Female reproductive health is affected by kidney disease but is often not addressed in nephrology care. Our objective was to better understand patient education needs on this topic to facilitate reproductive health education and care in chronic kidney disease (CKD). A cross-sectional online survey. Female assigned sex at birth, aged 18-45 years, within the United States, fluent in English, with CKD recruited from national kidney organizations, research consortiums, and an academic medical center. Reproductive health knowledge satisfaction, education needs, and communication preferences and barriers. Gravidity, pregnancy planning, CKD stage, disease etiology, health literacy, and demographics. Univariate and multivariable logistic regression were used to examine associations between patient characteristics, knowledge satisfaction, and education needs. Descriptive statistics were used to assess communication preferences and barriers. Two hundred and nine surveys were completed. In total, 77% of participants self-identified as White, 11% Black, 4% Asian, and 11% Hispanic. A total of 23% had limited health literacy. Individuals planning a pregnancy in the future had lower knowledge satisfaction in univariate analysis. After multivariable analysis, only health literacy was significantly associated with knowledge satisfaction (β, -0.5; 95% CI, -0.9 to -0.02; P = 0.04). Understanding the impact of CKD on fetal development and menstruation, and kidney function changes after pregnancy were topics ranked as high priority by patients. Most wanted a nephrologist's recommendation about birth control (76%; n = 159/209) and pregnancy timing (77%; n = 161/209). The limitations include convenience sampling and generalizability because of the online delivery of the survey and overrepresentation of higher socioeconomic groups. This study provides priority topics to include in pregnancy planning during CKD care. Patients want advice from their nephrologists. More tools are needed to support reproductive health education for people with CKD, starting by addressing the need for those with limited health literacy. Chronic kidney disease (CKD) presents reproductive health challenges that can affect both the mother and fetus. Our study surveyed 209 women with CKD to assess their current reproductive health knowledge satisfaction, educational needs, and communication preferences and barriers. Results revealed that women are not satisfied with their knowledge about the effects of CKD on reproductive health, especially for those planning pregnancies or with low health literacy. Opportunities for nephrologists to help counsel patients on reproductive health include the effect of CKD on fetal development and disease progression after pregnancy. Despite some communication barriers, patients are open to nephrologist recommendation on reproductive health. Educational tools and nephrologist-patient discussions could improve shared decision making and improve reproductive outcomes for CKD patients.
A significant proportion of stroke survivors are of working age. While employers play a pivotal role in facilitating work reintegration, their perspectives remain unknown. This study aimed to explore employers' experiences and perspectives on supporting their employees in returning to work after stroke. Qualitative descriptive approach. Participants were employers of stroke survivors who had received vocational rehabilitation, and were known to receive support from the clinical team. Semi-structured interviews were conducted online and data were examined using reflexive thematic analysis. Ten employers were interviewed. Four themes emerged: (1) The vocational rehabilitation team (subtheme: Working as a team); (2) Knowledge is key; (3) Employers' involvement in facilitating return-to-work (subtheme: The employee-employer relationship); and (4) Impact of workplace culture, policies and workload management on return-to-work. Employers highlighted structured plans and supportive workplace culture as key facilitators of reintegration. They valued collaboration between the employee, occupational therapist and workplace; however, most wanted more information about stroke-related impairments to provide tailored support. Employer insights underscore the importance of collaborative vocational rehabilitation involving healthcare professionals and workplaces. Findings deepen understanding of employer perspectives and highlight the need for specialist resources and communication to strengthen employer capacity in supporting employees after stroke. Employers are critical stakeholders in the return-to-work process following stroke, and their active engagement can significantly influence rehabilitation outcomes.Collaborative partnerships with occupational therapists are highly valued by employers and enhance the effectiveness of workplace reintegration strategies.Employers require tailored, role specific information about stroke-associated cognitive, psychological and fatigue related impacts to confidently implement graded return to work plans.
