Communic-Aid

描述(由申请人提供)：在第一阶段SBIR赠款中，丹亚国际公司建议开发和评估社区援助计划，这是一项实用、创新和全面的资源，适用于父母、团体协助者和直接护理提供者，以支持家庭与患有危及生命的疾病(LTI)的学龄儿童进行沟通。患有LTI的儿童的父母面临许多重要的问题；其中一个问题-我应该还是不应该与我的孩子谈论死亡？是这项拟议工作的核心问题。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LTIs、死亡和死亡的积极沟通。拟议的产品将被设计为一种多媒体方案，其中包括：一本家长指南，可作为家长自我指导的支持工具或作为促进者主导的团体工具；儿童活动手册；视频/DVD；机构和直接护理提供者的配套手册；以及在团体环境中实施该方案的提供者(例如，儿童生活专家、儿科护士、心理学家、社会工作者)的促进者指南。 在第一阶段期间，研究团队将通过以下方式完成密集的形成性研究：我们的合作伙伴、内容顾问和咨询小组成员的投入；各种临终关怀和医院项目的需求评估；以及与家长的形成性研究重点小组。将为家长指南的前两个模块--“一开始”和“与医疗队合作”--开发内容。还将制定儿童活动手册的大纲和提供者辅导员指南。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，编写和完成提供者手册和促进者指南，以及对社区援助产品进行全面评估，以评估其在改善家庭沟通方面的有效性。 开放的家庭沟通是一种关键的和被广泛推荐的支持机制，适用于忍受儿童长期感染困难的家庭。这一实用和创新的计划将填补儿科临终关怀和姑息治疗领域尚未满足的需求。

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.