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thesis entitled

THE REALITIES OF LEADERSHIP IN ONLINE CANCER
SUPPORT GROUPS

presented by

Songyi Park

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THE REALITIES OF LEADERSHIP IN ONLINE CANCER SUPPORT GROUPS
By

Songyi Park

A THESIS

Submitted to
Michigan State University
In partial fulﬁllment of the requirements
for the degree of

MASTER OF ARTS
Department of Telecommunication, Information Studies and Media

2004

ABSTRACT
THE REALITIES OF LEADERSHIP IN ONLINE CANCER SUPPORT GROUPS
By

Songyi Park

The purpose of this thesis was to explore the realities of leadership in Online Cancer
Support Groups (OCSSGS) by focusing on the leaders’ formal status, profession, a degree
of participation, gender, and the types of support that they offer. Content analysis and
chi-square test were conducted on more than 1,300 messages posted by nine founders and
seven most active participants in eight public OCSGS in Yahoo!. The results of data
analysis demonstrated that: l) Leaders were categorized into observing founders,
participative founders and the most active participants. 2) The types of support in the
leaders’ messages are information, emotional support, social companionship and
organizational support. 3) The founders focused more on giving non-illness related
support, while the most active participants focused more on illness-related support
provision. 4) Female leaders focused more on giving social companionship and emotional
support, while male leaders focused on giving informational support. The absence of
healthcare experts in peer-led OCSGS and gender differences in the leaders’

communication style were discussed as the main implications of the results.

To My Savior, Jesus Christ

iii

ACKNOWLEDGEMENTS

First of all, I give my thanks to God, who allows me to have perseverance and
unwillingness to quit, for the miraculous wonders that He gave to me through the
procedure of writing this thesis.

I am very grateful to my thesis advisor, Dr. Pamela Whitten, for her guidance that
directed me to the right path when any obstacle appeared on my way. I am also grateful
to my other thesis committee members, Dr. Robert LaRose and Dr. Charles Steinﬁled, for
their helpful advice on this thesis. I also would like to give thanks to my academic
advisor, Dr. Bella Mody, for being a great help to many international students in the
department of Telecommunication.

I appreciate AIocilja’s family — Rex, Vangie and John Daniel- for their limitless
hospitality, kindness and prayers. I also thank my friends at F ICF of Trinity Church for
their continuous prayers for me. Especially, the friendship that I received from every
single one in the Bible study group, Prayer Walk team, and Music team will be engraved
in my heart forever.

I give my special thanks to all of my friends that I became to know at MSU by God’s
plan, for their prayers, advice and encouragement.

However, any word in this world is not enough to express my thankfulness to my
family. I appreciate my parents, Jae-hwa Park and Hoi-ja Koo, for giving me a full trust
and endless support to me, no matter what my decision was, during the past years of my

stay in the US.

iv

TABLE OF CONTENTS

LIST OF TABLES ........................................................................... viii
CHAPTER ONE
INTRODUCTION ............................................................................ 1
CHAPTER TWO
LITERATURE REVIEW ..................................................................... 5
Online Support Groups (OSGS) Backgroud ........................................... 5
Strengths and weakness of OSGS ................................................ 5
Findings of the 086 studies ...................................................... 6
Online Cancer Support Groups (OCSGS) Background .............................. 9
Findings of the OCSG studies ................................................... 9
Strengths and weakness of OCSGS ............................................. 10
Gender Difference ........................................................................ 12
Gender differences in communication style .................................... 12
Gender differences in OCSGS .................................................... 13
E-Leadership ............................................................................... 1 6
Formal leadership roles ............................................................ 16
E-leaders’ tasks ..................................................................... 17
Leadership style .................................................................... 18
Leadership in Support Groups .......................................................... 20
Leadership in face-to-face support groups ...................................... 20
Leadership in OSGS ............................................................... 21
Leadership activity ................................................................. 24
Summary of Previous Studies .......................................................... 25
Research Questions ....................................................................... 28
CHAPTER THREE
METHODOLOGY ............................................................................. 30
Sample ..................................................................................... 30
Group Sampling ................................................................... 3O
Selection of Leaders .............................................................. 32
Posting Sampling .................................................................. 33
Data Collection ........................................................................... 34
Data Analysis .............................................................................. 34
RQl: What types of leaders do exist in OCSGS in terms of their formal
status, profession, and degree of participation? ..................... 35

RQ2: What are the recurring types of support in the messages posted by

the leaders of OCSGS? ....................................................

Inter-coder Reliability ....................................................
RQ3: Do types of support presented in the leaders’ messages differ

between the founders and the most active participants? ..............
RQ4: Do types of support presented in the leaders’ messages differ

depending on leaders’ gender? ...........................................

CHAPTER FOUR

RESULT .........................................................................................

RQI: What types of leaders do exist in OCSGS in terms of their formal
status, profession, and degree of participation? ........................
Founders ....................................................................
Most Active Participants .................................................

RQ2: What are the recurring types of support in the messages posted by
the leaders of OCSGS? ..................................... . ..............
Informational Support ....................................................

Illness-related information ..........................................
Information indirectly related with Illness ........................
Emotional Support .........................................................
Esteem support ......................................................
Empathy ...............................................................
Sharing illness history ...............................................
Sharing feelings......................................_ ................
Social Companionship ....................................................
Organizational Support ...................................................
Technical help ........................................................
Administrative work ................................................
Social management .................................................
RQ3: Do types of support presented in the leaders’ messages differ
between the founders and the most active participants? ..............

RQ4: Do types of support presented in the leaders’ messages differ

Depending on leaders’ gender? ..........................................

CHAPTER FIVE

DISCUSSION ..................................................................................
Healthcare Expert’s Absence in OCSGS ...............................................
Degree of Participation by Leaders ....................................................
Social Companionship in OCSGS ......................................................
Gender Differences in Social Control Style and Sharing Feelings .................
Limitations and Future Research .......................................................
Limitations

Future Research
APPENDIX

vi

35
36

37

37

38

42
42
43

44
45
45
46
46
47
47
48
49
50
51
51
52
52

56

58

61
63
66
68
69
73
73

74

A. Example of Sample Postings ......................................................... 77

B. Coding Key ............................................................................. 83
C. Coding Instruction ..................................................................... 84
BIBLIOGRAPHY .............................................................................. 1 00

vii

Table 1

Table 2

Table 3

Table 4

Table 5

Table 6

Table 7

Table 8

LIST OF TABLES

Example of Un-Moderated Group Information ...........................
Number of Subjects .............................................................
Number of Postings by Regular Posters and Leaders .....................
Participation by Leaders ....................................................
Table 5 - Types of Support by 3 Types of Leaders ........................
Types of Support between Founders and Most Active Participants...
Types of Support by Leaders’ Gender .......................................

Members’ Participation by Founder’s Participation .....................

viii

32

39

41

43

57

59

67

CHAPTER ONE

INTRODUCTION

In the United States, new e-technology formats are used increasingly by the growing
healthcare consumer population, driving the next generation of self-care by allowing
patients to manage their own health conveniently and proﬁciently (Forkner-Dunn, 2003).
According to a survey of the lntemet users in America conducted by Pew lntemet and
American Life Project (Fox and Follows, 2003), 80% of adult users or about 93 million
Americans have searched for at least 16 major health topics online. Online support
groups (OSGS) are one health-related e-technology formats that offer a convenient way of
obtaining disease-related support, since they may overcome some of the disadvantages of
face-to-face support groups, such as the limitations of locale, time and cost. Online
support groups exist for almost every disease and condition, and discussion topics within
each disease category seem limitless.

Online groups undergo seemingly random changes in the number of participants and
of messages. According to Butler (2001 ), membership size and communication volume
constitute the structural dimension of OSG characteristics. In this model of an online
group’s growth, as membership size and message volume in an online group increases,
more new members are attracted to the group. Another factor of an online group’s growth
at the structural level is the leadership in the group. (Butler, Sproull, Kiesler and Kraut, in
press). According to Butler and colleagues, technical infrastructure makes online group
communication possible and social behavior within online groups sustains these groups

over time. The researchers discussed that the necessary social behaviors for an online

group’s sustainability include social control Such as letting newcomers know the norms
of the group, managing disputes or discouraging exchange of off-topic messages, and
social encouragement entailing the promotion of desirable behavior among group
members. Therefore, leaders who usually do this control and encouragement activities are
important in that their work can protect the group from the abuse of the group, and can
maintain the group’s environment as comfortable and enjoyable so that members can
interact.

Leadership is one of the key factors of the groups’ sustainability and growth in
OSGS as well (Yun, Park and Kim, 2003; Wituk, Warren and Meissen, 2002). However,
no previous study has fully investigated online leadership. Most studies have focused on
the advantages and disadvantages of OSGS and the types of support exchanged within
OSGS, by using the method of content analysis of the messages posted by regular
members on the discussion board (e.g., Bresnahan and Murray-Johnson, 2002; Han and
Belcher, 2001; Perron, 2002). By looking at ﬁndings from these studies, it can be seen
that the disadvantages of OSGS are closely related to the realities of leadership in OSGS.
A lack of clear leadership was considered as a disadvantage of OSGS over face-to-face
support groups, especially in peer-led self-help groups where patients and caregivers
voluntarily organize the online support group. In this case, healthcare professionals’
involvement was suggested to correct possible misinformation.

