Family challenges in personal transportation of children with medical complexity.

PURPOSE: This study aimed to explore the family experience and associated challenges of transporting children with medical complexity (CMC) in personal vehicles. METHODS: Parents/guardians of CMC in Maryland were recruited to participate in an audiotaped, semi-structured interview. Conventional content analysis was applied to transcripts. RESULTS: Data from 29 participants who indicated use of personal vehicles to transport their CMC were included in the analysis. Transportation challenges were common, and analysis revealed the following themes: 1) challenges transitioning in/out of the vehicle: excess planning time, child factors (e.g., weight), equipment factors (e.g., wheelchair), physical and environmental factors, 2) safety and comfort: CMC positioning/restraints, driver distraction, 3) financial challenges: travel costs related to medical care, accessible modification costs, transportation equipment costs, insurance delays in equipment coverage, 4) adverse family repercussions: parental physical health, isolation, and 5) evolving and unpredictable transportation needs. CONCLUSION: Families with CMC experience multifactorial challenges that impact all phases of travel in personal vehicles and negatively impact child and family safety, access to community and medical care, family finances, and overall well-being. Health care providers can support families by identifying transportation challenges that contribute to health inequities, tailoring solutions to the family's unique needs, and advocating at a policy level to promote change.

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making.

OBJECTIVE: Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making. STUDY DESIGN: The study design comprised semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts, and descriptive analyses were applied to surveys. RESULTS: Thematic saturation was reached with 27 families (15 NICU families and 12 post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants' current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. The family desire to discuss costs did not vary by family financial status. Parents described their infant's health care costs as: "We are drowning"; and "We'll never pay it off." CONCLUSION: Most parents were worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for the future financial realities of pediatric medical complexity. KEY POINTS: · Many families want to discuss costs with NICU clinicians.. · Some families want costs to be a part of medical decisions.. · Few families currently discuss costs with NICU providers..

Paying for Pediatric Home Health Care: How Families of Children With Medical Complexity Navigate Gaps in Coverage.

Limited private and public financing of home health care for children with medical complexity can have harmful and costly consequences. Little is known of how parents and professionals in the United States navigate coverage for these services or how payer restrictions are shaping service quality. Qualitative interviews were conducted with families and professionals (eg, prescribers, providers, administrators of pediatric home health care [PHHC]) caring for children with medical complexity. Interview transcripts were analyzed using inductive thematic analysis. In total, 47 families and 45 professionals from across 31 states and the District of Columbia had experiences with the full range of PHHC services. Participants detailed the need to patch together multiple insurances and payment programs to cover a child's home health needs. They described nontransparent eligibility determinations that do not reflect the diagnostic uncertainty and static functional status that is common for many children. Coverage denials are common, leaving gaps in care that can potentiate downstream cost escalation. Evidence-based health care reform must ensure that children get the PHHC needed to maintain function and reduce the need for hospital-based services. Recommendations are offered to improve PHHC financing and care for the most medically vulnerable children and their families.

Lived Experience of Pediatric Home Health Care Among Families of Children With Medical Complexity.

Background. For children with complex medical conditions, pediatric home health care is a chronic need. It is a clinical service delivered entirely outside of clinical settings, granting families unparalleled expertise regarding service quality. Methods. Telephone interviews with parents whose children have extensive experiences with home health care. Results: Five themes emerged: (1) benefits of home health care include child survival and family stability; (2) family life is inextricable from home health care schedules, staffing, and services; (3) home health care gaps threaten family physical, mental, and financial well-being; (4) Out-of-pocket costs are common; and (5) families must fight for services as their children's medical conditions evolve. Conclusions. Families understand better than prescribers, providers, or policy makers what is working, and what is not, with home health care. Family expertise should be the foundation for training other families, clinicians, and home health care agencies, and should be a central component of policy and advocacy in this area.

The Pediatric Home Health Care Process: Perspectives of Prescribers, Providers, and Recipients.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often require pediatric home health care (PHHC) to meet their daily intensive care needs. Pediatricians are central to planning, implementing, and maintaining quality PHHC for CMC, yet a comprehensive road map for this process is lacking. With this national study, we aim to fill that gap. METHODS: Semistructured interviews were conducted with parents and professionals from the 10 US Health Resources and Services Administration regions. Parents were recruited via advocacy groups for families of CMC; professionals with experience with PHHC for CMC were identified by using purposive and snowball sampling. Interview transcripts were qualitatively analyzed for themes. RESULTS: A comprehensive process of prescribing, providing, and maintaining PHHC requires 5 steps: identifying needs, investigating options, developing plans of care, initiating services, and navigating evolving needs. The success of the PHHC process is built on knowledge, anticipation, and early identification of needs; communication; care-coordination infrastructure; skilled home health providers; and the parent-provider relationship. CONCLUSIONS: Many CMC require PHHC to live safely outside of the hospital. Although the PHHC process involves multiple steps and participants, pediatricians' understanding of the process is the foundation of PHHC success. Fostering interagency relationships, increasing longitudinal care coordination, and investing in the PHHC infrastructure may reduce the burden placed on families and CMC as they navigate the complex process of PHHC.

