NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families.

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Evaluation of mHealth Apps for Diverse, Low-Income Patient Populations: Framework Development and Application Study.

BACKGROUND: The use of mobile technology or smartphones has grown exponentially in the United States, allowing more individuals than ever internet access. This access has been especially critical to households earning less than US $30,000, the majority of whom indicate that smartphones are their main source of internet access. The increasing ubiquity of smartphones and virtual care promises to offset some of the health disparities that cut through the United States. However, disparities cannot be addressed if the medical information offered though smartphones is not accessible or reliable. OBJECTIVE: This study seeks to create a framework to review the strengths and weaknesses of mobile Health (mHealth) apps for diverse, low-income populations. METHODS: Focusing on smoking cessation, diabetes management, and medication adherence as models of disease management, we describe the process for selecting, evaluating, and obtaining patient feedback on mHealth apps. RESULTS: The top 2 scoring apps in each category were QuitNow! and Smoke Free-Quit Smoking Now for smoking cessation, Glucosio and MyNetDiary for diabetes management, and Medisafe and MyMeds for medication adherence. CONCLUSIONS: We believe that this framework will prove useful for future mHealth app development, and clinicians and patient advisory groups in connecting culturally, educationally, and socioeconomically appropriate mHealth apps with low-income, diverse communities and thus work to bridge health disparities.

Lessons Learned, Best Practices: Care Coordination for Children with Medical Complexity.

Although care coordination has long been established in the health care system in the United States, too often it may compete or work at cross purposes with care teams serving patients and families. Care coordination is a team sport that requires strong clinician-family partnerships as well as adequate time and resources to be done effectively. We incorporate the latest literature to offer clarity for identifying, coordinating, and funding care for children with medical complexity (CMC), the most medically fragile, high-cost subpopulation of children and youth with special health care needs. Algorithms for identifying CMC exist. Calculation of the cost of care for CMC is confounded by cost shifting to families and the variable course of illness and aging in this heterogeneous population. Multiple studies of different sizes have reported similar care coordination team structure, staffing ratios, and cost ranges. We describe models for funding this work and how they can be tailored to individual practice environments. [Pediatr Ann. 2020;49(11):e457-e466.].

"More than Meets the Eye": When the Neonatal Course May Impact Several Years Out.

CASE: Nadia is a 7-year-old girl who you have followed since her discharge from the Neonatal Intensive Care Unit (NICU). Her parents are here today for an urgent visit with behavioral concerns, such as inattention, hyperactivity, and aggression.Nadia is a former 40-weeker born through vacuum-assisted vaginal delivery at 9 pounds 7 ounces. Her delivery was complicated with shoulder dystocia, which resulted in resuscitation. Her Apgar scores were 1, 3, and 4 at 1, 5, and 10 minutes, respectively. After intubation and stabilization on mechanical ventilation, Nadia was transferred to the NICU. Her neonatal course included systemic hypothermia using "cool cap" for hypoxic-ischemic encephalopathy (HIE) for a duration of 72 hours. She was extubated on day of life 3. She had an occupational therapy consultation for poor suck/feeding, and it quickly improved. She was discharged on day of life 14. On discharge, Nadia was referred to early intervention (EI) and the NICU follow-up clinic. Nadia was followed by EI until 12 months of age and in the NICU follow-up clinic until 18 months of age, as there were no concerns meeting her developmental milestones or her neuromotor development.At this urgent visit, Nadia's parents report that she attended a family child care from 1.5 to 3 years of age, Head Start from 3 to 5 years of age and the local public school from 5 years to present. Since starting child care, Nadia's teachers have reported that she requires a lot of redirection and refocusing, fidgets a lot in class, and can be aggressive toward her peers when unprovoked. Since her parents had not seen these behaviors at home, they thought it was a phase that she would grow out of. However, as they began to work with her to complete school assignments, they noticed that it was very difficult for Nadia to sit still and focus on work. They also struggled in the mornings to get her ready and off to school.The parents bring in Conners scales completed by themselves and her lead teacher, and with these and our clinical observations, we diagnose her with attention-deficit/hyperactivity disorder (ADHD), combined type. We discuss risk factors and ADHD management with her parents. During our discussion, Nadia's father, who has done some reading on ADHD, remembers reading an article about HIE and NICU stay being risk factors for ADHD. He wonders if this affects the choice of management of her ADHD symptoms. How would you address his query?

"More than meets the eye": when the neonatal course may impact several years out.

CASE: Nadia is a 7-year-old girl who you have followed since her discharge from the Neonatal Intensive Care Unit (NICU). Her parents are here today for an urgent visit with behavioral concerns, such as inattention, hyperactivity, and aggression.Nadia is a former 40-weeker born through vacuum-assisted vaginal delivery at 9 pounds 7 ounces. Her delivery was complicated with shoulder dystocia, which resulted in resuscitation. Her Apgar scores were 1, 3, and 4 at 1, 5, and 10 minutes, respectively. After intubation and stabilization on mechanical ventilation, Nadia was transferred to the NICU. Her neonatal course included systemic hypothermia using "cool cap" for hypoxic-ischemic encephalopathy (HIE) for a duration of 72 hours. She was extubated on day of life 3. She had an occupational therapy consultation for poor suck/feeding, and it quickly improved. She was discharged on day of life 14. On discharge, Nadia was referred to early intervention (EI) and the NICU follow-up clinic. Nadia was followed by EI until 12 months of age and in the NICU follow-up clinic until 18 months of age, as there were no concerns meeting her developmental milestones or her neuromotor development.At this urgent visit, Nadia's parents report that she attended a family child care from 1.5 to 3 years of age, Head Start from 3 to 5 years of age and the local public school from 5 years to present. Since starting child care, Nadia's teachers have reported that she requires a lot of redirection and refocusing, fidgets a lot in class, and can be aggressive toward her peers when unprovoked. Since her parents had not seen these behaviors at home, they thought it was a phase that she would grow out of. However, as they began to work with her to complete school assignments, they noticed that it was very difficult for Nadia to sit still and focus on work. They also struggled in the mornings to get her ready and off to school.The parents bring in Conners scales completed by themselves and her lead teacher, and with these and our clinical observations, we diagnose her with attention-deficit/hyperactivity disorder (ADHD), combined type. We discuss risk factors and ADHD management with her parents. During our discussion, Nadia's father, who has done some reading on ADHD, remembers reading an article about HIE and NICU stay being risk factors for ADHD. He wonders if this affects the choice of management of her ADHD symptoms. How would you address his query?