What Now? An Innovative Web-based Tool to Help Family Members Navigate Schizophrenia with Awareness and Confidence

New England Research Institutes, Inc., Watertown DE

Investigators

Abstract

PROJECT SUMMARY/ABSTRACT Schizophrenia is a debilitating and costly psychiatric disorder which affects 1 in every 100 individuals in the U.S. The illness has severe consequences for psychological, social, and occupational functioning, which often leave individuals dependent on others for care and support. Schizophrenia not only takes a devastating toll on patients, it can place a tremendous burden on families who provide the bulk of care often without training and in isolation. For many individuals with schizophrenia family members are lifetime support systems. Family psychoeducation is a well-established and rigorously evaluated evidence-based practice for the treatment of schizophrenia. Meeting the needs of families by providing information, guidance, and techniques for coping, dramatically improves patient outcomes while also increasing relatives? well-being. Yet less than 10% of families receive any education or support. Because most families do not receive these valuable resources, there is a compelling need to develop new ways to disseminate evidence-based support that can be easily implemented and widely distributed. As outlined in NIMH?s strategic objectives, innovative technological services to support care and improve outcomes for both patients and their family members are critically needed. One way to bridge this gap and to increase accessibility of these resources is through the use of mobile web-based technologies. In the current study, we will develop an innovative, widely accessible and audience appropriate web-based tool to provide core elements of family psychoeducation designed to (1) cultivate knowledge and awareness; (2) generate empathy and insight into the experiences of people with schizophrenia; (3) build coping skills, problem solving techniques and effective communication; (4) develop strategies to combat stigma; and (5) identify and emphasize early intervention. This product is built upon the validated evidence base which confirms fostering practical competencies helps improve relationships, care, communication, and well-being. The product, which is customizable to accommodate a range of needs, includes didactic content; interactive experiential activities; documentary-style videos; and a library of video vignettes. During Phase I we will complete prototype development and feasibility testing with key stakeholders and families. Throughout this process we will integrate input from stakeholders, families, and our expert clinical advisors. Program development will include formative research to finalize the content, approach and strategies for engaging families in an easily understandable and meaningful way. The prototype will demonstrate the goals of the complete product including content, interactivity and videos for two thematic sections. We will use qualitative and quantitative methods to obtain feedback from stakeholders and relatives to determine usability, acceptability, and commercialization potential as well as to assess effectiveness of outcome measures in order to provide proof of concept for Phase II. The proposed product not only offers the potential for significant benefits to families dealing with schizophrenia, so, too, does it address a large currently untapped market.