“The needs and experiences of patients and professionals concerning the online community ‘Rheumatism and (having) children’ on MijnZorgnet.nl: A feasibility study”

Abstract

Background: The online community ‘Rheumatism and (having) children’, is a community for patients and professionals who aim to share information, experiences and support. Although, there is interaction in the community, the needs and experiences of the participating patients and professionals were unclear and the usability in a larger group was unknown. Aim: To investigate the feasibility of the existing community ‘Rheumatism and (having) children’ on MijnZorgnet.nl, in order to further develop an appropriate intervention additional to the current rheumatic, nursing care. Methods: This was a feasibility study with a mixed-method design. An online questionnaire, content analysis of the postings in the existing community and an online focus group were used. Eleven patients and four professionals who use the online community participated. Outcome parameters were: the use, ease of use and usability of the online community experienced by patients and professionals. Other parameters were the needs for information and support of patients. Results: Patients visit the community if they have questions about their illness. A visit is on average once a month and lasts less then 30 minutes. Patients found the community not very easy to use and experienced technical problems with logging in. Professionals considered the community usable and were more positive about the ease of use; although they also experienced problems with logging in. Patients appreciate the online community for finding reliable information and experiences of others. Conclusions: This study provided positive results concerning the feasibility of the online community ’Rheumatism and (having) children’ in this small group of patients and professionals. The community seems to have an added value in addition to the standard care. Recommendations: Adjustments need to be made, like more information and experiences on the community, clearer layout en solving technical problems. Thereafter the online community could be further distributed as an additional intervention to the current rheumatic, nursing care.