Communic-Aid

通讯援助

• 批准号: 7393942
• 负责人: CYNTHIA D BAKER
• 金额: $ 10万
• 依托单位: DANYA INTERNATIONAL, INC.
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-04-10 至 2009-04-09
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7393942
• 关键词: Anxiety; Awareness; Books; Caring; Cessation of life; Child; Childhood; Clinical; Communication; Development; Effectiveness; Environment; Evaluation; Face; Family; Family member; Feasibility Studies; Field Reports; Film; Focus Groups; Goals; Health Personnel; Hospice Care; Hospitals; Institute of Medicine (U.S.); Institution; International; Intervention; Life; Life Experience; Literature; Medical; Multimedia; Needs Assessment; Palliative Care; Pamphlets; Parents; Pediatric Hospitals; Pediatric Nurse Specialist; Phase; Principal Investigator; Professional counselor; Provider; Psychologist; Purpose; Quality of life; Regrets; Research; Research Personnel; Research Project Grants; Research Proposals; Resources; School-Age Population; Services; Siblings; Small Business Innovation Research Grant; Social Workers; Structure; Suggestion; Taxes; Techniques; Therapeutic; Work; advocacy organizations; base; coping; design; guidebooks; hospice environment; improved; innovation; member; prevent; programs; prototype; tool

DESCRIPTION (provided by applicant): In this Phase I SBIR grant, Danya International, Inc., proposes the development and evaluation of the Communic-Aid program, a practical, innovative, and comprehensive resource for parents, group facilitators, and direct care providers to support engagement of family communication with a school-age child with a life threatening illness (LTI). Parents of children with LTI face many significant and important questions; one of these questions-should I, or should I not, talk about death with my child?-is the central concern of this proposed work. Therefore, the goal of this project is to develop and evaluate a family-centered intervention that will increase positive communication among family members about LTIs, death, and dying. The proposed product will be designed as a multimedia program, including: a parent guidebook that can be used as a self directed support tool by parents or as a facilitator-led, group-based tool; a children's activity book; a video/DVD; an accompanying booklet for institutions and direct care providers; and a facilitator's guide for providers (e.g., child life specialists, pediatric nurses, psychologists, social workers) implementing the program in a group setting. During the Phase I period, the research team will complete intensive formative research through input from our partners, Content Advisors and Advisory Panel members; a needs assessment with various hospice and hospital programs; and formative research focus groups with parents. Content will be developed for the first two modules, "In the Beginning" and "Collaborating with Medical Teams," of the parent guidebook. Outlines for the child's activity book and the provider facilitator's guide will also be developed. A feasibility study will be conducted to determine the appropriateness and viability of the prototype. Phase II will involve the completion of content for the parent guidebook and child activity book, filming the video/DVD component, development and completion of the provider booklet and facilitator's guide, as well as a full-scale evaluation of the Communic-Aid product to assess its effectiveness in improving family communication. Open family communication is a critical and widely recommended support mechanism for families enduring the difficulty of LTIs in children. This practical and innovative program will fill an unmet need in the pediatric hospice and palliative care field.

描述（由申请人提供）：在第一阶段 SBIR 拨款中，Danya International, Inc. 建议开发和评估 Communic-Aid 计划，该计划是为家长、团体协调员和直接护理提供者提供的实用、创新和综合资源支持家庭与患有危及生命疾病 (LTI) 的学龄儿童进行沟通。患有 LTI 的儿童的父母面临着许多重大且重要的问题；其中一个问题——我是否应该与我的孩子谈论死亡？——是这项拟议工作的核心关注点。因此，该项目的目标是开发和评估以家庭为中心的干预措施，以增加家庭成员之间关于 LTI、死亡和临终的积极沟通。拟议的产品将被设计为多媒体程序，包括： 家长指南，可用作家长的自我指导支持工具，或作为辅导员主导的、基于小组的工具；一本儿童活动书；视频/DVD；为机构和直接护理提供者提供的随附小册子；以及为提供者（例如儿童生活专家、儿科护士、心理学家、社会工作者）在小组环境中实施该计划提供的协调员指南。 在第一阶段期间，研究团队将根据我们的合作伙伴、内容顾问和顾问小组成员的意见，完成深入的形成性研究；对各种临终关怀和医院项目进行需求评估；以及与家长一起进行的形成性研究焦点小组。将为母指南的前两个模块“开始”和“与医疗团队合作”开发内容。还将制定儿童活动手册和提供者协调员指南的大纲。将进行可行性研究以确定原型的适当性和可行性。第二阶段将包括完成家长指南和儿童活动手册的内容、拍摄视频/DVD 部分、开发和完成提供者手册和辅导员指南，以及对 Communic-Aid 产品进行全面评估，以确保评估其在改善家庭沟通方面的有效性。 对于遭受儿童长期感染困难的家庭来说，开放的家庭沟通是一种重要且广泛推荐的支持机制。这一实用且创新的计划将填补儿科临终关怀和姑息治疗领域未满足的需求。