Patrina Sexton Topper

Compared to their cisgender peers, transgender and gender diverse youth (TGDY) face increased risks for negative mental and physical health outcomes, associated with stigma, discrimination, and bar...

Delirium, experienced by up to 50% of hospitalised older adults, continues to be underrecognised, undertreated, and often confused with depression or dementia. Distress is a frequent and impactful symptom experienced in delirium, encompassing the individual's holistic biological or emotional response. Delirium‐related distress has been shown to extend beyond the experience of the patient to include the care partners and nurses who are witnesses to delirium. The essence of delirium‐related distress can be best understood through qualitative methodologies; therefore, this review explored the qualitative literature to summarise what is known about delirium‐related distress in hospitalised older adults, their care partners, and the nurses who care for them. The Arksey and O'Malley methodological framework guided the process of conducting this scoping review, and the main concepts of the population, concept, and context were identified per the Joanna Briggs Institute scoping review methodology. A total of fourteen studies were included in this review, spanning qualitative study designs or mixed‐methods designs that reported qualitative data. The Theory of Unpleasant Symptoms framework was used to categorise the factors that influence delirium‐related distress and the symptom's consequences. This scoping review highlighted aspects of this phenomenon that have been less studied qualitatively, namely, the experiences of care partners and nurses, patients with delirium superimposed on dementia, and potential variations in how delirium‐related distress is experienced over time, from acute care to transitional care to long‐term care.

Background: As transgender and gender diverse (TGD) people become increasingly visible, healthcare solutions in the United States have also expanded to meet their needs. As TGD people and their families pursue gender affirming care (GAC), they also seek support to navigate complex healthcare and insurance systems. With increased demand for GAC, virtual healthcare navigation services in the U.S. have developed tailored approaches to address gaps in systems for this population. Purpose: The purpose of this study was to qualitatively explore the role and influence of trained care coordinators (CCs) from a virtual navigation service in meeting commercially-insured TGD people’s GAC needs. Methods: We examined and analyzed redacted chat conversations between CCs from a virtual healthcare navigation service in the U.S. and members seeking assistance. Reflexive thematic analysis of the data set involved multiple rounds of coding and reflexive analytic processes to develop themes. Findings: We developed three intersecting themes: 1) Provide Dignified Experiences , 2) Promote Affirming Patient-Provider Relationships , and 3) Navigate Complex Insurance Systems . Sub-themes associated with each of the themes include: 1) Shared life experience; Exploring gender identity and GAC options in safe spaces; 2) Connections with vetted providers; 3) Access accurate information about insurance policies; Assistance with appeals process; and Obtaining letters of support. Discussion/Conclusion: Navigating U.S. healthcare and insurance systems presents unique challenges for TGD people. While challenges to accessing care are well documented, our findings suggest that healthcare navigation services supported by trained CCs substantively assist TGD patients overcome obstacles. Our findings revealed multiple levels at which the service provides benefits -- individual, interpersonal, and structural. These levels of influence have clinical and policy implications for improved care for TGD people. Interventions like tailored, virtual healthcare navigation services are scalable and should be evaluated for reach and magnitude of impact beyond commercially-insured populations.

Background: Communication failures in inpatient maternity care are one of the leading causes of preventable maternal mortality. Most maternal mortality occurs during the postpartum period after hospital discharge. Nurses provide most direct inpatient maternity care and are responsible for postpartum discharge teaching, which is a critical moment for communicating about the care plan, concerns, warning signs, and follow-up plans to the patient, who will likely not be seen by a health care practitioner for 6 weeks, if at all. Objective: The purpose of this study is to develop a deeper understanding of communication practices between nurses and first-time mothers during postpartum discharge teaching, including what supports or hinders the transfer of critical information and recommendations for improvement from the nurses and patients themselves. A secondary objective is to assess the acceptability, feasibility, and appropriateness of video-reflexive ethnography (VRE) as an intervention to improve care quality and processes. Methods: We are using a health equity–informed mixed methods study design to develop a deeper understanding of communication practices between nurses and patients during postpartum discharge teaching for first-time mothers, including determinants for optimal communication and recommendations for improvement. Qualitative data will come from VRE, which will take place in 3 rounds: round 1 comprises video recording of actual postpartum discharge teaching, round 2 comprises independent review of the recording by both nurses and mothers, and round 3 comprises group reflexivity sessions with nurse participants. The planned analyses include a qualitative descriptive analysis of the video recordings and qualitative content analyses of the transcripts of the independent review and group reflexivity sessions. Quantitative data will come from a survey of nurse respondents regarding the feasibility, acceptability, and appropriateness of using VRE to reflect on and improve their practice. Survey results and reflections on VRE from round 3 will be integrated into a joint display. Results: This project was funded in 2023 and approved by the Institutional Review Board of the University of Pennsylvania on December 6, 2023. Data collection will take place from 2024 to 2025. Results are expected to be published in 2026. Conclusions: Our work aims to engage with nurses and first-time mothers to identify opportunities to improve postpartum discharge teaching and communication. Secondarily, we plan to find out whether study participants find VRE feasible, acceptable, and appropriate for improving the quality of care and health care communication. International Registered Report Identifier (IRRID): DERR1-10.2196/72139

[This corrects the article DOI: 10.2196/47091.].

