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The status of oral health research in the World Health Organization (WHO) African region is unclear, yet the need for such information is central to moving an oral health agenda forward. Such an agenda is essential for effectively translating research into actionable practices and supporting regional strategies. The aim of this scoping review was to provide data on the scope and output of oral health research in the WHO African region to be used as a starting point for establishing a research agenda that can affect oral health in the region. We conducted a systematic search in PubMed; EMBASE; Epistemonikos; Scopus; the International Association for Dental, Oral, and Craniofacial Research General and Regional Sessions; ProQUEST; PROSPERO; and African regional databases such as Regional African Index Medicus and the African Journal Online. We included primary and secondary studies published in English, French, or Portuguese between January 1, 2011, and December 31, 2022, addressing oral health–related research having individuals, groups, or populations as units of analysis. These reports either addressed a topic relevant to the WHO African region assessed using the title and study objective or were conducted in a country in the region. We excluded in vitro and in vivo studies focusing on cells, biomarkers, or animals. We assessed 24,014 records, and 1,379 proved eligible. Our findings indicate a preference for particular research designs less suitable for evidence-informed practice guidelines and oral policies, a limited scope of oral health research topics, and important regional differences in research capacity. Furthermore, publications by researchers in the WHO African region tend to be published in journals with a limited readership. A discussion of our findings among oral health researchers at academic institutions in the WHO African region on how to create within- and across-country collaborations could potentially improve both health and oral health in the region. [ABSTRACT FROM AUTHOR]

Qualitative research is important to advance health equity as it offers nuanced insights into structural determinants of health inequities, amplifies the voices of communities directly affected by health inequities, and informs community-based interventions. The scale and frequency of public health crises have accelerated in recent years (e.g., pandemic, environmental disasters, climate change). The field of public health research and practice would benefit from timely and time-sensitive qualitative inquiries for which a practical approach to qualitative data analysis (QDA) is needed. One useful QDA approach stemming from sociology is flexible coding. We discuss our practical experience with a team-based approach using flexible coding for qualitative data analysis in public health, illustrating how this process can be applied to address multiple research questions simultaneously or asynchronously. We share lessons from this case study, while acknowledging that flexible coding has broader applicability across disciplines. Flexible coding provides an approachable step-by-step process that enables collaboration among coders of varying levels of experience to analyze large datasets. It also serves as a valuable training tool for novice coders, something urgently needed in public health. The structuring enabled through flexible coding allows for prioritizing urgent research questions, while preparing large datasets to be revisited many times, facilitating secondary analysis. We further discuss the benefit of flexible coding for increasing the reliability of results through active engagement with the data and the production of multiple analytical outputs. [ABSTRACT FROM AUTHOR]

Adequate and transparent reporting is necessary for critically appraising published research. Yet, ample evidence suggests that the design, conduct, analysis, interpretation, and reporting of oral health research could be greatly improved. Accordingly, the Task Force on Design and Analysis in Oral Health Research—statisticians and trialists from academia and industry—identified the minimum information needed to report and evaluate observational studies and clinical trials in oral health: the OHStat Guidelines. Drafts were circulated to the editors of 85 oral health journals and to Task Force members and sponsors and discussed at a December 2020 workshop attended by 49 researchers. The guidelines were subsequently revised by the Task Force's writing group. The guidelines draw heavily from the Consolidated Standards for Reporting Trials (CONSORT), Strengthening the Reporting of Observational Studies in Epidemiology (STROBE), and CONSORT harms guidelines and incorporate the SAMPL guidelines for reporting statistics, the CLIP principles for documenting images, and the GRADE indicating the quality of evidence. The guidelines also recommend reporting estimates in clinically meaningful units using confidence intervals, rather than relying on P values. In addition, OHStat introduces 7 new guidelines that concern the text itself, such as checking the congruence between abstract and text, structuring the discussion, and listing conclusions to make them more specific. OHStat does not replace other reporting guidelines; it incorporates those most relevant to dental research into a single document. Manuscripts using the OHStat guidelines will provide more information specific to oral health research. [ABSTRACT FROM AUTHOR]

Adapting indigenous qualitative research methods to an online platform was essential for indigenous qualitative research to continue during the COVID-19 pandemic. Online qualitative data collection is a new method supporting health and other research. During the pandemic, shifting to online qualitative data collection was largely driven by impacts of COVID-19 restrictions where in-person data collection could not be undertaken. Recent research has evaluated online focus groups compared to the in-person focus group approach. However, less is understood about how Māori, Pacific and other Indigenous cultural protocols translate to an online approach. This article is based on a study that undertook an Indigenous approach to online data collection during a period of COVID-19 restrictions in 2022. The study was based in Auckland, Aotearoa New Zealand, focused on gaining Māori, Samoan, Tongan and Cook Island Māori perspectives of streptococcus isolate use for rheumatic fever surveillance and research. In Aotearoa New Zealand, rheumatic fever inequitably affects Māori and Pacific children aged 5–15 years. The project used Kaupapa Māori and Pacific centred research methodologies that included online wānanga and fono methods to collect qualitative data from Māori, Tongan, Samoan and Cook Island Māori participants. This article critically reflects on the strengths and challenges of using these methodologies and Māori and Pacific cultural practices in an online health research. The article demonstrates how Indigenous methodologies can effectively be undertaken in online contexts and still maintain cultural integrity and provide rich qualitative data compared to in-person and western informed online qualitative data collection methods. [ABSTRACT FROM AUTHOR]

All qualitative researchers are familiar with the idea of saturation: that researchers should continue to collect and/or analyze data until nothing new is being added to their arguments or conclusions. Saturation is, however, used and understood in a variety of ways, often appearing as an unevidenced and dogmatic statement seeking to justify that a piece of research is complete. This article explores the application of the idea of saturation in qualitative research, noting its association with grounded theory and the particular interest taken in it by health researchers. It concludes that it is both a misunderstood and an overworked concept. [ABSTRACT FROM AUTHOR]

