Internet Resource for Caregivers of Children with Cancer

癌症儿童护理人员的互联网资源

• 批准号: 6808799
• 负责人: DEBORAH A LEWIS
• 金额: $ 22.28万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-15 至 2006-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6808799
• 关键词: Internet; cancer information system; caregivers; clinical research; computer program /software; computer system design /evaluation; decision making; human subject; interview; nursing research; pediatric neoplasm /cancer; perception

DESCRIPTION (provided by applicant): When a child is diagnosed with cancer his/her family caregivers are faced with decisions that often must be made while the family simultaneously deals with overwhelming stresses related to the diagnosis, treatment and uncertainty of outcomes. Current models of family-centered healthcare emphasize the importance of provider-caregiver information-sharing to ensure understanding of information. However, for a variety of reasons it is difficult to achieve the desired level of face-to-face information exchange. As a result, family members are often left to seek information on their own and may make crucial healthcare decisions based on incomplete or misunderstood information. This proposal will seek to refine, implement and evaluate an innovative family-focused, web-based resource that provides patient-centered information and extends the process of family-provider communication beyond the clinical setting into the home and community. This Internet-based resource, entitled a "Caring Place", will provide individualized clinical information, patient-centered information resources, and access to online family-provider and family-to-family communication for caregivers of children with cancer. The specific aims of this research are to: (1) refine the "Caring Place" software to meet the information and communication needs of family caregivers; (2) implement the "Caring Place" website with a sample of family caregivers of children with cancer; and (3) describe the impact of the "Caring Place" website on family caregivers' information and communication needs; perceptions of healthcare collaboration and decision-making; patterns of use; and user characteristics. The intervention will involve (1) utilizing content experts and focus groups of family caregivers to refine the "Caring Place" content; (2) implementation of the "Caring Place with family caregivers (n=30) and healthcare providers (n= 10); (3) evaluation of the "Caring Place" using focused interviews with family caregivers (n=30) during implementation and at 6 and 12 months post-implementation to understand how the "Caring Place" is being utilized (or not) and what (if any) are the benefits to the participants. Healthcare providers (n=10) will also be interviewed. We will use ongoing web server log analysis, content analysis of electronic messages, and methodological triangulation to understand the characteristics of use of the "Caring Place". The ongoing development of the "Caring Place" will provide an innovative approach to assist family caregivers of children with cancer in meeting currently unmet information and communication needs, and will provide evidence regarding "best practice" in design and development of Internet resources to support communication and information sharing.

描述（由申请人提供）：当一个孩子被诊断患有癌症时，他/她的家庭照顾者面临着往往必须做出的决定，而家庭同时处理与诊断，治疗和结果的不确定性有关的压倒性压力。目前以家庭为中心的医疗模式强调提供者-护理者信息共享的重要性，以确保对信息的理解。然而，由于各种原因，很难实现所期望的面对面信息交流水平。因此，家庭成员往往不得不自己寻求信息，并可能根据不完整或误解的信息做出重要的医疗决定。这项提案将寻求完善，实施和评估一个创新的家庭为中心，基于网络的资源，提供以患者为中心的信息，并扩展家庭提供者的沟通过程超出临床环境到家庭和社区。这一名为“关怀之地”的基于互联网的资源将为癌症儿童的照料者提供个性化的临床信息、以病人为中心的信息资源以及在线家庭提供者和家庭与家庭之间的交流。本研究的具体目的是：（1）完善“关怀天地”软件，以满足家庭照顾者的信息和沟通需求;（2）以癌症儿童的家庭照顾者为样本，建立“关怀天地”网站;（3）描述“关怀天地”网站对家庭照顾者信息和沟通需求的影响;对医疗协作和决策的看法;使用模式;以及用户特征。干预措施将包括：（1）利用内容专家和家庭照顾者焦点小组改进“关爱场所”的内容;（2）与家庭照顾者（n=30）和保健提供者（n= 10）实施“关爱场所”;（3）在实施过程中以及实施后6个月和12个月，通过与家庭照顾者（n=30）的重点访谈，对“关爱场所”进行评估。实施情况，以了解“关爱场所”的使用情况（或未使用情况）以及参与者的利益（如果有的话）。还将采访医疗保健提供者（n=10）。我们将使用持续的网络服务器日志分析，电子信息的内容分析，以及三角测量方法来了解“关怀场所”的使用特征。目前正在开发的“关爱场所”将提供一种创新办法，协助癌症儿童的家庭照料者满足目前未得到满足的信息和通信需求，并将提供设计和开发因特网资源以支持通信和信息共享的“最佳做法”的证据。