Social Determinants of Health , Longitudinal Studies , Mentors
10.
MedEdPORTAL ; 20: 11416, 2024.
Article in English | MEDLINE | ID: mdl-38957531

ABSTRACT

Introduction: The influence of implicit biases in virtual interviews must be addressed to ensure equity within the admissions process. ABATE is a mnemonic framework of five specific categories of implicit bias (affinity-based, backdrop-based, appearance-based, technology and media-based, and enunciation-based biases) that should be anticipated and mitigated for faculty, staff, health professionals, and medical students who conduct virtual interviews at medical schools. Methods: A 60-minute workshop was developed to educate medical school admissions interviewers about the ABATE model and strategies to mitigate implicit bias during virtual interviews. Four workshops were held over 1 year totaling 217 individual attendees. The workshops were evaluated using a single-group, pre-post questionnaire designed with the Kirkpatrick evaluation model. Results: Attendees reported that they found the ABATE workshop useful and relevant to improving their ability to minimize implicit bias during virtual interviews. Significant improvements were found in attendee reactions to the utility of implicit bias training (M pre = 2.6, M post = 3.1, p = .002). Significant changes were also reported in attendees' attitudes about interviewing confidence (M pre = 3.0, M post = 3.2, p = .04), bias awareness (M pre = 3.0, M post = 3.4, p = .002), and identifying and applying bias mitigation solutions (M pre = 2.5, M post = 3.0, p = .003). Knowledge specific to backdrop-based biases also significantly increased (M pre = 3.2, M post = 3.4, p = .04). Discussion: The ABATE workshop demonstrates promise in mitigating implicit bias in virtual medical school interviews.


Subject(s)
Interviews as Topic , Schools, Medical , Humans , Interviews as Topic/methods , Surveys and Questionnaires , School Admission Criteria , Students, Medical/psychology , Students, Medical/statistics & numerical data , Bias , Education/methods , Male , Female
11.
MedEdPORTAL ; 20: 11395, 2024.
Article in English | MEDLINE | ID: mdl-38957536

ABSTRACT

Introduction: Medical schools seeking to correct and reform curricula towards anti-racist perspectives need to address anti-Black forms of racism specifically and teach students critical upstander skills to interrupt manifestations of racism. We developed a course to teach preclinical medical students basic anti-racism competencies including recognition and awareness of anti-Black racism in medicine and upstander skills to advocate for patients and colleagues. Methods: In 2021 and 2022, we designed, implemented, and evaluated an elective course for second-year medical students (N = 149) to introduce competencies of anti-racism focusing on upstander skills for addressing anti-Blackness. We designed three patient cases and one student-centered case to illustrate manifestations of anti-Black racism in medicine and used these cases to stimulate small-group discussions and guide students toward recognizing and understanding ways of responding to racism. We designed pre- and postassessments to evaluate the effectiveness of the course and utilized anonymous feedback surveys. Results: Participants showed significant improvement in pre- to postassessment scores in both years of the course. The anonymous feedback survey showed that 97% of students rated the course at least somewhat effective, and the qualitative responses revealed five core themes: course timing, case complexity, learner differentiation, direct instruction, and access to resources. Discussion: This course reinforces upstander competencies necessary for advancing anti-racism in medicine. It addresses a gap in medical education by reckoning with the entrenched nature of anti-Black racism in the culture of medicine and seeks to empower undergraduate medical students to advocate for Black-identifying patients and colleagues.


Subject(s)
Curriculum , Education, Medical, Undergraduate , Racism , Students, Medical , Humans , Education, Medical, Undergraduate/methods , Students, Medical/psychology , Surveys and Questionnaires , Clinical Competence
12.
JAMIA Open ; 7(3): ooae050, 2024 Oct.
Article in English | MEDLINE | ID: mdl-38957592

ABSTRACT

Objectives: The aim of this study was to assess the completeness and readability of generative pre-trained transformer-4 (GPT-4)-generated discharge instructions at prespecified reading levels for common pediatric emergency room complaints. Materials and Methods: The outputs for 6 discharge scenarios stratified by reading level (fifth or eighth grade) and language (English, Spanish) were generated fivefold using GPT-4. Specifically, 120 discharge instructions were produced and analyzed (6 scenarios: 60 in English, 60 in Spanish; 60 at a fifth-grade reading level, 60 at an eighth-grade reading level) and compared for completeness and readability (between language, between reading level, and stratified by group and reading level). Completeness was defined as the proportion of literature-derived key points included in discharge instructions. Readability was quantified using Flesch-Kincaid (English) and Fernandez-Huerta (Spanish) readability scores. Results: English-language GPT-generated discharge instructions contained a significantly higher proportion of must-include discharge instructions than those in Spanish (English: mean (standard error of the mean) = 62% (3%), Spanish: 53% (3%), P = .02). In the fifth-grade and eighth-grade level conditions, there was no significant difference between English and Spanish outputs in completeness. Readability did not differ across languages. Discussion: GPT-4 produced readable discharge instructions in English and Spanish while modulating document reading level. Discharge instructions in English tended to have higher completeness than those in Spanish. Conclusion: Future research in prompt engineering and GPT-4 performance, both generally and in multiple languages, is needed to reduce potential for health disparities by language and reading level.

