Participant-Generated Content in Curriculum in a Multifamily Psychoeducation Group for Persons with Hepatitis C

Background and Purpose: Current guidelines recommend providers educate all Hepatitis C (HCV)-infected patients on the natural history of HCV, steps that can be taken to minimize progressive liver disease and liver damage, and risks and benefits of antiviral therapy. Unfortunately, research has demonstrated that HCV patients often have low levels of knowledge about HCV. Until now, existing educational programs for HCV have been created by healthcare professionals for patients, rather than in collaboration between patients and providers.  Recent research of this team has found striking differences between provider perceptions of care needs and those desired by HCV patients.  There has not been a focus on what patients want to know about management of HCV and whether it differs from what providers want patients to know.  The purpose of this study was to address this gap in the research by examining education topics selected by HCV patients and family members/caregivers participating in a clinical trial of an education/support group model.

Methods: The data for this article were collected as part of a NIAAA-funded randomized psychoeducation trial for patients with HCV and their family members. The project enrolled HCV patients in various stages of illness and disease progression. Central to the multifamily group model is that topics covered in the psychoeducation groups are systematically generated by the group members themselves.  Content was generated by members in each group in the initial session and rank ordered for preference, creating a curriculum unique to each.  Topics and rank order for each group were generated and a combined variable (rank order/number of groups a topic was chosen) created.

Results: Twenty-eight different topics were identified across 12 groups (study n=181).  Total number of topics listed across all of the groups was 102, averaging 8.5 per group.  Median rank orders ranged from 2.0–12.0, and number of times topics were ranked in individual groups ranged from 1-11.  Examination of the combined variable suggested that the topics divided into three separate clusters. The first cluster consisted of topics related to members’ personal relationship to HCV and included 5 topics. The next cluster consisted of medical aspects of HCV and included 7 topics. The third cluster consisted of topics of unique concerns and included the remaining 16 topics.

 Conclusions and Implications: A concern frequently expressed regarding generation of curricula when members are permitted to choose their own topics is that groups will choose idiosyncratic topics instead of opting for broad knowledge that clinicians consider important for them to have.  In fact, groups do choose idiosyncratic topics, but only after shared personal concerns and general knowledge have been satisfied.  Rather than viewing these topics as problematic in displacing other desirable topics, group facilitators need to allow members the opportunity to voice their unique concerns comfortable in the knowledge that these choices will not displace the information that the clinicians want them to have.