Poor disease self-management in chronic diseases is a problem and is associated with poorer health outcomes and higher health care resource utilization. Compared to Caucasians, African-Americans have even poorer disease self-management worse outcomes in most chronic diseases. Patients often do not perceive disease severity and susceptibility to disease complications since severe symptoms of chronic conditions such as such as gout, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) etc. are usually intermittent. Our objective is to develop a patient-centered, culturally relevant narrative intervention, or "storytelling", based on the Health Belief Model (HBM) for behavior change, using narrative communication theory as methodological framework for intervention delivery. We aim to improve disease self-management among African-American Veterans, using gout as our "test case". Storytelling in the patient's own voices has the power to directly and more effectively address patients' intrapersonal and structural barriers to optimal disease management and reinforce the benefits associated with chronic disease self-management. While shown to be successful in hypertension, an asymptomatic chronic disease, no evidence of its efficacy exists for chronic symptomatic diseases, such as COPD, CHF, gout etc.
Our long-term objective is to improve health outcomes in Veterans and reduce health disparities. The objective of the proposed study, the first step in this direction, was to develop a novel storytelling intervention in Veterans' own voices to improve disease self-management and outcomes in African-American Veterans with gout, the most common type of inflammatory arthritis in Veterans, associated with significant pain and suffering, utilization and cost. Our Specific Aim (SA)s were: SA1. Formatively Identify Components of a Video Intervention - Conduct formative evaluations with patient interviews to develop a theory-based, culturally-relevant storytelling intervention to promote disease self-management among African American Veterans with gout; SA2, Create an Intervention Video - Develop and test the feasibility of a storytelling intervention based on the results of Specific Aim 1; and SA3, Develop a Video Storytelling Manual - Develop a manual for use by investigators that describes the storytelling concept and presents step-by-step procedures for creating video storytelling interventions.
For Aim#1, we performed in-depth interviews in 36 African-American veterans with gout at Birmingham and Philadelphia VA using HBM probes to identify barriers and facilitators to optimal gout self-management. For Aim#2, we videotaped the stories from 12-15 veterans, decomposing into story units, and finalizing the storytelling intervention alongside a control intervention. For Aim #3, we developed a storytelling manual to be made available to other investigators for knowledge dissemination.
Results and Findings:
1.Aim 1: During our in-depth interviews in 36 African-American veterans with gout at Birmingham and Philadelphia VA, we identified facilitators to optimal gout self-management, mapped to our theoretical conceptual model, the health belief model (HBM). We also found some cultural differences by site, which were incorporated into the next aim (Aim #2). The main themes for better gout self-management for African-American veterans with gout were: fear of pain, desire to adhere to the medication regimen; the importance of self-discipline, lifestyle changes and becoming informed; and developing a positive outlook. A manuscript describing the results from these focus groups was submitted to a peer-review journal Arthritis, Care and Research and is now in press. This formative work laid the foundation of the storytelling video, the next aim (Aim 2)
2.Aim 2: We created, pilot-tested, iteratively refined and finalized a storytelling video intervention and a control intervention, with "Learn more" section. We first began development of an intervention video by inviting 12-15 storytelling stars from our qualitative work in Aim#1, chosen due to their eloquence and persuasive of their stories, videotaping the stories, decomposing into story units, rating stories on constructs of HBM and narrative communication theory (3 independent raters). We then added didactic material as a "Learn more" section using material developed for patients and tested its feasibility in focus groups in 32 African-American veterans with gout at Birmingham and Philadelphia VA. We then iteratively refined and finalized the storytelling intervention alongside a control intervention, on stress reduction, for the control arm. The production of the storytelling video as well as the stress reduction video is complete. For privacy and per VA IRB regulations, these are stored behind the VA firewall. These videos will be used as interventions in our funded randomized trial, currently underway.
3.Aim 3: We developed a storytelling manual, which has the information on "how to" build a storytelling intervention in detailed description. It can be used for knowledge dissemination for others to model similar intervention/s for other diseases.
This study serves the VA's mission of improving the health of veterans and by focusing on understudied minorities with poorer disease outcomes, addresses a priority area of health disparities. The results of this study will lead to a low cost patient-centered intervention for African American Veterans with gout to improve patient outcomes, that we proposed to test in a future randomized trial. This trial is now funded as an IIR, and is currently underway. If successful, the storytelling intervention can be adapted to other chronic diseases such as COPD, CHF etc. Gout will serve as a "use case" for chronic disease self-management.
None at this time.
Health Systems, Autoimmunity, Allergy, and Immunology
Technology Development and Assessment
Adherence, Ethnicity/Race, Symptom Management