Black men in the United States face disproportionately high rates of firearm violence, leading to death and disability more often than males of other racial/ethnic groups. Managing life after such injuries involves significant challenges in daily activities, employment, and pain management. Despite the critical impacts of firearm-related disabilities on Black men, their experiences remain largely unexplored by disability scholars, public health researchers, and practitioners. This oversight is alarming, as Black men with firearm-acquired disabilities encounter considerable structural barriers to achieving health and social objectives. Our team focuses on: (a) the experiences of Black men with firearm-acquired disabilities, (b) the lack of literature on their lived realities, and (c) new pathways for disability and public health research. Recognizing and addressing the invisibility of violently injured Black men in research is crucial for advancing equity, social justice, and representation across society. We argue that disability justice is a vital starting point for acknowledging the social experiences of gunshot wound survivors. More research is needed to understand the experiences of these young Black men who have been largely ignored in public health and disability narratives. It is essential for clinicians and policymakers to grasp how this neglect affects conventional views on health, accessibility, and well-being, underscoring the need for a more inclusive and equitable approach. [ABSTRACT FROM AUTHOR]

Qualitative Longitudinal Research (QLR) is a dynamic and evolving methodology using time as a lens to inform study design, data collection and analysis. A key feature of QLR is the collection of data on more than one occasion, often described as waves or time points. Thus, researchers embarking on designing a new study need to consider several key features including the study duration (timeframe) and the frequency and intensity of data collection (tempo). Yet, how to embed these features in practice is not well described. Leveraging the intensive-extensive temporal plane of time, we explore research approaches employing both shorter and longer timeframes, as well as intensive and extensive tempos. Drawing on six studies that we have conducted, we discuss four pivotal aspects including: (i) crafting intensive-extensive tempo and timeframes; (ii) defining baseline and closure points; (iii) planning for flexibility; and (iv) working ethically within a temporal lens. By examining and critically analysing these case studies through the lens of the intensive-extensive plane of time, this article aspires to offer insights for researchers interested in using the QLR design in healthcare. We thus aim to prepare researchers for embedding these features during the research process. [ABSTRACT FROM AUTHOR]

Animal behaviour and welfare research are part of a wider endeavour to optimize the health and wellbeing of humans, animals and ecosystems. As such, it is part of the One Health research agenda. This article applies ethical principles described by the One Health High Level Expert Panel to animal behaviour and welfare research. These principles entail that animal behaviour and welfare research should be valued equitably alongside other research in transdisciplinary and multisectoral collaboration. It should include and promote a multiplicity of marginalized voices, including those of animals, and it should apply and describe a harmonious balance between human—animal-environment interactions. Lastly, it should describe how humans need to change behaviour, adopt sustainable solutions and recognize the importance of animal welfare and the integrity of the whole ecosystem. [ABSTRACT FROM AUTHOR]

Background : Health research capacity strengthening (HRCS) has been deemed as a complex, multifaceted, and dynamic activity. Despite this, most studies that assess the effectiveness of health research capacity strengthening programmes have not employed complexity-aware approaches and therefore, evidence on how and why such programmes work across different contexts is underdeveloped. This realist study seeks to elicit the initial programme theories (IPTs) that describe how and why the 'Developing Excellence in Leadership, Training and Science Africa' (DELTAS Africa) programme – one of the flagship research capacity strengthening programmes in Africa – works to generate research capacity outcomes specifically in the participating African universities. Methods and Analysis : A realist review of the DELTAS Africa programme documents, and relevant published papers that report on similar research capacity interventions will be carried out. This will help to both identify the outcome pathways and underlying assumptions of the DELTAS Africa programme, as well as tacit theories as postulated by other researchers. The review evidence will inform the drafting of the initial programme theories (IPTs). Interviews with the DELTAS Africa programme designing team will be conducted using a realist interviewing technique to unearth ontologically deeper insights on context, mechanism, and outcomes. Using the realist context-mechanism-outcome configurational maps, we will identify how contexts (i.e., within the African universities) shape mechanisms (the processes, reasoning, or behaviours triggered by the HRCS activities) through which the programme brings about an outcome at institutional level. Conclusion: The initial programme theories will describe how and why health research capacity strengthening works, for whom and under what circumstances across the participating African universities. The programme theories will provide policy-relevant insights on the generative causal mechanisms of HRCS; evidence that is critically needed to inform the design, implementation, and evaluation of HRCS initiatives. [ABSTRACT FROM AUTHOR]

Society is on the heels of one of the largest public health crisis the world has experienced in over a century, the COVID-19 pandemic. Developing the next generation of adept public health researchers is paramount to protecting the world against future health threats and addressing legacy public health challenges. This article explores the transformative influence of research experience on education, presenting three major points: (1) students engaging in public health research is timely, (2) students can develop a variety of critical thinking skills and data-driven decision-making capabilities that prepare them for future careers, and (3) faculty and universities benefit from the collaboration and community that student research fosters. Since the COVID-19 pandemic, more students have been interested in a career in public health, with many students also eager to help address health disparities, a reality highlighted during the pandemic. This article puts forth the value of student engagement in public health research from the student and faculty member's perspectives. The student lens includes the connection between research and developing greater public health interest, a sense of ethical responsibility, and an attitude of open-mindedness. The faculty lens considers the value of skill-building for students and the benefits of increased academic community-building, greater research productivity, and mutual learning potential for both students and faculty. The article includes specific recommendations for faculty to incorporate research into their student training. It concludes by advocating for institutional and community support to encourage student engagement in research and prepare the next generation of public health professionals and researchers. [ABSTRACT FROM AUTHOR]

To contribute to healthcare improvements, qualitative health research must adapt to the demanding pace of constantly changing healthcare practices and policies. To meet this challenge, researchers need methods for rigorous and rapid data analysis. This article introduces the Rapid Group Analysis Process (Rap-GAP), a new approach for rapid qualitative data analysis. This method is more efficient than other rapid qualitative analysis methods. It allows for the direct involvement of diverse participants in the analysis process, including patients or healthcare decision-makers with limited qualitative research experience, while keeping the analysis grounded in the primary data (e.g., transcripts). These attributes make Rap-GAP a unique and valuable alternative to traditional qualitative analysis. This article describes the 5-step Rap-GAP process and 3 case studies that demonstrate how to use the method and adapt it for different analytical goals. Future research will evaluate and describe the outcomes of Rap-GAP compared to traditional qualitative analysis. [ABSTRACT FROM AUTHOR]