In the last issue of Medical Education Unleashed, Royal et al (2016) introduced the "Ten Most Wanted" test cheaters. Almost a decade later, significant changes in assessment format and delivery have altered the landscape of academic dishonesty. This paper revisits the original 10 cheaters, updates their statuses and identifies new contenders. Cheating remains a pervasive issue in medical education, exacerbated by the shift to online assessments during the COVID-19 pandemic. In medical education, cheating threatens assessment validity, patient safety and institutional reputation, and may correlate with future unprofessional behaviour. The motivations behind cheating are multifaceted. We use the 'fraud triangle' of motivation, opportunity and rationalisation as a framework to conceptualise some of these. This paper profiles the evolution of cheating methods, highlighting new digital-age strategies. An approach which combines authentic assessments, technological integration and promotion of academic integrity is essential to combat this enduring issue.
Daily self-weighing is an evidenced-based weight-management strategy but has not been assessed in adolescents. We report results from qualitative exit interviews soliciting perspectives of participants and their parents following a single-arm feasibility study using smart scales connected to the electronic health record (EHR) among adolescents seeking obesity treatment. Adolescents seeking obesity treatment in a comprehensive pediatric weight management clinic were enrolled in a feasibility study assessing the use of smart scales connected to the clinic EHR. Inclusion criteria included age 12-18 years and body mass index 395th percentile for age and sex. Exclusion criteria included active eating disorders and severe depression/anxiety. At enrollment, participants received a one-time daily self-weigh suggestion and a handout about scale connection to the EHR. Interviews were transcribed, recorded, and conducted separately from parents unless requested otherwise. The main theme was related to past weight-loss journey. Sub-themes included: intervention experience, parental involvement, being told by clinicians to weigh, and intervention impact. Most parents desired help connecting the app to the EHR. Most parents did not ask daily about weight status to not cause stress/anxiety. Some adolescents felt stressed when parents asked about weight status daily, some found it helpful. Most participants were never advised by their clinician to regularly self-weigh, but found daily self-weigh helpful. Most requested reminders to weigh from clinic and for feedback on weight between visits. Overall, adolescents with obesity reported self-weighing being helpful and most wanted some parent involvement. Most parents wanted additional technological support with scale set-up.
The aim of this study was to elucidate cardiovascular prescriber access, uptake, and attitudes toward CYP2C19 and CYP2D6 genetic testing to guide prescribing of commonly used medications such as clopidogrel, antiarrhythmics, proton pump inhibitors, and antidepressants. A survey, designed in collaboration with the European Society of Cardiology (ESC) WG on Cardiovascular Pharmacotherapy and external experts was disseminated to ESC members using SurveyMonkey. 265 prescribers from 68 countries participated. Most respondents thought testing would be beneficial, though CYP2C19 testing was perceived as more beneficial (73%) and desirable than CYP2D6 (61%). Access to CYP2C19 testing was more common (30%) than CYP2D6 testing (19%), but mostly outside of public funded health systems. Uptake in those who had access was higher for CYP2C19 (67%), than for CYP2D6 (33%). Confidence in interpreting results to prescribe was also higher with CYP2C19 (69%) than with CYP2D6 (53%), but most respondents wanted information prior to prescribing. One third of respondents highlighted the need for a turnaround time that matched their clinical practice. Unsolicited Pharmacogenomic (PGx) information from a patient was uncommon, but most prescribers acted on the information. A minority of respondents had undertaken PGx testing themselves, but most wanted testing for relevant medications. Respondents' experiences as patients made them more likely to believe that PGx testing was warranted. A minority ( ~ 15%) were aware of either local prescriber guidance or patient information materials regarding PGx testing. Prescribers want access to pharmacogenomics data regarding CYP2C19 and CYP2D6 for prescribing cardiovascular medicines. However, there are barriers which hamper implementation. Prescribers lived experience with medication use as patients impacted their views of PGx. 265 prescribers responded to the ESC survey from 68 countries. Most prescribers wanted access to pharmacogenomic testing for CYP2C19 and CYP2D6 for their patients and for themselves. Though most prescribers thought these pharmacogenomic tests would be useful and could improve the risk/benefit profile of relevant medications, prescribers responded more positively to CYP2C19 compared with CYP2D6 testing. Guidance and information for both prescribers and patients were lacking.
