Seventy six senior academics from 11 countries invite The BMJ’s editors to reconsider their policy of rejecting qualitative research on the grounds of low priority. They challenge the journal to develop a proactive, scholarly, and pluralist approach to research that aligns with its stated mission
BackgroundThe concept of vulnerability has held a central place in research ethics guidance since its introduction in the United States Belmont Report in 1979. It signals mindfulness for researchers and research ethics boards to the possibility that some participants may be at higher risk of harm or wrong. Despite its important intended purpose and widespread use, there is considerable disagreement in the scholarly literature about the meaning and delineation of vulnerability, stemming from a perceived lack of guidance within research ethics standards. The aim of this study was to assess the concept of vulnerability as it is employed in major national and international research ethics policies and guidelines.MethodsWe conducted an in-depth analysis of 11 (five national and six international) research ethics policies and guidelines, exploring their discussions of the definition, application, normative justification and implications of vulnerability.ResultsFew policies and guidelines explicitly defined vulnerability, instead relying on implicit assumptions and the delineation of vulnerable groups and sources of vulnerability. On the whole, we found considerable richness in the content on vulnerability across policies, but note that this relies heavily on the structure imposed on the data through our analysis.ConclusionsOur results underscore a need for policymakers to revisit the guidance on vulnerability in research ethics, and we propose that a process of stakeholder engagement would well-support this effort.
IntroductionImproving the oral health of refugees and asylum seekers is a global priority, yet little is known about the overall burden of oral diseases and their causes for this population.ObjectiveTo synthesize available evidence on the oral health of, and access to oral health care by this population.MethodsUsing a scoping review methodology, we retrieved 3321 records from eight databases and grey literature; 44 publications met the following inclusion criteria: empirical research focused on refugees and/or asylum seekers’ oral health, published between 1990 and 2014 in English, French, Italian, Portuguese, or Spanish. Analysis included descriptive and thematic analysis, as well as critical appraisal using the Critical Appraisal Skills Programme (CASP) criteria for quantitative and qualitative studies.ResultsThe majority of publications (86 %) were from industrialized countries, while the majority of refugees are resettled in developing countries. The most common study designs were quantitative (75 %). Overall, the majority of studies (76 %) were of good quality. Studies mainly explored oral health status, knowledge and practices; a minority (9 %) included interventions. The refugee populations in the studies showed higher burden of oral diseases and limited access to oral health care compared to even the least privileged populations in the host countries. Minimal strategies to improve oral health have been implemented; however, some have impressive outcomes.ConclusionsOral health disparities for this population remain a major concern. More research is needed on refugees in developing countries, refugees residing in refugee camps, and interventions to bridge oral health disparities. This review has utility for policymakers, practitioners, researchers, and other stakeholders working to improve the oral health of this population.
Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members' absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period.
Although the modern pediatric intensive care unit (PICU) has followed general pediatrics and adopted the family-centered care model, little is known about how families prospectively experience PICU care. The authors' goal was to better understand the experiences of families whose child was hospitalized in a PICU. They conducted a 12-month prospective ethnographic study in a PICU in a tertiary care hospital in a large North American urban center. Data were obtained via participant-observation and formal and informal interviews with 18 families and staff key informants. Findings revealed a disconnect between the espoused model of family-centered care and quotidian professional practices. This divergence emerged in the authors' analysis as a heuristic that contrasts a professional "office" to a sick child's "bedroom." PICU practices and protocols transformed the child into a patient and parents into visitors; issues such as noise, visitation, turf, and privacy could favor staff comfort and convenience over that of the child and family. The authors' discussion highlights suggestions to overcome this divergence in order to truly make the PICU family centered.
Background: Inuit interpreters are key players in end-of-life (EOL) care for Nunavik patients and families. This emotionally intensive work requires expertise in French, English and Inuit dialects to negotiate linguistic and cultural challenges. Cultural differences among medical institutions and Inuit communities can lead to value conflicts and moral dilemmas as interpreters navigate how best to transmit messages of care at EOL. Objectives: Our goal was to understand the experience of Inuit interpreters in the context of EOL care in Nunavik in order to identify training needs. Design: In the context of a larger ethnographic project on EOL care in Nunavik, we met with 24 current and former interpreters from local health centres and Montreal tertiary care contexts. Data included informal and formal interviews focusing on linguistic resources, experiences concerning EOL care, and suggestions for the development of interpretation training. Results: Inuit working as interpreters in Nunavik are hired to provide multiple services of which interpretation plays only a part. Many have no formal training and have few resources (e.g. visual aids, dictionaries) to draw upon during medical consultations. Given the small size of communities, many interpreters personally know their clients and often feel overwhelmed by moral dilemmas when translating EOL information for patients and families. The concept of moral distress is a helpful lens to make sense of their experience, including personal and professional repercussions. Conclusions: Inuit interpreters in Nunavik are working with little training yet in context with multiple linguistic and cultural challenges. Linguistic and cultural resources and focused training on moral dilemmas unique to circumpolar contexts could contribute to improved work conditions and ultimately to patient care.
Participant observation strategies may be particularly effective for research involving children and their families in health care settings. These techniques, commonly used in ethnography and grounded theory, can elicit data and foster insights more readily than other research approaches, such as structured interviews or quantitative methods. This article outlines recommendations for the ethical conduct of participant observation in pediatric health care settings. This involves a brief overview of the significant contributions that participant observation can bring to our understanding of children and families in health care settings; an examination of the elements of participant observation that are necessary conditions for its effective conduct; an outline of contemporary ethical norms in Canada, the United Kingdom and the United States for research in pediatric health care settings; and a discussion of how participant observation research should be operationalized in order to comply with these norms.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.