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Objectives: This study was conducted to assess an intervention that was created by a community–academic partnership to address COVID-19 health inequities. We evaluated a community-engaged bidirectional pandemic crisis and emergency risk communication (CERC) framework with immigrant and refugee populations during the COVID-19 pandemic. Methods: A 17-year community-engaged research partnership adopted a CERC framework in March 2020 to address COVID-19 prevention, testing, and socioeconomic impacts with immigrant and refugee groups in southeast Minnesota. The partnership used bidirectional communication between communication leaders and their social networks to refine messages, leverage resources, and advise policy makers. We conducted a mixed-methods evaluation for intervention acceptability, feasibility, reach, adaptation, and sustainability through multisource data, including email communications, work group notes, semistructured interviews, and focus groups. Results: The intervention reached at least 39 000 people in 9 months. It was implemented as intended and perceived efficacy was high. Frequent communication between community and academic partners allowed the team to respond rapidly to concerns and facilitated connection of community members to resources. Framework implementation also led to systems and policy changes to meet the needs of immigrant and refugee populations. Conclusions: Community-engaged CERC is feasible and sustainable and can reduce COVID-19 disparities through shared creation and dissemination of public health messages, enhanced connection to existing resources, and incorporation of community perspectives in regional pandemic mitigation policies.

Objective: To determine intervention needs and to gather stakeholder input regarding healthy eating promotion for youth members served at a Boys & Girls Club in Rochester, Minnesota. Design: Mixed-methods design informed by community-based participatory research principles. Setting and Method: Young people completed a dietary habits questionnaire and height and weight measure-ments. Focus groups gathered stakeholder – Boys & Girls Club members, staff, caregivers – perspectives on opportunities to improve children’s healthy eating through the club setting. Content analysis identified major themes in informants’ accounts. Results: Participants identified individual and environmental barriers to healthy eating and opportunities to reduce barriers at this Boys & Girls Club site. Few children met basic nutritional guidelines related to fruit, vegetable, milk and water consumption, and limiting consumption of sugar-sweetened beverages, and nearly half were overweight/obese. Stakeholders expressed interest in healthy eating promotion and identified multiple individual-level, interpersonal and environmental opportunities to promote healthier eating through the Boys & Girls Club site. Conclusion: Findings build on a growing literature indicating afterschool programmes are uniquely positioned to address health disparities related to paediatric nutrition and obesity, and can be used to inform the design of a multi-layered intervention to address the complexities influencing dietary quality and obesity among diverse and underserved youth.

Aim: Pharmacogenomics (PGx) holds potential to improve patient treatment; yet, effective patient educational materials are limited. Materials & methods: Using a ‘think aloud’ technique, we sought to understand comprehension and perceptions of a multimedia PGx results packet including a cover letter with QR code to an educational video, brochure and prototype report in the context of PGx case vignettes. Results: The cover letter and video components were viewed less favorably due to excess detail, complex jargon and technology challenges. Recommendations were to enhance comprehension and utility and to customize materials to each patient’s medications or disease conditions. Conclusion: Educational materials were revised to improve comprehension and usability, and diminish concerns to better prepare patients to understand the importance of discussing test results with their provider.

Purpose To examine the feasibility and acceptability of a social network weight loss intervention delivered by lay health promoters (HPs) to immigrant populations. Design Single-arm, non-randomized, pilot study of a social network weight loss intervention developed by a community-based participatory research partnership and delivered by HPs. Setting Community-based setting in Southeastern Minnesota, United States. Sample Somali and Hispanic immigrants to the United States: 4 social networks of adults (2 Hispanic and 2 Somali) with 39 network participants. Intervention Twelve-week behavioral weight loss intervention delivered by HPs (4 weeks in-person and then 8 weeks virtual). Measures Feasibility was assessed by recruitment and retention rates. Acceptability was assessed by surveys and focus groups with HPs and participants. Behavioral measures included servings of fruits and vegetables, drinking soda, and physical activity. Physiologic measures included weight, blood pressure, glucose, cholesterol, and triglycerides. Analysis Paired t-tests of pre- to post-intervention changes at the end of 12 weeks of treatment. Results Recruitment was feasible and post-intervention was 100%. Participants highly rated the intervention on satisfaction, motivation, and confidence to eat a healthy diet, be physically active, and lose weight. Participants were motivated by group social support and cohesion of their social networks. On average, participants lost weight (91.6 ± 15.9 to 89.7 ± 16.6 kg, P < .0001), lowered their systolic blood pressure (133.9±16.9 to 127.2 ± 15.8 mm Hg; P < .001), lowered their diastolic blood pressure (81 ± 9.5 to 75.8 ± 9.6 mm Hg; P < .0001), had more servings of vegetables per day (1.9 ± 1.2 to 2.6 ± 1.4; P < .001), and increased their physical activity (2690 ± 3231 to 6595 ± 7322 MET-minutes per week; P = .02). Conclusion This pilot study of 2 immigrant communities who participated in a peer-led weight loss social network intervention delivered during the COVID-19 pandemic demonstrated high feasibility and acceptability. Participants lost weight, improved their health status, and improved their health behaviors.