Traditional disability studies often overlook children with disabilities, their families, and communities from analytical processes, particularly in low-resource settings. This methodological paper describes co-analysis conducted across virtual spaces with marginalized stakeholders as partners in data interpretation, examining whether participatory approaches can address epistemic injustices while navigating resource constraints in urban Philippine communities. Children were engaged in data-gathering through a mosaic approach (storytelling, drawing, photo elicitation, interview) across 24 individual virtual sessions, while adults participated in eight (8) online focus groups. We employed a four-pronged co-analysis approach with 49 participants from a community-based rehabilitation (CBR) program for urban low-resource communities: eight (8) children with disabilities aged 9-16 years, 18 parents, nine (9) CBR workers, and 14 local organization members. The co-analysis approach comprised: (1) participant-directed methodology, (2) grassroots epistemology, (3) iterative partnership building, and (4) collective reflexivity addressing researcher positionality. Co-analysis revealed four insights. First, layered accessibility is essential for inclusion, combining universal design with disability-specific scaffolding. Second, co-analysis itself creates hierarchies as analytical frameworks privilege certain cognitive and communication abilities despite accessibility adaptations. We argue for epistemic pluralism, recognizing different ways of analytical contribution. Third, virtual spaces generated different hierarchies rather than eliminating them. Fourth, structural inequities persisted despite methodological innovation, as digital access, economic precarity, and cognitive demands reproduced exclusions our methodology aimed to dismantle. Achieving epistemic justice through co-analysis requires institutional resources, researcher humility that values diverse analytical contributions, and acknowledgment that participatory methods may expand access but cannot overcome structural inequalities without concurrent shifts in power and resources. Disability research has a long history of speaking about persons with disabilities rather than with them. Children with disabilities, their families, and communities are seldom engaged to interpret findings about their own lives, and this exclusion is most evident in communities where resources are scarce. In the Philippines, we worked with 49 participants from a community-based rehabilitation program in urban low-resource areas, including 8 children with disabilities (ages 9–16), 18 parents, nine (9) community workers, and 14 local organization members, as partners in understanding research data through online sessions. Children shared their experiences through storytelling, drawing, photography, and interviews across 24 individual sessions. Adults joined eight online group discussions. Instead of researchers deciding alone what the data meant, participants reviewed findings and told us what the information really meant to them. We learned four important lessons. First, making research accessible requires both a general design for everyone and specific support for different abilities. Second, even with our adaptations, children who could easily put their thoughts into words were more visible in the analytical process. But visibility is not the same as value. We believe all types of contributions should be valued equally. Third, online platforms reduced some barriers, like travel costs, but created new ones, such as poor internet access. Fourth, poverty, limited technology, and the demands of the process itself kept excluding some of the people we most wanted to include. This work reveals that better methods alone are not enough. Truly including marginalized voices demands shifts in power, resources, and who gets to decide what knowledge counts.
Sea slugs are known as the jewels of the sea, prized by most divers and treasured by underwater photographers. Some species are very rare or difficult to spot, but others are quite common and are often featured in field guides and web pages. However, it is surprising that some of those most common and incredibly beautiful creatures are sometimes undescribed species or, in some cases, misidentified as other species. In this paper, we formally name and describe three of these well-photographed species: Thecacera melkyisp. nov., Thecacerapikachusp. nov. and Nembrotha lorosaesp. nov. all belonging to the family Polyceridae Alder and Hancock, 1845, and collected in East Timor. We perform species delimitation analyses and present their phylogenetic scenario based on two mitochondrial (COI, 16S rRNA) and one nuclear marker (H3). We also reveal a new color morphotype of Nembrotha purpureolineata O'Donoghue, 1924 and highlight two possible undescribed species-one Thecacera J. Fleming, 1828 and one Nembrotha Bergh, 1877. It is essential to continue searching for and fully describing new species, especially in less-studied regions, to understand the true biodiversity of our seas.
