Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta.

Objective: Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. Materials and Methods: We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes. Results: Of 49 total participants, 20 were patient advisory committee members. Participants' mean age was 49 (range 18-74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion. Discussion: Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices. Conclusion: For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals.

School Nurses' Diabetes-Related Attitudes and Self-efficacy in Diabetes Education and Management.

This study explored relationships between school nurses' diabetes-related attitudes, self-efficacy in diabetes management and education, and care practices. One-hundred fourteen school nurses who have taken care of students with type 1 diabetes in public schools comprised this descriptive study sample. Participants completed online surveys. School nurses' diabetes-related attitudes were not related to their self-efficacy in diabetes education, but nurses' attitudes towards the psychosocial impact of diabetes were significantly related to their self-efficacy in diabetes management, and the number of students with diabetes was a significant contributor to this relationship. Nurses' full-time status and the type of school they worked in were significantly related to their self-efficacy in providing diabetes education. School nurses' positive attitudes about providing care for students with diabetes were related to having a higher level of self-efficacy in providing diabetes management. Based on the findings, recommendations are made for health consolidated schools and full-time school nurses.

Addressing Positionality Within Case-Based Learning to Mitigate Systemic Racism in Health Care.

BACKGROUND: Case-based learning has historically focused on the individual patient; however, there is often little consideration within this teaching method of how social determinants of health, such as structural racism and its adverse health effects, bear upon patients' health status and consequent patient outcomes. PROBLEM: Implementing case studies necessitates taking into account the positionality of patients, as well as health care providers, to counter the racial oppression and discrimination embedded in existing health care and educational systems. APPROACH: We describe a process for creating an inclusive, antiracist environment for case-based learning within nursing education, outlining steps for preparing students to more effectively examine case studies through social determinants of health framing and lens to mitigate harmful impacts from systemic racism and racial discrimination in clinical care. CONCLUSIONS: Addressing positionality in case-based learning is one antiracist strategy to begin rectifying health disparities and moving health care toward equity.

Short-Term Outcomes of a Diversity, Equity, and Inclusion Institute for Nursing Faculty.

BACKGROUND: Student populations in the United States are increasingly diverse, prompting the need to make learning environments in schools of nursing more inclusive. Training for faculty is needed to support this work; however, evidence regarding best practices to make classrooms more inclusive is lacking. METHOD: A 3-day Diversity, Equity, and Inclusion (DEI) Institute was developed and conducted to create inclusive learning environments; facilitate crucial conversations on racism and other -isms, especially in the context of nursing and health equity; and practice these skills and develop or transform at least one actual class activity. RESULTS: DEI Institute satisfaction and impact were overwhelmingly positive, and statistically significant increases in DEI-related teaching self-efficacy were observed post-Institute (p values ranging from .0004 to < .0001). CONCLUSION: The DEI Institute is one example of a successful approach that can create inclusive learning environments and address issues related to health equity. [J Nurs Educ. 2019;58(11):633-640.].

Disparities in Insulin Pump Therapy Persist in Youth With Type 1 Diabetes Despite Rising Overall Pump Use Rates.

PURPOSE: This study sought to determine if disparities in insulin pump therapy among youth with type 1 diabetes (T1DM) persist despite recent increases in overall pump use rates. DESIGN AND METHODS: All patients aged 6 months-17 years, diagnosed with T1DM, and completed 4+ outpatient diabetes visits at an academically-affiliated pediatric health care center from 2011 to 2016 were identified (n = 2131). Data were collected from existing electronic medical records and a multivariable logistic regression model was used to identify factors associated with insulin pump therapy. RESULTS: Findings revealed one novel factor (patients/families whose primary language is Spanish [OR 0.47, p = 0.038] or other non-English languages [OR 0.47, p = 0.028]) and confirmed several previously known factors associated with lower insulin pump use: patients who were older (10-14 years OR 0.38, p < 0.0001; 15+ years OR 0.15, p < 0.0001), male (OR 0.80, p = 0.021), non-Hispanic black (OR 0.59, p = 0.009), American Indian/Alaska Native (OR 0.19, p = 0.023), had either government (OR 0.42, p < 0.0001) or no insurance (OR 0.52, p = 0.004) and poor glycemic control (at least one HbA1c ≥ 8.5%; OR 0.54, p < 0.0001). CONCLUSION: Significant disparities in insulin pump use in youth with T1DM persist despite known benefits associated with pump therapy and underlying causes remain unclear. PRACTICE IMPLICATIONS: Health care providers should explore barriers to insulin pump therapy, including limited English language proficiency.

East African Perceptions of Barriers/Facilitators for Pediatric Clinical Research Participation and Development of the Inclusive Research Model.

