A qualitative study on opportunities to improve research engagement and inclusion of Black adults with systemic lupus erythematosus.

In response to racial inequities in systemic lupus erythematosus (SLE), we aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research. We used a qualitative, interpretive description approach and recruited 30 Black adults diagnosed with SLE in Michigan to participate in semi-structured interviews. Theme development focused on what factors influenced research perceptions and how research did not meet participant needs and expectations. We developed five main themes: (1) Ethical and equitable research. Participants shared how the impacts of past and present-day racism impacted their willingness to participate in research. (2) Trusting researchers to conduct studies and translate findings to health care. Participants had concerns related to researcher intentions and expressed the importance of communicating research outcomes to participants and translating findings to health care. (3) Drug trial beneficence. When considering drug trials, several people did not consider the potential benefits worth the risk of side effects, and some said they would need to consult with their doctor before agreeing to participate. (4) Altruism. Participants explained how the desire to help others was a motivating factor for participating in research and donating biological samples. (5) Research priorities. Participants described a need for better treatments that value their overall health and well-being. Findings indicate that researchers can center the perspectives of Black people with SLE across the research life cycle-beyond a focus on adequate racial diversity among study participants.

"There is a lot of shame that comes with this": A qualitative study of patient experiences of isolation, embarrassment, and stigma associated with overactive bladder.

AIMS: Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system. METHODS: A total of 20 patients and 12 physicians completed a questionnaire and semi-structured interview. The interview guide, developed in an iterative fashion by the authors, included questions about treatment decision making as well as experiences living with or treating OAB; this manuscript focuses on the questions probing lived experiences and interactions between patients and physicians. The interviews were recorded, transcribed and inductively coded and analyzed according to the principles of interpretive description to develop themes. RESULTS: Analysis of patient and physician interviews yielded five key themes: isolation due to OAB diagnosis, social stigma associated with noticeable OAB symptoms, embarrassment from interactions with the health care system, feeling invalidated and dismissed by physicians, and OAB patients as a "vulnerable" population with "desperation" for cure. CONCLUSIONS: OAB causes patients marked distress beyond their physical symptoms; it causes feelings of isolation from friends and family and makes them feel embarrassed to discuss their condition with loved ones and physicians alike. Efforts to destigmatize OAB, validate patient experiences, and improve access to OAB care may help diminish the psychosocial burden of OAB.

Patient and physician decision-making dynamics in overactive bladder care: A mixed methods study.

AIMS: Overactive bladder management includes multiple therapeutic options with comparable efficacy but a range of administration modalities and side effects, creating an ideal setting for shared decision-making. This study investigates patient and physician health beliefs surrounding decision-making and expectations for overactive bladder with the aim of better understanding and ultimately improving decision-making in overactive bladder care. METHODS: Patient and physician participants completed a questionnaire followed by a semi-structured interview to assess health beliefs surrounding decision making and expectations for overactive bladder treatment. The semi-structured interview guide, developed in an iterative fashion by the authors, probed qualities of overactive bladder therapies patients and physicians valued, their process of treatment selection, and their experiences with therapies. RESULTS: Patients (n = 20) frequently cited treatment invasiveness, efficacy, and safety as the most important qualities that influenced their decision when selecting overactive bladder therapy. Physicians (n = 12) frequently cited safety/contraindications, convenience, cost/insurance, and patient preference as the most important qualities. In our integration analysis, we identified four key themes associated with decision making in overactive bladder care: frustration with inaccessibility of overactive bladder treatments, discordant perception of patient education, diverging acceptability of expected outcomes, and lack of insight into other parties' decisional priorities and control preferences. CONCLUSIONS: While both patients and physicians desire to engage in a shared decision-making process when selecting therapies for overactive bladder, this process is challenged by significant divergence between patient and physician viewpoint across key domains.

Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis.

INTRODUCTION: Acute severe ulcerative colitis (ASUC) is a life-treating presentation of ulcerative colitis (UC) that requires prompt initiation of treatment to avoid complication. Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC. METHODS: A qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24 h of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach. RESULTS: Thirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: (1) the pervasive impact of UC on QoL and mental health, (2) challenges associated with navigating uncertainty, (3) prioritizing colon preservation, (4) bridging the divide between outpatient expectations and inpatient realities, and (5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations. CONCLUSION: Five key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care.