Neonatologist training in communication and palliative care.

Neonatologists receive highly varied and largely inadequate training to acquire and maintain communication and palliative care skills. Neonatology fellows often need to give distressing news to families and frequently face unique communication challenges. While several approaches to teaching these skills exist, practice opportunities through simulation and role play will likely provide the most effective learning.

Ethical Questions about Platelet Transfusions at the End of Life.

This case of platelet transfusion in palliative care illustrates a common dilemma in transfusion medicine: approval of the use of a scarce, yet potentially life-saving, resource. As in this case, these decisions often involve seriously ill patients with acute needs and evolving goals of care. The use of resources to treat the patient at hand must be balanced against maintaining adequate resources to treat future patients. In this setting, the ethical principles of beneficence and social justice are in conflict.

Teaching antenatal counseling skills to neonatal providers.

Counseling a family confronted with the birth of a periviable neonate is one of the most difficult tasks that a neonatologist must perform. The neonatologist's goal is to facilitate an informed, collaborative decision about whether life-sustaining therapies are in the best interest of this baby. Neonatologists are trained to provide families with a detailed account of the morbidity and mortality data they believe are necessary to facilitate a truly informed decision. Yet these complicated and intensely emotional conversations require advanced communication and counseling skills that our current fellowship-training strategies are not adequately providing. We review educational models for training neonatology fellows to provide antenatal counseling at the threshold of viability. We believe that training aimed at teaching these skills should be incorporated into the neonatal-perinatal medicine fellowship. The optimal approaches for teaching these skills remain uncertain, and there is a need for continued innovation and outcomes-based research.

Trisomy 18 and complex congenital heart disease: seeking the threshold benefit.

A prenatal diagnosis of ductal-dependent, complex congenital heart disease was made in a fetus with trisomy 18. The parents requested that the genetic diagnosis be excluded from all medical and surgical decision-making and that all life-prolonging therapies be made available to their infant. There was conflict among the medical team about what threshold of neonatal benefit could outweigh maternal and neonatal treatment burdens. A prenatal ethics consultation was requested.

Physician reimbursement for critical care services integrating palliative care for patients who are critically ill.

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes.

Discharge of infants from NICU to Latino families with limited English proficiency.

Assess the needs of Latino families with limited English proficiency (LEP) whose infant is discharged from the NICU. Parent interviews at discharge and 1 month later. Thirty-six mothers were interviewed. Thirty nine percentage had <8th grade education; half earned <$10,000 annually. Twenty-eight percentage had no primary support person inside the US. Only half felt very prepared for their infants' discharge. Many expressed general worry about their infant's medical condition (53%) and development (81%), but few (15%) could identify specific risk factors. One-third of families sought emergency medical care for their infant within 1 month of discharge. Less than half were aware of early intervention programs. Safe infant discharge from the NICU must address families' needs. Latino parents with LEP have deficits in knowledge about their infant's medical condition and available resources that place these vulnerable infants at further risk.

Neonatologist training to guide family decision making for critically ill infants.

OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING: Neonatal-perinatal training programs in the United States. PARTICIPANTS: Graduating fellows in their final month of fellowship. MAIN OUTCOME MEASURES: Fellows' perceived training and preparedness to communicate with families about decision making. RESULTS: The response rate was 72%, representing 83% of accredited training programs. Fellows had a great deal of training in the medical management of extremely premature and dying infants. However, they reported much less training to communicate and make collaborative decisions with the families of these infants. More than 40% of fellows reported no communication training in the form of didactic sessions, role play, or simulated patient scenarios and no clinical communication skills training in the form of supervision and feedback of fellow-led family meetings. Fellows felt least trained to discuss palliative care, families' religious and spiritual needs, and managing conflicts of opinion between families and staff or among staff. Fellows perceived communication skills training to be of a higher priority to them than to faculty, and 93% of fellows feel that training in this area should be improved. CONCLUSIONS: Graduating neonatology fellows are highly trained in the technical skills necessary to care for critically ill and dying neonates but are inadequately trained in the communication skills that families identify as critically important when facing end-of-life decisions.