Using longitudinal qualitative research to understand the experiences of minoritized people.

This paper demonstrates how Longitudinal Qualitative Research (LQR) is an innovative method to understand the lived experiences of members of minoritized groups when temporality is a structuring element of their experiences. Most qualitative research in psychology is cross-sectional, which limits our understanding of individuals whose experiences are context-dependent and linked to the temporal norms of specific social environments. LQR is unique for allowing researchers to compare change and stability over time and reveal how social challenges and barriers impact perspective shifts and long-term decision-making. To demonstrate the usefulness of LQR as an inclusive methodology, we discuss an ongoing study of career decision-making among a diverse cohort of biomedical scientists. We have used annual interviews to follow biomedical science trainees from the beginning of their PhD into the initial stages of their careers. We present case studies of minoritized scientists to illustrate the methods for long-term engagement used to elicit sensitive and critical information during their training. We show how LQR is a viable methodology for a variety of research questions and can be accomplished using large or small sample sizes and limited resources. Our primary goal is to show how LQR is useful to understand the experiences of minoritized individuals in contexts that have historically excluded them.

Patient Perspectives on the Drivers and Deterrents of Antibiotic Treatment of Acute Rhinosinusitis: a Qualitative Study.

BACKGROUND: Antibiotics are prescribed in >80% of outpatient acute rhinosinusitis (ARS) visits, despite the low incidence of bacterial infection. Previous studies have shown patient expectations are the most robust predictor of antibiotics prescription in ARS. However, patient perceptions are not well known or understood. OBJECTIVE: To understand patient perceptions regarding what drives or deters them from wanting, seeking, and taking antibiotic treatment of ARS. DESIGN: Iterative thematic analysis of semi-structured interviews. PARTICIPANTS: Nineteen adults diagnosed with ARS within the prior 60 days at the Northwestern Medicine General Internal Medicine clinic in Chicago, IL. MAIN MEASURES: Perceptions of patients with ARS. KEY RESULTS: We interviewed 19 patients, identifying the following drivers of antibiotic use: (1) symptoms, especially discolored rhinorrhea, and seeking relief, (2) belief that antibiotics are a convenient and/or effective way to relieve/cure sinusitis, and (3) desire for tangible outcomes of a clinic visit. For deterrents, the following themes emerged: (1) concern about antibiotic resistance, (2) preference for other treatments or preference to avoid medications, and (3) desire to avoid a healthcare visit. Patients identified that a trustworthy physician's recommendation for antibiotics was a driver, and a recommendation against antibiotics was a deterrent to taking antibiotics; a delayed antibiotic prescription also served as a deterrent. Antibiotic side effects were viewed neutrally by most participants, though they were a deterrent to some. CONCLUSIONS: Patients have misconceptions about the indications and effectiveness of antibiotics for ARS. Intimate knowledge of key antibiotic drivers and deterrents, from the perspective of patients with ARS, can be leveraged to engage and increase patients' knowledge, and set appropriate expectations for antibiotics for ARS.

Effects of Longitudinal Coaching on Relationships and Feedback Processes in Pediatric Subspecialty Fellowships-An Interpretive Description Study.

Background: Coaching in graduate medical education provides a facilitative approach to feedback as well as opportunities for residents and fellows to engage with feedback and develop individualized improvement goals. Objective: To explore the roles and actions of successful coaches in longitudinal coaching relationships and how they enable feedback processes. Methods: Using interpretive description methodology, we performed semi-structured interviews with pediatrics fellows (n=11), faculty coaches (n=9), and program directors (n=2) from 2 pediatric subspecialty fellowship training programs at Ann and Robert H. Lurie Children's Hospital of Chicago. Both training programs had previously implemented longitudinal clinical coaching programs. Interview questions aimed to explore the roles and impacts of coaches within a longitudinal coaching program. Interviews took place in 2019 and 2020. Results: We identified 4 major actions to the coaching role in longitudinal coaching relationships: (1) establish the coach-fellow relationship; (2) prepare for the coaching conversation; (3) facilitate feedback dialogue; and (4) serve as the go-to person to raise uncomfortable issues. Additionally, nearly all participants expressed support for a longitudinal coaching program to support fellows' growth and development of personalized learning goals. Conclusions: By fulfilling these 4 key aspects to the coaching role, coaches in longitudinal relationships with coachees enable feedback processes.

"There's so much to be done": a qualitative study to elucidate research priorities in childhood-onset systemic lupus erythematosus.