This study explores how qualitative health researchers navigate the demands of medical research ethics committees in Germany where qualitative research is subject to approval only when it is conducted in medical contexts. We present the results of a grounded theory study to investigate qualitative health researchers' experiences with procedural ethics and the strategies they adopt to navigate its demands. Our analysis revealed six dimensions of experience and three strategies adopted by researchers to navigate the demands of medical research ethics committees. All participants agreed that research ethics is of high importance in qualitative health research, but strategies to navigate the demands of medical research ethics committees ranged from avoiding, and adapting, to transforming the procedures of ethics review. Based on our findings, we provide recommendations for improving the ethics review of qualitative health research. [ABSTRACT FROM AUTHOR]

Indigenous methodology is a living methodology of doing research in a good way that honours respectful relationships with Indigenous Peoples and communities in which knowledge is co-created and ownership is shared. Guided by Indigenous methodologies, the Urban Indigenous Collective Governance Circle was co-developed for urban Indigenous health research. The Collective Governance uses approaches that stay true to the connectedness of Traditional Knowledges, Indigenous protocols, and relational processes. Relationality ensures guidance from knowledge, experiences, and wisdom of community members participating in, leading, and benefitted by the research. The Governance Circle ensures that self-determination and self-governance is realized through Indigenous health research; research responsive to community-identified priorities, leadership, control, approval, and community ownership. The Collective Governance embraces ethical, respectful, and reciprocal research through a shared process to address health equity for urban Indigenous Peoples. We share insights and recommendations on how to support meaningful urban Indigenous-led community health research. [ABSTRACT FROM AUTHOR]

This commentary emerged from an Indigenous research ethics and governance gathering and a scoping review completed by a diverse team of Indigenous and non-Indigenous scholars, which includes some of the co-authors of this article. A lack of detail regarding whether and how community engagement was carried out and reported in the context of published Indigenous health research in the Atlantic region of Canada were identified. This commentary builds on this work as well as other published works that emphasize the need to further ensure that Indigenous research is community based if not community led. Moreover, this commentary lends support to important changes to journal submission requirements regarding Indigenous health research submissions recently made at the Canadian Journal of Public Health through the work of Senior Editor Dr Janet Smylie and colleagues. [ABSTRACT FROM AUTHOR]

Attention has recently been given to the role of race in many aspects of the research process; however, minimal has been written to critique the role of race in qualitative fieldnotes. This gap creates potential conflicts about representation that can exclude marginalized communities and call into question findings when race is ignored in the research process. To successfully address potential investigator biases with a lens towards social justice and equity in healthcare, a critique of foundational methods is required. Here we posit that a qualitative health researchers' primary tool is their fieldnotes because they contextualize findings and serve as a method to learn through systematic interpretation of local meanings revealed by participants. Here, we provide researchers guidance for teaching and writing fieldnotes that speak to current nuances of observations and interactions with participants. Definitions related to race and ethnicity, the importance of applying appropriate sensitizing frameworks, followed by a discussion of how to use fieldnotes in findings are covered. We include (1) a call for more preparation of novice researchers and a challenge for established researchers to update expertise for collecting and using fieldnotes in the research process, (2) guidance on negotiating difficult situations, and (3) the significance of language in creating credibility in findings when addressing race in qualitative research. [ABSTRACT FROM AUTHOR]

Qualitative methods encompass a variety of research and analysis techniques which have the common aim of uncovering what cannot be captured numerically through the quantification of data. For qualitative analytical methods in the interpretivist tradition (e.g. grounded theory, phenomenological, thematic, etc), inductive coding has become a mainstay but has not always lent itself to collaborative, remote team-based data interpretation among qualitative and mixed-methods clinical researchers. Finding ways to speed the inductive coding process without sacrificing rigour while remaining accessible to geographically dispersed teams remains a priority. This is especially crucial in global health partnerships where on-the-ground researchers may have less input into codebook development compared to in-the-office researchers. We describe a newly-developed, digital approach that integrates findings from our qualitative team, which we call R-EIGHT (Remote and Equitable Inductive Analysis for Global Health Teams). The technique we developed a) speeds the process of inductive coding as a team, b) visually displays interpretive consensus, and c) when appropriate fosters streamlined integration of inductive findings into codebooks. Because it involves all team members, our approach helps break the divide between in-office and on-the-ground teams, fostering integrated and representative contributions from all globally-dispersed team members. [ABSTRACT FROM AUTHOR]

For young people the online world affords creative, entertainment and socialisation opportunities but also poses risks including cyberbullying, grooming and harmful content. Little is known about online experiences of care-experienced young people, a vulnerable group who may benefit from online experiences but may be at increased risk online. This cross-sectional study used data from 11- to 16-year-olds in Wales from the School Health Research Network (SHRN) Student Health and Wellbeing Survey 2017/18 (n = 103,971). Cyberbullying, face-to-face bullying and other online experiences were analysed. The prevalence of these experiences and associated mean wellbeing scores were compared for young people in care (n = 1,921) and not in care (n = 83,551), controlling for socio-demographic variables gender, ethnicity and year group. Higher numbers of young people in care were involved in cyberbullying, bullying, sharing explicit images, problematic social media use and regular contact with online only friends. These online experiences were associated with lower mean wellbeing scores. Lower numbers of young people in care had access to smartphones and social networking sites from age 12, and lower numbers were regularly in online contact with close friends and a wider peer group. These online experiences were associated with higher mean wellbeing scores. Young people in care appear to be less involved with online experiences that positively impact wellbeing and more involved in online experiences that negatively impact wellbeing. Promoting positive online experiences and education around problematic social media use may be particularly valuable in helping young people living in care develop healthy, safe and positive online lives. [ABSTRACT FROM AUTHOR]