'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID.

AIMS AND OBJECTIVES: In this study, we aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among Black American adults. BACKGROUND: As a novel condition, qualitative evidence concerning long COVID symptoms and their impact on quality of life can inform the refinement of diagnostic criteria and care plans. However, the underrepresentation of Black Americans in long COVID research is a barrier to achieving equitable care for all long COVID patients. DESIGN: We employed an interpretive description study design. METHODS: We recruited a convenience sample of 15 Black American adults with long COVID. We analysed the anonymized transcripts from race-concordant, semi-structured interviews using an inductive, thematic analysis approach. We followed the SRQR reporting guidelines. RESULTS: We identified four themes: (1) The impact of long COVID symptoms on personal identity and pre-existing conditions; (2) Self-management strategies for long COVID symptoms; (3) Social determinants of health and symptom management; and (4) Effects on interpersonal relationships. CONCLUSION: Findings demonstrate the comprehensive ramifications of long COVID on the lives of Black American adults. Results also articulate how pre-existing conditions, social risk factors, distrust due to systemic racism, and the nature of interpersonal relationships can complicate symptom management. RELEVANCE TO CLINICAL PRACTICE: Care approaches that support access to and implementation of integrative therapies may be best suited to meet the needs of long COVID patients. Clinicians should also prioritize eliminating patient exposure to discrimination, implicit bias, and microaggressions. This is of particular concern for long COVID patients who have symptoms that are difficult to objectively quantify, such as pain and fatigue. NO PATIENT OR PUBLIC CONTRIBUTION: While patient perspectives and experiences were the focus of this study, patients were not involved with the design or conduct of the study, data analysis or interpretation, or writing the manuscript.

Preferences and experiences of pediatricians on implementing national guidelines on universal routine screening of adolescents for major depressive disorder: A qualitative study.

BACKGROUND: To explore the preferences of pediatricians for key factors around the implementation of universal routine screening guidelines for major depressive disorder in adolescent patients in a primary care setting. METHOD: Semi-structured qualitative interviews were conducted with U.S. pediatricians. Participants were recruited by convenience sampling and snowball sampling. Qualitive data were summarized using thematic analysis to identify themes relevant to preferences around implementing screening strategies for adolescent patients. Recruitment ended upon reaching thematic saturation when no new themes were revealed. RESULTS: Of the 14 participants, 11 identified as female, 3 male, 10 white, and 4 Asian. Top themes among pediatrician participants were around the screening modality (14/14 participants), screening validity (14/14), time barriers (14/14), and confidentiality barriers (12/14). Less frequently mentioned themes by pediatricians were workplace coordination and logistics (7/14), alternative starting ages for screening (7/14), more frequent screenings than annual screenings (3/14), and additional clinical training regarding depression diagnosis and treatment (2/14). LIMITATIONS: Pool of interviewed participants was limited by diversity in terms of geography, race/ethnicity, or practice settings. CONCLUSIONS: To promote the uptake of universal routine screening of adolescent major depression, pediatricians expressed it was important to address key implementation factors regarding the screening modality, screening validity, time constraints, and confidential care concerns in a primary care delivery context. Findings could be used to inform the development of implementation strategies to facilitate depression screening in primary care. Future research is needed to quantitively assess decisions and tradeoffs that pediatricians make when implementing universal screening to support adolescent mental health.

Vaccine perceptions among Black adults with long COVID.

