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.

Parental Depression Symptoms at Neonatal Intensive Care Unit Discharge and Associated Risk Factors.

OBJECTIVE: To investigate the prevalence and risk factors associated with parental depressive symptoms at neonatal intensive care unit (NICU) discharge and determine the relationships among depressive symptoms, stress, and social support. STUDY DESIGN: Parents participating in the Giving Parents Support trial (n = 300) were surveyed before NICU discharge. Depressive symptoms, stress, and social support were assessed using the Center for Epidemiological Studies Depression Scale (CESD-10), Parental Stressor Scale: Neonatal Intensive Care Unit (PSS:NICU), Perceived Stress Scale (PSS-10), and Multidimensional Scale of Perceived Social Support (MSPSS). Regression analyses examined relationships among depressive symptoms, stress, social support, and parent/infant factors. RESULTS: At NICU discharge, 45% of parents reported depressive symptoms and 43% reported elevated perceived stress. Increased odds of elevated depressive symptoms were associated with older gestational age (P = .02), female infant (P = .02), and longer length of stay (P = .045). Odds of depression were 7.87 (95% CI, 2.15-28.75) for parents of infants with gestational age ≥37 weeks compared with gestational age <28 weeks. Parental NICU stress was higher in younger parents (P < .01). Depressive symptoms were positively associated with parental stress. Each 1-point increase in PSS:NICU score was associated with a 2.1-point (95% CI, 1.6-2.9; P < .001) increase in CESD-10 score. Social support was inversely associated with depressive symptoms. CONCLUSION: The prevalence of depressive symptoms in parents at NICU discharge was high, even among parents of term infants. Older gestational age, greater parental stress, and lower levels of social support were strong correlates of depressive symptoms. Strategies to support parents, including depression screening, stress reduction strategies, and mental health referrals, are needed.

Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit.

OBJECTIVE: Investigate relationships among neonatal intensive care unit (NICU) parent demographics, reported stress and social support. DESIGN: Cross-sectional observation. SETTING: Tertiary referral NICU in Mid-Atlantic USA. PATIENTS: Parents (n=300) in the Giving Parents Support trial at enrolment. MEASURES: Psychometric scales measured general stress, parental stress, NICU stress and social support. Demographic variables included education level, health insurance type, race, relationship status, age and gender. Length of stay was used to control for illness severity. Associations and potential modifying effects were evaluated using linear regression. RESULTS: Having less than a college degree (b=-2.52, SE=0.91) and female parent gender (b=-3.42, SE=1.47) were associated with lower parental stress scores. Older age in years was associated with higher parental stress scores (b=0.21, SE=0.07) but lower NICU stress scores (b=-0.01, SE=0.01). Greater social support scores were associated with lower scores of general (b=-2.76, SE=0.39) and parental stress (b=-1.71, SE=0.47). Less than a college degree (b=-0.26, SE=0.11), Medicaid insurance (b=-0.43, SE=0.11) and black race (b=-0.56, SE=0.12) were associated with decreased social support scores. Level of social support modified the relationship between education and parental stress, with higher social support decreasing education-based differences in parental stress scores (p=0.049). CONCLUSION: Sociodemographic risk factors may not infer stress or risk in the anticipated direction. Practice and future research should focus on identifying and supporting NICU families at high risk for stress and low support. TRIAL REGISTRATION NUMBER: NCT02643472.

Length of Stay and Barriers to Discharge for Technology-Dependent Children During the COVID-19 Pandemic.

BACKGROUND AND OBJECTIVE: During the coronavirus disease 2019 pandemic, technology-dependent children are at risk of encountering barriers to hospital discharge because of limits to in-home services. Transition difficulties could increase length of stay (LOS). With this study, we aim to (1) evaluate change in LOS and (2) describe barriers to hospital discharge between prepandemic and early pandemic periods for technology-dependent children. METHODS: A retrospective chart review of technology-dependent children discharged from an acute and specialty pediatric hospital within a single urban area between January 1 and May 28, 2020 was conducted. Technology dependence was defined by using a validated complex chronic condition coding system. Patients discharged prepandemic and during the pandemic were compared. Outcomes included LOS and the number and type of discharge barriers (a factor not related to a medical condition that delays discharge). Multivariate regression modeling and parametric and nonparametric analysis were used to compare cohorts. RESULTS: Prepandemic, 163 patients were discharged, and 119 were discharged during the early stages of the pandemic. The most common technology dependence was a feeding tube. The unadjusted median LOS was 7 days in both groups. After adjusting for patient-level factors, discharge during the pandemic resulted in a 32.2% longer LOS (confidence interval 2.1%-71.2%). The number of discharge barriers was high but unchanged between cohorts. Lack of a trained caregiver was more frequent during the pandemic (P = .03). CONCLUSIONS: Barriers to discharge were frequent for both cohorts. Discharge during the pandemic was associated with longer LOS. It was more difficult to identify a trained caregiver during the pandemic.

Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases.

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.

Simulation for Neonatal Endotracheal Intubation Training: How Different Is It From Clinical Practice?