The Sub-Saharan African-born community in Australia is significantly underrepresented in health research, partly, due to challenges associated with collecting their primary data. Based on experience from a mixed-method study comprising 24 in-depth interviews and a survey of 253 participants in the community, this communication paper highlights a number of 'high-level' practical issues that might be encountered when collecting primary data from the community and provides suggestions for future studies. Included in this paper is a brief discussion of important lessons from the fieldwork that are critical for achieving successful data collection from the community. The lessons include difficulty of proving external validity for samples drawn from the community, difficulty of developing a reliable sampling frame, challenges in selecting appropriate support organisations, risk of low response to surveys and language barrier. The study concludes that understanding the ethnic diversities in this community and engaging appropriate support organisations are critical to achieving a successful data collection experience. [ABSTRACT FROM AUTHOR]

Observational research provides valuable opportunities to advance oral health science but is limited by vulnerabilities to systematic bias, including unmeasured confounding, errors in variable measurement, or bias in the creation of study populations and/or analytic samples. The potential influence of systematic biases on observed results is often only briefly mentioned among the discussion of limitations of a given study, despite existing methods that support detailed assessments of their potential effects. Quantitative bias analysis is a set of methodological techniques that, when applied to observational data, can provide important context to aid in the interpretation and integration of observational research findings into the broader body of oral health research. Specifically, these methods were developed to provide quantitative estimates of the potential magnitude and direction of the influence of systematic biases on observed results. We aim to encourage and facilitate the broad adoption of quantitative bias analyses into observational oral health research. To this end, we provide an overview of quantitative bias analysis techniques, including a step-by-step implementation guide. We also provide a detailed appendix that guides readers through an applied example using real data obtained from a prospective observational cohort study of preconception periodontitis in relation to time to pregnancy. Quantitative bias analysis methods are available to all investigators. When appropriately applied to observational studies, findings from such studies can have a greater impact in the broader research context. [ABSTRACT FROM AUTHOR]

Photo elicitation interviewing (PEI), as a visual qualitative research methodology, has been used widely in various fields with different participants. However, little has been written about using the method in public health research, especially involving men in low-income settings. In this paper, the authors reflect upon the use of PEI in a study that explored fathers' experiences in child care and feeding in a low-income neighbourhood of Addis Ababa city in Ethiopia. The reflections focus on two overarching themes; (1) how PEI worked well as an effective technique in terms of addressing the research questions posed in this low-resourced setting and (2) how it served to enhance phenomenology in qualitative public health research. The researchers also discuss the limitations and lessons from employing this methodology through continuous reflexivity, which is valuable to qualitative work. [ABSTRACT FROM AUTHOR]

When hospitals ask broad consent for the secondary use of patient data for scientific research, it is unknown for which studies the data will be used. We investigated what patients at a cancer hospital consider to be an adequate level and most suitable method of information provision using questionnaires (n = 71) and interviews (n = 24). A part of the respondents indicated that they would feel sufficiently informed by either being notified about potential further use, or by receiving a general brochure before being asked for consent. Others stated that additional information would be interesting and appreciated. Yet, when discussing required resources needed to provide additional information, interviewees lowered the bar of what they considered minimally required, voicing the importance of spending resources on research. [ABSTRACT FROM AUTHOR]

Community participation in research involving stigmatized populations has been sub-optimal, and digital tools could potentially increase participation in qualitative research. This study aims to describe the implementation of an online chat-based FGD (Focus Group Discussion) with men who have sex with men (MSM) in China as part of formative research for the PIONEER project, determine the advantages and limitations associated with the approach, and assess the feasibility of deepening community participation in STI research. Participants were involved in four days of asynchronous FGDs on sexually transmitted diseases and answered questions about the online FGD method. Online FGDs allowed us to deepen participant engagement through bidirectional communication channels. Data from online FGDs directly informed recruitment strategies and community participation for a clinical trial. Overall, 63% (29/46) of men who had never participated in offline LGBTQ + activities joined online FGDs. Many participants (89%, 41/46) noted that online FGDs were more convenient, less socially awkward, and more anonymous than in-person qualitative research. We highlighted potential risks as well as mitigation strategies when using online FGDs. Online FGDs were feasible among this group of sexual minorities and may be particularly useful in many cities where stigma limits in-person research participation. [ABSTRACT FROM AUTHOR]

The editorial "Toward Better Reporting in Oral Health Research" highlights the importance of robust evidence in scientific studies, emphasizing the need for accurate reporting and replication of research findings. The article discusses challenges in replicating studies due to incomplete reporting of methods and lack of data sharing by authors. It introduces the OHStat Guidelines, a new checklist specifically for oral health studies, aimed at improving the quality and reproducibility of research in the field. The guidelines recommend reporting calculated P values, using multivariable statistical methods, and addressing common issues in oral health research. The article concludes by acknowledging the ongoing efforts needed to enhance the trustworthiness of scientific studies and improve clinical interventions and public health programs in oral health. [Extracted from the article]

Background: Although often overlooked, patient and public involvement (PPI) is vital when considering the design and delivery of complex and adaptive clinical trial designs for chronic health conditions such as multiple sclerosis (MS). Methods: We conducted a rapid review to assess current status of PPI in the design and conduct of clinical trials in MS over the last 5 years. We provide a case study describing PPI in the development of a platform clinical trial in progressive MS. Results: We identified only eight unique clinical trials that described PPI as part of articles or protocols; nearly, all were linked with funders who encourage or mandate PPI in health research. The OCTOPUS trial was co-designed with people affected by MS. They were central to every aspect from forming part of a governance group shaping the direction and strategy, to the working groups for treatment selection, trial design and delivery. They led the PPI strategy which enabled a more accessible, acceptable and inclusive design. Conclusion: Active, meaningful PPI in clinical trial design increases the quality and relevance of studies and the likelihood of impact for the patient community. We offer recommendations for enhancing PPI in future MS clinical trials. [ABSTRACT FROM AUTHOR]

