An assessment of information needs and workflows for emergency service providers and caregivers of children with medical complexity.

BACKGROUND: The goal of Project Austin, an initiative to improve emergency care for rural children who are medically complex (CMC), is to provide an Emergency Information Form (EIF) to their parents/caregivers, to local Emergency Medical Services, and Emergency Departments. EIFs are standard forms recommended by the American Academy of Pediatrics that provide pre-planned rapid response instructions, including medical conditions, medications, and care recommendations, for emergency providers. Our objective is to describe the workflows and perceived utility of the provided emergency information forms (EIFs) in the acute medical management of CMC. METHODS: We sampled from two key stakeholder groups in the acute management of CMC: four focus groups with emergency medical providers from rural and urban settings and eight key informant interviews with parents/caregivers enrolled in an emergency medical management program for CMC. Transcripts were thematically analyzed in NVivo© by two coders using a content analysis approach. The thematic codes were combined into a codebook and revised the themes present through combining relevant themes and developing of sub-themes until they reached consensus. RESULTS: All parents/caregivers interviewed were enrolled in Project Austin and had an EIF. Emergency medical providers and parents/caregivers supported the usage of EIFs for CMC. Parents/caregivers also felt EIFs made emergency medical providers more prepared for their child. Providers identified that EIFs helped provide individualized care, however they were not confident the data was current and so felt unsure they could rely on the recommendations on the EIF. CONCLUSION: EIFs are an easy way to engage parents, caregivers, and emergency medical providers about the specifics of a care for CMC during an emergency. Timely updates and electronic access to EIFs could improve their value for medical providers.

Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study.

BACKGROUND AND OBJECTIVES: Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. METHODS: We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. RESULTS: Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic's impact on family caregiver well-being (mental toll, physical toll). CONCLUSIONS: Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

Caregiver perceptions of in-home COVID-19 testing for children with medical complexity: a qualitative study.

BACKGROUND: In-home direct antigen rapid testing (DART) plays a major role in COVID-19 mitigation and policy. However, perceptions of DART within high-risk, intellectually impaired child populations are unknown. This lack of research could negatively influence DART uptake and utility among those who stand to benefit most from DART. The purpose of this study was to describe caregivers' perceptions of an in-home COVID-19 DART regimen in children with medical complexity, including the benefits and limitations of DART use. METHODS: This qualitative study was a subproject of the NIH Rapid Acceleration of Diagnostics Underserved Populations research program at the University of Wisconsin. We combined survey data and the thematic analysis of semi-structured interview data to understand caregivers' perceptions of in-home COVID-19 testing and motivators to perform testing. Caregivers of children with medical complexity were recruited from the Pediatric Complex Care Program at the University of Wisconsin (PCCP). Data were collected between May and August 2021. RESULTS: Among n = 20 caregivers, 16/20 (80%) of their children had neurologic conditions and 12/20 (60%) used home oxygen. Survey data revealed that the largest caregiver motivators to test their child were to get early treatment if positive (18/20 [90%] of respondents agreed) and to let the child's school know if the child was safe to attend (17/20 [85%] agreed). Demotivators to testing included that the child could still get COVID-19 later (7/20 [35%] agreed), and the need for officials to reach out to close contacts (6/20 [30%] agreed). From interview data, four overarching themes described perceptions of in-home COVID-19 testing: Caregivers perceived DART on a spectrum of 1) benign to traumatic and 2) simple to complex. Caregivers varied in the 3) extent to which DART contributed to their peace of mind and 4) implications of test results for their child. CONCLUSIONS: Although participants often described DART as easy to administer and contributing to peace of mind, they also faced critical challenges and limitations using DART. Future research should investigate how to minimize the complexity of DART within high-risk populations, while leveraging DART to facilitate safe school attendance for children with medical complexity and reduce caregiver burden.

The impact of the COVID-19 pandemic on children with medical complexity.

