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.

描述（申请人提供的本级小型企业创新研究（SBIR）的目的是继续开发和评估通讯AID：对家庭的支持（“通信-AID”），这是一种实用，创新和全面的护理人员，直接护理人员和直接的护理提供者，以支持与人生疾病的开放式良好的疾病（lttimibib aide）的开放式沟通（lttimig aide）。计划（DVD）和一本家庭活动。最有效地为他们的孩子和家人提倡。研究一致地表明，家庭成员在疾病和死亡之间的开放诚实沟通使LTI的儿童家庭受益，并改善了垂死的孩子及其父母和兄弟姐妹的应对和生活质量（Steele，2002; Kreicbergs，Valdimarsdottir，Henter，Henter，＆Steineck，＆Steineck，＆Steineck，2004年）。尽管有证据支持有关儿童疾病，死亡和垂死的公开沟通的好处，但很少有资源来教导护理人员如何促进有关家庭环境中疾病，死亡和垂死的开放和直接沟通，或者向提供者或如何最好地支持这种类型的家庭交流。通信aid将通过支持护理人员在整个疾病过程中应对，并改善护理人员与医疗保健团队之间的沟通来满足这一需求。在II阶段项目中，Danya建议完成所有产品组件的开发，包括家庭活动书，视听计划，主持人指南以及Careger Guide Boide的最后两个模块。内容将由LTI的护理人员，提供者和儿童进行的形成性研究告知。产品开发完成后，我们将对产品组件进行严格的评估，以查看CommunicaID对看护人愿意与孩子，其他家庭成员和医疗团队使用开放式通信技术的影响，以及看护者在使用这些技术方面的自我效能。提供者将参与对看护人指南的定性审查，以确保材料适合家庭并相关，并且对文化和宗教多样性敏感。此评估的结果将用于对产品进行改进 公共卫生相关性：研究始终表明，家庭成员之间关于疾病和死亡的公开沟通使患有生命的疾病的孩子的家庭有益于垂死的孩子的应对和生活质量以及他或她的父母和兄弟姐妹的应对和生活质量（Steele，2002; Kreicbergs，kreicbergs，valdimarsdsttir，onelvv，onelvv，onelvv，henter＆Steerer＆Steeler，＆Steelereck，2004年）。尽管对儿童和家庭有如此明显的好处，但目前尚无现有的全面计划来教导和支持护理人员，以促进有关家庭环境中疾病，死亡和垂死的开放和直接沟通，或者教提供者如何为这种类型的家庭交流提供最好的支持。通信援助将满足儿科临终关怀和姑息治疗领域的这种未满足的需求，并最终通过提高这些儿童及其家人的应对技巧和生活质量来为公共卫生做出贡献。