With an increasing incidence and a high cure rate, a growing number of testicular germ cell tumor (TGCT) survivors require specialized follow-up care. However, knowledge of these patients' needs is lacking, leaving TGCT survivors with unmet care needs at risk of symptom burden when transitioning to long-term survivorship. This grounded theory study aimed to understand the perspectives of TGCT survivors' transition from follow-up care to long-term survivorship. A total of 12 adult TGCT survivors in follow-up care or completion less than a year were in-depth semi-structured interviewed. Interviews were audiotaped and transcribed verbatim. Transcripts were analyzed by constant comparison, and the core category "Dealing with back-and-forth forces" emerged in the integrated concepts. Two comparative processes in dealing with those forces were identified: the process of Living beyond the sword of Damocles involved the transition from feeling threatened by cancer to overcoming those threats; the process of Getting on with one's life can be described as transitioning from a period where cancer overruled their lives to carrying on with everyday life. The processes toward long-term survivorship follow general characteristics; the transition itself is an individual journey that depends on (life) experiences. The constructed model can guide healthcare professionals and researchers involved in TGCT survivorship to understand TGCT survivors' individual and ensuing needs. When TGCT survivors receive individualized and tailored follow-up care, it can assist in preventing and reducing long-term and late effects on long-term survivorship. [ABSTRACT FROM AUTHOR]

Vulnerability has typically been addressed in the context of research ethics from the point of view of participants, with a focus on how to prevent the potential or exacerbation of existing harm caused by the power and role asymmetries between researchers and participants. However, more recent approaches to research ethics question whether researchers are, by definition, located in a privileged position during the research process and safe from any kind of vulnerability. In line with this, we reflect on the dimensions of researcher vulnerability specific to studies using a qualitative methodology in health research. Our argument is that participants and researchers should be on the receiving end of efforts to implement ethical procedures and protection from harm. Based on the autoethnographic analysis of our experiences as qualitative health researchers, this paper aims to identify dimensions of researcher vulnerability, and draw out relevant recommendations for practice. The reflections upon which this paper is based emerged during a spring school focusing on research ethics in qualitative health research, during which we discussed situations from our own research experience which left us feeling vulnerable. We identify four dimensions related to the experience of vulnerability (reciprocity; emotional labor; application of ethical standards; reversed power asymmetries) and five crosscutting aspects relating to these dimensions (researching sensitive topics; researching in contexts of vulnerability, poverty and structural violence; being a novice; lacking adequate support; insufficient time and space for ethical reflexivity). Our recommendations address particular challenges for these dimensions, and center on the role of reflexivity, as one of the cornerstones for enabling ethical qualitative research practice, requiring us to acknowledge and address our own vulnerability and positionality. Autoethnographic exercises are particularly useful for zooming in on ethically important moments in research related to researcher vulnerability and fruitful for identifying resources to respond to such challenges in the future. [ABSTRACT FROM AUTHOR]

There is a profoundly troubling history of research being done on Indigenous peoples without regard for their priorities and accompanying calls to decolonize health research. Storytelling methods can privilege Indigenous voices in research. Indigenous people's knowledge systems have existed for millennium, where knowledge is produced and shared through stories. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous Elders, patients, healthcare providers, and administrators, conducted a participatory, scoping review to examine how storytelling has been used as a method in Indigenous health research on Turtle Island (North America), Australia, and Aotearoa (New Zealand). We searched key databases and online sources for qualitative and mixed-methods studies that involved Indigenous participants and used storytelling as a method in health research. Reviewers screened abstracts/full texts to confirm eligibility. Narrative data were extracted and synthesized. An intensive collaboration was woven throughout and included gatherings incorporating Indigenous protocol, Elders' teachings on storytelling, and sharing circles. We included 178 articles and found a diverse array of storytelling approaches and adaptations, along with exemplary practices and problematic omissions. Researchers honoured Indigenous ways of knowing, being, and doing through careful preparation and community engagement to do storywork, inclusion of Indigenous languages and protocols, and Indigenous initiation and governance. Storytelling centered Indigenous voices, was a culturally relevant and respectful method, involved a healing process, and reclaimed Indigenous stories. But it could result in several challenges when researchers did not meaningfully engage with Indigenous peoples. These findings can guide respectful storytelling research that bridges divergent Indigenous and Western knowledge systems, to decolonize health research. [ABSTRACT FROM AUTHOR]

COVID-19 has highlighted the vulnerability of intensive care unit (ICU) patients and the negative sequelae associated with ICU treatment. While the potentially traumatic impact of ICU is well documented, less is known about the ICU survivor's subjective experience and how it influences life post-discharge. Existential psychology addresses the universal concerns of existence, including death, isolation, and meaninglessness, and offers a holistic view of human experience beyond diagnostic categories. An existential psychological understanding of ICU COVID-19 survivorship may therefore provide a rich account of what it means to be among the worst affected by a global existential crisis. This study employed interpretive phenomenological analysis of qualitative interviews with 10 post-ICU COVID-19 survivors (aged 18–78). Interviews were structured on existential psychology's 'Four Worlds' model that explores the physical, social, personal, and spiritual dimensions of human experience. The essential meaning of ICU COVID-19 survival was conceptualised as ' Trying to Reconnect with a Changed Reality ' and consisted of four themes. The first, Between Shifting Realities in ICU, described the liminal nature of ICU and the need to ground oneself. The second, What it Means to Care and Be Cared For, captured the emotive nature of personal interdependence and reciprocity. The third, The Self is Different, described survivors' struggle to reconcile old and new selves. The fourth, A New Relationship with Life, outlined how survivors' experiences shaped their new worldviews. Findings evidence the value of holistic, existentially informed psychological support for ICU survivors. [ABSTRACT FROM AUTHOR]

Summary: Patient-centred trial design and delivery; improves recruitment and retention; increases participant satisfaction; encourages participation by a more representative cohort; and allows researchers to better meet participants' needs. Research in this area mostly focusses on narrow facets of trial participation. We aimed to systematically identify the breadth of patient-centred factors influencing participation and engagement in trials, and collate them into a framework. Through this we hoped to assist researchers to identify factors that could improve patient-centred trial design and delivery. Robust qualitative and mixed methods systematic reviews are becoming increasingly common in health research. The protocol for this review was prospectively registered on PROSPERO, CRD42020184886. We used the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, Research Type) framework as a standardised systematic search strategy tool. 3 databases were searched as well as references checking, and thematic synthesis was conducted. Screening agreement was performed and code and theme checking were conducted by 2 independent researchers. Data were drawn from 285 peer-reviewed articles. 300 discrete factors were identified, and sorted into 13 themes and subthemes. The full catalogue of factors is included in the Supplementary Material. A summary framework is included in the body of the article. This paper focusses on outlining common ground that themes share, highlighting critical features, and exploring interesting points from the data. Through this, we hope researchers from multiple specialities may be better able to meet patients' needs, protect patients' psychosocial wellbeing, and optimise trial recruitment and retention, with direct positive impact on research time and cost efficiency. [ABSTRACT FROM AUTHOR]

