Communic-Aid: Support for Families

沟通援助：对家庭的支持

基本信息

批准号：
8136168
负责人：
CYNTHIA D BAKER
金额：
$ 36.46万
依托单位：
DANYA INTERNATIONAL, INC.
依托单位国家：
美国
项目类别：
财政年份：
2008
资助国家：
美国
起止时间：
2008-04-10 至 2013-09-29
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8136168
关键词：
Advocacy Advocate Age Anxiety Award Bereavement 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 Health Personnel Healthcare Home Health Agency Hospice Care 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

项目摘要

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.

说明（由申请人提供。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通信援助：对家庭的支持（“通信援助”），这是一种实用、创新和全面的资源，旨在帮助护理人员和直接护理提供者支持与患有危及生命的疾病 (LTI) 的学龄儿童进行开放式家庭沟通完整的沟通援助计划包含一本带有补充视听节目 (DVD) 的护理人员指南和一份家庭活动手册。沟通援助还将包括一份协调员指南，供医护人员在以支持小组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、如何和以及。何时与孩子谈论他们的疾病、即将进行的治疗程序、预后，甚至即将到来的死亡其他问题集中在如何与孩子的医疗团队互动和沟通，以最有效地为孩子及其家人辩护。研究一致表明，家庭成员之间关于疾病和死亡的开诚布公的沟通对 LTI 儿童的家庭有益，并改善临终儿童及其父母和兄弟姐妹的应对方式和生活质量（Steele，2002；Kreicbergs，Valdimarsdottir），亨特和斯坦内克，2004）。尽管有证据支持就孩子的疾病、死亡和临终进行公开沟通的好处，但很少有资源可以教导看护者如何促进在家庭背景下就疾病、死亡和临终进行公开和直接的沟通，或者向提供者教导如何最好支持这种类型的家庭沟通。 Communic-Aid 将通过支持护理人员应对整个疾病过程并改善护理人员与医疗团队之间的沟通来满足这一需求。在第二阶段项目中，Danya 建议完成所有产品组件的开发，包括家庭活动手册、视听程序、辅导员指南以及看护者指南的最后两个模块。内容将通过与护理人员、提供者和患有 LTI 的儿童进行的形成性研究来提供。产品开发完成后，我们将对产品组件进行严格评估，看看 Communic-Aid 对护理人员与孩子、其他家庭成员和医疗团队使用开放式沟通技术的意愿有何影响（如果有）以及护理人员使用这些技术的自我效能。提供者将参与对《看护者指南》的定性审查，以确保这些材料适合家庭并与家庭相关，并且对文化和宗教多样性敏感。此次评估的结果将用于之前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诚布公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方式和生活质量（Steele，2002 年；Kreicbergs、Valdimarsdsttir、Onelvv、Henter 和 Steineck，2004 年）。尽管这对儿童和家庭有明显的好处，但目前还没有全面的计划来教导和支持护理人员在家庭背景下促进有关疾病、死亡和临终的公开和直接沟通，或教导提供者如何最好地支持此类类型的家庭沟通。 Communic-Aid 将填补儿科临终关怀和姑息治疗领域未满足的需求，并通过提高这些儿童及其家人的应对技能和生活质量，最终为公共卫生做出贡献。