Key Points Question What are the experiences of trainees with respect to discrimination, bias, and inclusion during hematology and oncology fellowship? Findings In this qualitative study of anonymous hotline interviews with 17 fellows, 100% of the fellows reported experiencing or witnessing discriminatory behavior, mostly from patients; a novel theme was alien at home, referring to US citizens from racial or ethnic minority groups treated as other or foreign. Reporting was infrequent due to belief of futility; and diversity of the fellows in the program contributed a sense of inclusion. Meaning These findings suggest that hematology and oncology trainees need better protection from discrimination and processes for reporting witnessing of discrimination., This qualitative study investigates the experiences of discrimination and inclusion among trainees and recent graduates of a US hematology and oncology fellowship program., Importance Medical trainees frequently experience discrimination. Understanding their experiences is essential to improving learning environments. Objective To characterize trainee experiences of discrimination and inclusion to inform graduate medical education (GME) policies. Design, Setting, and Participants This qualitative study used an anonymous telephone interview technique to gather data from hematology and oncology fellows. All current trainees and recent graduates were eligible. Interviews were conducted anonymously with interviewer and participant in separate locations and recorded and transcribed. Data were analyzed in an iterative process into major themes using a general inductive analysis approach. Demographic information was obtained via anonymous survey. Data collection and analysis were conducted from July 2018 to November 2019. Main Outcomes and Measures Emergent themes illustrating bias and inclusion in a GME program. Results Among 34 fellows and recent graduates who were approached for this study, 20 consented and 17 were interviewed. Of those interviewed, 10 were men, and the median (range) age was 32 (29-53) years. The racial and ethnic distribution included 6 Asian individuals, 2 Black individuals, 3 Hispanic individuals, 2 multiracial individuals, and 4 White individuals. All fellows reported having experienced and/or witnessed discriminatory behavior. The themes elucidated were (1) foreign fellows perceived as outsiders, (2) US citizens feeling alien at home, (3) gender role-typing, (4) perception of futility of reporting, (5) diversity and inclusion, and (6) coping strategies. The majority of reported biases were from patients. Only 1 trainee reported any incidents. Reasons for not reporting were difficulty characterizing discrimination and doubt action would occur. Participants reported that diversity of cotrainees, involvement in committees, and open discussions promoted inclusivity. Conclusions and Relevance In this study, reports of discriminatory behavior toward trainees were common. The anonymous hotline methodology cultivated a safe environment for candid discussions. These findings suggest that GME programs should assess their learning climate regarding bias and inclusivity anonymously and develop processes to support trainees.

Rational, aims, and objectives Understanding of barriers and successes associated with the implementation of electronic patient self-reported measures (ePSRMs) within clinical settings are limited and have not been pursued utilizing implementation science frameworks. This qualitative study is designed to assess staff perceptions of an ePSRM implementation. Methods The study took place in an academic hospital's Consultation Liaison Psychiatry practice. Qualitative interviews were conducted with the staff and clinicians from the practice. Participants were directly involved with the implementation and use of the ePSRM system within the Psychiatry practice. Interviews were structured around the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Results Participants reported increased patient engagement as well as efficiency and time savings. The intervention was perceived to be more challenging for older patients. Facilitators include communicating the ePSRM to patients prior to the care visit, having enough trained staff or super-users who can assist with technical problems, and having a shorter questionnaire. Conclusions Overall, assessment of the ePSRM implementation was positive. Staff and clinicians indicated benefits in time, effectiveness, and improvements in patient treatment. Results indicate that defining how the system would fit within the clinical workflow was key, as was a flexible and user-friendly technology platform. The ePSRM implementation was dependent upon clinical involvement and interest in adoption, while barriers were associated with technical challenges as well as some patient difficulties, such as cognitive impairment. The use of the RE-AIM framework is valuable as it allows for systematic assessment of the implementation and identifies areas in that implementation has succeeded or is lacking.

Highlights • There are multiple disease and treatment related barriers to participating in an exercise based prehabilitation program. • Patients with advanced ovarian cancer are interested and motivated to take part in prehabilitation despite barriers. • The oncology care team has notable influence on a patient’s motivation and willingness to participate in prehabilitation., Prehabilitation may modify frailty and increase resilience in a subset of ovarian cancer patients; however there is low adherence to most programs. Our aim was to investigate potential barriers and facilitators of prehabilitation during neoadjuvant chemotherapy (NACT). We identified 15 patients who underwent NACT from 2016 to 2018. Patients underwent a semi-structured one-on-one interview. Transcripts were coded by 4 independent reviewers to identify emerging themes related to patients’ experience, functioning and exercise during chemotherapy. Data saturation occurred after 15 interviews. Patients had a mean age of 64 and were triaged to NACT for unresectable disease in 47% of cases. Patients were overall willing to participate in exercise during chemotherapy, including walking (93%), strength training (87%), and yoga or stretching (33%). Patients identified significant factors which would motivate them to exercise during treatment despite the stated barriers, including perceived benefit to overall health and well-being, improving cancer related outcomes and a supportive treatment community. In addition, the majority of patients cited advice from their physician to participate in an exercise program as highly motivating. Cancer and treatment related symptoms such as fatigue, pain, nausea and vomiting, and respiratory distress, as well as access to care, and social and mental barriers were most often identified by patients as barriers to exercise. Patients with advanced ovarian cancer demonstrated high motivation and willingness to exercise during chemotherapy, particularly when recommended by their healthcare team and when they believe there will be a direct benefit on treatment options or cancer cure.