To determine if a modified nurse worry criteria, combined with vital signs and early warning scores: 1) improved nurses' ability to anticipate, recognise, prioritise, and escalate deteriorating patients and organise treatment and care; and 2) reduced the number of medical emergency team escalations. A prospective observational multi-method research design collected data using: 1) a questionnaire assessing the impact the modified nurse worry criteria had on nurses' response to patient deterioration, and 2) the critical care outreach data-base to determine a change in the number of medical emergency team escalations. 121 nurses participated in the study with most agreeing or strongly agreeing the modified nurse worry criteria helped them anticipate (n = 111, 91.7%), recognise (n = 114, 94.2%), prioritise (n = 111, 91.7%); escalate (114, 94.2%) patient deterioration and organise treatment and care (n = 106, 87.6%). When compared to nurses with more or less experience, the modified nurse worry criteria improved organisation of treatment and care for nurses between two and five years nursing (p < 0.01), specialty (p = 0.03) and ward (p < 0.01) experience. No other significant differences were identified. Nurses reported more confidence in escalating to house officers (n = 90, 31.4%), charge nurse/senior nurse (n = 113, 93%), ward medical team at ward round (n = 47, 38.8%), critical care outreach (n = 71, 59.5%) and the medical emergency team (n = 30, 24.8%). Most wanted the modified worry criteria to continue in their wards (n = 114, 94.2%). No significant change in the number of medical emergency team escalations were identified (p = 0.56). The modified nurse worry criteria helped nurses predict, respond to and manage deteriorating patients but did not change the number of medical emergency team escalations. The modified nurse worry criteria provided an added tool for nurses to enable earlier escalation of deteriorating patients. The modified nurse worry criteria provide nurses, firstly, with earlier signs of patient deterioration when early warning scores do not meet the escalation threshold, and secondly the language to justify and effectively escalate deteriorating patients.
Exclusive breastfeeding is recommended for the first 6 months of life. However, many full-term infants require supplementation in the first few days of life, with formula often being the only supplementation option provided. With increased awareness and availability, donor human milk is becoming a viable alternative for supplementation in full-term infants. This study aimed to understand how having a choice to supplement infants with donor human milk rather than formula informed maternal experiences with infant feeding. Using a qualitative descriptive design, we conducted 15 semi-structured interviews with mothers who chose to supplement their infant with donor human milk. The semi-structured interview guide was co-developed with milk banking associations to elicit feeding goals, perceptions of donor human milk, infant feeding experiences in the first weeks of life and perceived well-being, health, and feelings around supplementation. Interviews were analyzed using reflexive thematic analysis. Of the 15 participants, over half delivered via cesarean section (n = 8), the majority were primiparous and had no previous breastfeeding experience (n = 12) and most wanted to exclusively breastfeed their infant (n = 11). Four overarching themes were identified: (1) feeding experience, (2) supplementation, (3) maternal well-being, and (4) feasibility. Choosing donor human milk positively impacted participant mental health, helped relieve stress from the pressure to breastfeed, and provided peace of mind. Donor human milk may provide a feasible intervention that may help to mitigate maternal distress by providing a supplement that is more to similar breastmilk, while breastfeeding is being established.
Technologies for home movement rehabilitation after stroke are rapidly expanding. However, for consumers, the number and nature of available products are unclear, and the information provided by device manufacturers varies widely. To understand this landscape, we conducted a mixed-methods, descriptive study in which we used the U.S. Food and Drug Administration (FDA) database to identify interactive devices for stroke rehabilitation suitable for home use. We then surveyed 13 individuals with stroke to determine what information they most wanted about home-based rehabilitation devices and contacted manufacturers to obtain those details. Thirteen FDA codes were associated with stroke rehabilitation devices, encompassing 57 devices produced by 40 companies. Nearly half were categorized under two codes: QKC (interactive rehabilitation exercise devices) and GZI (neuromuscular stimulators). Among devices for which information was available, 71% were listed after 2015, and 23% cost under $1000. The top information priorities for individuals with stroke were required usage to achieve therapeutic benefit, expected benefit, ease of use, and motivational features. Despite repeated outreach, only 45% of companies responded to our queries; among those that did, details were vague and variable. These results confirm that a large and growing number of FDA-listed devices are now available for home-based post-stroke motor rehabilitation. We further identify a need to establish industry standards for reporting ease of use, motivational effectiveness, and dose-response characteristics to help the intended consumers select appropriate technologies. The curated dataset generated in this study is provided as a resource for future work and may support the development of accurate Artificial Intelligence-based interfaces for identifying and comparing rehabilitation devices.
