Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement.

With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as the medical-legal partnership model.

Family perspectives on provider conversations about housing needs for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur. METHODS: From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts. RESULTS: Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time. CONCLUSIONS: Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

A gap in the data: Defining, identifying, and tracking children with medical complexity in the child welfare system.

BACKGROUND: Among nearly 400,000 children in US foster care, an estimated 10 % are medically complex. Yet, population-level data about children with medical complexity (CMC) served by the child welfare system, both for prevention and foster care services, are largely unavailable. OBJECTIVE: To understand how US child welfare agencies define, identify, and track CMC. PARTICIPANTS AND SETTING: Child welfare agencies across the US. METHODS: Agencies were recruited to complete a survey as part of a larger study exploring how CMC are served by the child welfare system. Survey responses related to defining, identifying, and tracking CMC were included in analysis. Descriptive statistical analysis was conducted with Stata. Qualitative content and thematic analysis were applied to free text responses. RESULTS: Surveys were completed by agencies from 28 states and 2 major cities. Nearly half of the agencies did not have a clear definition to identify CMC; those that did have a definition often lacked standardization. The majority of agencies could not easily identify CMC or access CMC-related data within data systems. Agencies described lack of a clear definition as a barrier to collecting population level data. CONCLUSIONS: Many US child welfare agencies lack a clear definition to identify and track CMC, impacting the ability to tailor care and service delivery to meet their unique needs. To address this, a clear definition for CMC should be developed and consistently applied within child welfare data systems. Once CMC are identifiable, future research can collect population-level data and provide recommendations for best practices and policies.

Caring for Hospitalized Children in Foster Care: Provider Training, Preparedness, and Practice.

BACKGROUND AND OBJECTIVES: Children and youth in foster care (CYFC) have high rates of health care utilization, including inpatient care. The objective of this study was to explore the inpatient provider experience caring for CYFC. METHODS: Semistructured interviews were conducted with inpatient pediatric providers from Mid-Atlantic hospitals. Interview questions focused on 3 domains: provider training and preparedness, practice challenges, and strategies to improve care for CYFC. Conventional content analysis was applied to interview transcripts. RESULTS: Thirty-eight interviews were completed with providers from 6 hospitals, including 14 hospitalists, 1 advanced practice provider, 11 registered nurses, 10 social workers (SWs), and 2 case managers. Nearly all (90%) reported at least monthly interactions with CYFC. Themes related to training and preparedness to care for CYFC included: medical providers' lack of formal training, limited foster care knowledge, and feeling of preparedness contingent on access to SWs. Themes related to unique practice challenges included: identifying CYFC, obtaining consent, documenting foster care status, complex team communication, and navigating interpersonal stress. Participants' suggestions for improving their ability to care for CYFC included increasing SW capacity, expanding provider training, standardizing electronic medical record documentation and order sets, and improving team communication and information sharing. CONCLUSIONS: There are unique medical, social, and legal aspects of caring for hospitalized CYFC; pediatric medical providers receive limited training on these topics and rely heavily on SWs to navigate associated practice challenges. Targeted educational and health information technology interventions are needed to help inpatient providers feel better prepared to effectively meet the needs of CYFC.

How Should Clinicians and Health Care Organizations Promote Equity in Child Abuse and Neglect Suspicion, Evaluation, and Reporting?

Victims of child abuse and neglect come from every racial, ethnic, and socioeconomic background, yet clinical evaluation, reporting to child protective services, and responses to reports inequitably harm Black children and malign families of color. Racial bias and inequity in suspicion, reporting, and substantiation of abuse and neglect and in services offered and delivered, foster care placement, and criminal prosecution are widely documented. In response, clinicians and health care organizations should promote equity by educating clinicians about racial bias, standardizing evaluation using clinical decision support tools, and working with policy makers to support prevention services. If we decide that it is ethically justifiable for clinicians to err on the side of overreporting, we must ensure fair distribution of associated benefits and harms among all children and families.

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.

Delays in Hospital Discharge for Children in Foster Care: Reasons and Recommendations From a Multisite Study.

