Self-Management Characterization for Children with Medical Complexity and their Social Networks
Self-Management Characterization for Children with Medical Complexity and their Social Networks
批准号:
9789976
负责人:
Jessica Keim-Malpass
金额:
$20.19万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2018
资助国家:
美国
项目状态:
已结题
起止时间:
2018-09-21 至 2021-08-31
关键词:
AcuteAddressAgeAgreementBirthCaringCategoriesCharacteristicsChildChild CareChild HealthChildhoodClinicalCommunitiesComplexData AnalysesData CollectionDependenceDiagnosisDiscipline of NursingDiseaseDistalEngineeringEnvironmentEnvironmental Risk FactorEventFamilyFoundationsFriendsGoalsGuidelinesHealthHealth PersonnelHealth PolicyHealthcareHome Health AidesHome environmentHospitalizationHumanIndividualInstructionInterventionInterviewKnowledgeLanguageMediationMedicaidMedicalMethodsMonitorOutcomeParentsPatientsPediatric ResearchPharmaceutical PreparationsPoliciesPopulationPractice ManagementProviderPublic HealthQualitative MethodsQuality of lifeReportingResearchRoleSelf ManagementShapesSocial NetworkStructureSystemTestingTimebasecare costscaregivingdesignexperiencefamily managementhealth information technologyhealth managementhospital readmissionimprovedimproved outcomeinpatient servicemembernovelpolicy implicationsocialsocial engagementwaiver
中文摘要
项目总结/文摘
英文摘要
Project summary/abstract
Children with medical complexity (CMC) are a growing population of medically fragile children with special
health care needs (between the ages of birth to 21) with complex, multisystem disease states. Nearly 1
percent of all children (roughly 320,000 to 560,000) have medical complexity at the highest levels, yet these
children account for up to a third of all pediatric health care spending and more than half of all unintended
readmissions. Much of the family-centered self-management (hereafter self-management) occurs in the home
and community-based setting with immense caregiving demands. The goal of this study is to use a
theoretically-driven perspective to systematically elucidate the range of self-management experiences across
families of CMC embedded in diverse social networks and contextual environments. Previous pediatric
research has not articulated self-management experiences in ways that account for multiple diagnoses,
engagement of social network members, or simultaneous consideration of individual and environmental
factors. In other words, self-management has not been studied through assessment of both
individual/family/social network level factors and system level factors simultaneously. Consequently, the aims
of this study are: (1) Examine how self-management responsibilities for CMC are distributed and negotiated
among multiple social network members and (2) explicate how individual and systems level factors influence
approaches to self-management for CMC. This study takes a qualitative descriptive approach to understand
self-management practices in CMC and draws on theoretical perspectives from nursing, systems engineering,
and public health. It further draws on novel analysis methods that enable understanding of agreement,
disagreement, and differential understanding among the multiple individuals involved in self-management of
CMC. Future research efforts will include a larger, multisite study which builds upon the findings by assessing
changes in self-management practices over time and capturing multiple perspectives on patient-reported distal
and proximal outcomes for CMC. Findings from these combined studies will focus on developing and testing
interventions (educational, technological, and policy oriented) to determine how different ways of leveraging
and configuring social networks and contextual environments of families of CMC impact patient-reported,
clinical, and utilization outcomes.
期刊论文(0)
专著(0)
科研奖励(0)
会议论文
海外基金