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.
| Lewis, Deborah; Cooper, Jason; Gunawardena, Sriya (2006) Caring Connection: Internet resources for family caregivers of children with cancer. AMIA Annu Symp Proc :1007 |
| Lewis, Deborah; Gundwardena, Sriya; El Saadawi, Gilan (2005) Caring connection: developing an Internet resource for family caregivers of children with cancer. Comput Inform Nurs 23:265-74 |