This contribution focuses on our experiences as lecturers and supervisors in qualitative healthcare research in medicine, public health research and sociology, and the role of research ethics in guiding students in their qualitative studies. We argue that students themselves are vulnerable during the transition of becoming a qualitative researcher and that reflection on research is essential. Therefore, the selection of a topic, potential role conflicts and questions of field contingencies management become crucial elements in both teaching and researching. We use qualitative case vignettes, as suggested by Langer, to offer a reflective account of our experience. Protecting students from harm and preventing them from inadvertently causing harm to others are of utmost importance to us. Through these vignettes, we aim to provide a nuanced and reflective view of our experiences in supervising qualitative research. [ABSTRACT FROM AUTHOR]

This commentary serves to explore the relationship between photography and medicine since the 1800s, in order to establish a contemporary link between the two, and thus to act as a renewed invitation for pedagogical consideration for educators and researchers. Three themes are developed: first, there is a strong link between the advancement of photography as a technical field and the advancement of medical practices and education since the 1800s in a way which invites renewed consideration. Second, there is a strong mandate to consider the explosion of visual images in our everyday and global virtual landscapes vis a vis social media for the ongoing purpose of excellent standards for education and research. And finally, the field of narrative medicine has gained significant recognition, bringing the arts into clinical practice and training of clinicians, further suggesting the value and importance of visual data in the field of education and research. These 3 themes are the building blocks for an exploration of the value of visual data, here to stay in virtual and public educational domains. Educators in health sciences and health-related studies are invited to consider the value and strategies of visual data towards curriculum development, as transformative tools, and in regards to their potential not only for education, but also for clinical practice and research. [ABSTRACT FROM AUTHOR]

The purpose of our qualitative health research study was to understand the experiences of Ontarians who accompanied someone throughout their dying process using medical assistance in dying (MAiD). The second phase used digital stories as a method to examine and share these experiences at the end of life. And then the COVID-19 pandemic hit, and we faced a pivot to our original plan. This pivot resulted in reinforcing the myriad benefits of using digital storytelling in qualitative health research. And rather than detracting from the initial study, we also learned that digital storytelling is a flexible method that can be creatively, compassionately, and effectively conducted in virtual spaces. We will employ digital storytelling in future qualitative health research as both a component of studies but also as a conduit for explorations of other tools of data collection and dissemination. [ABSTRACT FROM AUTHOR]

Qualitative studies have become increasingly common and have been used in different fields such as economics, politics, psychology, sociology and health research for different purposes. Instead of collecting numerical data, qualitative research's goal is to gather information from participant's experiences and perceptions. One of the tools to get data related to the participants' experiences in qualitative research is through interviews. One tool that may be helpful for researchers today are digital and video platforms that fall under the domain of the internet-mediated research. The aim of this work is to identify and describe some ethical controversies when using videoconferencing platforms in qualitative health research for interview purposes. Four cases related to the use of digital platforms (videotelephony systems) to conduct interviews in qualitative research were discussed. Rather than give solutions, we reflect upon the possibility and plausibility of using these telecommunication technologies when using the technique of interviews in qualitative research. The ethical issues that may arise when using these technologies are related to privacy, confidentiality, accuracy of information and expertise when using the platforms. We think that the researcher is committed to making the best decisions in favor of the participant when using digital tools to gather information. In this regard, qualitative researchers may be benefited by the reflections we present insofar they may consider these possible scenarios that may rise ethical issues when collecting data. The activity of research needs to be escorted by constant ethical deliberations to protect participants' rights during the collection of data phase. [ABSTRACT FROM AUTHOR]

Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of "structural" coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers' experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics. [ABSTRACT FROM AUTHOR]

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/AIDS research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view —is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting. [ABSTRACT FROM AUTHOR]

COVID-19 ushered in public health guidelines restricting face-to-face contact and movement, and encouraging social distancing, all of which had implications for conducting field-based research during the pandemic. For qualitative researchers, this meant adapting conventional face-to-face methods and resorting to virtual variations of the same in adherence to stipulated COVID-19 health protocols. Virtual qualitative research introduced new concerns and logistical challenges. This paper presents critical reflections on experiences of conducting qualitative research during the pandemic, from the perspectives of a cohort of postgraduate fellows. A critical reflection framework was utilised to explore fellows experiences and meanings ascribed to their experiences. The research findings illustrate three overarching processes which, in turn, shaped ways of thinking, doing and being. First, explicating tacit assumptions about their anticipated research journeys and interrogating these. Second, shifts in power differentials demonstrated by role reversal between researchers and participants, and between fellows and supervisors as they re-negotiated their positionalities in virtual research spaces. Third, context specific sense-making, in which - narrative accounts support the notion of knowledge as a social construct. Our findings have important implications for qualitative research practice. Our study documents methodological nuances and social implications of conducting qualitative research during COVID-19 and in a-South African context. In addition, our study exemplifies the use of critical reflection in qualitative research practice in the specific context of postgraduate academic research. Further, our study illustrates how the use of technology shapes qualitative research protocol development, data collection and analysis phases. [ABSTRACT FROM AUTHOR]