OBJECTIVES: Low uptake of COVID vaccines within Black communities is a concern given the stark racial inequities associated with the pandemic. Prior research details COVID vaccine perceptions within the general population and Black communities specifically. However, Black individuals with long COVID may be more or less receptive to future COVID vaccination than their peers without long COVID. The impact of COVID vaccination on long COVID symptoms is still controversial, since some studies suggest that vaccination can improve long COVID symptoms, whereas other studies report no significant change in symptoms or a worsening of symptoms. In this study, we aimed to characterize the factors influencing perceptions of COVID vaccines among Black adults with long COVID to inform future vaccine-related policies and interventions. DESIGN: We conducted 15 semi-structured, race-concordant interviews over Zoom with adults who reported physical or mental health symptoms that lingered for a month or more after acute COVID infection. We transcribed and anonymized the interviews and implemented inductive, thematic analysis to identify factors influencing COVID vaccine perceptions and the vaccine decision-making process. RESULTS: We identified five themes that influenced vaccine perceptions: (1) Vaccine safety and efficacy; (2) Social implications of vaccination status; (3) Navigating and interpreting vaccine-related information; (4) Possibility of abuse and exploitation by the government and scientific community; and (5) Long COVID status. Safety concerns were amplified by long COVID status and mistrust in social systems due to mistreatment of the Black community. CONCLUSIONS: Among the factors influencing COVID vaccine perceptions, participants reported a desire to avoid reinfection and a negative immune response. As COVID reinfection and long COVID become more common, achieving adequate uptake of COVID vaccines and boosters may require approaches that are tailored in partnership with the long COVID patient community.

Continuous Glucose Monitoring With Low-Carbohydrate Nutritional Coaching to Improve Type 2 Diabetes Control: Randomized Quality Improvement Program.

BACKGROUND: Type 2 diabetes mellitus (T2DM) is a leading cause of morbidity and mortality globally, with adverse health consequences largely related to hyperglycemia. Despite clinical practice guideline recommendations, effective pharmacotherapy, and interventions to support patients and providers, up to 60% of patients diagnosed with T2DM are estimated to have hemoglobin A1c (HbA1c) levels above the recommended targets owing to multilevel barriers hindering optimal glycemic control. OBJECTIVE: The aim of this study is to compare changes in HbA1c levels among patients with suboptimally controlled T2DM who were offered the opportunity to use an intermittently viewed continuous glucose monitor and receive personalized low-carbohydrate nutrition counseling (<100 g/day) versus those who received usual care (UC). METHODS: This was a 12-month, pragmatic, randomized quality improvement program. All adult patients with T2DM who received primary care at a university-affiliated primary care clinic (N=1584) were randomized to either the UC or the enhanced care (EC) group. Within each program arm, we identified individuals with HbA1c >7.5% (58 mmol/mol) who were medically eligible for tighter glycemic control, and we defined these subgroups as UC-high risk (UC-HR) or EC-HR. UC-HR participants (n=197) received routine primary care. EC-HR participants (n=185) were invited to use an intermittently viewed continuous glucose monitor and receive low-carbohydrate nutrition counseling. The primary outcome was mean change in HbA1c levels from baseline to 12 months using an intention-to-treat difference-in-differences analysis comparing EC-HR with UC-HR groups. We conducted follow-up semistructured interviews to understand EC-HR participant experiences with the intervention. RESULTS: HbA1c decreased by 0.41% (4.5 mmol/mol; P=.04) more from baseline to 12 months among participants in the EC-HR group than among those in UC-HR; however, only 61 (32.9%) of 185 EC-HR participants engaged in the program. Among the EC-HR participants who wore continuous glucose monitors (61/185, 32.9%), HbA1c was 1.1% lower at 12 months compared with baseline (P<.001). Interviews revealed themes related to EC-HR participants' program engagement and continuous glucose monitor use. CONCLUSIONS: Among patients with suboptimally controlled T2DM, a combined approach that includes continuous glucose monitoring and low-carbohydrate nutrition counseling can improve glycemic control compared with the standard of care.

A theoretical model of contraceptive decision-making and behaviour in diabetes: A qualitative application of the Health Belief Model.