Socially vulnerable adolescents are often forgotten in the healthcare system, which is more prone to manage those who are assigned to the system, leaving others. We aimed to characterise the perception of these patients about preferences and priorities concerning healthcare services in their medical appointments, relevant healthcare topics, and value attributed to the contact with their physicians.This cross-sectional study surveyed a group of adolescents living in institutional settings to enhance a patient-centred approach and, therefore, higher health promotion and better health outcomes for adolescents and young adults.A total of 571 adolescents with a mean age of 17 (55.4% females) answered the survey. Primary healthcare centres were the main location for medical surveillance. The most wanted topics were diet (83%), diseases (82%), and exercise (75%), with less emphasis surrounding topics such as free time, tobacco, and drugs. A significant association was found between valuing physicians' characteristics and perceived doctor skills.This research highlights the pertinence of understanding the priorities and preferences of institutionalised socially vulnerable adolescents to reinforce equity and create a cosy environment for everyone.
The North West Coast area of England (Lancashire, Merseyside, Cheshire and South Cumbria) has high palliative care need (third highest prevalence in England) and historically low recorded National Institute for Health and Care Research research activity (second lowest research recruitment rate in England). To stimulate research activity, a new research partnership was formed to support and encourage palliative care research, funded by the National Institute for Health and Care Research from January 2022 until June 2023. To develop a sustainable palliative care research partnership infrastructure across the North West Coast. To work with palliative care providers, patients and the public, and research staff to further understand local barriers and facilitators to palliative and end-of-life care research, and develop and implement solutions to these barriers. To build capacity in palliative and end-of-life care research through the mentorship of emerging research leaders and share expertise across organisations. To facilitate the development of high-quality research grant applications. Phased activities were planned and actioned throughout the funded period to develop and embed an active palliative care research partnership across the region. These included: a survey and working groups to rapidly identify current local barriers to research and their sustainable solutions; individual and group support activities to build research capabilities and capacity; development and submission of high-quality, clinically relevant research proposals to the National Institute for Health and Care Research and other funders. Survey participants (n = 293) were mainly from clinical settings (71%), with 45% being nurses. While around three-quarters of participants were not research active, most wanted to increase their involvement. Key barriers identified from both the survey and working groups (n = 20 professional participants) included: lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Based on these findings, the partnership is working with national stakeholders to develop user-friendly resources to facilitate hospice-based research. Three action learning sets, that met several times (n = 15 staff), and two networking events (n = 78 participants) took place to facilitate collaboration and research capacity building. Eleven research grant applications totalling £5,435,967 were submitted as a direct result of partnership activities between January 2022 and June 2023. Survey and working group findings and resulting activities represent the views and needs of staff within a particular United Kingdom geography and had limited public representation. Funding to support partnership work has been demonstrated to be effective in pump-priming research activities, leading to successful research grant submissions and building research capacity. However, consideration is needed about how to maintain partnership work, embed in local organisations and further develop work across non-traditional stakeholders such as hospices and social care providers if ongoing funding is unavailable. North West Coast Clinical Research Network has provided short-term funding (July 2023-March 2024) to enable and sustain the expansion of Palliative Care Research Partnership North West Coast. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135334. Bring together clinicians, researchers, healthcare organisations and the public to plan important high-quality research in palliative and end-of-life care relevant to North West Coast and the wider country. First, we sent out a survey to clinicians and researchers and undertook discussion groups to understand the main barriers to palliative care research locally, and how we can best overcome these. Second, we put solutions in place to help people to conduct research. Third, we developed and submitted high-quality, clinically relevant research proposals to the National Institute for Health and Care Research and other funders. Three quarters of those who took part in our survey were not active in research, but just under three quarters said they would like to be more involved. Based on the study findings, the partnership is producing resources alongside national organisations to facilitate hospice research. We ran workshops for clinicians and researchers newer to research so they could develop their grant writing skills. We ran two events to help clinicians and researchers who are interested in palliative care research to work together. We submitted 11 grants totalling £5,435,967 because of partnership activities. Funding the partnership has helped research activity, including grant submissions. How this can continue without ongoing funding needs to be considered. The North West Coast Clinical Research Network has provided funding from July 2023 until March 2024 so that our work can continue in the short term. Organisational engagement is needed to increase palliative care research activity.
