Views and Beliefs of Vitiligo Patients in Online Discussion Forums: A Qualitative Study
Individuals with chronic illnesses turn to online communities to engage in asynchronous peer-to-peer exchanges to better understand and manage their disease. Messages and advice exchanged by online users with vitiligo are not well characterized. We conducted a qualitative study to explore the content exchanged by individuals with vitiligo in online forums. An interpretive research paradigm was utilized to assess public online forum content. A systematic search using the phrases online forum vitiligo support, vitiligo online message board, and vitiligo forums identified 39 relevant forums; 9 of them met inclusion criteria, with 382 total anonymous users. Major themes and subthemes included vitiligo disease management, homeopathy/home remedies, psychosocial impact, public perceptions, and camouflage/concealment.
Practice Points
- Online forums provide invaluable insight on vitiligo disease management, psychosocial impact, and burden on quality of life. Patient care can be improved by inquiring where patients seek information and whether online forums are utilized.
- Commonly discussed topics in online forums were cosmetic concealment of vitiligo lesions and homeopathy or “cure” discussions. Health care providers can engage in honest conversations about evidence-based medical treatments for vitiligo. The interest in cosmetic management highlights a relevant research area in this field.
- Health care providers can better serve patients with vitiligo by providing online resources that are reputable and can help guide patients to credible internet sources such as the Global Vitiligo Foundation.
“I hate my life with vitiligo yet really I feel so selfish that there is much worse suffering in the world than a few white patches.”
Other advice was very practical:
“I hope it isn’t vanity that is tearing you apart because that is only skin deep. Make a fashion statement with hats.”
Some users acknowledged and adopted the mantra that vitiligo is not a somatic condition or “physical ailment,” while others emphasized its pervasive psychological burden:
“I still deal with this psychologically . . . You must keep a positive attitude and frame of mind . . . Vitiligo will not kill you, but you do need to stay strong and keep your head up emotionally.”
“I am just really thankful that I have a disease that will not kill me or that has [not] affected me physically at all. I consider myself lucky.”
Disease Management: Treatment, Vitiligo Course, Advice-Seeking, Camouflage—The range of information discussed for treatment was highly variable. There were many accounts in which users advised others to seek professional help, namely that of a dermatologist, for a formal assessment. Many expressed frustrations with treatments and their ineffectiveness, to which the majority of users said to consult with a professional and to remain patient and hopeful/optimistic:
“The best thing to do would be to take an appointment with a dermatologist and have the discoloration checked out. That’s the only way to know whether it is vitiligo or not.”
“My way of dealing with it is to gain control by camouflage.”
“The calming effect of being in control of my vitiligo, whether with concealers, self-tan or anything else, has stopped my feelings of despair.”
