Home Health Nursing Agencies' Services for Children With Medical Complexity: Parent and Nurse Perspectives.

Objective: Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships.

Telehealth for Children With Medical Complexity During the COVID Pandemic: A Qualitative Study Exploring Caregiver Experiences.

Children with medical complexity (CMC) receive care from many clinicians. Our objective is to describe caregivers' experiences about telehealth for CMC. This qualitative study conducted in North Carolina involves semistructured interviews with 23 caregivers of CMC (15 English; 8 Spanish).

Telehealth Use and Access to Neurology Outpatient Clinical Services for Children: An Observational Cohort Study.

Background: Access to neurology services is important for children's well-being. We sought to evaluate the effects of telehealth on pedi-atric neurology appointment outcomes for children.

Methods: Using electronic health record (EHR) data, information about children with pediatric neurology appointments in a tertiary care children's hospital in North Carolina was collected.

Audio or Video? Access to Pediatric Neurology Outpatient Services Varies by the Type of Telehealth, Especially for Black Children.

Background: Children of minority race/ethnicity face barriers to accessing specialty services. During the COVID pandemic, health insurance companies reimbursed telehealth services. Our objective was to evaluate the effect of audio versus video visits on children's access to outpatient neurology services, particularly for Black children.

Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with medical complexity.

Objective: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision-making about tracheostomy placement that might apply to other LST in CMC.

Design: This qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary-care children's hospital in North Carolina.

Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?

Objectives: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.

Methods: This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital.

Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity: a Qualitative Study.

Background: Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Hispanic children face many challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents with limited English proficiency (SSP-LEP).

A Framework for Pediatric Intensivists Providing Compassionate Extubation at Home.

For families facing end-of-life decisions for their critically ill children, compassionate extubation at home is a valuable service that pediatric intensivists can provide. Compassionate extubation at home is resource intensive and can be logistically challenging. Discouragingly, guidance on compassionate extubation at home in the literature is limited.

Randomized controlled trial evaluating a collaborative model of care for transitioning children with medical complexity from hospital to home healthcare: Study protocol.

This article describes the study protocol for an evaluation of an innovative model of care that supports home health nurses (HHN) who serve children with medical complexity (CMC). CMC constitute a small proportion of children, but have very high need for health services, are hospitalized frequently, and account for significant proportion of pediatric healthcare expenditures. High-quality home health nursing services are important for CMC, but models of care of home healthcare, after discharge of CMC from the hospital, have not been tested.

Transitioning Children With Medical Complexity From Hospital to Home Health Care: Implications for Hospital-Based Clinicians.

Objectives: There is limited research about best practices for transitioning children with medical complexity (CMC) from hospital to home. Our objectives were to describe issues related to transitioning CMC from hospital to home health care and identify strategies to improve this transition.

Methods: This qualitative study was conducted in western North Carolina between 2012 and 2014 and involved a focus group of 14 hospital- and community-based stakeholders and 4 focus groups of 18 home health nurses.

Practical Needs in the Home Care of Latino Children With Medical Complexity.

Latino children face barriers to high-quality healthcare. Because children with medical complexity (CMC) have higher healthcare needs, Latino CMC are likely to experience greater effects of these barriers. These vulnerabilities are exacerbated when Latino CMC endure adverse social conditions, such as food insecurity and housing instability.

Expanding the phenotypic and molecular spectrum of RNA polymerase III-related leukodystrophy.

Objective: To expand the phenotypic spectrum of severity of POLR3-related leukodystrophy and identify genotype-phenotype correlations through study of patients with extremely severe phenotypes.

Methods: We performed an international cross-sectional study on patients with genetically proven POLR3-related leukodystrophy and atypical phenotypes to identify 6 children, 3 males and 3 females, with an extremely severe phenotype compared with that typically reported. Clinical, radiologic, and molecular features were evaluated for all patients, and functional and neuropathologic studies were performed on 1 patient.

Decision-Making About Tracheostomy for Children With Medical Complexity: Caregiver and Health Care Provider Perspectives.

