Individual and Systemic Barriers Blocking Community Health Workers from Helping the Seriously Ill.

Background: Palliative care is a valuable component of health care that improves a patient's quality of life, yet its availability to patients with serious chronic illness remains relatively low. Due to their knowledge of community preferences and ability to improve patient education and access to care, community health workers (CHWs) can increase palliative care usage by patients. Notably, barriers to CHWs helping patients with serious chronic illness remain poorly understood. Objective: Explore the perception of barriers CHWs feel they face when attempting to support the health care of patients with serious chronic illness. Design: Qualitative semistructured individual interviews of CHWs and qualitative descriptive analysis. Setting/Subjects: Twelve CHWs who have worked with patients with serious chronic illness were recruited from the Johns Hopkins Healthcare LLC and the Baltimore Alliance for Careers in Healthcare organizations to virtually participate. Results: CHWs perceived both active and passive barriers that obstructed their efforts to work with seriously ill patients. CHWs shared that these barriers were dependent on themselves, their peers, and their work environments. Prevalent themes included interprofessional conflict, poor health care worker understanding of the CHW's role, and lack of access to quality resource organizations. CHWs noted job-specific training, better means to identify needed resources for patients, and inclusive health care teams as solutions to support their professional goals, while helping patients with serious illness. Conclusions: There are multiple perceived barriers to CHWs helping seriously ill patients. CHWs aiding patients with serious illness can be supported through better job training, better resource management tools, and improved communication between health care team members.

"They Would Lift My Spirits": Sources of Support for Family Surrogate Decision-Makers at the End of Life.

Surrogate decision-makers make critical decisions for loved ones at the end of life, and some experience lasting negative psychological outcomes. Understanding whom they rely on for support and the types of support they value may inform nursing care and that of other health team members who work with surrogates. The purpose of the study was to explore decision support and other types of support provided to surrogate decision-makers at the end of life of their loved one and perceived usefulness of the support. This secondary analysis of data from a mixed-methods study involved the examination of the transcripts of qualitative interviews with 13 surrogate decision-makers in the United States, conducted between 2010 and 2014. A constant comparative method was used to identify common themes surrounding surrogate decision support at the end of life. Surrogates valued advance directives and conversations with their loved one about treatment preferences. Surrogates described involving many different types of people in decision-making and other types of support. Finally, surrogates appreciated being reassured that they were doing a good job in making decisions and seemed to seek out this type of affirmation from various sources including the health care team, family, and friends. Nurses are well-positioned to provide this affirmation because of the time that they spend caring for the patient and family. Future research should further explore the concept of affirmation of surrogates in their role as a means of support as they make decisions for a loved one.

Developing a Tool for Measuring Parent Knowledge and Barriers to Supportive School Integration After Diagnosis of Childhood Cancer.

Background: Children treated for cancer are at risk for long-term neurocognitive late effects that can impact school attainment, employment, and quality of life. Obtaining formal education support can be critical to later success but may depend upon parent knowledge and ability to access needed support. The purpose of this study was to develop and evaluate the psychometric properties of a scale to measure the perceived support that parents received upon their child's return to school during or after cancer treatment. Methods: Exploratory factor analyses evaluated the construct validity of survey items. Cronbach's alpha was used to test the internal consistency and independent t-tests evaluated the concurrent criterion validity of resulting subscales. Results: The exploratory factor analyses resulted in two subscales, Barriers to Supportive School Integration (13 items) and Parent School Integration Knowledge (three items). All items loaded at least 0.49 onto each factor, with Cronbach's alpha values of 0.927 and 0.738, respectively. The Knowledge subscale additionally demonstrated concurrent criterion validity; higher Knowledge subscale scores were found among parents who reported receiving information about treatment-related cognitive/school problems from healthcare providers (p < .001). Discussion: The Parent School Integration Knowledge and Barriers to Supportive School Integration subscales demonstrated preliminary evidence for good construct validity and internal consistency. These subscales may be used in future research to assess parent knowledge, barriers to receiving support, and overall experience of supportive school integration after the diagnosis of pediatric cancer.

Optimizing cancer survivorship in primary care: patient experiences from the Johns Hopkins Primary Care for Cancer Survivors clinic.