OBJECTIVE: To elucidate challenges to timely hospital discharge of children in foster care (CFC). METHODS: Inpatient providers with prior experience caring for CFC were recruited from 6 mid-Atlantic hospitals. Semi-structured interviews were conducted to explore provider experience discharging CFC. Conventional content analysis was applied to interview transcripts with Dedoose software. RESULTS: Interviews were completed with 15 MDs/NPs, 11 RNs, 10 social workers, and 2 case managers. Participants explained that delayed discharge is the norm for CFC, especially for those entering new foster care placements. Participants detailed challenges to efficiently discharging CFC, which were categorized into 3 themes: 1) Waiting for discharge disposition: Providers' ability to proceed with discharge planning is contingent on procedural steps (eg, court decisions) needed to determine disposition (eg, entering new foster care placement); 2) Medically cleared, but no place to go: Participants report placement searches are often not initiated by child welfare until the child is medically cleared. Lack of available, appropriate foster care placements delays discharge, particularly for children with complex medical or behavioral diagnoses; 3) Coordinating for a safe discharge: Establishing a safe discharge for CFC involves meticulous discharge planning, foster parent training, and multidisciplinary team communication/coordination. CONCLUSION: Delayed discharge for CFC is multifactorial, yet often predictable. There are modifiable factors identified that can be addressed to promote timely hospital discharge and prevent medically unnecessary hospital days, benefitting patients in foster care and the hospital system.

Medical Decision-Making in Foster Care: Considerations for the Care of Children With Medical Complexity.

OBJECTIVE: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). METHODS: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. RESULTS: Fifty-eight interviews were completed with 2-5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. CONCLUSIONS: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.

Exploring Medical Foster Care as a Placement Option for Children With Medical Complexity.

BACKGROUND: Medical foster care (MFC) offers a family-home setting for children with medical complexity (CMC) who cannot be cared for by their parents. We explored MFC as a placement option for CMC via in-depth interviews with the individuals providing and monitoring care. METHODS: In collaboration with an MFC agency, we recruited care team members for 15 CMC. Semistructured interviews were audiotaped and transcribed. Descriptive analyses were performed on care team composition and roles, the placement process, and child medical, placement, and quality of life (QoL) characteristics. Foster parents completed child QoL questionnaires. Conventional content analysis was applied to participant suggestions for MFC improvements. RESULTS: Fifty-eight interviews were conducted; a median of 4 care team members interviewed per child. An extensive network of individuals and systems are involved in providing care. Each child received care from multiple subspecialists (median = 5). Most children were technology dependent (87%), developmentally delayed (87%), and entered MFC from the hospital (73%) because of medical neglect (86%). Nearly half were in care for >2 years. Changes in placement and/or care team were common. QoL scoring showed impairments in multiple domains, whereas respondent interviews described positive aspects of QoL. Participants provided suggestions to improve care within MFC. CONCLUSIONS: MFC is a promising placement option for CMC. Because many CMC are entering MFC directly from the hospital and require ongoing care from pediatric subspecialists, pediatricians should be familiar with MFC, the placement process, and the various systems and individuals involved. Pediatricians can play important roles in ensuring that children in MFC receive coordinated and high-quality care.

Child Abuse, Incarceration, and Decisions About Life-sustaining Treatment.

Most critical care interventions for children occur in the framework of a supportive environment with loving parents that are present at the bedside to help to guide medical interventions through shared decision-making. What happens, however, if the parents are precluded from being at the bedside because of legal entanglements? How should clinical decisions progress in those cases? In this Ethics Rounds, we present the case of an infant with severe hypoxic-ischemic encephalopathy at birth whose mother was incarcerated shortly after delivery. We explore clinical and legal challenges that the medical team faces in determining best interests for the infant in this context and difficulties in deciding what therapies to provide and for how long.

Medically Complex Children in Foster Care: Do Research "Protections" Make This "Vulnerable Population" More Vulnerable?

Children in foster care are considered a "vulnerable population" in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the "vulnerable population" designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine "protection" of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research.

Medical Decision Making for Medically Complex Children in Foster Care: Who Knows the Child's Best Interests?

Aproximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child's medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child's biological parents should play in making serious medical decisions. Here we highlight some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician.

Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations.

OBJECTIVES: The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI). METHODS: Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes. RESULTS: All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites. CONCLUSIONS: Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.

Medical foster care: what happens when children with medical complexity cannot be cared for by their families?

Medical interventions for life-threatening pediatric conditions often oblige ongoing and complex medical care for survivors. For some children with medical complexity, their caretaking needs outstrip their parents' resources and abilities. When this occurs, the medical foster care system can provide the necessary health care and supervision to permit these children to live outside of hospitals. However, foster children with medical complexity experience extremes of social and medical risk, confounding their prognosis and quality of life beyond that of similar children living with biologic parents. Medical foster parents report inadequate training and preparation, perpetuating these health risks. Further, critical decisions that weigh the benefits and burdens of medical interventions for these children must accommodate complicated relationships involving foster families, caseworkers, biologic families, legal consultants, and clinicians. These variables can delay and undermine coordinated and comprehensive care. To rectify these issues, medical homes and written care plans can promote collaboration between providers, families, and agencies. Pediatricians should receive specialized training to meet the unique needs of this population. National policy and research agendas could target medical and social interventions to reduce the need for medical foster care for children with medical complexity, and to improve its quality for those children who do.