Introduction/Objectives Childhood obesity develops as the result of the interplay between individual and environmental factors. Community based participatory research (CBPR) is an effective tool for improving health of communities. There is limited research on CBPR for facilitating healthy lifestyle in community schools with an alternative learning environment. The objective of the study was to explore student and staff perspectives via focus groups on barriers and facilitators for healthy eating and physical activity in a community school with alternative learning environment and to prioritize, design, and implement suggested interventions to improve healthy lifestyle. Methods We conducted qualitative research through 8 focus groups of middle and high school students (n = 40) and 2 focus groups of school staff (n = 8). The school community and research team subsequently identified and implemented interventions for facilitating healthy lifestyle in students within the school environment. Results Barriers identified for healthy lifestyle included lack of motivation, lack of healthy food options at school, inadequate knowledge about healthy lifestyle and insufficient opportunities for physical activity. Facilitators for healthy lifestyle were support and motivation from mentors and knowledge about healthy nutrition. Key strategies implemented were addition of healthier food options, educational materials for healthy eating, creation of a walk path, standing desks in classrooms and additional equipment in the school gymnasium. Conclusions Formative feedback from students and staff was helpful in the implementation of strategies for facilitating healthy lifestyle among students within a community school with an alternative learning environment.

Introduction Latino populations, particularly those living in rural areas, experience a disproportionately high prevalence and poorer outcomes of type 2 diabetes mellitus (T2DM). The purpose of this study was to test the acceptability and perceived effectiveness of a group-based, facilitated digital storytelling intervention for T2DM self-management among rural Latino patients. Method Twenty Latino adults with T2DM participated in facilitated storytelling discussions at two primary clinics. Participants viewed a 12-minute T2DM self-management digital storytelling intervention, followed by a facilitated group discussion. Surveys, observations, and focus groups were used to assess for acceptability and perceived effectiveness of the intervention through descriptive and qualitative analysis, informed by narrative and social cognitive theory. Results All participants found the intervention interesting and useful and reported improvement in confidence, motivation, and behavioral intentions for T2DM self-management. Themes mapped closely with narrative theory models, further suggestive of the behavior change potential. Discussion Facilitated discussions may add value to viewing of digital stories and represent a scalable approach to provide culturally congruent health care for Latino patients with diabetes in rural settings. Within the paradigm of group-based diabetes educational programs, this lends itself well to critical transcultural nursing care.

The coronavirus disease 2019 (COVID-19) crisis has disproportionately affected the African American population. To mitigate the disparities, we deployed an emergency preparedness strategy within an existing community-based participatory research (CBPR) partnership among African American churches to disseminate accurate COVID-19 information. We used the Centers for Disease Control and Prevention Crisis and Emergency Risk Communication framework to conduct a needs assessment, distribute emergency preparedness manuals, and deliver COVID-19–related messaging among African American churches via electronic communication platforms. A needs assessment showed that the top 3 church emergency resource needs were financial support, food and utilities, and COVID-19 health information. During an 8-week period (April 3–May 31, 2020), we equipped 120 churches with emergency preparedness manuals and delivered 230 messages via social media (Facebook) and email. For reach, we estimated that 6,539 unique persons viewed content on the Facebook page, and for engagement, we found 1,260 interactions (eg, likes, loves, comments, shares, video views, post clicks). Emails from community communication leaders reached an estimated 12,000 church members. CBPR partnerships can be effectively leveraged to promote emergency preparedness and communicate risk among under-resourced communities during a pandemic.

Context.—Autopsy rates have decreased dramatically despite providing important clinical information to medical practices and social benefits to decedents' families.Objective.—To assess the impact of an institutional Office of Decedent Affairs (ODA), a direct communication link between pathology and decedents' families, on hospital autopsy consent rates, autopsy-related communication, practitioner views, and next-of-kin experiences.Design.—A before and after study involving all hospital decedents whose deaths did not fall within the jurisdiction of the medical examiner's office from 2013 to 2018. A pathology-run ODA launched in May 2016 to guide next-of-kin through the hospital death process (including autopsy-related decisions) and serve as the next-of-kin's contact for any subsequent autopsy-related communication. Critical care and hematology/oncology practitioners were assessed for their autopsy-related views and decedents' next-of-kin were assessed for their autopsy-related experiences. Autopsy consent rates for non–medical examiner hospital deaths, autopsy-related communication rates, practitioner views on the role and value of autopsy, and next-of-kin autopsy experiences and decisions factors were compared prior to and after ODA launch.Results.—Autopsy consent rates significantly increased from 13.2% to 17.3% (480 of 3647 deaths versus 544 of 3148 deaths; P < .001). There were significant increases in the rate of autopsy-related discussions and bereavement counseling provided to decedents' families. Practitioner views on the positive role of autopsy for any hospital death and those with advanced stage cancer also significantly increased. Next-of-kin indicated more consistent autopsy-related discussions with the potential benefits of autopsy discussed becoming key decision factors.Conclusions.—An ODA improves hospital autopsy consent rates, autopsy-related communication, providers' autopsy-related views, and next-of-kins autopsy experiences.

Community health workers (CHWs) bring their unique capacity as liaisons for patients, communities, and health care systems to health care teams. We describe the collaborative development of a community-based CHW program to address the social determinants of health that affect patients. This cosupervisory, generalist CHW model provides an innovative template for cocreation of patient-centered infrastructure and resourcing within an evolving and replicable holistic care continuum across patient ages, diagnoses, health care payers, and communities to promote health equity. The program has been effective in decreasing health care utilization and cost.