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

BACKGROUND Communication failures in inpatient maternity care are one of the leading causes of preventable maternal mortality. Most maternal mortality occurs during the postpartum period after hospital discharge. Nurses provide most direct inpatient maternity care and are responsible for postpartum discharge teaching, which is a critical moment for communicating about the care plan, concerns, warning signs, and follow-up plans to the patient, who will likely not be seen by a health care practitioner for 6 weeks, if at all. OBJECTIVE The purpose of this study is to develop a deeper understanding of communication practices between nurses and first-time mothers during postpartum discharge teaching, including what supports or hinders the transfer of critical information and recommendations for improvement from the nurses and patients themselves. A secondary objective is to assess the acceptability, feasibility, and appropriateness of video-reflexive ethnography (VRE) as an intervention to improve care quality and processes. METHODS We are using a health equity–informed mixed methods study design to develop a deeper understanding of communication practices between nurses and patients during postpartum discharge teaching for first-time mothers, including determinants for optimal communication and recommendations for improvement. Qualitative data will come from VRE, which will take place in 3 rounds: round 1 comprises video recording of actual postpartum discharge teaching, round 2 comprises independent review of the recording by both nurses and mothers, and round 3 comprises group reflexivity sessions with nurse participants. The planned analyses include a qualitative descriptive analysis of the video recordings and qualitative content analyses of the transcripts of the independent review and group reflexivity sessions. Quantitative data will come from a survey of nurse respondents regarding the feasibility, acceptability, and appropriateness of using VRE to reflect on and improve their practice. Survey results and reflections on VRE from round 3 will be integrated into a joint display. RESULTS This project was funded in 2023 and approved by the Institutional Review Board of the University of Pennsylvania on December 6, 2023. Data collection will take place from 2024 to 2025. Results are expected to be published in 2026. CONCLUSIONS Our work aims to engage with nurses and first-time mothers to identify opportunities to improve postpartum discharge teaching and communication. Secondarily, we plan to find out whether study participants find VRE feasible, acceptable, and appropriate for improving the quality of care and health care communication. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/72139

Background: While the significance of care navigation in facilitating access to health care within the lesbian, gay, bisexual, transgender, queer, and other (LGBTQ+) communities has been acknowledged, there is limited research examining how care navigation influences an individual’s ability to understand and access the care they need in real-world settings. By analyzing private sector data, we can bridge the gap between theoretical research findings and practical applications, ultimately informing both business strategies and public policy with evidence grounded in real-world efficacy. Objective: The objective of this study was to evaluate the impact of specialized virtual care navigation services on LGBTQ+ individuals’ ability to comprehend and access necessary care within a national cohort of commercially insured members. Methods: This case study is based on the experience of commercially insured members, aged 18 or older, who used the LGBTQ+ Health Care Navigation (LGBTQ+ Navigation) service by Included Health between January 26 and July 31, 2023. Care coordinators assisted members by connecting them with vetted identity-affirming in-network providers, helping them navigate and understand their LGBTQ+ health benefits, and providing education and advocacy for clinical and nonclinical needs. We examined the impact of navigation on 5 member-reported outcomes. In addition to reporting the proportion who agreed or strongly agreed, we calculated an impact score that averaged assigned numerical values to all 5 question responses (1=strongly disagree to 5=strongly agree) for each respondent. We used ANOVA with Tukey post hoc tests and t tests to explore the relationships between the impact score and member characteristics, including optional self-reported demographics. Results: Out of 4703 LGBTQ+ Navigation cases, 7.53% (n=354) had member-reported outcomes. A large majority of LGBTQ+ members agreed or strongly agreed that care navigation resulted in less stress (315/354, 89%), less care avoidance (305/354, 86.2%), higher confidence in finding an identity-affirming provider (327/354, 92.4%), improved ability to comprehend health care information (312/354, 88.1%), and improved ability to engage with providers (308/354, 87%). The average impact score was 4.44 (SD 0.69), with statistically significant differences by gender identity (P=.003), race (P=.01), ethnicity (P=.008), and pronouns (P=.02). The scores were highest for members with multiple gender identities (mean 4.56, SD 0.37), and members who did not provide their race, ethnicity, or their pronouns (mean 4.55, SD 0.64). Impact scores were lowest for transgender members (mean 4.11, SD 0.95). Conclusions: The LGBTQ+ Navigation service, by enhancing members’ comprehension and use of necessary care, demonstrates potential public health utility and value. Continuous evaluation of navigation services can serve as a supplementary tool for employers seeking to promote health equity and improve belonging among employees. This is particularly important as discrimination and stigma against LGBTQ+ communities persist in the United States. Therefore, scalable and system-level changes that use navigation services are essential to reach a larger proportion of the LGBTQ+ population.

