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Certain patients with RA may benefit from online, disease-focused social support
An online support system designed to allow patients with rheumatoid arthritis to learn and interact with other patients and caregivers benefited some patients, according to recently published research.
A diversified sample of 19 patients with rheumatoid arthritis (RA) were selected for in-depth analysis from a group of 154 patients recruited to evaluate the Oneself website designed by the University of Lugano in Switzerland and the Swiss Rheumatology Association. The design followed the results of two studies that asked patients with RA about the main difficulties they faced in relation to the consequences of pain and about needs that were not being met by their significant others with the intent to understand the patients’ point of view. Two components of health empowerment, health literacy and psychological empowerment were integrated into the design.
A library of information was added to the website to help patients learn about the importance of early diagnosis and early symptoms of the disease and to deter feelings of skepticism and distrust of providers expressed by some patients in earlier studies. Common reactions following diagnosis, such as depression, denial, self-isolation and anger, were examined in a section on living with arthritis where alternative strategies and advice about disease acceptance were available. A section about family was created to address social support deficits and provide suggestions about addressing needs and how to avoid conflict dynamics. The sections included videos in addition to text information.
Interactions with experts and other patients was available in the interactive portion of the website to help fill support deficits and provide support that may be missing. A chat room was available and weekly meetings were conducted with patients and rheumatologists, physical therapists and others and focused on topics that may not be commonly discussed during a medical examination.
Patients were interviewed for about 1 hour after 8 weeks of using the website to provide opinions about the website and what factors motivated or discouraged their participation.
All patients interviewed responded that the official weekly meetings with doctors and patients was the primary motivating influence and was viewed as an opportunity to obtain professional advice and learn about how other people cope with symptoms and challenges and manage the stress associated with the disease. Reliability of the sources of information was also cited by patients as an important factor, and management of the site by university professionals and attendance by medical professionals were key components to influencing patients’ trust and motivation to interact. The local nature of the study also increased trust as reported by patients, according to the researchers.
Anonymity motivated some patients to interact, while others expressed a desire to have a visual interface. The presence of a moderator was reported to positively influence interaction and in keeping the discussion focused.
“Oneself was mainly used because of the presence of doctors, and users were much less interactive on a lay level. ... Oneself helped patients more on a practical level, boosting their capacity for everyday management of the disease and, thus, aspects of their quality of life,” the researchers wrote. “It was less successful in changing deeper mindsets, such as perceived social support, acceptance and empowerment ... and was perceived as a tool for obtaining professional advice and learning about how others deal with the disease, but not necessarily as a network for interpersonal interactions or support.” – by Shirley Pulawski
Disclosure: The researchers report no relevant financial disclosures.