AIM: People with diabetes have contraceptive needs that have been inadequately addressed. The aim of this qualitative study was to develop a theoretical model that reflects contraceptive decision-making and behaviour in the setting of diabetes mellitus. METHODS: We conducted semi-structured, qualitative interviews of 17 women with type 1 or type 2 diabetes from Michigan, USA. Participants were recruited from a diabetes registry and local clinics. We adapted domains from the Health Belief Model (HBM) and applied reproductive justice principles to inform the qualitative data collection and analysis. Using an iterative coding template, we advanced from descriptive to theoretical codes, compared codes across characteristics of interest (e.g. diabetes type), and synthesized the theoretical codes and their relationships in an explanatory model. RESULTS: The final model included the following constructs and themes: perceived barriers and benefits to contraceptive use (effects on blood sugar, risk of diabetes-related complications, improved quality of life); perceived seriousness of pregnancy (harm to self, harm to foetus or baby); perceived susceptibility to pregnancy risks (diabetes is a 'high risk' state); external cues to action (one-size-fits-all/anxiety-provoking counselling vs. personalized/trust-based counselling); internal cues to action (self-perceived 'sickness'); self-efficacy (reproductive self-efficacy, contraceptive self-efficacy); and modifying factors (perceptions of biased counselling based upon one's age, race or severity of disease). CONCLUSIONS: This novel adaptation of the HBM highlights the need for condition-specific and person-centred contraceptive counselling for those with diabetes.

Implementation of Health-Related Social Needs Screening at Michigan Health Centers: A Qualitative Study.

PURPOSE: Federally qualified health centers (FQHCs) are leaders in screening for and addressing patient's health-related social needs but variation exists in screening practices. This variation is relatively unexplored, particularly the influences of organizational and state policies. We employed a qualitative descriptive approach to study social needs screening practices at Michigan FQHCs to characterize screening processes and identify drivers of variation in screening implementation. METHODS: Site visits and semistructured interviews were conducted from October 2016 through March 2017, to explore implementation of social needs screening in clinical practice. Five FQHCs were selected through maximum variation sampling. Within each site, snowball sampling identified care team members highly knowledgeable about social needs screening. We conducted 4 to 5 interviews per site. Transcripts were analyzed using a thematic approach. RESULTS: We interviewed 23 participants from 5 sites; these sites varied by geography, age distribution, and race/ethnicity. We identified 4 themes: (1) statewide initiatives and local leadership drove variation in screening practices; (2) as community health workers (CHWs) played an integral role in identifying patients' needs, their roles often shifted from that of screener to implementer; (3) social needs screening data was variably integrated into electronic health records and infrequently used for population health management; and (4) sites experienced barriers to social needs screening that limited the perceived impact and sustainability. CONCLUSIONS: FQHCs placed value on the role of CHWs, on sustainable initiatives, and on funding to support continued social needs screening in primary care settings.

Implementation of a Hearing Loss Screening Intervention in Primary Care.

PURPOSE: Hearing loss (HL) is underdiagnosed and often unaddressed. A recent study of screening for HL using an electronic prompt showed efficacy in increasing appropriate referrals for subsequent testing. We build on the results of this study using a qualitative lens to explore implementation processes through the perspectives of family medicine clinicians. METHODS: We collected clinic observations and semistructured interviews of family medicine clinicians and residents who interacted with the HL prompt. All data were analyzed using thematic, framework, and mixed methods integration strategies. RESULTS: We interviewed 27 clinicians and conducted 10 observations. Thematic analysis resulted in 6 themes: (1) the prompt was overwhelmingly viewed as easy, simple to use, accurate; (2) clinicians considered prompt as an effective way to increase awareness and conversations with patients about HL; (3) clinician and staff buy-in played a vital role in implementation; (4) clinicians prioritized prompt during annual visits; (5) medical assistant involvement in prompt workflow varied by health system, clinic, and clinician; (6) prompt resulted in more conversations about HL, but uncertain impact on patient outcomes. Themes are presented alongside constructs of normalization process theory and intervention outcomes. CONCLUSION: Integration of a HL screening prompt into clinical practice varied by clinician buy-in and beliefs about the impact on patient outcomes, involvement of medical assistants, and prioritization during clinical visits. Further research is needed to understand how to leverage clinician and staff buy-in and whether implementation of a new clinical prompt has sustained impact on HL screening and patient outcomes.

Impact of the Guided Self-Determination Intervention among Adolescents with Co-Existing ADHD and Medical Disorder: A Mixed Methods Study.

