Technological advances in video conferencing, online communication, and streaming audio/visual presentations render the test of a caregiver education and support website intervention in mental health feasible. Equally important, the widespread growth of Internet access makes a test of such an intervention particularly timely.
In this study, we are evaluating the benefits of using the internet, accessed from participants' homes, to provide education and support to caregivers of persons with schizophrenia and schizoaffective disorder. In spite of the development of novel antipsychotic medications for these illnesses, poor treatment adherence continues to be a prevalent difficulty, and is associated with increased probability of relapse. Participation in family psychoeducational programs for schizophrenia has been found to reduce patient relapse rates and decrease relative stress. Nevertheless, participation rates are often low, reflecting both family impediments to attendance (e.g., transportation difficulties, time constraints, sensitivity to stigma) and limited availability. We are investigating whether using newer technologies can improve accessibility to family educational programs.
Our 12 month website intervention is composed of a private, password-protected website on a secure server with educational materials (e.g. coping with caregiver depression and anxiety) augmented with brief streaming video lectures by VA and UCLA staff, links to other mental health resources, and a discussion board. In addition, the intensive intervention also incorporates three mental health professional hosted family online chats: 1) weekly one-hour chats for six months and biweekly for six months with a VA psychologist to discuss and review the educational materials and problem-solve; 2) biweekly 30 minute chats with a VA psychiatrist to discuss medication and illness-related issues for the first six months; and 3) 30 minute weekly informal "social support" hosted chats for the first six months, with families then offered the opportunity to continue on their own. Chats are scheduled in the evening to accommodate participants' schedules. Participants are entered in closed cohorts of 5-6 relatives, to encourage the development of social support and cohesion. In this controlled trial, we are collecting data on patient clinical status and medication compliance, and information on relative illness knowledge, family burden, and perceived social support for 18 months from baseline, permitting a six month follow-up period. We hypothesize that participation in the website will increase treatment compliance, reduce patient exacerbations by increasing family knowledge of illness management, and minimize family burden. We are also collecting intensive implementation data (e.g. website hits; number of chat lines; access problems, etc).
We had initially envisioned our project as being placed on a VA server. Due to VA security concerns after 9/11, we had to reconfigure our website and place it on a private server. This delayed the inception of the project, and we were approved for an additional year of operation. The website intervention has been fully operational for 2 years and we are collecting and analyzing participation and follow-up data at this point. Even with extensive recruitment efforts, identifying caregivers with home internet access, particularly among a VA population, has been challenging. Our modal participant is the mother of an ill twenty to forty year old child, although we have also had sibling, spouse, and adult child participants. On average, participants attend the chats about 60% of the time during the intensive phase of the project (the first six months); paticipation declines somewhat after that point. Hospitalization rates tend to be low during participation in the program (less that 20%). Feedback from participants, both from formal questionnaires and informal chat comments, has been positive, particularly regarding the professionally-hosted chats. It has been more difficult to establish "family-to-family" chats in the later part of the intervention. No statistical results are available yet as data collection and analysis continue.
We intend our end product to be a set of empirically-validated low-cost materials which has the potential to be exported to multiple VA sites, used by families unable to attend face-to-face meetings, and adaptable to other psychiatric disorders. As a first step in this dissemination, we have developed a proposal to test the intervention with caregivers of persons with Alzheimer's.
- Glynn SM. Psychiatric Rehabilitation in Schizophrenia: Advances and Challenges. Clinical Neuroscience Research. 2003 Sep 1; 3:23-33.
- Cohen AN, Drapalski A, Glynn S, Medoff D, Fang L, Dixon L, Young AS. Preferences for family involvement in care by consumers with serious mental illness. Poster session presented at: AcademyHealth Annual Research Meeting; 2013 Jun 25; Baltimore, MD.