Objective: Caregivers of children with medical complexity (CMC) face decisions about tracheostomy. The objectives of this paper are to identify facilitators and barriers to tracheostomy decision-making (TDM) process for CMC.

Methods: Using phenomenology as its methodologic orientation, this qualitative study conducted in North Carolina between 2013 and 2015 consists of semistructured interviews with 56 caregivers of 41 CMC who received tracheostomies, and 5 focus groups of 33 health care providers (HCP) at a tertiary care children's hospital involved in TDM for CMC.

The role of religion and spirituality in caregiver decision-making about tracheostomy for children with medical complexity.

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years.

Challenges Faced by Latino Caregivers in Transportation of Children with Medical Complexity.

Transportation challenges affect access to health care. Our objective was to describe transportation challenges faced by Latino children with medical complexity and identify strategies that could address these challenges. This is a qualitative study.

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity.

Objective: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision.

Study Design: In this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated.

Establishing Relationships and Navigating Boundaries When Caring for Children With Medical Complexity at Home.

Children with medical complexity receive care from many healthcare providers including home healthcare nurses. The objective of our study, based on a conceptual framework, was to describe the relationships between parents/caregivers of children with medical complexity and home healthcare nurses caring for these children. We collected qualitative data in 20 semistructured in-depth interviews (15 English, 5 Spanish) with 26 primary caregivers of children with medical complexity, and 4 focus groups of 18 home healthcare nurses inquiring about their experiences about home healthcare nursing services for children with medical complexity.

Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis.

Objective: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers.

Study Design: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina.

Factors Associated With Stability of Health Nursing Services for Children With Medical Complexity.

The objectives of our study are to: (1) identify the factors associated with lack of stable home healthcare nursing services for children with medical complexity, and (2) describe the implications of unstable home healthcare nursing for children, caregivers, nurses, and home healthcare agencies. We collected qualitative data in 20 semistructured in-depth interviews (15 English, 5 Spanish) with 26 primary caregivers of children with medical complexity, and 4 focus groups of 18 home healthcare nurses inquiring about their experiences about home healthcare nursing services for children with medical complexity. During an iterative analysis process, we identified recurrent themes related to stability of home healthcare nursing.

Improving the Quality of Home Health Care for Children With Medical Complexity.

Objective: The objectives of this study are to describe the quality of home health care services for children with medical complexity, identify barriers to delivering optimal home health care, and discuss potential solutions to improve home health care delivery.

Methods: In this qualitative study, we conducted 20 semistructured in-depth interviews with primary caregivers of children with medical complexity, and 4 focus groups with 18 home health nurses. During an iterative analysis process, we identified themes related to quality of home health care.

Home Health Nurse Collaboration in the Medical Neighborhood of Children with Medical Complexity.

The objectives of this study were to describe how home healthcare nurses collaborate with other clinicians caring for children with medical complexity, and identify barriers to collaboration within the medical neighborhood. Using qualitative data obtained from 20 semistructured interviews (15 English, 5 Spanish) with primary caregivers of children with medical complexity and 18 home healthcare nurses, researchers inquired about experiences with home healthcare nursing services for these children. During an iterative analysis process, recurrent themes were identified by their prevalence and salience in the data.

Pediatric Primary Care Involvement in End-of-Life Care for Children.

Objectives: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life.

Methods: California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations.

Results: Of the 2037 children who died between 2007 and 2010, 11% used hospice and 23% used home health.

Transitions to and from the acute inpatient care setting for children with life-threatening illness.

Children with life-threatening illnesses (LTIs) are hospitalized more often and spend more days in the hospital than children without LTIs. Hospitalizations may be associated with changes in health status of children with LTIs and thus alter their care needs significantly. Transitional care is particularly relevant for this population.

Managing medical equipment used by technology-dependent children: evaluation of an instructional tool for pediatric residents and medical students.

Objectives: To evaluate the effectiveness of a workshop on managing medical devices used in technology-dependent children.

Methods: Study participants included residents and medical students rotating in the pediatrics department at the time of the study. A workshop was conducted consisting of learning stations for common medical devices, including brief presentations and opportunities for hands-on practice with each device.