13.
J Eval Clin Pract ; 2024 Jul 03.
Article in English | MEDLINE | ID: mdl-38959378

ABSTRACT

Addressing Diversity, Equity and Inclusion in health care is a multidimensional challenge. From a US perspective, the third-party payment system has disempowered and depersonalized health-care delivery. The net result is wasteful and inefficient use of human and financial resources, burnout among providers, as well as care inequities. Financial integration at the point of patient care is essential to aligning the needs of patients with advances in medical technology. Complexity theory offers valuable insights into the roles of government, intermediaries and patients. The government must focus on equity as a rule compiler and referee of the system. Patient and providers who are actively engaged in shared decision-making will naturally address the diverse needs of multitudinous communities. Intermediaries address inclusion by connecting resources with the point of care. In a dynamic, emerging health-care system that serves diverse communities, patient and community-based financing, vouchers and defined contributions are necessary first steps in addressing cultural diversity, inclusion and equity.

14.
Br J Soc Psychol ; 2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38967403

ABSTRACT

Opposing social movements are groups that have conflicting objectives on a shared social justice issue. To maximize the probability of their movement's success, groups can strategically portray their group in a favourable manner while discrediting their opposition. One such approach involves the construction of victimization discourses. In this research, we combined topic modelling and critical discursive psychology to explore how opposing groups within the feminist movement used victimization as a lens to understand their movements in relation to transgender women. We compiled a dataset of over 40,000 tweets from 14 UK-based feminist accounts that included transgender women as women (the pro-inclusion group) and 13 accounts, that excluded transgender women (the anti-inclusion group). Our results revealed differences in how victimization was employed by the opposing movements: pro-inclusion groups drew on repertoires that created a sense of shared victimhood between cisgender women and transgender women, while anti-inclusion groups invoked a competitive victimhood repertoire. Both groups also challenged and delegitimised their oppositions' constructions of feminism and victimhood. These findings add to our understanding of the communication strategies used by opposing movements to achieve their mobilization goals.

16.
Crit Care ; 28(1): 214, 2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38956655

ABSTRACT

BACKGROUND: Ventilator-associated pneumonia (VAP) is a prevalent and grave hospital-acquired infection that affects mechanically ventilated patients. Diverse diagnostic criteria can significantly affect VAP research by complicating the identification and management of the condition, which may also impact clinical management. OBJECTIVES: We conducted this review to assess the diagnostic criteria and the definitions of the term "ventilator-associated" used in randomised controlled trials (RCTs) of VAP management. SEARCH METHODS: Based on the protocol (PROSPERO 2019 CRD42019147411), we conducted a systematic search on MEDLINE/PubMed and Cochrane CENTRAL for RCTs, published or registered between 2010 and 2024. SELECTION CRITERIA: We included completed and ongoing RCTs that assessed pharmacological or non-pharmacological interventions in adults with VAP. DATA COLLECTION AND SYNTHESIS: Data were collected using a tested extraction sheet, as endorsed by the Cochrane Collaboration. After cross-checking, data were summarised in a narrative and tabular form. RESULTS: In total, 7,173 records were identified through the literature search. Following the exclusion of records that did not meet the eligibility criteria, 119 studies were included. Diagnostic criteria were provided in 51.2% of studies, and the term "ventilator-associated" was defined in 52.1% of studies. The most frequently included diagnostic criteria were pulmonary infiltrates (96.7%), fever (86.9%), hypothermia (49.1%), sputum (70.5%), and hypoxia (32.8%). The different criteria were used in 38 combinations across studies. The term "ventilator-associated" was defined in nine different ways. CONCLUSIONS: When provided, diagnostic criteria and definitions of VAP in RCTs display notable variability. Continuous efforts to harmonise VAP diagnostic criteria in future clinical trials are crucial to improve quality of care, enable accurate epidemiological assessments, and guide effective antimicrobial stewardship.


Subject(s)
Pneumonia, Ventilator-Associated , Humans , Pneumonia, Ventilator-Associated/diagnosis , Randomized Controlled Trials as Topic , Respiration, Artificial/adverse effects , Respiration, Artificial/methods
17.
Res Involv Engagem ; 10(1): 69, 2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38956744

ABSTRACT

BACKGROUND: Although underserved populations- including those from ethnic minority communities and those living in poverty-have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in primary healthcare research. METHODS: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template. RESULTS: Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design. CONCLUSIONS: Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.


THE PROBLEM: People living in poverty, and people from ethnic minority communities may be referred to as 'underserved'. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities  worse. WHAT WE DID: This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities. WHAT WE FOUND: We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other's culture and history makes it easier to work together.

