Communic-Aid: Support for Families

本第二阶段小型企业创新研究(SBIR)提案的目的是继续开发和评估社区援助：支持家庭(“社区援助”)，这是一个实用、创新和全面的资源，为照顾者和直接护理提供者支持与患有危及生命的学龄儿童(LTI)的公开家庭沟通。完整的社区援助计划包括一本带有补充视听程序(DVD)的护理员指南，以及一本家庭活动手册。社区援助还将包括一份促进者指南，供医护人员在以支持小组的形式与家庭实施社区援助时使用。患有下呼吸道感染的儿童的照顾者面临许多重要的问题，包括是否、如何以及何时与他们的孩子谈论他们的疾病、即将到来的治疗程序、预后，甚至即将到来的死亡。其他担忧集中在如何与孩子的医疗团队互动和沟通，以最有效地为孩子和家人辩护。研究一致表明，家庭成员之间关于疾病和死亡的公开和诚实的沟通有利于患有LTI的儿童的家庭，并改善垂死儿童及其父母和兄弟姐妹的应对和生活质量(Steele，2002；Kreicbergs，Valdimarsdottir，Henter，&Steineck，2004)。尽管有证据支持就儿童的疾病、死亡和垂死进行公开沟通的好处，但很少有资源可以教照料者如何在家庭环境中促进关于疾病、死亡和垂死的公开和直接沟通，或向提供者说明如何最好地支持这种类型的家庭沟通。社区援助将通过支持照顾者在整个疾病过程中应对并改善照顾者与卫生保健团队之间的沟通来满足这一需求。在第二阶段项目中，丹亚计划完成所有产品组件的开发，包括家庭活动手册、视听节目、辅导员指南和护理者指南的最后两个模块。内容将通过与照顾者、提供者和患有LTI的儿童进行的形成性研究来提供信息。一旦产品开发完成，我们将对产品组件进行严格的评估，看看社区辅助对照顾者使用开放式沟通技术与儿童、其他家庭成员和医疗团队的意愿以及照顾者使用这些技术的自我效能有什么影响(如果有的话)。提供者将参与对《护理者指南》的定性审查，以确保材料适合家庭并与家庭相关，并对文化和宗教多样性敏感。此评估的结果将用于在此之前对产品进行改进 公共卫生相关性：研究一贯表明，家庭成员之间关于疾病和死亡的公开和诚实的沟通有利于患有危及生命的疾病的儿童的家庭，并改善垂死儿童及其父母和兄弟姐妹的应对和生活质量(Steele，2002；Kreicbergs，Valdimarsdsttir，Onelvv，Henter，&Steineck，2004)。尽管这对儿童和家庭有明显的好处，但目前还没有现有的综合方案来教育和支持照顾者在家庭环境中促进关于疾病、死亡和死亡的公开和直接的沟通，或教提供者如何最好地支持这种类型的家庭沟通。社区援助将填补儿科临终关怀和姑息治疗领域这一未得到满足的需求，并最终通过改善这些儿童及其家庭的应对技能和生活质量来促进公共卫生。

DESCRIPTION (provided by applicant The purpose of this Phase II Small Business Innovation Research (SBIR) proposal is to continue development and evaluation of Communic-Aid: Support for Families ("Communic-Aid"), a practical, innovative, and comprehensive resource for caregivers and direct care providers to support open family communication with a school-age child with a life-threatening illness (LTI). The complete Communic-Aid program contains a Caregiver Guidebook with supplemental audiovisual program (DVD), and a Family Activity Book. Communic- Aid will also include a Facilitator's Guide for healthcare staff to use when implementing Communic-Aid with families in a support group format. Caregivers of children with an LTI face many significant and important questions, including if, how, and when to talk to their child about their illness, upcoming treatment procedures, prognosis, or even impending death. Other concerns center around how to interact and communicate with their child's healthcare team to advocate most effectively for their child and their family. Research consistently shows that open and honest communication between family members about illness and death benefits the family of a child with LTI and improves the coping and quality of life of the dying child and his or her parents and siblings (Steele, 2002; Kreicbergs, Valdimarsdottir, Henter, & Steineck, 2004). Despite evidence supporting the benefits of open communication about the child's illness, death, and dying, very few resources exist to teach caregivers how to facilitate open and direct communication about the illness, death and dying within the family context, or to providers on how to best support this type of family communication. Communic-Aid will meet this need by supporting caregivers as they cope throughout the illness process and improving communication between caregivers and the health care team. During the Phase II project, Danya proposes to complete development of all product components, including the Family Activity Book, Audiovisual program, Facilitator's Guide, and the last 2 modules of the Caregiver Guidebook. Content will be informed by formative research conducted with caregivers, providers, and children with LTI. Once product development is complete, we will conduct a rigorous evaluation of the product components to see what effect, if any, Communic-Aid has on caregivers' willingness to use open communication techniques with the child, other family members, and the healthcare team as well as caregivers' self-efficacy in using these techniques. Providers will participate in a qualitative review of the Caregiver Guidebook to ensure that the materials are appropriate for and relevant to families and sensitive to cultural and religious diversity. The results of this evaluation will be used to make improvements to the product before PUBLIC HEALTH RELEVANCE: Research consistently shows that open and honest communication between family members about illness and death benefits the family of a child with a life-threatening illness and improves the coping and quality of life of the dying child and his or her parents and siblings (Steele, 2002; Kreicbergs, Valdimarsdsttir, Onelvv, Henter, & Steineck, 2004). Despite this clear benefit to the child and family, there are currently no existing comprehensive programs to teach and support caregivers in facilitating open and direct communication about the illness, death and dying within the family context, or to teach providers how to best support this type of family communication. Communic-Aid will fill this unmet need in the pediatric hospice and palliative care field, and ultimately contribute to public health by improving the coping skills and quality of life for these children and their families.