Teleneonatology may improve the quality of high-risk newborn resuscitations performed by general providers in community settings. Variables that affect teleneonatology utilization have not been identified.The objective of our mixed-methods study was to understand the barriers and facilitators experienced by local care providers who receive teleneonatology services.In October 2015, an electronic survey was sent to 349 teleneonatology participants at 6 community hospitals to assess user satisfaction, technology usability and acceptability, and impact on patient care. From December 2015 to June 2016, 49 participants were involved in focus groups and individual interviews to better understand barriers and facilitators of teleneonatology implementation. Qualitative data were analyzed using a thematic approach.Survey response rate was 31.8% (N = 111). Of 93 survey respondents, 88 (94.6%) agreed that teleneonatology was needed at their hospitals, and of 52 participants, 50 (96.2%) believed that teleneonatology consults were helpful. We identified multiple facilitators and barriers to program implementation in education and training, process and work flow, communication, and technology.Local care teams believed that teleneonatology was valuable for connection to a remote neonatologist. Successful program implementation may be facilitated by communicating the value of teleneonatology, engaging local stakeholders in program training and education, maintaining supportive professional relationships, and designing simple, highly reliable clinical work flows.Teleneonatology is viewed as an innovative, valuable service by local care teams. The identified barriers and facilitators to program use should be considered when implementing a teleneonatology program.

Objective This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients’ clinical trial (CT) participation. The study also offers unique insights into how FMs view patients’ decision making. Methods In‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA). Results Patients’ relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors’ recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FMs maintained that patients have the “final say,” indicating an individualistic autonomy. However, maintaining the “final say” in the decision‐making process is constitutive of patients’ relationships, emphasizing a relational approach to autonomy. FMs support patients’ autonomy and they do so particularly when they believe the patient is capable of making the right choices. Conclusions Although ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.

Our goals were to evaluate young adult lymphoma survivors' perceptions regarding benefits of exercise after cancer treatment, to identify barriers to exercise, and to understand the types of exercise interventions that may be useful in this patient population.Young adult lymphoma survivors were invited to participate in a survey and focus group. Questions focused on elucidating barriers to exercise as well as potential opportunities for supporting patients in adequate exercise. Focus groups were audiorecorded and transcribed, and data were coded inductively for themes and applied findings.Eight survivors participated. Findings were categorized into five main themes: barriers to exercise, facilitators of exercise, personal responsibility for being active, interconnectedness of exercise with a healthy lifestyle, and recommendations.Fatigue and frustration with postcancer physical limitations are major barriers to exercise for young adult survivors, whereas support from others, data tracking, and survivor-specific resources are facilitators. Interventions that incorporate fitness tracking technology, are individually tailored, and/or create a community with other young adult survivors may be successful in this population.

Community health worker (CHW) programs can act as bridges between patients and health care teams, but the complexity and variability of program components and outcomes make them difficult to evaluate. This evaluation used a realist approach to identify underlying mechanisms and contextual factors associated with successful implementation of a community-placed CHW program affiliated with a primary care practice in the Midwest United States. The analysis identified mechanisms by which stakeholders built trust, self-efficacy, and empowerment to improve patient-centered outcomes and experiences. It also identified conditions that support activation of these mechanisms, including the ability of CHWs to make home visits, effective communication between members of the care team across settings, and clarity about the role of the CHW relative to other support services for patients. This type of context-mechanism-outcome evaluation facilitated development of recommendations responsive to local context.

Although HIV is identified as a family disease, the overall response to the global HIV epidemic continues to predominantly focus on individuals. The aim of this qualitative study was to explore how the role of the family in HIV prevention is perceived by community-based stakeholders. Understanding the role of the family within the context of the HIV/AIDS is essential for community/public health nurses. In total, 34 stakeholders participated in the study. Three major categories were identified namely: fostering positive intra-familial relations, utilizing external resources, and barriers to family roles. The study findings have implications for community-based HIV family interventions.

Background Despite the importance of home enteral nutrition (HEN), there is a lack of understanding within the medical and general community of how HEN impacts the lives of patients and caregivers. Using a theoretical orientation that attends to the materiality of both everyday and medical objects, we explored patients' and family caregivers' everyday experiences of administering feeds during HEN. Methods Using the photo‐elicitation interviewing method, patients on HEN and their family caregivers were asked to take up to 10 photographs to portray material items and activities that they considered foundational to HEN. They subsequently narrated their experiences and the participant‐generated photographs in an interview. Participant‐generated photographs (126) and accompanying narratives were analyzed using layered analysis, and results were theorized with attention to both social and material significance of HEN. Results Patients and caregivers detailed overcoming misconceptions of HEN, and through their use of photographs, they conveyed their expertise in developing their own HEN feeding systems and practices, that used both the material artifacts provided by the hospital (the tube, syringe, and formula) as well as everyday material items found in the patient's home. More than this, photographs and patient narratives depicted intimate involvement of patients' families in tube feeding. This yielded a more comprehensive understanding of the material and experiential realities of HEN. Conclusion Home enteral nutrition was found to be a shared familial experience, that in addition to requiring medical equipment also incorporated ordinary material artifacts within the social setting of the home and family life. To more accurately convey the material, experiential, and social realities of HEN to future patients, our findings underscore the importance of drawing on both visual and textual forms of patient‐produced information in the development of HEN patient educational materials.