18.
Res Involv Engagem ; 10(1): 71, 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38965636

ABSTRACT

BACKGROUND: Policy research aims to provide evidence to inform government policy decisions about health and social care. Engaging and involving the public and patients in this work is widely recognised as essential. Research funders prioritise equality, diversity and inclusion (EDI) in patient and public involvement and engagement (PPIE), but people who are most likely to experience poor outcomes are also those least likely to be involved in research. This paper describes our experience of setting out to understand how to overcome barriers to EDI in PPIE in the research carried out by the National Institute for Health and Care Research (NIHR) Policy Research Unit in Maternal and Neonatal Health and Care (PRU-MNHC), in a PPIE consultation project we called The Listening Series. METHODS: We convened five video-recorded online discussion groups involving 20 individuals advocating for groups who are under-represented in our research. Those taking part included people working with Black and Asian women and families, young parents, those from socially deprived backgrounds, and women and families with physical and learning disabilities. Discussions focussed on practical solutions to addressing challenges to people being excluded, and how to improve EDI in our research. LEARNING AND REFLECTION: Five key themes were identified: 'build trust'; 'involve us from the beginning'; 'show us impact'; 'use clear, appropriate and inclusive communication'; and 'imagine life in our shoes'. We used the learning to create a guidance document for researchers and an accompanying 15-minute film. We also took practical steps to embed the learning strategically by expanding our Task Group for PPIE in the PRU-MNHC to include four Listening Series invitees with a remit to champion EDI in our research and ensure that it is embedded in our PPIE activities. We continue to reflect on and work to address the associated challenges. CONCLUSIONS: The Listening Series helped us rethink our processes for inclusion to go beyond traditional methods of involvement and engagement. The themes identified pose challenges that require time, resource and empathic engagement from researchers to be meaningfully resolved. This has implications for policy makers and research funders who need to consider this in their processes.


WHAT WE KNOW: It is important that health care researchers involve patients and the public from a wide range of social and ethnic backgrounds in research, but we know that this often does not happen. We are a group of researchers and patient/public representatives, working in research to improve care for pregnant women and babies. We wanted to find out how to involve people from more diverse backgrounds in our research. WHAT WE DID: We organised five online discussion groups with 20 people working with Black and Asian families, young parents, those from socially deprived backgrounds and parents with physical or learning disabilities. We asked them what we should do to involve a wider range of people in our research. We called this The Listening Series. We summarised the most important things people said in a written guide for researchers and a short film. We then asked people who had been invited to take part in The Listening Series to join us to develop new ways of working together. WHAT WE LEARNED: The five themes we identified were: 'build trust'; 'involve us from the beginning'; 'show us impact'; 'use clear, appropriate and inclusive communication'; and 'imagine life in our shoes'. In summary, researchers need to take the time to build trusting relationships with patients and the public; actively listening and learning from them. This can be challenging for researchers and patient representatives. Research funders need to allow time and money for this to happen in a meaningful way.

19.
Eur J Sport Sci ; 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38965684

ABSTRACT

The present study aims to test a model in which basic psychological needs (BPN) satisfaction in physical-sport activity contexts is associated with self-determined motivation, which, in turn, would predict the social inclusion of people with intellectual disabilities. A total of 286 people with intellectual disabilities (53.5% men) who reported engaging in physical-sport activities responded to a validated questionnaire about the satisfaction of their BPN, motivation (using the Self-determination index [SDI]), and social inclusion. A Pearson's bivariate correlation and structural equation modeling were conducted. The resulting model was reanalyzed in a multigroup analysis to test its invariance across self and proxy reports. Positive associations were found between the satisfaction of the BPN and the SDI. However, the SDI and social inclusion were positively associated only in proxy reports (ßself = 0.07 vs. ßproxy = 0.30). The tested model established positive relationships between the BPN and SDI in autonomy (ßself = 0.21 vs. ßproxy = 0.18), competence (ßself = 0.47 vs. ßproxy = 0.53), and relatedness (ßself = 0.21 vs. ßproxy = 0.23). Further research is needed to understand the factors leading to discrepancies between participants and proxies when relating the SDI to social inclusion in the context of physical-sport activity. However, the results obtained suggest that it would be optimal to develop contexts of practice for people with intellectual disabilities in which the satisfaction of their BPN is favored and that this has a positive impact on their motivation and social inclusion.

20.
Behav Anal Pract ; 17(2): 456-470, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38966257

ABSTRACT

Given the advancement of behavioral research in culture and social behavior, it seems natural for the community of behavior analysts to progress towards increased political engagement and a dedication to social justice. To reach this goal, it is necessary to act inside one's own communities and organizations. The purpose of this article is to report on the efforts of the Brazilian Association for Behavioral Psychology and Medicine (ABPMC) to increase equity and social justice during the 2017-2018 term. First, we present an overview of the ABPMC. Next, we describe the process of identifying, planning, and implementing equity and social justice actions in the association. The problems targeted were the discontinuation of policies from one term to another, elitism and centralization, the lack of topics with social and political relevance in the annual conference's scientific program, and the lack of support for the participation of women (especially mothers) in clinical and academic practice. Supplementary Information: The online version contains supplementary material available at 10.1007/s40617-020-00510-2.

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