Communic-Aid: Support for Families

沟通援助：对家庭的支持

• 批准号: 7997128
• 负责人: CYNTHIA D BAKER
• 金额: $ 38.54万
• 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 2012-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7997128
• 关键词: Advocacy; Advocate; Age; Anxiety; Award; Bereavement; Bite; Books; California; Caregivers; Caring; Cessation of life; Child; Child Care; Childhood; Commit; Communication; Communities; Complex; Coping Behavior; Coping Skills; Development; Development Plans; Diagnosis; Education; Educational process of instructing; Effectiveness; Emotional; Ensure; Evaluation; Face; Family; Family member; Feedback; Film; Focus Groups; Goals; Health Personnel; Healthcare; Home Health Agency; International; Knowledge; Language; Life; Medical; Medical Care Team; Medical center; Michigan; National Institute of Child Health and Human Development; Nonprofit Organizations; North Carolina; Nurses; Palliative Care; Parents; Participant; Pediatric Hospitals; Phase; Physicians; Policies; Printing; Procedures; Process; Production; Provider; Psychologist; Public Health; Published Comment; Quality of life; Randomized; Religion and Spirituality; Research; Research Proposals; Resources; Role; School-Age Population; Self Efficacy; Siblings; Small Business Innovation Research Grant; Social Workers; Specialist; Stress; Support Groups; Supportive care; Techniques; Testing; Training; Universities; Work; Writing; base; coping; design; efficacy testing; end of life; experience; flexibility; guidebooks; handbook; hospice environment; improved; innovation; meetings; member; multidisciplinary; outcome forecast; product development; programs; public health relevance; social; willingness

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.

该第二阶段小企业创新研究（SBIR）提案的目的是继续开发和评估沟通援助：家庭支持（“沟通援助”），这是一种实用，创新和全面的资源，可供护理人员和直接护理提供者使用，以支持与患有危及生命疾病（LTI）的学龄儿童进行开放式家庭沟通。完整的沟通辅助计划包括一本带补充视听节目（DVD）的护理人员指南和一本家庭活动手册。沟通援助还将包括一个促进者指南，供医疗保健工作人员在以支持小组的形式与家庭实施沟通援助时使用。患有LTI的儿童的照顾者面临许多重大和重要的问题，包括是否，如何以及何时与他们的孩子谈论他们的疾病，即将进行的治疗程序，预后，甚至即将死亡。其他关注点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开放和诚实的沟通有利于LTI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）。尽管有证据支持关于儿童的疾病，死亡和垂死的公开沟通的好处，但很少有资源可以教照顾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，或提供者如何最好地支持这种类型的家庭沟通。通信援助将满足这一需求，支持照顾者，因为他们科普整个疾病过程中，并改善照顾者和医疗保健团队之间的沟通。在第二阶段项目期间，Danya建议完成所有产品组件的开发，包括家庭活动手册、视听节目、辅导员指南和护理人员指南的最后两个模块。内容将通过与照顾者，提供者和LTI儿童进行的形成性研究来了解。一旦产品开发完成，我们将对产品组件进行严格的评估，以了解Communication-Aid对护理人员与儿童、其他家庭成员和医疗团队使用开放式沟通技术的意愿以及护理人员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《看护者指南》的质量审查，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。评估的结果将用于对产品进行改进， 公共卫生相关性：研究一致表明，家庭成员之间关于疾病和死亡的开放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（斯蒂尔，2002; Kreicbergs，Valdimarsdsttir，Onelvv，Henter，& Steineck，2004）。尽管这对儿童和家庭有明显的好处，但目前还没有全面的方案来教导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沟通，或教导提供者如何最好地支持这种家庭沟通。传播援助将填补儿科临终关怀和姑息治疗领域未满足的需求，并最终通过提高这些儿童及其家人的应对技能和生活质量来为公共卫生做出贡献。