The aim of this study was to define health care providers' perceptions toward prone patient positioning for spine surgery using the Jackson Table, which has not been hitherto explored.We analyzed open-ended questionnaire data and interviews conducted with the spine surgical team regarding the current process of spinal positioning/repositioning using the Jackson Table. Participants were asked to provide an open-ended explanation as to whether they think the current process of spinal positioning/repositioning is safe for the staff or patients. Follow-up qualitative interviews were conducted with 11 of the participants to gain an in-depth understanding of the challenges and safety issues related to prone patient positioning.Data analysis resulted in 6 main categories: general challenges with patient positioning, role-specific challenges, challenges with the Jackson Table and the "sandwich" mechanism, safety concerns for patients, safety concerns for the medical staff, and recommendations for best practices.This study is relevant to everyday practice for spinal surgical team members and advances our understanding of how surgical teams qualitatively view the current process of patient positioning for spinal surgery. Providers recommended best practices for using the Jackson Table, which can be achieved through standardized practice for transfer of patients, educational tools, and checklists for equipment before patient transfer and positioning. This research has identified several important practice opportunities for improving provider and patient safety in spine surgery.

African American women bear a disproportionate burden of cardiovascular disease (CVD) and cancer. The purpose of this study was to identify prevalent health concerns among African American women who are members of The Links, Incorporated (Links), a large national service organization with health programming for communities of color.Survey data (n = 391) were collected during the 2012 Links National Assembly. Twenty-six health issues were presented within five groups: cancer, CVD, pulmonary disease, chronic conditions, and behavioral health. For each issue, women indicated if it was a concern for "you/your family" or "the African American community" via check-boxes. Differences in the proportions for "you/your family" and "the African American community" were evaluated using the McNemar test.Hypertension was the most frequently endorsed concern for you/your family (79 %); 73 % indicated this was a concern for the African American community. Sickle cell anemia was the most frequently endorsed concern for the African American community (77 %). Melanoma was the least endorsed health issue overall (15 % you/your family, 55 % community). Breast was the most frequently endorsed cancer concern, while lung was among the least. For 23 out of 26 health issues, the proportion concerned was greater for the "African American community" than for "you/your family" (all p 0.05).CVD and breast cancer were salient concerns; both are topics for which national awareness campaigns and Links health programming exist. Comparatively lower concern was observed for melanoma, a cancer with known survival disparities, and for lung cancer, a leading cause of death in women.

Family life education has a broad aim and scope which has been described to incorporate a preventative, educational, and collaborative approach to address an array of issues affecting individuals and family life. Therefore when examining family life education there are many cultural and contextual factors that need to be considered. In this chapter we hope to illustrate the social structures, concepts, and dynamics existing in Ghanaian familial relationships and how those concepts create opportunities and yet limitations to the development of a formal family life education and evaluation in Ghana. We provide cultural and historical perspectives of “the Family in Ghana” relating it to family life education, the social and familial strengths, family policies addressing family needs, and the challenges associated with implementation of FLE.

Childhood obesity disproportionately affects specific racial and ethnic groups and households with low socioeconomic status. The Alternative Learning Center (ALC) within Rochester School District 535 provides viable educational options for students who are experiencing difficulty in regular educational systems. A greater proportion of students at ALC are ethnic minorities, qualify for free and reduced lunch and receive special education services. The prevalence of obesity in students at ALC is much greater than the national average (50% obese versus 16%). This study sought to understand barriers and facilitators to healthy …

Objective The objective of this study was to explore the perspectives and experiences of patients with rheumatoid arthritis (RA) whose assessments of their disease differ from those of their rheumatology care provider. Methods A total of 20 adult RA patients with patient-provider discordance at their most recent rheumatology appointment (within 4 weeks) were recruited. Discordance was defined by an absolute difference of 25 or more between patient and provider global assessments on visual analog scales (VASs) of disease activity. For descriptive purposes, participants completed the Health Assessment Questionnaire II, pain VAS, and Patient Health Questionnaire-9 depression scale. Interviews were conducted in person and individually with each patient with a semistructured interview guide. Topics ranged widely, including participants’ perspectives and experiences with living with RA, clinical disease assessments, patient-provider communication, and psychosocial or other needs. Data from the interviews were analyzed using an interpretive phenomenological approach. Results Six major themes emerged from the patient interviews describing patient-provider discordance and disease assessment: being misunderstood by others, limitations of provider assessments, discrepancy with provider findings, inadequate active listening on the part of health care providers, unmet psychosocial needs, and lack of patient empowerment. Conclusion Patients described discordance in terms of symptom assessment and understanding how RA affects everyday life. Typical clinical assessments did not capture their experience. The resulting conceptual framework should inform future interventional studies seeking to enhance concordance of patient-physician communication and to optimize satisfaction with care and health-related quality-of-life outcomes for patients with RA. This article is protected by copyright. All rights reserved.

Risk perception is an important predictor of cancer prevention behaviors. We examined the perceived risk of cervical cancer among an ethnically diverse population of women of lower socioeconomic status.Females attending a women's health clinic were recruited for a study addressing cervical cancer prevention. Survey questions evaluated lifetime perceived risk of cervical cancer (0%-100%), beliefs about the accuracy of the Pap test, and estimated incidence of abnormal Pap test results. Risk estimates for oneself were followed with an item seeking a brief, qualitative explanation of the risk estimate.Surveys were completed by 338 women. The mean (SD) age of respondents was 29.9 (8.6) years. Women self-identified as Hispanic/Latina (32%, n=107), White (34%, n=116), and African American (34%, n=115). Estimated perceived lifetime risk of getting cervical cancer ranged from 0% to 100% (59.2 [29.5]). Risk estimates were associated with perceived prevalence of abnormal results (r=0.24, p.001) and perceptions regarding the accuracy of the Pap test (r=0.13, p.05). On average, women estimated that nearly half of all women have ever had an abnormal result (49.2 [26.9]; n=335; range, 0%-100%), with African American women estimating a higher percentage compared to Hispanic/Latina and White women. Women who themselves experienced an abnormal Pap test result reported higher proportions of other women experiencing an abnormal result (t333=-3.67, p.01).This study advances our understanding of misperception of risk and how women qualitatively view their risk of cervical cancer. The findings underscore areas for practitioners to enhance patient education efforts.

