ABSTRACT
INTRODUCTION: Parents of pediatric hematopoietic stem cell transplant (HSCT) play a pivotal role in the care of their child during and after transplant. In addition to the child's comforter, parents also serve as care coordinators and conduits of communication between various health care providers, family and community members. The stress on the parent and family is enormous during this process, which for many is compounded by geographic dislocation to accompany their child during the rigorous treatment and recovery process. For many parents, their own recovery spans months to years. METHODS: Parental activation, a process of becoming informed to participate in decisions, collaborate with health care providers, and manage care provided the conceptual framework to develop an eHealth approach for this population. HSCT-CHESS was developed, based on previous success with an existing eHealth system of integrated services, the Comprehensive Health Enhancement Support System (CHESS). CHESS(TM) is designed to help individuals and families cope with a health crisis or medical concern. The iterative user-centered development process for HSCT-CHESS included parents of HSCT recipients, representatives from an HSCT Advocacy Group, and members of the clinical, research, development and design teams. This rigorous process, including online focus groups and surveys, utilization of a parental user group, and an editorial and development process are described. CONCLUSION: As the population of cancer survivors and caregivers increase and as the oncology workforce becomes more stretched; developing eHealth applications may be an approach to address many of caregivers unmet needs. The purpose in describing this process is to help others when considering such an endeavor. HSCT-CHESS is now being tested in a randomized controlled trial versus standard care to evaluate its impact on the quality of life of both the parent and child HSCT recipient.
Subject(s)
Caregivers/psychology , Databases as Topic/statistics & numerical data , Hematologic Neoplasms/therapy , Hematopoietic Stem Cell Transplantation , Internet/statistics & numerical data , Parents/psychology , Adaptation, Psychological , Adult , Child , Female , Humans , Male , Prognosis , Stress, Psychological , Survival RateABSTRACT
This paper reviews the research and development around a consumer health informatics system CHESS (The Comprehensive Health Enhancement Support System) developed and tested by the Center for Health Systems Research and Analysis at the University of Wisconsin. The review will place particular emphasis on what has been found with regard to the acceptance and use of such systems by high risk and underserved groups.
Subject(s)
Health Promotion , Information Services , Medical Informatics Applications , Aged , Attitude to Computers , Female , HIV Infections , Humans , Internet , Male , Medically Underserved Area , Patient Education as Topic , Social SupportABSTRACT
The Comprehensive Health Enhancement Support System (CHESS) is an interactive computer system containing information, social support and problem solving tools. It was developed with intensive input from potential users through needs-assessment surveys and field testing. CHESS had previously been used by women in the middle and upper socio-economic classes with high school and college education. This article reports on the results of a pilot study involving eight African-American women with breast cancer from impoverished neighborhoods in the city of Chicago. CHESS was very well received, extensively used and produced feelings of acceptance, motivation, understanding and relief.