Recruitment in Health Research Linguistic differences could also result in barriers to effective participant recruitment in health research, SP sp [14] SP sp an issue often underreported in the health research literature. SP sp [15] SP sp This could negatively impact the ability to generalize research findings to populations who speak minor languages, populations often affected by health inequities. Researchers who speak languages other than English and that have a greater impact, such as Spanish, French, or German, are still overrepresented in high-income countries. SP sp [9] SP sp The result is an omission of most researchers, mainly from LMICs where these languages are often not an additional language or the researchers are not fluent in English. As of 2021, there are 7,139 spoken languages recorded, with more than half having no written form. SP sp [1] SP sp Of these, only 23 are spoken by more than half of the world's population and claim disproportionate dominance. SP sp [1] SP sp Furthermore, health research, including mental health research, is disproportionately dominated by English, followed by other dominant languages such as Spanish and Russian. SP sp [2] SP sp The issue, however, is broader than the establishment of English as the lingua franca of academia. Still, it could be helpful for governments to develop language translation services for health research and the dissemination of health-related and other information. [Extracted from the article]

Translation in qualitative research is an essential process to accurately convey participants' meanings between languages, thus ensuring the trustworthiness of qualitative research. However, detailed reporting of this crucial process is not included in current reporting guidelines. We will illustrate the complexity of the translation process based on our experiences across research contexts in three countries. We also provide recommendations to preserve participants' meanings and research trustworthiness. These experiences highlight the importance of accurately reporting the translation process in cross-language qualitative health research and emphasise the need for a clear and comprehensive reporting guideline. [ABSTRACT FROM AUTHOR]

Systems Thinking is increasingly applied to address complex societal and public health issues in Aotearoa, New Zealand and has been proposed as a good fit with traditional wisdom and Mātauranga Māori (Indigenous knowledge) from Aotearoa, New Zealand. In this article, we delve into the theoretical underpinnings of Systems Thinking approaches used in Community-Based System Dynamics research and find parallels with Indigenous narratives and knowledge. The synergy created by combining these two knowledge systems and practices is proposed as an effective way to approach public health issues that emerge from complex adaptive systems, particularly in communities with large numbers of Indigenous peoples. Examples are given from an initiative to engage community to improve food security and nutrition in regional Aotearoa, New Zealand. [ABSTRACT FROM AUTHOR]

Despite their vulnerability, adolescents are often excluded from health research due to ethical concerns about research with minors, especially in low-income regions like Sub-Saharan Africa. We enrolled adolescent girls aged 15–17 years and caregivers of girls of the same age. Using a 25-question Comprehension Score Sheet, we applied a quantitative approach to compare the comprehension of informed consent of 33 adolescent girls and 41 caregivers of adolescent girls aged 15–17 years. The assessments were audio-recorded and reviewed for quality check. The results showed that adolescent girls were significantly better than caregivers in comprehending informed consent information overall and specifically on study procedures, voluntarism and study purpose. This suggests that adolescents can understand informed consent information at the same level as or better than caregivers who are entrusted with providing permission for adolescents to participate in research. [ABSTRACT FROM AUTHOR]

The spring school and the special issue demonstrate the importance and fruitfulness of a dialogue between peers on ethical challenges in qualitative health research that go beyond those related to ethics review. Other authors have maintained that the incompatibility between ethics review criteria and procedures and qualitative research is exaggerated and premised on an overly bureaucratic and regulatory model of research ethics oversight ([2]; [10]; [16]). Spring School on the Ethics of Qualitative Health Research The articles collected in this special issue present results from the international and interdisciplinary spring school "Research Ethics in Qualitative Health Research.". [Extracted from the article]

As the research and treatment of childhood cancer steadily progresses, so has the interest in children's needs, not only throughout such treatment but also following completion. Whilst there is increased literature focussing on the long-term psychosocial impact of treatment completion, little is currently known about how children and young people (CYP) experience the more immediate end of their cancer treatment. The current review seeks to examine CYP's experiences of the end of their cancer treatment. Sixteen studies were retrieved using a systematic search strategy across five databases, all of which used qualitative methodology. Thematic synthesis was chosen to analyse the data. Four overarching themes were generated, which encompassed ' the continuity of cancer ', ' ambivalence of needs ', ' making sense of the cancer experience ' and ' sense of self following the ending '. The end of treatment is a time of complexity for CYP, yet it is currently largely overlooked. In order to scaffold these endings for CYP, increased emphasis and thought needs to be placed on the end of treatment and the support that is provided within it. [ABSTRACT FROM AUTHOR]

Denmark has a 35-year history of monitoring health status in the general population through health surveys. In this commentary, we outline the development of health surveys in Denmark from the beginning in 1987 to the present time. We describe how the current systematic framework for the Danish National Health Survey (DNHS) developed. We discuss the methodological basis for the DNHS and describe its application in public health practice and research. Over the years, the DNHS has become an important part of the Danish public health environment. Challenges for the DNHS in the future are to adapt to new trends in public health and at the same time to be able to monitor important changes consistently over time. [ABSTRACT FROM AUTHOR]

Global health's persistent focus on women's health-seeking behaviour necessitates a philosophical understanding of the meaning behind women's health decision-making. In studying health-seeking behaviour, researchers use philosophical paradigms to explicate and understand complex social concepts that continue to maintain health inequities and injustices. A commonly used theory is Bourdieu's Theory of Practice. This paper examines the scholastic application of Bourdieu's theory of practice to theorize women's health-seeking behaviour in qualitative research to understand the rationale behind using health services. The theory of practice consists of four concepts: practice, habitus, field, and capital. Each concept conceptualizes the theory to find a logical meaning for social practices. The theory uses a relational approach between agency and structure to account for social life. The goal is to develop a theoretical framework from a feminist perspective to understand how women seek care with contextual factors that can inhibit or outrightly limit their agency. Researchers limit cultural capital's role in linking health-seeking behaviour to economic capital in health disparities. Additionally, in formulating women's health policies without adequate consideration of women's experiences and preferences, such policies become patriarchal, where men assume an expert knowledge of women's health, failing to recognize the diversity of experiences. In our quest to develop new theories as feminist researchers, we must acknowledge these taken-for-granted assumptions and address them. [ABSTRACT FROM AUTHOR]