Background. Extensi ve family coping research has been conducted among breast cancer, prostate cancer and melanoma with lesser emphasis on the coping experiences of colorectal cancer (CRC) patients and their family members. Objective. T o examine ways in which patients and their family members cope with the diagnosis of CRC. Methods. A total of 73 par ticipants (21 patients, 52 family members) from 23 families described their experiences during and after a CRC diagnosis, including their coping experiences with the diagnosis. Data from semi-structured interviews were audio recorded and transcribed. The data were analyzed utilizing content analysis with inductive coding methods. Results. Eight major themes were identified: positi ve reframing, holding on to a sense of normalcy, religion and spirituality, joining a group, creating awareness of CRC, lifestyle change, seeking information and alternative treatments. Maintaining an emotional sense of normalcy through positive thinking, engaging in activities to take one’s mind off the diagnosis and believing that there is a higher authority which has control over the diagnosis and life were vital for the patients and their family members. Patients and family members used similar coping strategies. Conclusion. Findings from this study have implications for under standing how families blend emotion-based and problem-focused coping strategies in the face of a CRC diagnosis. Further developing evidence-based interventions that target coping and well-being in cancer patients and extending them to family members is necessary and holds great promise for providers who care for patients with familial cancers.

Cancer is a shared family experience and may provide a "teachable moment" to motivate at-risk family members to adopt cancer prevention and health promotion behaviors. This study explored how a diagnosis of colorectal cancer (CRC) is experienced by family members and may be used to develop a family-based CRC prevention program. Preferences regarding content, timing, and modes of program delivery were examined. Social cognitive theory provided the conceptual framework for the study.This study employed mixed methodology (semi-structured interviews and self-report questionnaires). Participants included 73 adults (21 patients, 52 family members) from 23 families (two patients were deceased prior to being interviewed). Most patients (n = 14; 67 %) were interviewed 1-5 years post-diagnosis. Individual interviews were audio-recorded, transcribed, and content analyzed.For many, a CRC diagnosis was described as a shared family experience. Family members supported each other's efforts to prevent CRC through screening, exercising, and maintaining a healthy diet. Teachable moments for introducing a family-based program included the time of the patient's initial cancer surgery and post-chemotherapy. Reported willingness to participate in a family-based program was associated with risk perception, self-efficacy, outcome expectancies, and the social/community context in which the program would be embedded. Program preferences included cancer screening, diet/nutrition, weight management, stress reduction, and exercise. Challenges included geographic dispersion, variation in education levels, generational differences, and scheduling.CRC patients and family members are receptive to family-based programs. Feasibility concerns, which may be mitigated but not eliminated with technological advances, must be addressed for successful family-based programs.

Globally more women have been diagnosed with HIV/AIDS and are more likely to be stigmatized than men, especially in male-dominant societies. Gender differences in the experience of HIV-related stigma, however, have not been extensively explored. Researchers investigate the gender differences in HIV/AIDS-related stigma experiences here. Interviews were conducted with eight HIV patients and their nine discordant family members in Ghana. Our findings include gender differences in disclosure and response to HIV/AIDS diagnosis. The negative impact of HIV-related stigma was found to be more extensive for women than for men. Our findings may be used to facilitate an awareness and understanding through which supportive interventions can be implemented.

Newly-arrived African refugees are a vulnerable group of immigrants for whom no validated acculturation measures exist. A valid measurement tool is essential to understand how acculturative processes impact health and health disparities. We adapted the Bicultural Involvement Questionnaire (BIQ) to characterize its reliability among ethnic Somali women residing in Minnesota, and Somali, Somali Bantu, and Burundian women in Arizona. Surveys were administered to 164 adult women. Analyses were conducted along socio-demographic variables of ethnicity, geographic residence, age, and length of time in the United States through t tests and one-way analysis of variance. Exploratory factor analysis was conducted on the modified BIQ. Exploratory factor analyses yielded five subscales: “Speak Native Language”, “Speak English Language”, “Enjoy Native Activities”, “Enjoy American Activities”, and “Desired Ideal Culture”. The subscales of the modified BIQ possessed Cronbach’s α ranging from 0.68 to 0.92, suggestive that all subscales had acceptable to excellent internal consistency. The modified BIQ maintained its psychometric properties across geographic regions of resettled Central and East African refugees.

10530 Background: Learner wellbeing may be adversely affected by the experience of discrimination. Eliciting details from this vulnerable population about these experiences is a challenge. This study characterizes trainee experiences of discrimination and inclusion to inform graduate medical education (GME) policies and practice. Methods: Anonymous semi-structured, private phone interviews were conducted with fellows after informed consent. No identifying information was exchanged and the interviewer had no supervisory role over learners. Demographic information was obtained via anonymous online survey. Results: Of 29 fellows approached, 20 consented; 17 interviewed (10 men; median age 32 years). Racial & ethnic distribution: 6 Asian, 2 Black, 2 Multi-racial, 4 White, 3 Hispanic/Latino. All fellows reported discriminatory behavior that they either experienced or witnessed. Incidents of discriminatory behavior towards trainees were more common from patients (pts) (n = 41) than staff (n = 12). Discrimination from pts included requesting a different physician based on accent (n = 13), race (n = 11), perceived avoidance of a trainee considered “different” (n = 11), sex (n = 5), & ethnicity (n = 4). Six trainees were aware of policies against pt discrimination but only 1 trainee reported an incident. Trainees did not report because of the nature of incidents (micro aggressions that are difficult to characterize) and sense of futility of reporting. Discriminatory behavior from staff was based on perceived micro aggressions (n = 4), sex (n = 3), ethnicity (n = 3), ageism (n = 1), and sexual orientation (n = 1). Impact on trainees ranged from negative (personal anguish) to positive (motivation to improve communication). Coping mechanisms included debriefing with family/trainees and focusing on good pt experiences. Trainees felt that having diverse co-fellows, involvement on committees, and supportive program leadership promoted inclusivity. Conclusions: Our study found that discriminatory behavior towards trainees is common. Our methodology allows for honest & safe discussions. GME programs must assess their learning climate with respect to bias/inclusivity & develop appropriate processes.

Background/aims: Some of the most promising avenues of cancer clinical investigation center on immunotherapeutic approaches. These approaches have provided notable gains in cancer therapeutics with recent Food and Drug Administration approvals of agents of this class in several types of cancers, although gains for ovarian cancer lag behind. This study examined perceptions of therapeutic trials including immunotherapy and virotherapy among ovarian cancer patients and their family members. Methods: A total of 72 semi-structured qualitative interviews were conducted with 33 patients and 39 family members at two National Cancer Institute–designated comprehensive cancer centers. Eligible patients were diagnosed with epithelial ovarian, primary peritoneal, or fallopian tube carcinoma and had experience with clinical trial conversations; family members were nominated by patients and interviewed separately. Applied thematic analysis was used to understand and interpret the data. Results: More participants were aware of vaccine trials than virus trials, although more than half had heard of at least one of them. Initial reactions to vaccine trials were generally favorable. For many, childhood experience with vaccines lent a familiar frame of reference. Virus trials elicited more negative initial reactions, including the use of adjectives such as “scary” and “dreadful.” Viruses seemed contagious or difficult to control. Increased receptivity to these trials occurred in the context of limited therapeutic options and cancer recurrence. Most participants, including those not immediately drawn to these types of trials, indicated openness to learning more. Conclusion: Although vaccine and viral trials are both immunologically based therapeutic approaches, patients who are offered these trials may perceive their potential benefit and safety quite differently. There is a need to consider terminology, solicit and address “gut reactions,” and provide information that enables patients and their family members to better understand the science behind these trials.

Objective Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice implications Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual’s role in identifying trials is critical.

Background and aims Little research has been done on tele‐intensive care unit (ICU) implementation across different types of ICUs, and there exist few studies that have used qualitative research methods to analyze the human and organizational factors influencing optimization of telemedicine for newborn resuscitation. The objective of this study was to understand health care professionals' acceptance, utilization, and integration of video telemedicine for newborn resuscitation (termed teleneonatology) in community hospital settings. Methods Focus group and individual interviews were conducted with 49 health care professionals at six affiliated health system hospitals. Data were gathered from physicians (n = 18), nurses (n = 30), and a nurse practitioner. Data were inductively analyzed using a thematic approach, and then constructs from normalization process theory (NPT) were deductively applied. NPT rendered a general framework to describe and assess how care teams perceive the implementation of teleneonatology and how they interact with this telemedicine service in their local setting. Results Local health care professionals accepted teleneonatology as an important, helpful service, yet its implementation was perceived as both valuable and a threat to professional traditions. Utilization may depend on perceived benefit, mutual understanding of the guidelines, and expectations of use, and other relational, human, contextual, and system factors. Participants in this study agreed on the need for collective work to successfully integrate teleneonatology into the local practice. Discussions NPT uncovered that successful implementation of a teleneonatology program may be facilitated by strong interpersonal relationships among care teams, continuous programmatic training and education, and communicating the clinical value of teleneonatology, including its opportunities and benefits.

Physician recommendation is an important predictor of HPV vaccine acceptance; however, physician willingness and preferences regarding HPV vaccination may be influenced by factors including patient age, vaccine type, and cost. A cross-sectional survey was administered to a convenience sample of health care providers in Da Nang, Vietnam, to evaluate awareness, perceptions about HPV and HPV vaccines, and willingness to vaccinate a female patient. Willingness to vaccinate was evaluated using a full-factorial presentation of scenarios featuring the following factors: vaccine cost (free vs 1,000,000 VND), patient age (12, 16, or 22 years), and HPV vaccine type (bivalent vs quadrivalent). Responses from 244 providers were analyzed; providers had a mean age of 34±11.9 years; a majority were female, married, and had children of their own. Thirty-six percent specialized in obstetrics/gynecology and 24% were providers in family medicine. Of the three factors considered in conjoint analysis, vaccine cost was the most important factor in willingness to vaccinate, followed by patient age, and vaccine type. The most favorable scenario for vaccinating a female patient was when the vaccine was free, the patient was 22 years of age, and the HPV4 vaccine was described. In multivariable analysis, older age, being a physician, being married, and having children were all associated with increased willingness to recommend HPV vaccination (p

Immigrants and refugees to the United States exhibit relatively low levels of physical activity, but reasons for this disparity are poorly understood. 16 gender and age-stratified focus groups were conducted among 127 participants from heterogenous immigrant and refugee groups (Cambodian, Mexican, Somali, Sudanese) in a small Minnesota urban community. We found many similarities in perceived barriers and facilitators to physical activity between heterogeneous immigrant and refugee groups. While the benefits of physical activity were widely acknowledged, lack of familiarity and comfort with taking the first steps towards being physically active were the most significant barriers to physical activity. Participants described being motivated by social support from family, friends, and communities to be physically active. Our findings suggest that shared experiences of immigration and associated social, economic, and linguistic factors influence how physical activity is understood, conceptualized and practiced.

