RESUMO
Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families. Meeting these needs should be grounded in health equity, address systemic racism and ableism, and emphasize the life course and journey of those with such needs and their families. In this paper, we start with the simple concept of asking that care is available for CYSHCN regardless of when, where, and how they need it. Access to services is built on relationships instead of a series of transactions. Opportunities for innovation include creating a single point of service entry; determining services based on need instead of diagnosis; and emphasizing service continuity, transition, and a place-based approach. The innovations reimagine access throughout the life course, centering care around a proactive, human-centered system that addresses health and all of its determinants. The landscape of antipoverty investments, cultural humility, workforce changes, technology, and human-centered thought in design have the potential to further transform the conceptual framework to improve access to services for CYSHCN and their families.
Assuntos
Crianças com Deficiência , Adolescente , Criança , Necessidades e Demandas de Serviços de Saúde , HumanosRESUMO
INTRODUCTION: Children and youth with special health care needs (CYSHCN) need, but do not have, adequate care coordination (CC); CC leads to better pediatric care, improved family/professional experience of care, and enhanced population health. Current CC initiatives are promising but lack adherence to emerging definitions/standards. A Lucile Packard Report provides guidelines for using a Shared Plan of Care (SPoC) as a CC approach; studied implementation is needed. PURPOSE: The studied implementation of the Riley Care Coordination Program (RCCP) set out to: 1) illuminate components of family-centered, interdisciplinary, team-based care/coordination and SPoC, use 2) underscore family participation/engagement 3) reveal implementation processes/lessons learned. METHODS: Children (ages 2-10) with neurodevelopmental disabilities were referred by subspecialists; families agreed to participate in RCCP from a children's hospital ambulatory care setting. RCCP team used a five-phase workflow to implement CC: (1) Family Outreach/Engagement 2) Family and Team Pre-Visit Work, 3) Population-Based Teamwork, 4) Planned-Care Visits/SPOC "Co-Production", 5) Ongoing Care Coordination and Community Transfer. Family surveys and SPoC goals informed an evaluation. RESULTS: Children (268) with neurodevelopmental disabilities enrolled/completed the 6-month RCCP; it was a feasible endeavor. The co-produced SPoC supported families/care neighborhood partners to meet goals/unmet needs. Team plan-do-study-act improvement cycles informed RCCP enhancements. DISCUSSION/CONCLUSION: Eliciting/using family goals to drive CC emphasized family priorities; children/families gained interventions, treatments, confidence and navigation skills. Going beyond episodic, reactive care, RCCP achieved better CC with care neighborhood learning partnerships. Investing in this quality care coordination with fidelity to national standards holds promise.
Assuntos
Assistência Integral à Saúde/organização & administração , Deficiências do Desenvolvimento/terapia , Organização e Administração , Equipe de Assistência ao Paciente/organização & administração , Assistência Ambulatorial/organização & administração , Criança , Serviços de Saúde da Criança/organização & administração , Pré-Escolar , Doença Crônica/terapia , Tomada de Decisões , Deficiências do Desenvolvimento/diagnóstico , Feminino , Humanos , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/terapia , Estudos Longitudinais , Masculino , Avaliação de Resultados em Cuidados de Saúde , Medição de RiscoRESUMO
: Care coordination is integral to improving the health of children and families. Using a Shared Plan of Care (SPoC) as a care coordination activity is recommended, but related research on outcomes in pediatric populations with complex medical conditions is scarce. OBJECTIVE: This study explores family outcomes associated with implementation of a care coordination/SPoC intervention with a population of children with neurodevelopmental disabilities and their families. METHODS: Children aged 2 to 10 years with a neurodevelopmental disability (autism spectrum disorder: 60.9%; global developmental delay/intellectual disability: 39.1%) were referred by pediatric subspecialty programs for care coordination. The intervention included previsit assessments, planned care visits, SPoC development, and 6-month care coordination. A single-group, repeated-measures design was used to evaluate model feasibility and effects on care coordination access, SPoC use, family/clinician goals and needs met, family-professional partnerships, family empowerment, and worry. Times 1 and 2 survey data were collected from a total of 70 families. RESULTS: Analysis shows significant improvement in care coordination access, SPoC use, goals achieved, needs met, family empowerment, and reduced worry. There was no significant change in family-professional partnerships and reported SPoC use. CONCLUSION: Findings provide preliminary evidence that a care coordination model using a family-centered, goal-oriented SPoC is a feasible and effective approach with a cohort of children with complex neurodevelopmental disorders and is associated with improved family outcomes. Replication studies are warranted and should include a control group, prolonged time period, additional validated outcome measures, and measurement of costs and professional impact.
Assuntos
Serviços de Saúde da Criança/organização & administração , Transtornos do Neurodesenvolvimento/terapia , Administração dos Cuidados ao Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Avaliação de Processos em Cuidados de Saúde , Transtorno do Espectro Autista/terapia , Criança , Pré-Escolar , Deficiências do Desenvolvimento/terapia , Feminino , Humanos , Deficiência Intelectual/terapia , Masculino , Planejamento de Assistência ao PacienteRESUMO
This article, written by a group of experienced parents of children with medical complexity (CMC), provides an overview of the demands of managing care from their unique perspective. The article articulates why attention to understanding the challenges that families of CMC face with a fragmented health care system, inadequate health insurance coverage, deficits in the delivery of medical care, and problems accessing other critical services (as well as lack of support for children and adolescents in developing and exercising self-management skills) are vital to efforts to improve the current system and positively impact the life course of vulnerable populations. The authors discuss the financial and intangible costs experienced by families of CMC and other stakeholders (including providers, payers, and others), as well as the benefits that can result when effective, flexible, comanaged team-based care coordination is provided within the environment that is the most natural locus of care for the family. The authors detail the role of policy strategies that provide protections for CMC and the importance of family-led advocacy and support organizations in helping families "on the front lines." Throughout the article, the case is made that families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for CMC. The experiences of families of CMC should inform and guide efforts to improve systems of care, thus positively impacting the life course of this vulnerable population.
Assuntos
Serviços de Saúde da Criança/tendências , Saúde da Criança/tendências , Pais/psicologia , Relações Profissional-Família , Criança , Saúde da Criança/economia , Serviços de Saúde da Criança/economia , Custos de Cuidados de Saúde/tendências , Humanos , Populações Vulneráveis/psicologiaRESUMO
BACKGROUND: When parents of young children with special health care needs (CSHCN) receive their child's diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child's immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. OBJECTIVE: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. METHODS: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. RESULTS: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. CONCLUSIONS: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.