Background: Web-based surveys increase access to study participation and improve opportunities to reach diverse populations. However, web-based surveys are vulnerable to data quality threats, including fraudulent entries from automated bots and duplicative submissions. Widely used proprietary tools to identify fraud offer little transparency about the methods used, effectiveness, or representativeness of resulting data sets. Robust, reproducible, and context-specific methods of accurately detecting fraudulent responses are needed to ensure integrity and maximize the value of web-based survey research. Objective: This study aims to describe a multilayered fraud detection system implemented in a large web-based survey about COVID-19 attitudes, beliefs, and behaviors; examine the agreement between this fraud detection system and a proprietary fraud detection system; and compare the resulting study samples from each of the 2 fraud detection methods. Methods: The PhillyCEAL Common Survey is a cross-sectional web-based survey that remotely enrolled residents ages 13 years and older to assess how the COVID-19 pandemic impacted individuals, neighborhoods, and communities in Philadelphia, Pennsylvania. Two fraud detection methods are described and compared: (1) a multilayer fraud detection strategy developed by the research team that combined automated validation of response data and real-time verification of study entries by study personnel and (2) the proprietary fraud detection system used by the Qualtrics (Qualtrics) survey platform. Descriptive statistics were computed for the full sample and for responses classified as valid by 2 different fraud detection methods, and classification tables were created to assess agreement between the methods. The impact of fraud detection methods on the distribution of vaccine confidence by racial or ethnic group was assessed. Results: Of 7950 completed surveys, our multilayer fraud detection system identified 3228 (40.60%) cases as valid, while the Qualtrics fraud detection system identified 4389 (55.21%) cases as valid. The 2 methods showed only “fair” or “minimal” agreement in their classifications (κ=0.25; 95% CI 0.23-0.27). The choice of fraud detection method impacted the distribution of vaccine confidence by racial or ethnic group. Conclusions: The selection of a fraud detection method can affect the study’s sample composition. The findings of this study, while not conclusive, suggest that a multilayered approach to fraud detection that includes conservative use of automated fraud detection and integration of human review of entries tailored to the study’s specific context and its participants may be warranted for future survey research.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Web-based surveys increase access to study participation and improve opportunities to reach diverse populations. However, web-based surveys are vulnerable to data quality threats, including fraudulent entries from automated bots and duplicative submissions. Widely used proprietary tools to identify fraud offer little transparency about the methods used, effectiveness, or representativeness of resulting data sets. Robust, reproducible, and context-specific methods of accurately detecting fraudulent responses are needed to ensure integrity and maximize the value of web-based survey research. Objective: This study aims to describe a multilayered fraud detection system implemented in a large web-based survey about COVID-19 attitudes, beliefs, and behaviors; examine the agreement between this fraud detection system and a proprietary fraud detection system; and compare the resulting study samples from each of the 2 fraud detection methods. Methods: The PhillyCEAL Common Survey is a cross-sectional web-based survey that remotely enrolled residents ages 13 years and older to assess how the COVID-19 pandemic impacted individuals, neighborhoods, and communities in Philadelphia, Pennsylvania. Two fraud detection methods are described and compared: (1) a multilayer fraud detection strategy developed by the research team that combined automated validation of response data and real-time verification of study entries by study personnel and (2) the proprietary fraud detection system used by the Qualtrics (Qualtrics) survey platform. Descriptive statistics were computed for the full sample and for responses classified as valid by 2 different fraud detection methods, and classification tables were created to assess agreement between the methods. The impact of fraud detection methods on the distribution of vaccine confidence by racial or ethnic group was assessed. Results: Of 7950 completed surveys, our multilayer fraud detection system identified 3228 (40.60%) cases as valid, while the Qualtrics fraud detection system identified 4389 (55.21%) cases as valid. The 2 methods showed only “fair” or “minimal” agreement in their classifications (κ=0.25; 95% CI 0.23-0.27). The choice of fraud detection method impacted the distribution of vaccine confidence by racial or ethnic group. Conclusions: The selection of a fraud detection method can affect the study’s sample composition. The findings of this study, while not conclusive, suggest that a multilayered approach to fraud detection that includes conservative use of automated fraud detection and integration of human review of entries tailored to the study’s specific context and its participants may be warranted for future survey research.