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

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

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

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

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.

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.

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

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

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

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

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

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

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)

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

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.

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!”

“ 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)

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.”

“ 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 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

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

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

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.

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.

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

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:

This project is financed by: