Communicating with Parents About Therapeutic Hypothermia and Hypoxic Ischemic Encephalopathy: Integrating a Palliative Care Approach into Practice.

Parents of newborns with hypoxic ischemic encephalopathy (HIE) can face communication challenges in the neonatal intensive care unit. Both specialty palliative care and primary palliative care trained clinicians can assist parents as they navigate traumatic experiences and uncertain prognoses. Using evidence-based frameworks, the authors provide samples of how to communicate with parents and promote parent well-being across the care trajectory. The authors demonstrate how to involve parents in a shared decision-making process and give special consideration to the complexities of hospital discharge and the transition home. Sustained investment to guide the development of effective communication skills is crucial to support families of infants with HIE.

Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project.

OBJECTIVE: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness. METHODS: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys. RESULTS: 33 parents (16 English-speaking, 17 Spanish-speaking) and 34 clinicians participated. Enrollment was better for families than clinicians (78% vs. 43%). Video acceptability was high: families and clinicians endorsed verisimilitude of depicted hospitalization challenges for chronic critical illness. All families felt the videos would help other families, all clinicians felt they would help other clinicians. Families gained expectations for the hospital course, discovered resources for hospitalization challenges, and learned there are other families in similar situations. Clinicians learned to recognize chronic critical illness, and how families experience hospitalizations, transfers, and discharges. CONCLUSION: Educational videos about pediatric chronic critical illness were overall feasible, acceptable, and educational for hospitalized families and clinicians. PRACTICE IMPLICATIONS: Just-in-time hospital education about pediatric chronic critical illness is valuable to families and clinicians; next steps are to assess potential to reduce gaps in care of children with chronic critical illness.

Simulation for communication training in neonatology.

Communication skills training is a core competency for neonatal-perinatal medicine (NPM) fellows, yet many neonatology fellowship programs do not have formal communication skills curricula. Since the late 1990s, experiential learning that includes role-play and simulation has become the standard for communication training. NPM fellows who receive simulation-based communication skills training report greater comfort with difficult conversations in the NICU. Most communication skills studies in neonatology focus on antenatal counseling, with some studies regarding family meetings and end of life conversations. Published examples for simulation-based communication skills curricula exist, with ideas for adapting them to meet the needs of local resources.

Developing an audio-based communication tool for NICU discharge of Latino families with limited English proficiency.

OBJECTIVE: Research shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL. METHODS: Focus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability. RESULTS: Provider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families. CONCLUSION: Our QPL may address challenges faced by Latino parents LEP when transitioning home. PRACTICE IMPLICATIONS: QPLs may improve Latino NICU infants' healthcare outcomes.

Qualitative indications for tracheostomy and chronic mechanical ventilation in patients with severe bronchopulmonary dysplasia.

BACKGROUND: The decision to pursue chronic mechanical ventilation involves a complex mix of clinical and social considerations. Understanding the medical indications to pursue tracheostomy would reduce the ambiguity for both providers and families and facilitate focus on appropriate clinical goals. OBJECTIVE: To describe potential indications to pursue tracheostomy and chronic mechanical ventilation in infants with severe BPD (sBPD). STUDY DESIGN: We surveyed centers participating in the Children's Hospitals Neonatal Consortium to describe their approach to proceed with tracheostomy in infants with sBPD. We requested a single representative response per institution. Question types were fixed form and free text responses. RESULTS: The response rate was high (31/34, 91%). Tracheostomy was strongly considered when: airway malacia was present, PCO2 ≥ 76-85 mmHg, FiO2 ≥ 0.60, PEEP ≥ 9-11 cm H2O, respiratory rate ≥ 61-70 breaths/min, PMA ≥ 44 weeks, and weight <10th %ile at 44 weeks PMA. CONCLUSIONS: Understanding the range of indications utilized by high level NICUs around the country to pursue a tracheostomy in an infant with sBPD is one step toward standardizing consensus indications for tracheostomy in the future.

Moving From Knowledge to Action: Improving Safety and Quality of Care for Patients With Limited English Proficiency.

Objective. This study assessed safety culture and staff communication with patients with limited English proficiency (LEP) to identify system-level approaches to increasing interpreter use and reducing health care disparities. Methods. An electronic survey and 7 focus groups were conducted with health care professionals in pediatrics and obstetrics/gynecology. Survey data were examined with univariate descriptive analysis. Focus group transcripts were coded through an iterative consensus process. Results. Survey participants (n = 68) reported less confidence in their ability to communicate effectively (74%) and form therapeutic relationships (56%) with LEP patients versus English-proficient patients. Focus groups identified knowledge as a facilitator of interpreter use. Workflow constraints, supply-demand mismatch, variable interpretation quality, and gaps in communication with interpretation services management were barriers. Conclusion. Knowledge gaps may not be a primary cause of interpreter underuse. Strategies to address workflow barriers and engage with interpretation services are critical to move from knowledge to action to improve LEP patient care.

Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States.

As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related to PC for Latino children and their families in the United States. In the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. Education of providers on Latino cultural values is necessary. Additionally, advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population.