PURPOSE: This study sought to gain a greater understanding of perceptions related to barriers/facilitators for pediatric (ages 0-17) clinical research participation among East African immigrant community members. DESIGN AND METHODS: Community leader interviews (n = 6) and focus groups with lay members (n = 16) from the three largest East African communities in the Seattle area (Eritrean, Ethiopian and Somali) were conducted. Discussions were semi-structured based on existing barrier/facilitator research and analyzed using directed content analysis to identify major themes. RESULTS: Analysis revealed two novel barrier sub-themes: inadequate interpretation and translation of information even when services were available and a lack of adequate vocabulary in preferred languages. Participants also confirmed previously identified logistical barriers/facilitators (lack of knowledge regarding clinical research; time, cost, transportation, and child care challenges; providing incentives) and psychosocial barriers/facilitators (mistrust of research; cultural and/or religious differences; connecting benefits to the community; involving religious/community leaders or organizations and including community members on the research team; transparency in the research process; presenting results to the community) for clinical research participation among underrepresented groups. CONCLUSION: Perceptions of barriers/facilitators for pediatric clinical research participation among East African immigrants identified two novel sub-themes and confirmed those previously described by other underrepresented communities. PRACTICE IMPLICATIONS: To facilitate more inclusive research participation, researchers, nurses and other health care providers might consider ensuring adequate time for discussion of the research study and process, engaging the community in the research process, employing lay reviews of translated materials and/or oral consent processes, and other strategies outlined in the Inclusive Research Model.

When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?

BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. METHODS: Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. RESULTS: We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. CONCLUSIONS: Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.

Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care.

BACKGROUND: Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family. OBJECTIVE: To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments. METHODS: Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis. RESULTS: We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child's best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent. CONCLUSIONS: Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.

Elements of Family-Centered Care in the Pediatric Intensive Care Unit: An Integrative Review.

This paper reports result from a systematic search and thematic analysis of qualitative literature to identify key issues related to family-centered care, behaviors, and communication skills that support the parental role and improve patient and family outcomes in the PICU. Five themes were identified: 1) sharing information; 2) hearing parental voices; 3) making decisions for or with parents; 4) negotiating roles; and 5) individualizing communication. These themes highlight several gaps between how parents want to be involved and perceive clinicians engage them in the care of their child. Parental preferences for involvement differ in the domains of information sharing, decision making, and power-sharing across a spectrum of parental roles from parents as care provider to care recipient. The PICU setting may place clinicians in a double bind trying to both engage families and protect them from distress. Asking families of critically ill children about their preferences for participation across these domains may improve clinician-family relationships.

Type 1 Diabetes Among East African Immigrant and Nonimmigrant Black Youth in the U.S.

Type 1 diabetes has not previously been described in East African immigrant youth in the United States. The purpose of this study was to compare East African immigrant and nonimmigrant Black youth with type 1 diabetes. Among other clinical and demographic differences, estimated prevalence of type 1 diabetes was nearly four times higher among East African youth in King County, Washington (6.20/1000, 95% confidence interval (CI) [4.49, 7.91] vs. 1.56/1000, 95% CI [1.03, 2.09]) compared to nonimmigrant Black youth. These observations are lost within the Black/African American race classification and additional work is needed to confirm and further explore these findings.

Clinical update on genetic and autoimmune biomarkers in pediatric diabetes.

PURPOSE: The purpose of this clinical update is to review the etiology of diabetes types affecting youth under 20 and describe diabetes-related genetic and autoimmune biomarkers based on the most recent literature. This information will support diabetes care providers' efforts to better explain the complex topic to patients and families. METHOD: A PubMed search identified 396 reviews published from 2008 to 2011 that included the topics of etiology, epidemiology, genetics/epigenetics, pathogenesis, or immunology related to diabetes in youth. The current clinical update includes 19 of these. RESULTS: The majority of youth under 20 years with diabetes have Type 1 diabetes. Other forms of the disease affecting this population include Type 2, monogenic, and secondary diabetes. Genetic and autoimmune biomarkers can help determine the risk and diagnosis of both Type 1 and monogenic diabetes. An accurate diagnosis of diabetes type allows for determination of optimal treatment options. CONCLUSION: The complexity of determining etiology, risk, diagnosis, and treatment for diabetes in youth is increasing with the rate of related genetic and immunologic advances. Diabetes care providers must be able to explain the complex genetic and autoimmune biomarkers used in determining the risk of diabetes, diagnosis of the disease, and identification of treatment options to patients and families.

Migration status in relation to clinical characteristics and barriers to care among youth with diabetes in the US.

Migration status and the accompanying diversity in culture, foods and family norms, may be an important consideration for practitioners providing individualized care to treat and prevent complications among youth with diabetes. Approximately 20 % of youth in the US have ≥1 foreign-born parent. However, the proportion and characteristics of youth with diabetes and ≥1 foreign-born parent have yet to be described. Study participants (n = 3,086) were from SEARCH for Diabetes in Youth, a prospective multi-center study in the US. Primary outcomes of interest included HbA1c, body mass index and barriers to care. Multivariable analyses were carried out using logistic regression and analysis of covariance. Approximately 17 % of participants with type 1 diabetes (T1D) and 22 % with type 2 diabetes (T2D) had ≥1 foreign-born parent. Youth with T1D and ≥1 foreign-born parent were less likely to have poor glycemic control [adjusted odds ratio (OR) (95 % confidence interval): 0.70 (0.53, 0.94)]. Among youth with T2D, those with ≥1 foreign-born parent had lower odds of obesity [adjusted OR (95 % CI): 0.35 (0.17, 0.70)]. This is the first study to estimate the proportion and characteristics of youth with diabetes exposed to migration in the US. Research into potential mechanisms underlying the observed protective effects is warranted.