Van Uden-Kraan, C. et al.:Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors

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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 stageOverview 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: