Date Presented 3/31/2017
This session discusses the themes that emerged from discussion boards that were part of a self-management program for people with systemic sclerosis. Themes revealed more positive than negative strategies, thus supporting the inclusion of social interactions in self-management programs.
Primary Author and Speaker: Janet Poole
Additional Authors and Speakers: Sharon Newbill, Jennifer Serrano, Pedro Cuencas, Dinesh Khanna
BACKGROUND: Self-management programs help people with chronic conditions develop skills to manage symptoms, psychosocial consequences, and lifestyle changes. The majority of studies evaluating these programs rely on changes in client-reported outcomes. However, self-management programs offered via the Internet provide opportunities for social interactions using online discussion boards and forums. Forums provide opportunities to share information on challenges, success stories, and social support. But the content of these boards is often not analyzed. We developed an Internet self-management program for people with a rare chronic condition, systemic sclerosis (SSc), with input from people with SSc (Poole, Mendelson, Skipper, & Khanna, 2014; Poole, Skipper, & Mendelson, 2013). SSc is a connective tissue disease characterized by skin thickening, vascular insufficiency (Raynaud’s phenomenon), and fibrosis of internal organs. Appropriately 150,000 people in the United States have the systemic form; thus, people with SSc may not have access to support groups or education programs and may not have met anyone with the disease. The program also features a discussion board and forum where participants can respond to facilitators’ posts and posts by other participants.
PURPOSE: The purpose of this study was to examine posts from an online discussion board to identify common themes. Identifying themes may help improve the effectiveness of the program and determine whether and how the forum provides support needed to manage this complex disease. This information will also help occupational therapists understand the needs of people with this rare chronic condition.
DESIGN AND METHOD: This study is a qualitative analysis of a discussion board that is part of a randomized controlled trial of an Internet self-management program. Participants were 71 people with SSc who were randomized to the Internet-based program. Participants were 91% women, with a mean age of 54.3 yr and mean disease duration of 8.9 yr. Participants in the intervention group were asked to log into a discussion board weekly as each new module was opened. To encourage discussion, the 71 participants were divided into three smaller groups for the discussion board. A facilitator posted a question related to the content of the module each week to begin the discussion. Participants had unlimited access to the discussion boards throughout the duration of the study.
A total of 453 posts from three waves of participants were analyzed. Posts specific to the modules on self-advocacy, Raynaud’s phenomenon, fatigue, and coping were downloaded into a Microsoft Word document, then imported into NVivo 11 (QSR International, Doncaster, Victoria, Australia) for content analysis. Coping was coded to positive and negative coping strategies (Carver, Scheier, & Weintraub, 1989); all other modules were open (emergent) coded.
RESULTS: Categories mentioned by the majority of participants with representative quotes will be reported. Management strategies was the major category that emerged for the modules covering Raynaud’s and fatigue. Learning to cope was another major category for fatigue. All coping strategies were positive, with active coping, support from family and friends, and acceptance predominant. Self-advocacy yielded the greatest variation in categories as context occurred to the majority with medical professionals, insurance companies, and at work. Others spoke of the importance of support groups in learning self-advocacy and perceiving self-care as self-advocacy.
CONCLUSION: Analysis of the content of the posts from a discussion board as part of an Internet self-management program revealed more positive strategies than negative. These findings support the inclusion of social interactions in self-management programs.
IMPACT STATEMENT: Findings from this study are important to developing interventions for persons with chronic conditions. Opportunities for social interactions through the intervention itself or referrals to support groups should be included.
References
Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56, 267–283. https://doi.org/10.1037/0022-3514.56.2.267
Poole, J. L., Mendelson, C., Skipper, B., & Khanna, D. (2014). Taking charge of systemic sclerosis: The effectiveness of an Internet self-management program. Arthritis Care and Research, 66, 778–782. https://doi.org/10.1002/acr.22192
Poole, J. L., Skipper, B., & Mendelson, C. (2013). Evaluation of a mail-delivered, print format, self-management program for persons with systemic sclerosis. Clinical Rheumatology, 32, 1393–1398. https://doi.org/10.1007/s10067-013-2282-7
