What Now?
Family psychoeducation and skills training is an underutilized evidence-based practice for the treatment of schizophrenia. As a result, family members face the challenges of navigating psychotic symptoms and social functioning impairments experienced by their loved one without adequate knowledge and skill, which can increase family stress and adversely affect recovery for the individual with schizophrenia. Family members often experience burden, chronic strain, and powerlessness magnified by isolation and stigma.
THE INTERVENTION
We conducted a first round of focus groups with family members recruited from the community (N=28) and clinicians (N=18) to understand the practical and conceptual needs of family members to inform program design, content, and interactive features.
Through combined content analysis of caregiver and clinician data, over 250 topics and challenges were identified. What Now? includes clips of video interviews with family members and professionals, interactive quizzes, myth-busters, communication skills training tips, and community resources.
Four key content areas were included on the website:
• Understanding Schizophrenia to provide a multidimensional look into schizophrenia–causes, symptoms, diagnostic process, early intervention, and family emotional responses.
• Exploring Treatments to outline the treatment process and options available.
• Maintaining Wellness to cover key aspects of daily self-care, recovery, and the role of families in maintaining long-term wellness.
• Building a Relationship focuses on caregiver self-care and provides techniques for communication and problem-solving skills.
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RESULTS
We recruited 60 family members, gave them unlimited access to the website for one month, and evaluated pre-post changes in knowledge about schizophrenia, well-being, and family communication. These 60 family members and 32 clinicians were also recruited for a second round of focus groups to assess the feasibility, tolerability, and usability of the website.
At one-month evaluation, the prototype was associated with significant improvements in caregiver strain, knowledge about schizophrenia, empowerment, and communication baseline to one-month follow-up in this sample (p<.05). Burden did not significantly change from baseline to one-month follow-up (>.05). Caregivers were highly engaged in the What Now? prototype review. They demonstrated tremendous enthusiasm and support for the program and offered insightful feedback about its strengths and areas for modification. Many reiterated “I can’t emphasize enough that there just isn’t anything else out there like this.” One caregiver explained it as “I felt like I had an oxygen tank put in front of me.” Caregivers indicated the four thematic sections were comprehensive, relevant to their experiences, and helpful. Overall, “What Now?” can provide easily accessible and widely available support to family members (importantly, even extended family members) of individuals with schizophrenia. This website has the potential to not only improve caregiver well-being, but also to improve outcomes for the individuals with schizophrenia whose family members access this resource.
NEXT STEPS
To test the website in a randomized controlled trial. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.
PROJECT STAFF
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