ObjectiveThere exists a paucity of work in the development and testing of theoretical models specific to childhood health disparities even though they have been linked to the prevalence of adult health disparities including high rates of chronic disease. We conducted a systematic review and thematic analysis of existing models of health disparities specific to children to inform development of a unified conceptual framework.MethodsWe systematically reviewed articles reporting theoretical or explanatory models of disparities on a range of outcomes related to child health. We searched Ovid Medline In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid Embase, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus (database inception to 9 July 2015). A metanarrative approach guided the analysis process.ResultsA total of 48 studies presenting 48 models were included. This systematic review found multiple models but no consensus on one approach. However, we did discover a fair amount of overlap, such that the 48 models reviewed converged into the unified conceptual framework. The majority of models included factors in three domains: individual characteristics and behaviours (88%), healthcare providers and systems (63%), and environment/community (56%), . Only 38% of models included factors in the health and public policies domain.ConclusionsA disease-agnostic unified conceptual framework may inform integration of existing knowledge of child health disparities and guide future research. This multilevel framework can focus attention among clinical, basic and social science research on the relationships between policy, social factors, health systems and the physical environment that impact children's health outcomes.

164 Background: Adolescent and young adult (AYA) cancer survivors have distinctive and often unmet needs, may lead long lives after treatment, and are a population for whom targeted health supports are limited. Exercise in particular has become increasingly recognized as a vital part of cancer survivors’ health needs, yet, little is known about what interventions would be most appropriate for this population. This ongoing study reports early data on barriers and facilitators to exercise in AYA lymphoma survivors. Methods: We conducted a focus group with five young adult lymphoma survivors. Participants completed questionnaires to assess quality of life, exercise habits, and knowledge about evidence for exercise after cancer treatment. Charts were abstracted for demographic and treatment-related details. The focus group was audio recorded and transcribed. Data is being analyzed thematically to generate applied findings and identify areas for action. Results: Participants were 24-35 years old, 60% male, and an average of 2.97 years from the time of diagnosis. All reported some form of physical activity, with 80% active and 20% moderately active. Preliminary analysis identified fatigue, weight gain, and lack of time as barriers to exercise. Participants identified fatigue particularly in the early survivorship period, and discussed the issue of non-cancer survivor peers not relating with or recognizing fatigue after treatment. 100% of participants reported that someone from their doctor’s office had talked with them about exercise, but indicated during the focus group that this recommendation did not motivate them to exercise. Other themes revolve around the relationship between healthy diet and physical activity. In terms of an intervention, survivors were interested in activity trackers and fitness apps, exercise variety, and fitness groups targeted specifically for AYA survivors. Conclusions: Fatigue, weight gain, and time are barriers to exercise for AYA survivors. Interventions that incorporate fitness tracking technology, provide variety, and/or include other AYA survivors may be successful in this unique population.

Background Immigrants and refugees to the United States exhibit lower dietary quality than the general population, but reasons for this disparity are poorly understood. In this study, we describe the meanings of food, health and wellbeing through the reported dietary preferences, beliefs, and practices of adults and adolescents from four immigrant and refugee communities in the Midwestern United States. Methods Using a community based participatory research approach, we conducted a qualitative research study with 16 audio-recorded focus groups with adults and adolescents who self-identified as Mexican, Somali, Cambodian, and Sudanese. Focus group topics were eating patterns, perceptions of healthy eating in the country of origin and in the U.S., how food decisions are made and who in the family is involved in food preparation and decisions, barriers and facilitators to healthy eating, and gender and generational differences in eating practices. A team of investigators and community research partners analyzed all transcripts in full before reducing data to codes through consensus. Broader themes were created to encompass multiple codes. Results Results show that participants have similar perspectives about the barriers (personal, environmental, structural) and benefits of healthy eating (e.g., ‘junk food is bad’). We identified four themes consistent across all four communities: Ways of Knowing about Healthy Eating (‘Meanings;’ ‘Motivations;’ ‘Knowledge Sources’), Eating Practices (‘Family Practices;’ ‘Americanized Eating Practices’ ‘Eating What’s Easy’), Barriers (‘Taste and Cravings;’ ‘Easy Access to Junk Food;’ ‘Role of Family;’ Cultural Foods and Traditions;’ ‘Time;’ ‘Finances’), and Preferences for Intervention (‘Family Counseling;’ Community Education;’ and ‘Healthier Traditional Meals.’). Some generational (adult vs. adolescents) and gender differences were observed. Conclusions Our study demonstrates how personal, structural, and societal/cultural factors influence meanings of food and dietary practices across immigrant and refugee populations. We conclude that cultural factors are not fixed variables that occur independently from the contexts in which they are embedded.