INTRODUCTION: Neonatal endotracheal intubation is a critical skill that is difficult for learners to acquire even with simulation-based training (SBT). Trainees prefer clinical experiences over SBT. The objective of the study was to explore the differences between SBT and clinical practice in acquiring neonatal intubation skills to inform mannequin design and to improve fidelity. METHODS: A basic qualitative study using semistructured interviews was conducted to determine the experience of newly competent trainees (second- and third-year neonatal-perinatal medicine fellows) and their instructors in developing intubation skills. Participants were asked to compare learning through SBT with clinical practice in terms of context, equipment, and environment. Their responses were analyzed using an inductive approach. RESULTS: Thirty-two participants (20 fellows and 12 faculty) indicated that SBT does not equal the real experience. Specifically, the look, feel, and function of the simulators differ enough from the real patient and the clinical environmental that they do not elicit the desired learning responses. The clinical environment prompted heightened emotions and had a chaotic atmosphere that was not fully captured by SBT. Participants suggested that programs use SBT in the initial phases of training only to gain basic skills and they provided several solutions for mannequin and SBT session design. CONCLUSIONS: Simulation-based training does not fully prepare neonatal-perinatal medicine fellows for neonatal intubation. Mannequins with unique active features, such as multiple airway configurations, slipperiness, secretions, and softer textures should be developed. Realistic environments that replicate the interprofessional nature and stressors of the clinical environment might better prepare learners for the complexity of clinical practice.

Parental resilience and psychological distress in the neonatal intensive care unit.

OBJECTIVE: To evaluate the associations between parental resilience and psychological distress during the neonatal intensive care unit (NICU) hospitalization. STUDY DESIGN: Observational cohort study of parents of preterm infants (n = 45) admitted to a NICU between December 2017-October 2019. Data on resilience and psychological distress were collected using validated scales. Regression analysis was used to evaluate associations. RESULT: One-third of NICU parents screened positive for depression or anxiety. There were no identified sociodemographic factors or parental engagement activities associated with resilience. Parents with higher resilience had lower scores on depression and anxiety screens. However, resilience alone was not a predictor for a positive depression or anxiety screen (aOR 0.93, CI 0.86-1.00; aOR 0.95, CI 0.89-1.02, respectively). CONCLUSION: Resilience may be associated with lower scores on depression and anxiety screens but is not an independent predictor for a positive screen during the early NICU hospitalization.

Giving parents support: a randomized trial of peer support for parents after NICU discharge.

BACKGROUND: Peer support during inpatient hospitalization has been recommended for NICU parents and can improve maternal mental health. Less is known about the impact of peer support after NICU discharge on parental mental health and infant healthcare utilization. METHODS: Three hundred families of infants approaching discharge from a Level IV NICU were randomized to receive a care notebook (control) or care notebook plus peer support for 12 months (intervention). Participants reported on measures of stress, depression, anxiety, self-efficacy, and infant healthcare utilization. Analysis compared outcomes between control and treatment groups. RESULTS: Parental depression, anxiety, stress, and self-efficacy improved significantly for all participants, yet there were no differences between control and intervention groups. Infant ED visits, hospitalizations, immunization status, and developmental status at 12 months did not differ between groups. CONCLUSIONS: Peer support after NICU discharge did not improve self-reported parental mental health measures or infant healthcare utilization. CLINICAL TRIAL REGISTRATION: NCT02643472.

Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

Chronic Pancytopenia due to Centrally Mediated Hypothermia in Two Children with Severe Neurological Impairment.

We report on recurrent pancytopenia over five years in two children with severe impairment of the central nervous system. Assessment by hematology did not identify an etiology, including bone marrow biopsy in one. Both patients had sustained normalized blood cell counts following interventions to maintain or return to a temperature above 33 °C. Acute cytopenias following medically induced and environmental hypothermia have been reported. Recurrent pancytopenia due to centrally mediated hypothermia in patients with severe neurological impairment is often not recognized, putting such children at risk for unnecessary testing and transfusions. We provide a practical approach to management that is feasible for caregivers in the home setting with suggestions for monitoring.

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.

The Giving Parents Support Study: A randomized clinical trial of a parent navigator intervention to improve outcomes after neonatal intensive care unit discharge.

Parents of infants hospitalized in a neonatal intensive care unit (NICU) experience increased anxiety and stress, which may persist after discharge. The rationale and design of a randomized clinical trial assessing the impact of a 1-year, post-discharge, peer support intervention (parent navigation) on parental mental health and infant health care utilization is described. Qualitative methods guided the adaptation of an existing parent support program to target emotional and resource-related needs of NICU families. Approximately 300 parent-infant dyads were enrolled at discharge and randomized to either receive a care notebook (control group) or a parent navigator and a care notebook (intervention group). We aim to determine if the parent navigator intervention: 1) increases self-efficacy and decreases stress in parents, 2) decreases overall levels of anxiety and depression in parents, 3) decreases infant hospitalizations and emergency department visits, and 4) increases adherence to infant vaccination recommendations during 1 year of follow-up. Standardized, self-reported psychological scales to assess parent depression, anxiety, self-efficacy and social support were administered at baseline (NICU discharge) and at 1-week, 1-, 3-, 6- and 12-month intervals. Infant immunization status and health care utilization during the study period were also assessed. This paper reviews challenges and successes during implementation. If this intervention improves outcomes, NICUs may choose to provide similar parent navigation services for infants and families transitioning from the NICU to home. This study was registered with ClinicalTrials.gov (NCT02643472) on December 31, 2015.

Learning to deliver care in a medical home: a qualitative analysis of residents' reflections on practice.

OBJECTIVE: We used online structured reflection to improve residents' understanding of care delivery in the medical home. METHODS: Third-year pediatric residents participated in an online curriculum on delivering effective, patient-centered primary care in the medical home to children with special health care needs. Residents were prompted to respond to questions designed to stimulate reflection. We qualitatively assessed their responses, graded their depth of reflection, and provided structured feedback. RESULTS: Residents identified aspects of their practice consistent with medical home principles. Depth of reflection increased over time. Residents realized they needed to better understand families' financial, emotional, and social needs and increase families' involvement in care planning. Residents identified systems issues and practice changes to improve care delivery. CONCLUSIONS: Online reflective writing with feedback is a powerful strategy to improve residents' learning. Residents identified and began to make practice changes to provide patient-centered care in a medical home.