Adolescents with ADHD are at increased risk of having a co-existing medical disorder. Research shows that having co-existing ADHD and a medical disorder interferes with the adolescents' daily life, creating a dual task that cannot be managed as two independent disorders. Interventions to support adolescents in managing the dual task of living with co-existing ADHD and medical disorder are needed. The Guided-Self-Determination intervention might be suitable for this population, as it is an empowerment-based intervention facilitating patient involvement and self-management of a disease. The purpose of this study was to evaluate how the Guided Self-Determination intervention impacted 10 adolescents with ADHD and a co-existing medical disorder. The study used a convergent mixed methods design. Quantitative data measuring support from nurses, support from parents, and self-management were collected though self-reported questionnaires at baseline, 3 months, and 6 months and were analyzed with descriptive statistics. Qualitative data capturing the adolescents' experiences of the intervention and the intervention's impact on support from nurses, parents, and self-management were collected through semi-structured interviews and analyzed thematically. Results of the quantitative and qualitative analyses were integrated in a mixed methods analysis. The integrated results suggest that this intervention may improve adolescents' management of the difficulties of living with co-existing ADHD and a medical disorder, and that self-insight and nurse support are prerequisites for developing self-management strategies. However, the results showed that the intervention did not impact parental support. Further research is needed to evaluate the impact of the intervention on a larger scale.

The Opportunity of Social Ecological Resilience in the Promotion of Youth Health and Wellbeing: A Narrative Review.

Youth experience adversity that increases their risk for immediate and long-term health consequences. Resilience has traditionally been conceptualized as an internal disposition or trait that supports youth to overcome that risk and avoid the negative impact on their health and wellbeing. However, this model of resilience overemphasizes the role of the individual and their capacity to control their environment, while minimizing the integral role of relational, social, structural, and cultural contexts in which they live. Instead, social ecological resilience (SER) emphasizes the influence of social and environmental factors on individual processes and outcomes and offers different pathways for preventive interventions to promote youth health and wellbeing. Within preventive medicine, it is important for researchers and practitioners to understand the processes that support or impede SER, particularly in youth when adversity can impact health throughout the lifespan. The purpose of this review was to examine the contributions and scope of the SER model in research on youth, with the goal of advancing SER-informed research and interventions within preventive medicine. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) approach as a guiding framework, we conducted a narrative review of the literature. The review characterizes 37 existing studies across the fields of education, psychology, and social work in terms of topic, focal population, methods, use of SER, and implications. We conclude with recommendations for future applications of SER to promote the health and wellbeing of youth.

Youth Perspectives of Prescription Pain Medication in the Opioid Crisis.

OBJECTIVE: To characterize current youth perspectives of prescription pain medication. STUDY DESIGN: In total, 1047 youths aged 14-24 years were recruited by targeted social media advertisements to match national demographic benchmarks. Youths were queried by open-ended text message prompts about exposure and access to prescription pain medication, perceived safety of prescribed and nonprescribed medication, and associations with the word "opioid." Responses were analyzed inductively for emerging themes and frequencies. RESULTS: Among 745 respondents (71.2% response rate), 439 identified as female (59.3%), 561 as white (75.8%), and mean age was 18.3 ± 3.2 years. Previous exposure to prescription pain medication was reported by 377 respondents (52.0%), most commonly related to dentistry (32.8%), surgery (19.2%), and injury (12.0%). Nonmedical sources of access to prescription pain medication were identified by 256 respondents (36.9%) and medical sources other than their doctor by an additional 111 respondents (16.0%). Three additional themes emerged from youth responses: (1) prescribed medication was thought to be safer than nonprescribed medication, based on trust in doctors; (2) risks of addiction and overdose were thought to be greater for nonprescribed medication; (3) respondents had a widely ranging understanding of the word "opioid," from historical to current events, medical to illicit substances, and personal to public associations. CONCLUSIONS: Although youths are aware of the opioid crisis, they perceive less risk of prescription pain medication prescribed by a doctor, than from other sources. Policies should target education to youth in clinical and nonclinical settings, highlighting the risks of addiction and overdose with all opioids.

Effective Hearing Loss Screening in Primary Care: The Early Auditory Referral-Primary Care Study.