Objective: This study delineated the unmet mental health needs of peripartum mothers with symptoms of depression, ascertained their willingness to engage in psychotherapy via text message, and identified potential determinants of that willingness (e.g., demographics, preferred communication methods) to inform improvement to service delivery. Method: This was a cross-sectional national survey of 897 adults who had given birth in the previous 24 months, had at least one lifetime symptom of depression, had internet access, and could read English. Univariate analysis was followed by multivariable Firth's logistic regression. Results: Peripartum participants with at least one symptom of depression wanted mental health care the most within 2 years of giving birth (64.4%) and had less access to mental health care during pregnancy and postpartum (35.1% and 38.1%, compared with 23.9%). Fifty-three percent of participants were willing to engage in psychotherapy via text message. Determinants of willingness to engage in text message therapy for all periods (pregnancy, postpartum, and not peripartum) included wanting mental health treatment but not having access and previous experience with psychotherapy via text message. During pregnancy and not peripartum, more depressive symptoms were associated with willingness to engage in psychotherapy via text message. Conclusion: The peripartum period is an especially high-risk time for mothers to experience depressive symptoms. In general, most wanted therapy but were unable to access it. Most participants were willing to engage in text message therapy.
Incontrovertible evidence surrounds the need to support healthcare professionals after patient safety incidents (PSIs). However, what characterises effective organisational support is less clearly understood and defined. This review aims to determine what support healthcare professionals want for coping with PSIs, what support interventions/approaches are currently available and which have evidence for effectiveness. Systematic research review with narrative synthesis. Medline, Scopus, PubMed and Web of Science databases (from 2010 to mid-2021; updated December 2022), reference lists of eligible articles and Connected Papers software. Empirical studies (1) containing information about support frontline healthcare staff want before/after a PSI, OR addressing (2) support currently available, OR (3) the effectiveness of support to help prevent/alleviate consequences of a PSI. Study quality was appraised using the Quality Assessment for Diverse Studies tool. Ninety-nine studies were identified. Staff most wanted: peer support (n=28), practical support and guidance (n=27) and professional mental health support (n=21). They mostly received: peer support (n=46), managerial support (n=23) and some form of debrief (n=15). Reports of poor PSI support were common. Eleven studies examined intervention effectiveness. Evidence was positive for the effectiveness of preventive/preparatory interventions (n=3), but mixed for peer support programmes designed to alleviate harmful consequences after PSIs (n=8). Study quality varied. Beyond peer support, organisational support for PSIs appears to be misaligned with staff desires. Gaps exist in providing preparatory/preventive interventions and practical support and guidance. Reliable effectiveness data are lacking. Very few studies incorporated comparison groups or randomisation; most used self-report measures. Despite inconclusive evidence, formal peer support programmes dominate. This review illustrates a critical need to fund robust PSI-related intervention effectiveness studies to provide organisations with the evidence they need to make informed decisions when building PSI support programmes. CRD42022325796.
The Robotics Committee of the Society of American Gastrointestinal and Endoscopic Surgeons (SAGES) conducted a study of surgeons' perspectives on robotic-assisted surgery (RAS) as compared to laparoscopic surgery (LS) in four domains: performance, requirements, challenges, and surgical care outcomes. An exploratory sequential mixed-methods study was performed with a thematic analysis of surgeon interviews using the framework method, followed by an online survey of SAGES Robotics Committee members. Descriptive statistics, t-tests, and ANOVA were utilized for analysis. Seven robotic surgeons (3 female, 4 male) were interviewed. The primary themes were that RAS outperformed LS in (1) device performance, (2) intraoperative teaching, and (3) physical fatigue. Three perceived drawbacks of RAS compared to LS were(1) requiring more resources, (2) mechanical malfunction, and (3) care delivery cost. 55 of 92 surgeon committee members (59.8%) completed the survey. 50.9% (28/55) were male, 80% (44/55) practiced in an academic setting, and 70.9% (39/55) learned RAS during residency/fellowship training. Survey results were consistent with interview themes. Participants indicated that RAS improved performance and was associated with improved patient outcomes. They recognized the relative increased cost, the lack of tactile feedback, logistical challenges, and the increased demands of operative staff. 36.4% (20/55) surgeons ranked "AI-assisted navigation/guidance" as the "most wanted" new RAS function. The findings from this study provide useful insights into surgeon perspectives related to RAS as it compares with laparoscopy and desired areas for new RAS developments that may be helpful to surgical organizations and industry partners alike.