PURPOSE: The optimal delivery of survivorship care, particularly within primary care, remains poorly understood. We established the Johns Hopkins Primary Care for Cancer Survivors (PCCS) clinic in 2015 to address care challenges unique to cancer survivors. To better understand the care from the PCCS clinic, we interviewed patients about their perception of care delivery, survivorship care, and care coordination. METHODS: We conducted semi-structured interviews with adult survivors of any cancer type seen in the PCCS clinic. A priori and in vivo coding of verbatim transcripts was part of the thematic analysis. RESULTS: Seventeen cancer survivors were interviewed (ages 37-78). Themes that emerged were (1) optimal care and (2) the PCCS experience. Subthemes respectively included the ideal role of the primary care provider (1), telehealth/COVID-19 challenges and opportunities (1), patient-derived value from the PCCS clinic (2), and improving the PCCS model (2). Overall, PCCS patients expected and experienced high-quality, comprehensive primary care by providers with cancer survivorship expertise. Patients reported telehealth benefits and challenges for survivorship care during the COVID-19 pandemic. CONCLUSIONS: PCCS patients perceived receiving high-quality primary care and valued being seen in a primary care-based survivorship clinic. The PCCS clinic can serve as a model of primary care-based cancer survivorship. IMPLICATIONS FOR CANCER SURVIVORS: Ideal primary care provider roles and care coordination are important factors for high-quality survivorship care and can be provided by a specialized cancer survivorship clinic in primary care.

Improving cancer care for underserved populations in an academic and community practice setting: protocol for a community health worker pilot navigation programme.

INTRODUCTION: Delaying cancer treatment following diagnosis impacts health outcomes, including increasing patient distress and odds of mortality. Interventions to promote timely healthcare engagement may decrease patient-reported stress and improve quality of life. Community health workers (CHWs) represent an enabling resource for reducing delays in attending initial oncology treatment visits. As part of an ongoing programme evaluation coordinated by the Merck Foundation, we will implement a pilot navigation programme comprising CHW-conducted needs assessments for supporting patients and their caregivers. We aim to investigate (1) the programme's influence on patients' healthcare utilisation within the period between their first diagnosis and initial treatment visit and (2) the logistic feasibility and acceptability of programme implementation. METHODS AND ANALYSIS: We will employ a hybrid implementation design to introduce the CHW navigation programme at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. CHW team members will use a consecutive sampling approach. Participants will complete the Problem-Checklist, Chronic Illness Distress Scale and the Satisfaction with Life Domains instruments. CHWs will provide tailored guidance by sharing information available on the Johns Hopkins Electronic Resource databases. The investigators will evaluate patients' time to initial oncology treatment and healthcare utilisation by reviewing electronic medical records at 3 and 6 months postintervention. Bivariate analyses will be completed to evaluate the relationships between receiving the programme and all outcome measures. ETHICS AND DISSEMINATION: This study's protocol was approved by the Johns Hopkins School of Medicine's institutional review board (IRB00160610). Informed consent will be obtained by phone by the CHW navigator. Dissemination planning is ongoing through regular meetings between members of the investigator team and public members of two community advisory groups. Study plans include collaborating with other experts from the Johns Hopkins Institute for Clinical and Translational Research and the Johns Hopkins Center for Health Equity for ideating dissemination strategies.

Integrative review of school integration support following pediatric cancer.

PURPOSE: This study aims to understand parents' experiences of school integration support for their child's transition to K-12 schooling during or after cancer treatment. METHODS: This integrative literature review used PubMed, CINAHL, PsycINFO, and Embase databases and included articles from January 2000 to July 2022 describing parent experiences with support from healthcare providers, school faculty/systems, and school integration programs. This review was guided by an adapted School Re-Entry Model and used constant comparison to identify common themes and guide synthesis. The Johns Hopkins Evidence and Quality Guide was used to appraise article quality and level of evidence. RESULTS: Thirty-five articles were included in the final review: seventeen qualitative, fourteen quantitative, and four mixed or multi-method designs. Parents reported experiences receiving support from healthcare providers, school faculty/systems, school integration programs, and "other" sources. Parents reported both facilitators and barriers to communication, knowledge, and the process of receiving school integration support. CONCLUSIONS: Parents found neuro/psychologists highly supportive but reported limited support from other healthcare providers. Most parents reported mixed experiences with school faculty and reported many barriers to school system support. Parents reported positive experiences with school integration programs; however, limited programs were available. IMPLICATIONS FOR CANCER SURVIVORS: Future programs and research should focus on addressing identified barriers and facilitators of school integration support. Further work is also needed to understand a wider range of parent experiences during school integration.

Strategies for success in a nursing PhD program and beyond.

PURPOSE: The purpose of this article is to inform newly enrolled PhD students of program expectations, strategies for success, and next steps in the career of a nurse scientist. METHODS: We used empirical evidence and insights from the authors to describe strategies for success during a nursing PhD program and continued career development following graduation. FINDINGS: Measures of success included maintaining health, focus, integrity, and a supportive network, identifying mentors, pursuing new knowledge and advancing research to transform health outcomes. CONCLUSION: Nursing PhD programs help to shape future researchers and leaders. Choosing to obtain a PhD in nursing is an investment in oneself, the discipline, and the science. CLINICAL RELEVANCE: Nursing PhD programs offer opportunities to advance science, impact healthcare and health outcomes, and prepare for a variety of career opportunities. Informing newly enrolled PhD students may better prepare them for what lies ahead and facilitate student retention.