PURPOSE: Hearing loss, the second most common disability in the United States, is under-diagnosed and under-treated. Identifying it in early stages could prevent its known substantial adverse outcomes. METHODS: A multiple baseline design was implemented to assess a screening paradigm for identifying and referring patients aged ≥55 years with hearing loss at 10 family medicine clinics in 2 health systems. Patients completed a consent form and the Hearing Handicap Inventory for the Elderly (HHI). An electronic alert prompted clinicians to screen for hearing loss during visits. RESULTS: The 14,877 eligible patients during the study period had 36,701 encounters. Referral rates in the family medicine clinics increased from a baseline rate of 3.2% to 14.4% in 1 health system and from a baseline rate of 0.7% to 4.7% in the other. A general medicine comparison group showed referral rate increase from the 3.0% baseline rate to 3.3%. Of the 5,883 study patients who completed the HHI 25.2% (n=1,484) had HHI scores suggestive of hearing loss; those patients had higher referral rates, 28% vs 9.2% (P <.001). Of 1,660 patients referred for hearing testing, 717 had audiology data available for analysis: 669 (93.3%) were rated appropriately referred and 421 (58.7%) were considered hearing aid candidates. Overall, 71.5% of patients contacted felt their referral was appropriate. CONCLUSION: An electronic alert used to remind clinicians to ask patients aged ≥55 years about hearing loss significantly increased audiology referrals for at-risk patients. Audiologic and audiogram data support the effectiveness of the prompt. Clinicians should consider adopting this method to identify patients with hearing loss to reduce its known and adverse sequelae.

Perceptions and experiences of living with type 1 diabetes among Latino adolescents and parents with limited English proficiency.

We explored perceptions and experiences of living with type 1 diabetes mellitus (T1DM) among U.S. Latino adolescents (age 12-19 years) with T1DM and parents with limited English proficiency. We used a qualitative descriptive approach with semi-structured interviews of adolescents together with their parents. Interview data were reviewed, coded, and combined into themes about participant experiences with T1DM. Twenty-four adolescents (mean age: 15.4 years) and 23 parents participated. Analysis resulted in three themes: (a) Understanding and adapting to T1DM (i.e., initial fear and misunderstandings of T1DM; adolescents' reflections on living with a chronic health condition); (b) Coming to terms with social and environmental influences on T1DM self-management (i.e., T1DM as disruptive to school and social activities; dealing with stigma and judgments related to diabetes); and, (c) Integrating T1DM self-management expectations with components of Latino cultures (i.e., orientation toward family well-being; parent concerns about cultural preferences that influence food choices, positive influence of spirituality and religiousness; parental views of their current health care in comparison to that available in their place of birth). Adolescents and their parents reported experiences that are universal to adolescents with T1DM in addition to challenges that are unique to Latinos. Efforts aimed at improving T1DM self-management during adolescence with this population need to be tailored to meet the unique social and cultural contexts and delivered in a culturally and linguistically congruent manner.

Confidentiality in the Doctor-Patient Relationship: Perspectives of Youth Ages 14-24 Years.

OBJECTIVE: To describe the experiences of youth regarding confidentiality with their healthcare provider and how confidentiality affects their interactions with the healthcare system. STUDY DESIGN: Using MyVoice, a national mixed methods text message poll, 4 qualitative probes were asked to 1268 youth age 14-24 years from July 2017 through December 2017. Respondents were asked about their opinions and experiences with confidentiality in their healthcare. Data were analyzed using a modified grounded theory approach. RESULTS: The overall response rate was 75% (n = 948) with a mean age of 18.6 years (SD = 3.2). Respondents were mostly female (56%) and white (70%) with 44% reporting some college education or greater. Qualitative analysis revealed that the majority of youth have not had a conversation with their provider about confidentiality; many youth think all care should be confidential; youth worry about privacy and future discrimination; and youth may lie about their risk behaviors or not seek healthcare when concerned about confidentiality. CONCLUSIONS: Confidentiality in healthcare is concerning to many youth and affects how they interact with the healthcare system. It is imperative for healthcare providers to discuss confidentiality while building trusting relationships with each youth to provide the highest level of care for this vulnerable population.

Augmenting Qualitative Text Analysis with Natural Language Processing: Methodological Study.

