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Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors [4 1530 Aud Van Uden Kraan]
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Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors [4 1530 Aud Van Uden Kraan]

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    • 1. Van Uden-Kraan, C. et al.: Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors
      • This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team
      • Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com )
      • Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php
    • 2. Nelly van Uden-Kraan, Stans Drossaert, Erik Taal, Mart van de Laar & Erwin Seydel Patient-initiated online support groups: motives for initiation, extent of success and success factors Medicine 2.0 Toronto, 2008
    • 3. Support groups
      • Support groups
      • People in stressful circumstances often turn to support groups
      • Support groups can offer:
      • Understanding and emotional support
      • Personal experiences
      • Social comparison
      • “ Helper therapy” principle
    • 4. Online support groups
      • Increase in use of the Internet
      • 85% of the Dutch households have an Internet connection
      • 47% of the Dutch prefer to receive medical information by means of the Internet
      • Types of online support groups
      • Internet discussion groups
      • Chats
      • E-mail groups
    • 5.  
    • 6.  
    • 7. Introduction (1)
      • Online patient support groups are currently mushrooming
        • No sophisticated technical skills needed
        • Limited costs
      • Types of online support groups
        • Professionally led support groups: groups initiated by health care providers or researchers
        • Lay-expert groups: groups initiated by patients or patient organizations
      • Little is known about the motives and goals of people who voluntarily initiate an online group
    • 8. Introduction (2)
      • Successful versus unsuccessful groups
      • Successful groups versus groups that never get off the ground or bleed to death at a later stage.
      • Success factors
      • Initiation stage
        • The period before the online support group goes online.
      • Evolution stage
        • The evolution stage starts the moment the group goes online and is ongoing.
    • 9. Objectives
      • To explore the motives and goals of webmasters who initiated their own online patient support groups.
      • To learn more about how webmasters of online support groups define success, and if they were of opinion that their own groups were a success.
      • To explore the factors that according to the webmasters determine the success of online patient support groups.
    • 10. Methods (1)
      • Criteria online support groups
      • Dutch public and private online support groups
      • Webmasters of online support groups included
      • Breast cancer: 8 webmasters
      • Fibromyalgia: 8 webmasters
      • Arthritis: 7 arthritis
    • 11. Methods (2)
      • Semi-structured interview schedule
      • Measures:
        • Demographics
        • Characteristics of the online support groups
        • Motives for starting a group and goals of the group
        • Webmasters’ definitions of success
        • Success factors in the initiation stage and in the evolution stage
    • 12. Methods (3)
      • Procedure
        • 19 interviews at the webmasters’ home
        • 4 interviews at another place preferred by the webmaster
      • Length of the interviews
        • Between 1 and 2,5 hours
    • 13. Methods (4)
      • Data analysis
      • “ Inductive analysis”
        • Identifying themes that emerge from the data
      • Two coders
        • Independently reading transcripts interviews
        • Developing thematic framework
        • Independently coding transcript on the basis of the thematic framework
        • Discussing results to reach consensus
    • 14. Demographic characteristics webmasters
      • Sex
        • 20 women and 3 men
      • Mean age
        • 46 years (24 to 65 years)
      • Education
        • 4 lower level of education
        • 10 secondary level of education
        • 9 higher level of education
      • Diagnosis
        • 21 patients
        • 2 spouses of patients
    • 15. Characteristics online support groups
      • Initiation
        • Between 1999 and 2007
      • Activity
        • Between several hundreds of messages and no messages at all
      • Access
        • 13 private groups
        • 10 public groups
      • Embedding
        • 18 stand-alone groups
        • 5 groups of official Dutch patient associations
    • 16. Motives for initiation and goals of the group
      • Altruistic motives and goals
        • Creating a meeting place where support and experiences can be exchanged
        • Providing information (for patients and for the general public)
        • Empowering patients in various ways (focus on doctor-patient relationship, social well-being or increased optimism and control)
        • Public goal (create understanding for patients suffering from illness among the general public)
    • 17. Motives for initiation and goals of the group
      • Intrinsic motives and goals
        • Hobby
        • Extension of existing website about illness
        • Advertisement for a book about illness
    • 18. Definition and extent of success
      • Success can be defined as the fulfillment of the goals the webmasters had in mind at the moment the group was initiated.
    • 19.
      • “ I wanted to create a meeting place for people with breast cancer. And in the hope that it will give people support and recognition, whatever. And it does!”
    • 20. Definition and extent of success
      • Success can be defined as the fulfillment of the goals the webmasters had in mind at the moment the group was initiated.
      • 18 webmasters were of opinion that their groups were a success
      • 5 webmasters were of opinion that their groups were no success (anymore)
    • 21.
      • “ It has become more of a social club than a place to really exchange information and experience. Not that you have to complain about rheumatism all the time, but it is our aim after all to be a source of information with lay experts.”
    • 22. Definition and extent of success
      • Success can be defined as the fulfillment of the goals the webmasters had in mind at the moment the group was initiated.
      • 18 webmasters were of opinion that their groups were a success
      • 5 webmasters were of opinion that their groups were no success (anymore)
      • Strikingly, the number of the participants on the forum or the level of activity was not related to the webmasters’ opinion about their groups’ success
    • 23. Success factors in the initiation stage
      • Overview decisions in the initiation stage:
      • Access
        • Public versus private
      • Embedding
        • Stand-alone versus embedded in an organization
      • Content
        • Chit chat allowed versus chit chat not allowed
        • Medical experts present versus no medical expert present
      • Design
        • Structure into categories versus bulletin board
        • Free software versus paid software
    • 24. Success factors in the evolution stage (1)
      • Overview decisions in the evolution stage:
      • Promoting the online support group
      • Financing the online support group
      • Keeping the group alive
      • Extent of moderation
      • Organizing meetings and creating rituals
      • Input of the participants
    • 25. Success factors in the evolution stage (2)
      • Keeping the group alive
      • Respond to questions of participants quickly
      • Start new topics frequently
      • New participants should keep joining the group
      • Make new participants feel at home (e.g., by sending special welcome messages)
      • Providing new members promptly with an explanation of how the forum works (e.g., how do I post a personal message)
      • Pay adequate attention to the new participant’s story
      • New participants should be supported by experienced participants
      • Experienced participants should be cherished for their role in the group
    • 26. Conclusion (1)
        • Overall conclusions decisions initiation stage:
        • Decisions taken in the initiation stage should be in line with the goals of the group.
        • Decisions taken during the initiation stage should be considered carefully.
        • Not all decisions taken during the initiation stage can be reversed.
    • 27. Conclusion (2)
      • Overall conclusions decisions evolution stage:
        • Managing an online support groups will occupy much energy and time.
        • Having one webmaster responsible for the group is a risk for continuation.
        • Webmasters should (constantly) monitor participants’ whishes.
    • 28. Limitations
      • Retrospective study
        • Webmasters themselves reported which factors contribute to the success of their online patient support groups
      • Small sample size
        • Unknown to what extent these results are representative for groups aimed at patients with either a mental illness or dominated by male participants
    • 29. Financers
      • This project is financed by: