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

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

  • 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
  • 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
  • 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
  • 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
  •  
  •  
  • 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
  • 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.
  • 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.
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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)
  • 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
  • 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.
    • “ 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!”
  • 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)
    • “ 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.”
  • 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
  • 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
  • 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
  • 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
  • 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.
  • 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.
  • 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
  • Financers
    • This project is financed by: