Internet Resource for Caregivers of Children with Cancer

描述（由申请人提供）：当一个孩子被诊断出患有癌症时，他/她的家庭照顾者往往面临着必须做出的决定，而家庭同时要处理与诊断、治疗和结果不确定性相关的巨大压力。当前以家庭为中心的医疗模式强调提供者和护理者信息共享的重要性，以确保信息的理解。然而，由于种种原因，很难达到期望的面对面信息交换水平。因此，家庭成员往往需要自己寻找信息，并可能根据不完整或误解的信息做出关键的医疗保健决定。该提案将寻求完善、实施和评估一种创新的以家庭为中心的网络资源，该资源提供以患者为中心的信息，并将家庭提供者沟通的过程从临床环境扩展到家庭和社区。这个基于互联网的资源，名为“关爱之地”，将为癌症儿童的照顾者提供个性化的临床信息，以患者为中心的信息资源，以及在线家庭提供者和家庭间的交流。本研究的具体目的是：(1)完善“关怀场所”软件，满足家庭照顾者的信息沟通需求；(2)以癌症儿童的家庭照顾者为样本，实施“关怀之家”网站；(3)描述“关怀之家”网站对家庭照顾者信息沟通需求的影响；对医疗协作和决策的认知；使用模式；以及用户特征。干预将包括(1)利用内容专家和家庭照顾者焦点小组来完善“关爱场所”的内容；(2)与家庭照顾者（n=30）和医疗保健提供者（n= 10）实施“关怀之家”；(3)在实施期间和实施后6个月和12个月，通过与家庭照顾者（n=30）的重点访谈来评估“关怀场所”，以了解“关怀场所”的使用情况（或未使用）以及参与者的利益（如果有的话）。还将对医疗保健提供者（n=10）进行访谈。我们会持续使用网页伺服器日志分析、电子讯息内容分析和三角测量方法，以了解“关怀地方”的使用特点。“关怀场所”的持续发展将提供一种创新的方法，帮助癌症儿童的家庭照顾者满足目前尚未满足的信息和交流需求，并将提供有关设计和开发互联网资源以支持交流和信息共享的“最佳实践”的证据。

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.