OBJECTIVE: There is a pressing need for high-quality, comprehensive research to describe the natural history, best treatments, access to care and disparities in care for patients with childhood-onset SLE (cSLE). Building on a previously published survey study of cSLE clinicians and researchers to describe research priorities in cSLE, the primary objective of this study was to conduct expert interviews to define high-priority areas for cSLE research. METHODS: Individuals with identified multidisciplinary expertise in cSLE were recruited worldwide using purposive sampling technique. Experts participated in open-ended, semistructured qualitative interviews. Interviews were designed to elicit expert perspectives on research priorities, optimal research approaches, and factors that facilitate and hinder advancing cSLE research. Interviews were digitally recorded, transcribed and de-identified for analysis. Analysis for underlying themes of cSLE expert perspectives was performed using a constant comparative approach. RESULTS: Twenty-nine experts with diverse clinical and research backgrounds participated. Themes emerged within five domains: (1) expanding disease knowledge; (2) investigator collaboration; (3) partnering with patients and families; (4) improving care to optimise research; and (5) overcoming investigator barriers. Choosing a singular area of focus was difficult; experts identified many competing priorities. Despite the numerous priorities that emerged, experts described several existing and potential opportunities for advancing cSLE research. CONCLUSIONS: In addition to the priorities identified by cSLE experts in this study, the opportunities for advancing cSLE research and care that were proposed should be used as a foundation for creation of a cSLE research agenda for both research and funding allocation.

Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis.

OBJECTIVE: To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess preferences for emotional health screening and interventions. METHODS: Parents of children and young adults with JM were purposively sampled for participation in focus groups at the Cure JM Foundation National Family Conference in 2018. Groups were stratified by patient age group (6-12, 13-17, and 18-21 years), and conversations were audiorecorded, transcribed verbatim, and co-coded via content analysis, with subanalysis by age group. A brief survey assessed preferences for specific emotional health interventions. RESULTS: Forty-five parents participated in 6 focus groups. Themes emerged within 2 domains: emotional challenges, and screening and interventions. Themes for emotional challenges comprised the impact of JM on: 1) patient emotional health, particularly depression and anxiety; 2) parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and 3) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, but the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, the facilitator role of rheumatology providers, and preferred intervention modalities of online and in-person resources, with survey responses most strongly supporting child/parent counseling and peer support groups. CONCLUSION: JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.

The National Longitudinal Study of Young Life Scientists: Career differentiation among a diverse group of biomedical PhD students.

Young biomedical PhD scientists are needed in a wide variety of careers. Many recent efforts have been focused on revising training approaches to help them choose and prepare for different careers. However, very little is known about how biomedical PhD students decide on and "differentiate" into careers, which limits the development of new training models. This knowledge gap also severely limits efforts to increase the representation of women and some racial/ethnic groups in academic research careers. Previous studies have used cross-sectional surveys of career interests and ratings, and have not been designed to identify career intentions. They also are limited by single-time data and response bias, having typically asked participants to recount decisions made years in the past. This report draws on annual, in-depth interviews with 147 biomedical PhD students from the start of the PhD to graduation. Qualitative content analysis methods were used to fully understand scientific development and career intentions over time. Longitudinal analysis reveals a striking level of fluidity and complexity in career intentions over time. Contrary to previous studies and the dominant narrative, data do not show generalized shifts away from academic careers. In addition to those who are consistent in this intention from the start, nearly as many students shift toward research academic careers as away from them, and only modest differences exist by gender and race/ethnicity. Thus, the dominant narrative misses the high fraction of individuals who acquire or sustain their intention to purse an academic research career during training. Efforts to increase diversity in academia must capitalize on and support those who are still considering and evolve toward an academic career. Efforts to revise research training should incorporate knowledge of the tremendous fluidity in when and how career differentiation occurs.

Internship Experiences Contribute to Confident Career Decision Making for Doctoral Students in the Life Sciences.

The Graduate Student Internships for Career Exploration (GSICE) program at the University of California, San Francisco (UCSF), offers structured training and hands-on experience through internships for a broad range of PhD-level careers. The GSICE program model was successfully replicated at the University of California, Davis (UC Davis). Here, we present outcome data for a total of 217 PhD students participating in the UCSF and UC Davis programs from 2010 to 2015 and 2014 to 2015, respectively. The internship programs at the two sites demonstrated comparable participation, internship completion rates, and overall outcomes. Using survey, focus group, and individual interview data, we find that the programs provide students with career development skills, while increasing students' confidence in career exploration and decision making. Internships, in particular, were perceived by students to increase their ability to discern a career area of choice and to increase confidence in pursuing that career. We present data showing that program participation does not change median time to degree and may help some trainees avoid "default postdocs." Our findings suggest important strategies for institutions developing internship programs for PhD students, namely: including a structured training component, allowing postgraduation internships, and providing a central organization point for internship programs.