Food insecurity in pediatric HIV: understanding a critical challenge in the United States.

Advancing the well-being of individuals living with HIV necessitates attention to social determinants of health, including food insecurity. Through a clinical and community-based needs assessment, we aimed to gain insight into experiences of food insecurity among patients receiving care at a large pediatric HIV outpatient clinic in the Southeastern United States. We adopted a multimodal assessment approach involving a literature review, community profiling, key informant interviews, focus group discussions with staff, patients and parents and a community stakeholder advisory meeting. Our needs assessment demonstrates that food insecurity is an important aspect of the lived experience of children, adolescents and young adults living with HIV. Clinical staff agreed that food insecurity screening should be incorporated into the patient care workflow but ideally only in concert with providing resources that meet their needs. We formulated a recommendation matrix for addressing food insecurity based on priority importance and feasibility. Collaborative relationships between healthcare practitioners and leaders, community-based organizations and local and federal funding sources are vital for enhancing patients' access to sustainable, reliable solutions to this fundamental determinant of health. Our approach provides a tested model for other clinics seeking to identify and alleviate food insecurity among patients.

A Mother's Tears: Contemplating Black Grief.

As we have traversed the last 2 years of the COVID-19 pandemic juxtaposed against an increased awakening to the realities of racial inequities in society and health care, the grief of Black individuals and communities has largely been underrecognized. This reflective essay explores the grief experience of Blacks in the wake of continual losses and acknowledges the impact of racism in these losses. I speak from my experiences as a Black mother, survivor of sibling loss, and pediatric palliative care pediatrician to examine this complex issue and what the medical community can do to stand with Black patients and families in their grief experience.

Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

Will You Hear Me? Have You Heard Me? Do You See Me? Adding Cultural Humility to Resource Allocation and Priority Setting Discussions in the Care of African American Patients With COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has refocused our attention on health care disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision making among African American patients faced with critical illness secondary to COVID-19. In this article, we explore the applications of cultural humility over cultural competency in optimizing the care we provide to African American patients faced with critical health care decisions during this pandemic. In turn, we charge one another as health care providers to consider how ethical principles and guidance can be applied to honor African American patients' unique stories and experiences.

A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources.

CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist to improve and increase access to PPC for children in need. OBJECTIVES: Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC CNA are described. METHODS: A mixed-method descriptive design with multiple stages incorporating different methodological approaches was used. These included literature review, community profile, survey and interview questionnaire development, windshield survey, identifying and interviewing key informants, and quantitative survey of the state's hospice organizations. Key themes (providing PPC, PPC environment, collaboration, and future of PPC) and subthemes emerged, which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. RESULTS: Described in a subsequent article (Johnson K.A. et al.). CONCLUSION: This approach can be used by other state organizations, coalitions, governments, or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care.

Cross-cultural Interactions and Shared Decision-making.

Shared decision-making (SDM) depends on high-quality communication between the physician and the decision maker. The shared beliefs, values, behaviors, and traditions that make up an individual's culture affect the way he or she communicates and receives information and impacts complex decision-making. Cultural differences between medical providers and patients or their families may lead to wrong assumptions, disparate priorities, a lack of shared goals, and conflict. When it comes to SDM in cross-cultural encounters, we recommend that clinicians acknowledge their own cultural beliefs and values (including those stemming from the culture of medicine), maintain awareness of potential biases and assumptions, appreciate the complexity of patient and family identities and narratives, practice cultural humility, understand the moral relevance of culture, and respect patient and family preferences for SDM. We present a case that illustrates many of these issues.

Determining comorbidities and quality of life among pediatric survivors of extracorporeal life support.

PURPOSE: The purpose of this study is to describe health-related quality of life (HRQoL) and the prevalence of comorbidities in pediatric survivors of extracorporeal life support (ECLS) and to determine risk factors for poor HRQoL. MATERIALS: The study design was a retrospective cohort and prospective follow-up study of patients who received ECLS in the pediatric intensive care unit at Egleston Children's Hospital from 2006 to 2013. Quality of life was measured using the Pediatric Quality of Life Inventory (PedsQL 4.0) completed by either parent proxies or the survivors themselves. Clinical data were obtained via review of electronic medical records. RESULTS: Surveys were sent to 37 parent proxies or survivors with a response rate of 43.2%. Survivors ranged in age from 2 to 21 years with follow-up range of 1 to 7.5 years. Primary respiratory failure due to pneumonia was the reason for ECLS in 81.3%. Mean total PedsQL scores were 73.9 (±21.3) with 11 survivors (69.8%) having a normal quality of life. None of the clinical characteristics (including age, ECLS length, or length of stay) correlated with PedsQL scores. The most commonly reported comorbidities included readmission les than 1 year after ECLS (46.7%) and "problems with school" (25%). CONCLUSIONS: Survivors of pediatric extracorporeal membrane oxygenation can exhibit good HRQoL scores yet may be at risk for long-term adverse effects, such as lower psychosocial functioning and problems with school. A rigorous prospective investigation of the long-term follow-up of this patient cohort is needed to further evaluate these conclusions and to work toward the best possible outcomes for recipients of this resource-intensive therapy.

The role of counseling for obstetric fistula patients: lessons learned from Eritrea.

OBJECTIVE: The goal of this study was to evaluate the first formal counseling program for obstetric fistula patients in Eritrea. METHODS: To evaluate the impact of the counseling program, clients were interviewed both before pre-operative counseling and again after post-operative counseling. A questionnaire was used in the interviews to assess women's knowledge about fistula, self-esteem, and their behavioral intentions for health maintenance and social reintegration following surgical repair. In addition, two focus groups were conducted with a total of 19 clients assessing their experiences with the surgical care and counseling. RESULTS: Data from the questionnaires revealed significant improvements in women's knowledge about fistula, self-esteem, and behavioral intentions following counseling. Focus group data also supported increased knowledge and self-esteem. CONCLUSION: Evaluation of the short-term impact of an initial formal counseling program for fistula patients in sub-Saharan Africa affirmed the positive effects that such a program has for fistula patients, with increased knowledge about the causes of fistula, fistula prevention and enhanced self-esteem. PRACTICAL IMPLICATIONS: Culturally appropriate counseling can be incorporated into services for surgical repair of obstetric fistula in low-resource settings and has the potential to improve the physical and mental well-being of women undergoing fistula repair.