Purpose: Editors often require ethical statements in research publications. This is particularly important with genetic data where discrimination may occur upon data disclosures. The purpose of this research is to determine if there was a positive trend of publishing ethical statements in dental genetic research. The study is limited to AXIN2 mutations which may be associated with oligodontia and cancer. Methods: A MEDLINE search of 2011–2021 articles concerning AXIN2, oligodontia, and ethical statements was conducted. Reviews, nonhuman subject research, abstracts, and articles not written nor translated into English were excluded. Results: Forty-four studies were found; 10 excluded. There were 25 (75.8%) with ethical statements, and 25 (75.8%) with participant consent statements. There was no significant difference by year in ethical statements over the ten years (p = 0.094). Conclusion: There is a need to encourage more ethical statements in publications especially for genetically sensitive topics to reassure readers of ethical practices. [ABSTRACT FROM AUTHOR]

Bridget Pratt and Adrian Harper (2021) conducted a comparison of articles identified through six electronic literature searches. Their aim was to "identify ethics literature... that discussed combatting neo-colonial models of research". They used manifest content analysis to compare the conceptual content of articles from the fields of global health (GH) and Australian Aboriginal health (AH). This innovative application of a literature review approach from literary and media studies, to health sciences in which literature reviews have traditionally focused on synthesizing evidence about intervention effectiveness, should be commended. It has potential to advance theoretical understandings of ethics in health research. However, I argue here that Pratt and Harper's (2021) search strategy has several weaknesses, which suggests that their results must be interpreted with caution. [ABSTRACT FROM AUTHOR]

The ethics of research involving Aboriginal populations and low and middle-income country populations each developed out of a long history of exploitative research projects and partnerships. Commonalities and differences between the two fields have not yet been examined. This study undertook two independent literature searches for Aboriginal health research ethics and global health research ethics. Content analysis identified shared and differently emphasised ethical principles and concepts between the two fields. Shared ethical concepts like "benefit" and "capacity development" have been developed to guide collaborations in both Aboriginal health research and global health research. However, Aboriginal health research ethics gives much greater prominence to ethical principles that assist in decolonising research practice such as "self-determination", "community-control", and "community ownership". The paper argues that global health research ethics would benefit from giving greater emphasis to these principles to guide research practice, while justice as approached in global health research ethics may inform Aboriginal health research practice. With increasing attention being drawn to the need to decolonise global health research, the lessons Aboriginal health research ethics can offer may be especially timely. [ABSTRACT FROM AUTHOR]

Applied mixed methods research for sexual and reproductive health (SRH) issues involves multiple researchers and presents numerous responsibilities as well as unforeseen challenges. These challenges together with the often ignored and under-researched area of male sexual and reproductive health and rights (SRHR) in Bangladesh require researchers to navigate cultural stigmas associated with SRH and hostile political situations across the country. We conducted a nationwide mixed methods research study to explore the SRHR of male youth. This study is the first of its kind in the context of Bangladesh. The aim of this paper is to describe the challenges experienced and mitigation strategies undertaken to conduct research on the SRHR of young males in Bangladesh. A group of experts, practitioners, service delivery staff and researchers were consulted during the tool development stage. However, challenges in obtaining permission from community members, explanation of SRH-specific topics, and establishing respondents' trust persisted throughout the study. Mitigation strategies included spending time outside of scheduled interview hours and making repeated visits to respondents to establish trust. These strategies allowed for honest discussions over time and served to assure our study respondents that the confidentiality of their data would be protected. In addition to sourcing letters from official authorities, we had conversations with community influential people such as religious leaders and political representatives about the nature of our study and explained to them the implications of the study for the future of young men's health. Moreover, we highlight the political issues of the time and shed light on the ad hoc measures taken to overcome the challenges we faced. These reflections can provide valuable insights for researchers conducting SRHR-related studies in similar social and political settings. [ABSTRACT FROM AUTHOR]

Digital storytelling aims to illuminate complex narratives of health and illness when used as a method in health research. Digital stories are three to five minute videos that integrate written and narrated stories with multiple aesthetic components. There is increasing interest in digital storytelling as a research method, yet there is limited synthesized knowledge about its use. A systematic review to advance methodological understanding was warranted. Our systematic review purpose was to identify and synthesize evidence on the use, impact, and ethical considerations of digital storytelling as a method in health research. Key databases and online sources were searched for qualitative, quantitative, and mixed methods studies using digital storytelling. Articles with pediatric or adult populations, family members, or healthcare professionals were included. The focus was on digital storytelling in health research, where it was used as a method, at any point in the research process. Two independent reviewers screened abstracts and full texts to confirm eligibility. We conducted a narrative synthesis of the extracted narrative data. The searches yielded 7285 articles. Following the removal of duplicates and screening, 46 articles met the inclusion criteria, which predominantly used qualitative methodology. An analysis of the extracted data resulted in seven descriptive themes which provided insight into the purpose, definition, process, context, impact and ethical considerations of this method. Digital storytelling is an empowering and disruptive method that captures voice through a process-oriented, flexible approach. It is particularly effective at honouring local and cultural knowledge, and evoking change. Researchers have used consistent facilitation approaches, but theoretical inconsistency, diverse positioning in analysis, and ethical complexity remain significant challenges. These findings provide methodological insight for applying digital storytelling in future research. Systematic review protocol registration: CRD42017068002. [ABSTRACT FROM AUTHOR]

Background: Introductory Psychology students rarely learn about unethical biomedical research outside the Tuskegee syphilis study, but these practices were widespread in U.S. public health research (e.g., at the Willowbrook State School researchers infected children with disabilities with hepatitis). Objectives: Replicate and extend Grose-Fifer's research ethics activity by evaluating if an online homework and in-class role-play increased awareness of unethical research and abuses at Tuskegee (replication) and Willowbrook (extension) and subsequent changes in human subjects protections. Method: As homework, students read about the studies and wrote statements from perspectives of individuals involved. In class, students read their statements and discussed how outrage led to research conduct regulations. Online pre/posttests asked students why it was important to learn about both studies. Results: At posttest, students were more aware of unethical research at Willowbrook and that Tuskegee led to changes in human subjects protections. Students who completed the role-play activity were less likely to mention abuses for Tuskegee than students who did not participate. Conclusion: We were partially successful in replicating and extending Grose-Fifer. Teaching Implications: Research ethics instruction should draw attention to historical precedents and how public outrage and social activism led to increased protections for research participants. [ABSTRACT FROM AUTHOR]