Ethical, Practical, and Methodological Considerations for Unobtrusive Qualitative Research About Personal Narratives Shared on the Internet

As Internet research grows in popularity, attention to the ethics of studying online content is crucial to ensuring ethical diligence and appropriateness. Over recent years, ethical guidelines and recommendations have emerged to advise researchers and institutional review boards on best practices. However, these guidelines are sometimes irrelevant, overly rigid, or lack recognition of the contingent nature of ethical decision-making in qualitative research. Furthermore, varied ethical stances and practices are evident in existing literature. This article explores key ethical issues for qualitative research involving online content, with a focus on the unobtrusive study of personal narratives shared via the Internet. Principles of informed consent and confidentiality are examined in depth alongside practical and methodological considerations for unobtrusive qualitative research. This critical exploration contributes to ongoing discussion of ethical conduct of Internet research and promotes ethically aware yet flexible approaches to online qualitative research and creative methodological efforts to overcoming ethical challenges

“Balancing two worlds”: a constructivist grounded theory exploring distributed/decentralised nursing education in rural and remote areas in Canada and Norway

ABSTRACTA challenge confronting northern nursing is delivery of equitable and culturally competent nursing education. Advances in technology support distributed approaches for decentralised learning and enhance the feasibility of nursing education in rural and remote regions. However, there is limited scholarship on distributed/decentralised technologies in nursing education, particularly in northern and circumpolar regions. The purpose of this constructivist grounded theory research was to develop an enhanced understanding of the unique experiences of students, faculty and administrators who use distributed/decentralised methods and technology. Open-ended interviews were completed in 2015–17 with nursing students (n = 8), faculty and administrators (n = 6) at two universities using distributed/decentralised educational strategies in northern and circumpolar regions. Interviews, journal entries, field notes and memos, were analysed using grounded theory procedures. Findings indicated that distributed/decentralised programs offered rural and remote students educational possibilities that “fit” which would not have otherwise existed. However, Balancing Two Worlds created a collision of roles resulting in the potential loss of balance. Students rectified the Fear of “Falling Off” of their program through four subprocesses: Being Disciplined, Having Realistic Expectations, Planning Ahead and Staying Motivated which provided structure and predictability. Findings support the development of empirical knowledge regarding distributed/decentralised technologies in nursing education and a foundation for future research

Integrating Constructivist Grounded Theory with a Patient-Oriented Research Approach to Enhance Health Promotion Research

Aim To critically explore the value and challenges of combining a traditional methodology (constructivist grounded theory) with a newer approach (Patient-Oriented Research) in nursing research. Overview of the Issue Researchers need to examine novel approaches to research which incorporate the thoughts and ideas of patients and stakeholders in order to ensure that the research is important to end users. However, it is essential to maintain the rigour of traditional methodologies. Therefore, there is a need to explore combining traditional methodologies with new approaches. Results We combined a rigorous methodology with a modern approach to health promotion research that has not been described in the literature. There are numerous synergies between constructivist grounded theory and Patient-Oriented Research. However, tensions exist including pre-conceived knowledge, patients as researchers, and flexibility in research direction. Discussion Constructivist grounded theory with a Patient-Oriented Research approach for use in health promotion research requires thought and intentionality. Consideration of the time and money needed to build relationships and include patient partners as full team members is critical to successful research. Additionally, points of synergy and tension between constructivist grounded theory and Patient-Oriented Research must be navigated with each study. Conclusion Our findings indicate that constructivist grounded theory can be enhanced with a Patient-Oriented Research approach and may lead to increased depth in the development of the substantive grounded theory while also giving voice to the patient-partners. Implications for Profession There is a need for researchers to actively engage patients and stakeholders in a Patient-Oriented Research process while retaining the core of traditional methodologies. Impact This paper will provide researchers with an exemplar to incorporate patients as team members while conducting constructivist grounded theory research

Stratified analyses refine association between TLR7 rare variants and severe COVID-19

Summary: Despite extensive global research into genetic predisposition for severe COVID-19, knowledge on the role of rare host genetic variants and their relation to other risk factors remains limited. Here, 52 genes with prior etiological evidence were sequenced in 1,772 severe COVID-19 cases and 5,347 population-based controls from Spain/Italy. Rare deleterious TLR7 variants were present in 2.4% of young (<60 years) cases with no reported clinical risk factors (n = 378), compared to 0.24% of controls (odds ratio [OR] = 12.3, p = 1.27 × 10−10). Incorporation of the results of either functional assays or protein modeling led to a pronounced increase in effect size (ORmax = 46.5, p = 1.74 × 10−15). Association signals for the X-chromosomal gene TLR7 were also detected in the female-only subgroup, suggesting the existence of additional mechanisms beyond X-linked recessive inheritance in males. Additionally, supporting evidence was generated for a contribution to severe COVID-19 of the previously implicated genes IFNAR2, IFIH1, and TBK1. Our results refine the genetic contribution of rare TLR7 variants to severe COVID-19 and strengthen evidence for the etiological relevance of genes in the interferon signaling pathway