Dataset Information

Health-Related Coping and Social Interaction in People with Multiple Sclerosis Supported by a Social Network: Pilot Study With a New Methodological Approach.

ABSTRACT:

Background

Social media are a vital link for people with health concerns who find in Web communities a valid and comforting source for information exchange, debate, and knowledge enrichment. This aspect is important for people affected by chronic diseases like multiple sclerosis (MS), who are very well informed about the disease but are vulnerable to hopes of being cured or saved by therapies whose efficacy is not always scientifically proven. To improve health-related coping and social interaction for people with MS, we created an MS social network (SMsocialnetwork.com) with a medical team constantly online to intervene promptly when false or inappropriate medical information are shared.

Objective

The goal of this study was to assess the impact of SMsocialnetwork.com on the health-related coping and social interaction of people with MS by analyzing areas of interest through a Web-based survey.

Methods

Referring to previous marketing studies analyzing the online platform's role in targeted health care, we conducted a 39-item Web-based survey. We then performed a construct validation procedure using a factorial analysis, gathering together like items of the survey related to different areas of interest such as utility, proximity, sharing, interaction, solving uncertainty, suggestion attitude, and exploration.

Results

We collected 130 Web-based surveys. The areas of interest analysis demonstrated that the users positively evaluated SMsocialnetwork.com to obtain information, approach and solve problems, and to make decisions (utility: median 4.2); improve feeling of closeness (proximity: median 5); catalyze relationships and text general personal opinions (sharing: median 5.6); get in touch with other users to receive innovative, effective, and practical solutions (interaction, solving uncertainty, and suggestion attitude medians were respectively: 4.1, 3, and 3); and share information about innovative therapeutic approaches and treatment options (suggestion attitude: median: 3.3).

Conclusions

SMsocialnetwork.com was perceived by users to be a useful tool to support health-related coping and social interaction, and may suggest a new kind of therapeutic alliance between physicians and people with MS.

SUBMITTER: Lavorgna L

PROVIDER: S-EPMC5533941 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BACKGROUND:Of newly diagnosed HIV positive men who have sex with men (MSM) in the Netherlands, 29% have a non-Western migration background (MSM-NW). Among MSM-NW, HIV positivity rates are high (0.8%-2.0%), as is the proportion of late stage infections (39%). Factors such as HIV and sexual orientation-related stigma may form barriers for timely testing. Innovative approaches for HIV testing are needed to better reach MSM-NW. Social network testing (SNT) for HIV is an evidence-supported approach where peer recruiters identify persons (network associates) who could benefit from testing in their social or sexual networks. Web-supported SNT might be particularly promising for reaching people who may not be reached by regular care. OBJECTIVE:The purpose of this paper is to describe the design of our pilot PREVENT (Peer-Empowered Voluntary Extended Network Testing). In this pilot, we will explore whether SNT using HIV self-tests is feasible and acceptable among MSM-NW in the Netherlands and whether it reaches those who were never or not recently tested for HIV (>1 year ago). METHODS:The project aims to include 50 to 60 MSM and MSM-NW peers who will distribute 4 to 5 oral HIV self-tests each aiming to reach 200 network associates (NAs). Enrollment of peers includes 4 steps: (1) fostering interest in becoming a peer by health care professionals at sexual health clinics, HIV treatment clinics, and community settings; (2) sending peer contact information to the peer coordinator; (3) registering peers and giving program instructions by the peer coordinator and referring to the Web-based training at time2test; and (4) receiving precoded HIV self-tests for distribution in the peers' networks. NAs who receive the self-test will log in with their test package code in the time2test application for step-by-step test instructions. After testing is complete, NAs receive tailored follow-up information depending on their test result. RESULTS:Between January and May 2019, 10 STI clinics and 7 HIV treatment clinics started recruiting peers. Results of the PREVENT pilot are expected in December 2020. CONCLUSIONS:This is the first Web-supported peer-driven SNT pilot using HIV self-tests in the Netherlands and one of the first in Europe. Implementation is considered successful if it reaches MSM-NW who were never or not recently tested for HIV. Additionally, it may encourage conversations within the networks about risk behavior and barriers to HIV testing, potentially contributing to the Joint United Nations Programme on HIV/AIDS goal of zero HIV infections. TRIAL REGISTRATION:Netherlands Trial Registry NL7424; https://www.trialregister.nl/trial/7424. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/14743.