This study uses a decolonized research approach to identify the sexual and reproductive health (SRH) priorities of adolescent women living in Freedom Park, Cape Town, South Africa. The history of colonialism and apartheid has a significant ongoing impact on the SRH of women in the community. The objectives of the research were for adolescent women to create a shared definition of SRH and identify SRH needs and priorities. A qualitative, participatory action design guided by decolonized methodologies was employed. Community members co-developed a modified body mapping exercise, ensuring cultural appropriateness and participant privacy. This participatory tool was used to explore SRH issues, leveraging its ability to foster dialogue and self-expression in a safe and collaborative environment. Seven workshops were conducted, engaging 54 adolescent girls and young women (AGYW) aged 16-25. Participant body maps and narratives were analyzed with the community through thematic coding and visual interpretation. Participants defined SRH, and illustrated SRH body parts, outcomes, and priorities on their body maps. Five themes were identified when discussing priority SRH issues: reproductive health and sexual wellness, abuse and violence, mental health, support and knowledge, and social pressures. Participants identified the two SRH issues they most wanted to address in their community as gender-based violence (GBV) and adolescent pregnancy. The body mapping methodology fostered open discussion and provided insight into personal lived experiences. This study highlights socio-economic factors, cultural context, and historical influences as intersecting root causes of SRH outcomes in Freedom Park. The participatory body mapping approach empowered AGYW to express their SRH needs and identify community-driven priorities. Findings underscore the importance of contextualized, culturally sensitive research methods in addressing complex health challenges. Future interventions should address GBV and adolescent pregnancy through community-led strategies to foster sustainable change.
The global majority, often called ethnic minority (EM) groups in the United Kingdom (UK), are underserved in clinical trials despite a greater disease burden. This means that the trial results are often not applicable to the global majority, perpetuating inequities. Despite extensive evidence on barriers to inclusive research, there is little evidence on strategies to achieve successful EM participation. The QuinteT Recruitment Intervention (QRI) has been successfully employed in over 80 trials to optimize recruitment and informed consent in the general population. We aimed to adapt the QRI to optimize EM recruitment in trials through public contributor workshops in the UK. We conducted five workshops with 43 public contributors from diverse ethnic backgrounds. We explored concerns of interest to contributors and sought their views on adapting three QRI components (audio-recordings of trial discussions and patient interviews and feedback provided to health-care professionals, HCPs) and QRI information sheets and consent forms. Contributors were most interested in discussing barriers to EM research participation (mistrust, inadequate compensation, lack of workforce diversity in research, and inadequate community outreach). Key suggestions for QRI adaptation included: a) offering a copy of the audio-recorded trial consultation, providing patient interview questions in advance and avoiding small print in patient-facing documentation (to foster trust); b) involving EM groups with lived experience of health conditions in training HCPs (to avoid perpetuating harmful stereotypes; ensure training is "with" EM and not "about" EM); c) providing QRI team's expectations of participants in advance (clarity on emotional/mental labor involved); d) discussing participants' expectations of the research team (QRI interviews are not for medical information provision); and e) providing ample reassurance around confidentiality (to avoid identity disclosure to their communities, HCPs, or the government). It is important to initiate community engagement by focusing on key concerns in the community, though this has been previously well studied (eg, barriers to EM research participation). Providing the space for this prior to discussing our research topic of interest fostered trust. This led to contributors' insightful suggestions to ensure QRI adaptation and acceptability to EM groups, with the aim of ensuring their representation in clinical trials. People from ethnic minority (EM) groups are more affected by health conditions than the general population. Yet, they are missing from trials, including those on health conditions affecting them the most (eg, diabetes). Researchers have a good understanding of issues that may prevent EM trial participation (barriers), but there is little knowledge of which recruitment methods are effective for such groups. The QuinteT Recruitment Intervention (QRI) is a set of methods successfully used to improve recruitment and informed consent in trials in the general population. We wanted to adapt the QRI so that it can be used to recruit people from EM groups to trials. Over five workshops, we asked 43 public contributors from diverse ethnic backgrounds what changes to make to the following QRI methods: audio-recording of trial discussions, feedback provided to doctors and nurses, interviews with patients, and QRI information sheets and consent forms. We did not intend to discuss barriers to research participation as this has been well explored in multiple studies, but this tended to be what our contributors most wanted to talk about (such as their lack of trust in research, researchers, and health-care professionals). After this discussion, they were open to providing suggestions for QRI adaptations, including ways to foster trust (such as offering a copy of the audio-recorded trial consultation to participants). They felt that training for health-care professionals (HCPs) should be "with" input from people from EM groups rather than "about" such groups. They also provided other suggestions, including clarifying that research interviews are not for medical information provision. Overall, we learnt the importance of providing the space to discuss the community's key concerns before discussing our research topic of interest, even when these concerns have been well explored in the existing research. This helped foster trust among contributors and led to important suggestions on how best to adapt the QRI to help ethnic minority participation in trials. We will now work with a wider group of people, including researchers, doctors, and nurses, to take these suggestions forward in our future QRIs.
Respiratory syncytial virus (RSV) causes substantial morbidity and mortality among older adults and individuals with chronic diseases, putting pressure on healthcare systems. RSV vaccines became available in 2023, however, physicians' knowledge and attitudes regarding RSV and RSV vaccines may hinder uptake. We aimed to understand physicians' knowledge, attitudes, and perceptions of respiratory infections, including RSV, and vaccination. A pre-tested cross-sectional survey was fielded with physicians who commonly administer or recommend respiratory vaccines in Germany and Italy. Regression models assessed physicians' characteristics associated with knowledge and perceptions of RSV. Overall, 307 physicians (Germany: n = 152; Italy: n = 155) completed the survey. Physicians had good mean RSV disease knowledge scores (Germany: 3.8/5; Italy: 3.3/5). Most (Germany: 68%; Italy: 72%) indicated wanting further information on RSV, versus <35% for other respiratory diseases. Most considered RSV an important burden, especially for adults aged ≥50 years with immunocompromising conditions (Germany: >96%; Italy: >92%) and ≥60 years with chronic conditions (Germany: >95%; Italy: >87%). Physicians seeing >100 versus ≤100 patients weekly, and general practitioners versus other specialists, perceived RSV burden as more important. Perceived barriers to RSV vaccination included lack of national recommendation and reimbursement (Germany: 92%; Italy: 89%), and patients not being informed on getting vaccinated (Germany: 71%; Italy: 59%). In conclusion, physicians generally considered RSV an important pathogen for older adults and those with chronic conditions at risk of severe infection. Most wanted more information on RSV, thus medical education is important to address knowledge gaps and enable physicians to guide patients in making informed vaccination decisions.
MYC is a pleiotropic transcription factor involved in multiple cellular processes. While its mechanism of action and targets are not completely elucidated, it has a fundamental role in cellular proliferation, differentiation, metabolism, ribogenesis, and bone and vascular development. Over 4 decades of research and some 10,000 publications linking it to tumorigenesis (by searching PubMed for "MYC oncogene") have led to MYC becoming a most-wanted target for the treatment of cancer, where many of MYC's physiological functions become co-opted for tumour initiation and maintenance. In this context, an abundance of reviews describes strategies for potentially targeting MYC in the oncology field. However, its multiple roles in different aspects of cellular biology suggest that it may also play a role in many additional diseases, and other publications are indeed linking MYC to pathologies beyond cancer. Here, we review these physiological functions and the current literature linking MYC to non-oncological diseases. The intense efforts towards developing MYC inhibitors as a cancer therapy will potentially have huge implications for the treatment of other diseases. In addition, with a complementary approach, we discuss some diseases and conditions where MYC appears to play a protective role and hence its increased expression or activation could be therapeutic.