BACKGROUND: Qualitative research methods are increasingly being used across disciplines because of their ability to help investigators understand the perspectives of participants in their own words. However, qualitative analysis is a laborious and resource-intensive process. To achieve depth, researchers are limited to smaller sample sizes when analyzing text data. One potential method to address this concern is natural language processing (NLP). Qualitative text analysis involves researchers reading data, assigning code labels, and iteratively developing findings; NLP has the potential to automate part of this process. Unfortunately, little methodological research has been done to compare automatic coding using NLP techniques and qualitative coding, which is critical to establish the viability of NLP as a useful, rigorous analysis procedure. OBJECTIVE: The purpose of this study was to compare the utility of a traditional qualitative text analysis, an NLP analysis, and an augmented approach that combines qualitative and NLP methods. METHODS: We conducted a 2-arm cross-over experiment to compare qualitative and NLP approaches to analyze data generated through 2 text (short message service) message survey questions, one about prescription drugs and the other about police interactions, sent to youth aged 14-24 years. We randomly assigned a question to each of the 2 experienced qualitative analysis teams for independent coding and analysis before receiving NLP results. A third team separately conducted NLP analysis of the same 2 questions. We examined the results of our analyses to compare (1) the similarity of findings derived, (2) the quality of inferences generated, and (3) the time spent in analysis. RESULTS: The qualitative-only analysis for the drug question (n=58) yielded 4 major findings, whereas the NLP analysis yielded 3 findings that missed contextual elements. The qualitative and NLP-augmented analysis was the most comprehensive. For the police question (n=68), the qualitative-only analysis yielded 4 primary findings and the NLP-only analysis yielded 4 slightly different findings. Again, the augmented qualitative and NLP analysis was the most comprehensive and produced the highest quality inferences, increasing our depth of understanding (ie, details and frequencies). In terms of time, the NLP-only approach was quicker than the qualitative-only approach for the drug (120 vs 270 minutes) and police (40 vs 270 minutes) questions. An approach beginning with qualitative analysis followed by qualitative- or NLP-augmented analysis took longer time than that beginning with NLP for both drug (450 vs 240 minutes) and police (390 vs 220 minutes) questions. CONCLUSIONS: NLP provides both a foundation to code qualitatively more quickly and a method to validate qualitative findings. NLP methods were able to identify major themes found with traditional qualitative analysis but were not useful in identifying nuances. Traditional qualitative text analysis added important details and context.

Integrating Transformative Considerations and Quantitative Results through a Participant Selection Joint Display in Explanatory Sequential Mixed Methods Studies.

Integrating philosophical or paradigmatic dimensions in mixed methods research studies facilitates the development of stronger meta-inferences. The transformative paradigm and the explanatory sequential mixed methods design share a focus on developing sampling criteria, but with different priorities. This article contributes to the field of mixed methods research by presenting a method of integrating transformative sampling considerations in explanatory sequential designs through a participant selection joint display. The approach presented addresses concerns regarding transparency of research decisions in mixed methods studies, while providing a method of centering the transformative paradigm in mixed methods integration procedures.

A longitudinal mixed-methods study of pathology explanation clinics in patients with newly diagnosed localized prostate cancer.

OBJECTIVES: To characterize the role of pathology explanation clinics (PECs) in prostate cancer care and determine their impact on patients, urologic oncologists, and quality of care. METHODS: Semistructured interviews with 10 patients with newly diagnosed prostate cancer were conducted before and after a PEC pilot and at the 1- and 6-month follow-up visits. Information about participants' cancer knowledge and anxiety were collected quantitatively. Documented pathologist communications and proper review of outside biopsy slides were collected. Semistructured interviews were also completed with participating urologic oncologists following the pilot. RESULTS: Pathology explanation clinics improved participants' understanding of their diagnosis, cognitively and emotionally supporting them first in their urologic oncology visit and later in making an informed treatment decision. Mean knowledge scores were high, and a minority of participants had prostate cancer anxiety. Urologic oncologists noted improved understanding and reduced anxiety among participants, enabling nuanced conversations about prognosis and management during the visit. By ensuring review of outside biopsy slides and communication of clinically significant or unexpected diagnoses, PECs supported high-quality care and patient safety. CONCLUSIONS: In this small pilot, PECs positively affected patients with prostate cancer, their clinicians, and the overall care system. Additional studies in larger populations and diverse settings will be useful.