Development of a health-related website for parents of children receiving hematopoietic stem cell transplant: HSCT-CHESS

IntroductionParents 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.MethodsParental 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™). CHESSTM 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.ConclusionAs 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.

[1]  Gillian A Laven,et al.  DEVELOPING AND EVALUATING THE GRIEFLINK WEB SITE: PROCESSES, PROTOCOLS, DILEMMAS AND LESSONS LEARNED , 2004, Death studies.

[2]  G. Paré,et al.  Internet use and the logics of personal empowerment in health. , 2008, Health policy.

[3]  Bret R. Shaw,et al.  Effects of using online narrative and didactic information on healthcare participation for breast cancer patients. , 2008, Patient education and counseling.

[4]  Gregory Makoul,et al.  The use of patient and provider perspectives to develop a patient-oriented website for women diagnosed with breast cancer. , 2008, Patient education and counseling.

[5]  S. Kaplan,et al.  Maternal perspectives on children's health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. , 2006, Journal of pediatric psychology.

[6]  J. Hibbard,et al.  Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. , 2004, Health services research.

[7]  Robert P. Hawkins,et al.  CHESS: Ten Years of Research and Development in Consumer Health Informatics for Broad Populations, Including the Underserved , 2001, MedInfo.

[8]  H. Winefield,et al.  Setting up a health education website: practical advice for health professionals. , 2004, Patient education and counseling.

[9]  D. Gustafson,et al.  Impact of a patient-centered, computer-based health information/support system. , 1999, American journal of preventive medicine.

[10]  David H Gustafson,et al.  Needs Assessment for cancer patients and their families , 2004, Health and quality of life outcomes.

[11]  ANNETTE DE VITO DABBS,et al.  User-Centered Design and Interactive Health Technologies for Patients , 2009, Computers, informatics, nursing : CIN.

[12]  D H Gustafson,et al.  Empowering patients using computer based health support systems. , 1999, Quality in health care : QHC.

[13]  M. Iansiti,et al.  Developing products on Internet time. , 1997, Harvard business review.

[14]  J. Difede,et al.  Anxiety, depressive, and posttraumatic stress disorders among mothers of pediatric survivors of hematopoietic stem cell transplantation. , 2004, Pediatrics.

[15]  C. Champagne,et al.  Design and Implementation of an Interactive Website to Support Long-Term Maintenance of Weight Loss , 2008, Journal of medical Internet research.

[16]  David B Buller,et al.  Attributes of Interactive Online Health Information Systems , 2005, Journal of medical Internet research.

[17]  Gilan El Saadawi,et al.  Caring Connection: Developing an Internet Resource for Family Caregivers of Children with Cancer , 2005, AMIA.

[18]  M. Solomon.  Information Technology to Support Self-Management in Chronic Care , 2008 .

[19]  N. Terrin,et al.  A Brief Report of Caregiver Needs and Resource Utilization During Pediatric Hematopoietic Stem Cell Transplantation , 2009, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.