Van Uden-Kraan, C. et al.: Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success ...
Nelly van Uden-Kraan, Stans Drossaert, Erik Taal, Mart van de Laar & Erwin Seydel Patient-initiated online support groups:...
Support groups <ul><li>Support groups </li></ul><ul><li>People in stressful circumstances often turn to support groups  </...
Online support groups   <ul><li>Increase in use of the Internet  </li></ul><ul><li>85% of the Dutch households have an Int...
 
 
Introduction (1) <ul><li>Online patient support groups are currently mushrooming </li></ul><ul><ul><li>No sophisticated te...
Introduction (2) <ul><li>Successful versus unsuccessful groups </li></ul><ul><li>Successful groups versus groups that neve...
Objectives <ul><li>To explore the motives and goals of webmasters who initiated their own online patient support groups. <...
Methods (1) <ul><li>Criteria online support groups </li></ul><ul><li>Dutch public and private online support groups </li><...
Methods (2) <ul><li>Semi-structured interview schedule </li></ul><ul><li>Measures: </li></ul><ul><ul><li>Demographics  </l...
Methods (3) <ul><li>Procedure </li></ul><ul><ul><li>19 interviews at the webmasters’ home  </li></ul></ul><ul><ul><li>4 in...
Methods (4) <ul><li>Data analysis </li></ul><ul><li>“ Inductive analysis” </li></ul><ul><ul><li>Identifying themes that em...
Demographic characteristics webmasters <ul><li>Sex   </li></ul><ul><ul><li>20 women and 3 men </li></ul></ul><ul><li>Mean ...
Characteristics online support groups   <ul><li>Initiation </li></ul><ul><ul><li>Between 1999 and 2007  </li></ul></ul><ul...
Motives for initiation and goals of the group <ul><li>Altruistic motives and goals </li></ul><ul><ul><li>Creating a meetin...
Motives for initiation and goals of the group <ul><li>Intrinsic motives and goals </li></ul><ul><ul><li>Hobby </li></ul></...
Definition and extent of success <ul><li>Success can be defined as the fulfillment of the goals the webmasters had in mind...
<ul><li>“ I wanted to create a meeting place for people with breast cancer. And in the hope that it will give people suppo...
Definition and extent of success <ul><li>Success can be defined as the fulfillment of the goals the webmasters had in mind...
<ul><li>“ It has become more of a social club than a place to really exchange information and experience. Not that you hav...
Definition and extent of success <ul><li>Success can be defined as the fulfillment of the goals the webmasters had in mind...
Success factors in the initiation stage <ul><li>Overview decisions in the initiation stage: </li></ul><ul><li>Access </li>...
Success factors in the evolution stage (1) <ul><li>Overview decisions in the evolution stage: </li></ul><ul><li>Promoting ...
Success factors in the evolution stage (2) <ul><li>Keeping the group alive </li></ul><ul><li>Respond to questions of parti...
Conclusion (1)   <ul><ul><li>Overall conclusions decisions initiation stage: </li></ul></ul><ul><ul><li>Decisions taken in...
Conclusion (2) <ul><li>Overall conclusions decisions evolution stage: </li></ul><ul><ul><li>Managing an online support gro...
Limitations <ul><li>Retrospective study </li></ul><ul><ul><li>Webmasters themselves reported which factors contribute to t...
Financers <ul><li>This project is financed by: </li></ul>
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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]

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

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