BACKGROUND: Descriptions of the COVID-19 pandemic's indirect consequences on children are emerging. We aimed to describe the impacts of the pandemic on children with medical complexity (CMC) and their families. METHODS: A one-time survey of Canadian paediatricians using the Canadian Paediatric Surveillance Program (CPSP) was conducted in Spring 2021. RESULTS: A total of 784 paediatricians responded to the survey, with 70% (n = 540) providing care to CMC. Sixty-seven (12.4%) reported an adverse health outcome due to a COVID-19 pandemic-related disruption in healthcare delivery. Disruption of the supply of medication and equipment was reported by 11.9% of respondents (n = 64). Respondents reported an interruption in family caregiving (47.5%, n = 252) and homecare delivery (40.8%, n = 218). Almost 47% of respondents (n = 253) observed a benefit to CMC due to COVID-19 related changes in healthcare delivery, including increased availability of virtual care and reduction in respiratory illness. Some (14.4%) reported that CMC were excluded from in-person learning when their peers without medical complexity were not. CONCLUSION: Canadian paediatricians reported that CMC experienced adverse health outcomes during the COVID-19 pandemic, including disruptions to family caregiving and community supports. They also describe benefits related to the pandemic including the expansion of virtual care. These results highlight the need for healthcare, community and education policymakers to collaborate with families to optimize their health.

Lower Respiratory Tract Infections in Pediatric Patients with Severe Neurological Impairments: Clinical Observations and Perspectives in a Palliative Care Unit.

Pediatric palliative care (PPC) patients with a severe neurologic impairment (SNI) suffer considerable morbidity and increased mortality from lower respiratory tract infections (LRTIs). The indication and choice of antibiotic therapy for bacterial LRTIs are often challenging given the lack of evidence-based treatment recommendations for this vulnerable patient population. We conducted an observational study before the SARS-CoV-2 pandemic in an eight-bed pediatric palliative care inpatient unit. During two years of surveillance, we diagnosed and treated 33 cases of a bacterial LRTI in patients with an SNI; 5 patients were hospitalized with an LRTI more than once. Two patients died from complications due to LRTIs during hospitalization. Three patients (15%) were colonized with multidrug-resistant organisms. An initial antibiotic treatment failed in one-third of the cases; a successful therapy of the LRTI was achieved with broad-spectrum and extended-spectrum penicillins (n = 13; in combination with ß-lactamase inhibitors for n = 5 cases), cephalosporins (n = 13: n = 4 second-generation and n = 9 third-generation cephalosporins; in combination with other substances for n = 5 cases), ciprofloxacin (n = 3), and meropenem plus vancomycin (n = 2) or meropenem (n = 1). A respiratory specimen was obtained in 66.7% of cases with P. aeruginosa, E. coli, and K. pneumoniae accounting for the majority of the detected species. In most cases, there was no definite confirmation that the LRTI was caused by the species detected. The diagnostics and treatment of bacterial LRTIs in PPC patients with an SNI are challenging. The lack of controlled studies and the heterogeneity of this population often necessitate an individual approach. This lack of controlled studies may partly be compensated by a set of diagnostic and antibiotic stewardship criteria.

Caring for Children With Medical Complexity in the Early COVID-19 Pandemic in an Ambulatory Primary Care Setting.

BACKGROUND: Children with medical complexity (CMC) have multiple chronic conditions and require a high level of coordinated healthcare. The risk of COVID-19 among CMC is unclear. OBJECTIVES: We aim to identify and describe the prevalence and experience of COVID-19 among CMC and their caregivers during the initial weeks of the COVID-19 pandemic in the NY metropolitan area. METHODS: We performed a cross-sectional study of children enrolled in a structured clinical program for CMC at a large urban, academic general pediatrics practice in NY. RESULTS: In our patient population (n = 132), 16 patients had a known exposure with parents being the most common exposure in 37.5% (n = 6). Two patients were hospitalized for COVID-19 while the remainder of the confirmed or suspected COVID-19 cases were managed as an outpatient. CONCLUSIONS: Common sources of COVID-19 exposure were family members and home care providers. Almost all of our patients experienced interruption of medical care including missed therapies and visits.

Increased behavioral health needs and continued psychosocial stress among children with medical complexity and their families during the COVID-19 pandemic.

OBJECTIVE: Children with medical complexity (CMC) and their caregivers are at increased risk for multiple psychosocial stressors that can impact child and family well-being and health outcomes. During the COVID-19 pandemic, when access to supports diminished, psychosocial screening and integrated behavioral health (IBH) services in the primary care setting were crucial in identifying and addressing the unique needs of this population METHODS: Universal screening to identify psychosocial needs was implemented in a primary care clinic for CMC that includes IBH services. Data on the prevalence of psychosocial screening and IBH services for young children and their caregivers before and during the COVID-19 pandemic were evaluated RESULTS: Psychosocial screening levels remained stable during the pandemic. Psychosocial needs were identified for 36% of screeners prior to the COVID-19 pandemic and 33% during the COVID-19 pandemic. The need for IBH services increased during the COVID-19 time period resulting in a significant increase in IBH services CONCLUSIONS: For CMC and their caregivers, psychosocial needs identified through psychosocial screening remained high during the pandemic, demonstrating the importance of screening for this population. The need for IBH services during the COVID-19 pandemic increased, underscoring the value and demand for these services particularly during an unprecedented time.

Objetivo: Los niños con complejidades médicas (CMC) y quienes les cuidan están bajo un riesgo en aumento sobre múltiples factores sicosociales de estrés que pueden causar impacto en el bienestar y resultados de salud del niño y la familia. Durante la pandemia COVID-19, cuando disminuyó el acceso al apoyo, los servicios de detección sicosocial y la integrada salud del comportamiento (IBH) en escenarios de cuidado primario fueron cruciales para identificar y manejar las necesidades típicas de esta población. Métodos: La detección universal para identificar necesidades sicosociales se implementó en una clínica de cuidado primario para CMC que incluye servicios IBH. Se evaluó la información acerca de la prevalencia de los servicios de la detección sicosocial e IBH para niños pequeños y quienes les cuidaban antes y durante la pandemia COVID-19. Resultados: Los niveles de detección sicosocial se mantuvieron estables durante la pandemia. Se identificaron las necesidades sicosociales para el 36% de los examinados antes de la pandemia del COVID-19 y 33% durante la pandemia COVID-19. La necesidad de servicios IBH aumentó durante el período de tiempo del COVID-19, lo cual resultó en un aumento significativo en servicios IBH. Conclusiones: Para niños CMC y quienes les cuidan, las necesidades sicosociales identificadas a través de la detección sicosocial se mantuvieron altas durante la pandemia, lo que demuestra lo importante de la detección para este grupo de población. La necesidad de servicios IBH durante la pandemia COVID-19 aumentó, subrayando el valor y demanda de estos servicios en particular durante un momento sin precedente.

Objectif: Les Enfants avec une Complexité Médicale (abrégé ici en français ECM) et les personnes qui prennent soin d'eux sont à un risque plus élevé de facteurs de stress psychosociaux multiples qui peuvent impacter le bien-être de l'enfant et de la famille ainsi que la santé. Durant la pandémie du COVID-19, lorsque l'accès aux soutiens a diminué le dépistage psychosocial et les services de santé comportementale intégrée (SCI) dans les contextes de soins primaires se sont avérés cruciaux pour l'identification et la prise en charge des besoins uniques de cette population. Méthodes: Le dépistage universel afin d'identifier les besoins psychosociaux a été mis en place dans une clinique de soin primaire pour les ECM qui comporte des services SCI. Les données sur la prévalence du dépistage psychosocial et les services SCI pour les jeunes enfants et les personnes prenant soin d'eux avant et après la pandémie du COVID-19 ont été évalués. Résultats: Les niveaux de dépistage psychosocial sont restés stables durant la pandémie. Des besoins psychosociaux ont été identifiés pour 36% des dépistés avant la pandémie du COVID-19 et 33% durant la pandémie du COVID-19. Le besoin de services SCI a augmenté durant la période, résultant en une augmentation importante des services SCI. Conclusions: Pour les ECM et les personnes prenant soin d'eux, les besoins psychosociaux identifiés à travers le dépistage psychosocial est resté élevé pendant la pandémie, démontrant l'importance du dépistage pour cette population. Le besoin de services SCI durant la pandémie du COVID-19 a augmenté, ce qui souligne la valeur et le besoin de ces services surtout durant ces temps sans précédents.

True Resilience: A Look Inside COVID's Effect on Children with Medical Complexity and Their Families.

Purpose of Review: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant difficulties already experienced by these patients and their families. Increased awareness will lead to improvement in the disparities experienced by this population and improve the ability of healthcare providers to care for them. Recent Findings: The number of children living with medical complexity is rapidly increasing. They face unique circumstances which can lead to compromise in care. This population is especially at risk for complications related to COVID, so may have a more prolonged admission with more morbidities. Children of ethnic minorities are also more impacted by severe illness and death. Finally, access to palliative care has been limited, which is a huge part in caring for these children who have life-long medical care needs. Summary: Children with medical complexity have unique circumstances and the entirety of the effect of the coronavirus pandemic on this group is unknown. While the medical world has found ways to adapt, these changes can increase disparities for this population. Given the increase in number of children with medical complexity living in the USA, it is important to continue to consider the unique challenges they face in the current pandemic and improve the care delivery for both the child and his or her family.