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.

Application of Critical Race Theory in Palliative Care Research: A Scoping Review.

CONTEXT: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the contribution of structural racism to outcomes is paramount to promoting equity. OBJECTIVES: We examined portrayals of race and racial differences in outcomes in the palliative care literature and created a framework using critical race theory (CRT) to aid in this examination. METHODS: We reviewed the CRT literature and iteratively developed a rubric to examine when and how differences between races are described. Research articles published in The Journal of Pain and Symptom Management presenting empiric data specifically including findings about racial differences were examined independently by three reviewers using the rubric. RESULTS: Fifty-seven articles met inclusion criteria. Articles that specifically described racial differences were common in the topic areas of quality (75% of articles), hospice (53%), palliative care services (40%) and spirituality/religion (40%). The top three reasons posited for racial differences were patient preference (26%), physician bias (23%), and cultural barriers (21%). Using the CRT rubric we found that 65% of articles posited that a racial difference was something that needed to be rectified, while articles rarely provided narrative (5%) or other data on perspectives of people of color (11%) to explain assumptions about differences. CONCLUSION: Palliative care research frequently highlights racial differences in outcomes. Articles that examine racial differences often assume that differences need to be fixed but posit reasons for differences without the narratives of those most affected by them.

Relationship of race and ethnicity on access, timing, and disparities in pediatric palliative care for children with cancer.

PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. METHODS: Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. RESULTS: Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation (p = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment (p = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p = 0.009) CONCLUSION: Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer.

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.

Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources.

CONTEXT: Pediatric palliative care (PPC) can improve quality of life of children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, and PPC resources and personnel are often inequitably distributed toward urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access. OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services. METHODS: The CNA used a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion article, entitled "A methodological approach to conducting a statewide community needs assessment of pediatric palliative care and hospice resources." RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility and high importance recommendations included expanding PPC education for both providers and patients and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services. CONCLUSION: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.

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.

Experiences of women seeking medical care for obstetric fistula in Eritrea: implications for prevention, treatment, and social reintegration.

This article presents findings from qualitative interviews with women seeking medical care for obstetric fistula in Eritrea. The interviews were designed to inform programme design for the prevention and treatment of obstetric fistula. Interviews were conducted with 11 new fistula repair patients, 15 women returning for follow-up for their fistula repairs, and five accompanying family members at Massawa Hospital in the Northern Red Sea Zone of Eritrea during November-December 2004. The women described long delays in accessing emergency obstetric care due to delayed recognition of the seriousness of the problem and lack of transportation from remote villages. Follow-up patients described improvements in their conditions, but many continued to have problems with incontinence and sexual health. Both new and returning patients lacked specific information about their condition, what to expect in terms of treatment and recovery, and how to care for themselves. The findings point to a need for community mobilization and education on safe motherhood for prevention of fistula, as well as for improved information, counselling, follow-up, and social services for women who develop obstetric fistulas.

Surgical management of complex obstetric fistula in Eritrea.

OBJECTIVES: To evaluate the incidence of and demographic characteristics associated with obstetric fistula in Eritrea. To determine the outcomes of surgical repair of complex fistula in Eritrea by a visiting surgical team. METHODS: A surgical team comprising expert gynecologic surgeons traveled to Eritrea in September 2004. We evaluated 50 patients with genitourinary fistula and performed surgical repairs of these fistulas on 37 women via both vaginal and abdominal approaches. Demographic and basic medical data were obtained at the time of evaluation, and follow-up questionnaires were completed at 4 weeks postoperative. RESULTS: The majority of the women had fistulas related to obstructed labor at their first pregnancy unattended by any healthcare professional. The average duration of labor was 3 days, and more than half had resulted in stillbirths. The rate of successful repair in women with primary vesicovaginal fistulas (VVF) was 63%, and that in women with recurrent vesicovaginal fistulas was 61%. Two women required urinary diversion procedures because of the severity of the damage to the genital tract. Urethral reconstruction in women with urethrovaginal fistulas (UVFs) was successfully accomplished in 77% of patients. The rate of successful repair of rectovaginal fistulas (RVFs) was 87%. CONCLUSIONS: We have demonstrated that a team of specialized surgeons can successfully accomplish surgical procedures and repairs of very complex urinary tract fistulas in a very short mission to a resource-poor nation.