Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-management
青少年在儿科慢性病专科护理就诊期间参与决策:制定和评估新措施以及对自我管理的影响
基本信息
- 批准号:10273927
- 负责人:
- 金额:$ 50.91万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2021
- 资助国家:美国
- 起止时间:2021-08-19 至 2026-05-31
- 项目状态:未结题
- 来源:
- 关键词:AddressAdherenceAdolescentAdultAgeBehaviorCaringCharacteristicsChildChildhoodChronicChronic Childhood ArthritisChronic DiseaseClinicalCommunicationComplexDataDecision MakingDevelopmentDimensionsEmpirical ResearchEnrollmentEnsureEthnic OriginEvaluationFamilyFoundationsGoalsHealthHealth PersonnelHealth behaviorHealth behavior outcomesHealthcareHealthcare SystemsHispanicsInflammatory Bowel DiseasesInsulin-Dependent Diabetes MellitusInterventionInterviewLegalMeasurementMeasuresMedicalModelingModernizationNIH Program AnnouncementsNatureNot Hispanic or LatinoOutcomeOutpatientsParentsParticipantPatient Self-ReportPatientsPatternPhasePlayProcessProfessional OrganizationsPropertyProviderPsychometricsQuestionnairesRaceResearchRoleSelf EfficacySelf ManagementSickle Cell AnemiaStructureTestingTimeTriad Acrylic ResinTypologyUnderrepresented MinorityVisitVoiceWorkYouthbasecognitive interviewdemographicsethnic minority populationexperienceglobal healthhealth care disparityhealth disparityhealth managementimprovedmedical specialtiesprovider behaviorracial and ethnicracial and ethnic disparitiesresponseshared decision makingskillssociodemographic variablessoundtheories
项目摘要
PROJECT SUMMARY/ABSTRACT
Shared decision making (SDM) between providers, parents, and youth is posited to be one of the processes of
self-management for a chronic condition. Adequate conceptual models for involving youth in decision making
must attend to the youth-parent-provider triad, recognize that there are multiple ways for youth to be involved
in the process of decision making, and underscore that parent, provider, and youth decision making behaviors
and roles should change with development. The field lacks empirical research to understand the nature of
parent-youth-provider interactions about decisions and outcomes of different patterns of behavior over time,
including adherence and health outcomes in youth with a chronic illness. This lack of research is due, at least
in part, to the absence of feasible, reliable, valid, and conceptually sound measures that assess the complex
interplay of decision making behaviors during medical encounters. The primary objective of this proposal is to
develop a measure of youths’ involvement in decision making during outpatient visits for pediatric chronic
illness (specifically, type 1 diabetes, sickle cell disease, juvenile idiopathic arthritis, and inflammatory bowel
disease). Aim 1 is to utilize semi-structured qualitative interviews with youth, parents, and providers (Study 1,
Phase 1) and cognitive interviews with youth and parents (Study 1, Phase 2) to develop items for a new
measure- the Decision Making Involvement Scale-Medical Encounters (DMIS-ME)- and ensure alignment
between participant interpretation and intent of the items. Aim 2 is to evaluate the psychometric properties and
validity of the DMIS-ME, utilizing both classical and modern test theory. Validity will be assessed by examining
whether DMIS-ME subscales are associated with youth age, decision self-efficacy, perceived global health,
self-management skills, and adherence. Secondary Aim 2 is to develop a typology of visit profile classes based
on DMIS-ME subscales, using latent class analysis, and examine whether the classes vary based on socio-
demographics and variables tested in Aim 2. For Aim 2 (Study 2), we will enroll and assess youth and their
parents, immediately after attending an outpatient specialty care visit related to their chronic illness. They will
complete the DMIS-ME and measures of decision self-efficacy, perceived global health, self-management
skills, and adherence. Aim 3 is to identify and describe ethnic/racial disparities in youths’ perceived
involvement in decision making based on data from Aim 1 and 2. The development of the DMIS-ME addresses
a critical gap in the field of pediatric self-management and decision making. The DMIS-ME can be used in
future research to describe youths’ decision making involvement in a multidimensional way that accounts for
the youth-parent-provider triad, identify outcomes of involvement, and inform the development and evaluation
of interventions to enhance youth involvement in decision making, and ultimately, health behaviors and
outcomes, as they mature.
项目总结/文摘
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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Victoria Allison Miller其他文献
207 - Program Evaluation of an Online Spaced Education Course in an Adolescent Medicine Rotation
- DOI:
10.1016/j.jadohealth.2017.11.215 - 发表时间:
2018-02-01 - 期刊:
- 影响因子:
- 作者:
Jennifer Louis-Jacques;Victoria Allison Miller;Dorene Faye Balmer;Gail Slap - 通讯作者:
Gail Slap
Victoria Allison Miller的其他文献
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{{ truncateString('Victoria Allison Miller', 18)}}的其他基金
Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-management
青少年在儿科慢性病专科护理就诊期间参与决策:制定和评估新措施以及对自我管理的影响
- 批准号:
10471891 - 财政年份:2021
- 资助金额:
$ 50.91万 - 项目类别:
Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-management
青少年在儿科慢性病专科护理就诊期间参与决策:制定和评估新措施以及对自我管理的影响
- 批准号:
10611496 - 财政年份:2021
- 资助金额:
$ 50.91万 - 项目类别:
Examining how children benefit from the assent process for research decisions
检查儿童如何从研究决策的同意过程中受益
- 批准号:
8298761 - 财政年份:2012
- 资助金额:
$ 50.91万 - 项目类别:
Examining how children benefit from the assent process for research decisions
检查儿童如何从研究决策的同意过程中受益
- 批准号:
8438467 - 财政年份:2012
- 资助金额:
$ 50.91万 - 项目类别:
A longitudinal study of parent-child collaboration in CF and type 1 diabetes
CF 和 1 型糖尿病亲子合作的纵向研究
- 批准号:
8437214 - 财政年份:2011
- 资助金额:
$ 50.91万 - 项目类别:
A longitudinal study of parent-child collaboration in CF and type 1 diabetes
CF 和 1 型糖尿病亲子合作的纵向研究
- 批准号:
8040690 - 财政年份:2011
- 资助金额:
$ 50.91万 - 项目类别:
A longitudinal study of parent-child collaboration in CF and type 1 diabetes
CF 和 1 型糖尿病亲子合作的纵向研究
- 批准号:
8601312 - 财政年份:2011
- 资助金额:
$ 50.91万 - 项目类别:
A longitudinal study of parent-child collaboration in CF and type 1 diabetes
CF 和 1 型糖尿病亲子合作的纵向研究
- 批准号:
8213424 - 财政年份:2011
- 资助金额:
$ 50.91万 - 项目类别:
Parent-Child Collaborative Decision Making for the Management of Chronic Illness
慢性病管理的亲子协作决策
- 批准号:
7242912 - 财政年份:2007
- 资助金额:
$ 50.91万 - 项目类别:
Parent-Child Collaborative Decision Making for the Management of Chronic Illness
慢性病管理的亲子协作决策
- 批准号:
7418667 - 财政年份:2007
- 资助金额:
$ 50.91万 - 项目类别:
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