Health Boards
Objective:
To determine the demographics, usage patterns, attitudes, and experiences of online support site users.
Design:
Online survey.
Patients:
A total of 260 subjects recruited from 5 online psoriasis support groups.
Main Outcome Measures:
An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented.
Results:
The mean (SD) age of respondents was 40.1 (11.5) years (range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P = .002), but not with improvements in psoriasis severity.
Conclusions:
Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities.
Source: jamanetwork.com
So there you have it. Come and join us at Psoriasis Club and speak with others just like you.
*This thread is closed. All introductions are closed after 90 days to save confusion.
You are welcome to start new threads in any other sections of your choice.
To determine the demographics, usage patterns, attitudes, and experiences of online support site users.
Design:
Online survey.
Patients:
A total of 260 subjects recruited from 5 online psoriasis support groups.
Main Outcome Measures:
An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented.
Results:
The mean (SD) age of respondents was 40.1 (11.5) years (range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P = .002), but not with improvements in psoriasis severity.
Conclusions:
Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities.
Quote:
Psoriasis currently affects approximately 0.6% to 4.8% of the world's population. In addition to the well-recognized skin and joint manifestations, psoriasis impairs many aspects of individual well-being, including emotional, physical, sexual, and financial status. An estimated 10% of individuals affected by psoriasis have had suicidal ideations, a prevalence surpassing many other medical conditions. As a result, it is a necessity to provide patients with access to psychological support.
Patient support groups are one source of such assistance. They are designed to develop and reinforce positive coping styles known to be associated with improvements in both medical and social outcomes. In the United States, approximately 3% to 4% of the population annually engages in support group activity, and around 25 million Americans are estimated to have participated at some point in their lifetime. There are, however, a number of challenges with traditional face-to-face groups, including geographic barriers, embarrassment, limited space, and time constraints.
The worldwide rise in Internet usage has offered new ways for patients to interact. Despite initial concerns that online activity might lead people to withdraw from social interaction, a number of recent reports have noted that use of the Internet can empower people, thus improving social support and self-esteem. There has been a dramatic rise in the number of user-generated health care–related Web sites and online support sites. People with chronic disease are believed to relate best to Web-based information produced by other patients. Internet support groups share common objectives with their face-to-face counterparts but have strengths and weaknesses unique to the online setting. Although online support may lack the immediacy and intensity of a group meeting, it allows members to access information at a time and place of their choice. In addition, it offers individuals the advantage of anonymity and perceived lack of judgment. The benefits of structured, moderated online support programs have been demonstrated for patients with back pain, heart disease, lung disease, and type 2 diabetes mellitus. However, no structured programs have been developed for patients living with chronic skin disease. Indeed, little is currently known about the online user population living with certain dermatologic conditions, their drive to participate in online support groups, and their experiences within these virtual communities.
We conducted a Web-based cross-sectional survey study of people with psoriasis involved in online support groups. To our knowledge, this is the first survey study to describe user characteristics and the perceived benefits of online support groups in the field of dermatology. This study offers a richer insight into the demographics, usage patterns, attitudes, and experiences of participants involved with these virtual communities.
Source: jamanetwork.com
So there you have it. Come and join us at Psoriasis Club and speak with others just like you.
*This thread is closed. All introductions are closed after 90 days to save confusion.
You are welcome to start new threads in any other sections of your choice.