Regardless of the fact that advantages and disadvantages of OSGS are sometimes
closely related with the leadership within the group, recent studies have failed to include
leadership activity as a factor of OSG’S sustainability at the structural level (e.g., Yun,

Park, Kim, Yoo, Kwak and Kang, 2004). Although Yun et al. were aware of the

difference between leaders and regular posters or lurkers, all messages on the bulletin
board at OSGS were analyzed by focusing only on which type of support they contained.
The researchers ignored “who” posted “how many” messages and “which types of
support” those messages included in OSGS. Therefore, it is necessary to examine the
realities of leadership in OSGS.

Since the support-seeking pattern of OSG varies according to diagnostic category
(Davison, Pennebaker and Dickerson, 2000), the current study focuses on a certain illness
type when researching leadership in OSGS. Particularly, people in the US. more and
more seek support related to cancer, since cancer is currently the second main cause of
death in the United States (American Cancer Society, 2001). A previous study about
support group participation shows cancer is common illness in not only face-to-face
support groups but also online (Pennebaker, 2000). Women with breast cancer shows a
very high participation rate in support groups in comparison to other illness groups
(Pennebaker, 2000). For example, women with breast cancer were 40 times more likely
to participate than people with heart disease. Cancer patients and their caregivers need
not only informational support but also emotional support, because they often suffer from
anxiety and depression due to the life-threatening illness experience. Therefore, Online
Cancer Support Groups (OCSGS) are a good context for examining leadership because
various types of support that leaders offer in their messages can be examined. To
examine the leadership in OCSGS is also meaningful and beneﬁcial to users of OCSGS in
that it can give a practical guideline that a leader should know when he or she facilitates

continuous growth of OCSGS.

Therefore, the current study will explore the realities of leadership in OCSGS by
focusing on how the unique features of leadership in computer-mediated communication
affect the quality of social support exchanged in OCSGS. The next chapter provides an
overview of research results to date and highlights important holes in OCSG leadership

research to date.

CHAPTER TWO

LITERATURE REVIEW

This chapter provides the overview of previous studies related to the realities of
leadership in OCSGS. Findings from previous studies in the area of OSG and OCSG
research are presented ﬁrst, including the advantages and disadvantages of OSGS or
OCSGS over face-to-face support groups and the unique features of these online groups.
It is followed by ﬁndings from previous OCSG research studies about gender differences.
Past studies found gender differences in communication style, in face-to—face support
groups, in OCSGS and in leadership style. The ﬁnal section of this chapter discusses
ﬁndings of previous studies about leadership including the unique characteristics of e-
leadership in general and leadership in support groups. Findings regarding leadership in
face-to-face support groups and in OSGS are also presented. A discussion also covers the
limitations of previous studies in examining the realities of leadership in OCSGS. At the
end of the chapter, for this thesis, four research questions are drawn from ﬁndings and

limitations of previous studies.

Online Support Groups (OSGS) Background

Strengths and weaknesses of OSGS
The advantages and disadvantages of OSGS are related to the characteristics of online
communication. OSGS offer many advantages over face-to-face groups. Asynchronous

communication in OSGS is considered as one of the beneﬁts that make it possible for

participants to transcend the limitations they experience in face-to-face groups.
Computer-medicated communication has facilitated more thoughtful and deliberative
self-presentations, interpersonal perceptions, and instrumental communication than is
normally undertaken in parallel face-to—face interactions (Bresnahan and Murray-
Johnson, 2002). Gaining accessibility, immediate opportunity to express participants’
needs and greater ﬂexibility in regard to time commitment, are also advantages of OSGS
(Perron, 2002).

However, compared to face-to-face groups, there also are certain disadvantages of
OSGS. Even the discussion board of OSGS itself expressed concern about negative social
consequences of the lntemet, namely the possibility of misinformation and an increase in

depression or isolation (Burrows, Loader and Muncer, 2000).

Findings_of the OSG studies

Previous studies about OSGS show the complementary nature of face-to-face cancer
support groups and OSGS. In other words, they go to OCSGS to seek to ﬁrlﬁll unsatisﬁed
needs, instead of participating in face-to-face support groups. It is known that a lack of
real-world social support is the predictor of active participation in the OSGS (Cummings,
Sproull and Kiesler, 2002). Therefore, the complementary nature of the relationship
between online and real-world support Should be used appropriately to drive their
integration and to beneﬁt participants. In a one-year prospective study about OSGS for
depression, the researchers at Johns Hopkins University School of Medicine found a
good example of the integration of online and real-world social support (Houston, Cooper

and Ford, 2002). The study found that OSGS for depression prompted users to take a

more active role in their own care, by encouraging them to ask questions of their
healthcare professionals, or to seek a change in medications.

Although seemingly mundane, the messages of OSG users provide social glue that
bonds participants and represents the essence of their mutual relationship (Lamberg,
2003). For this reason, a major interest of previous OSG studies was to examine
messages posted on the Web discussion board, to know what types of support are
exchanged in OSGS. Participants of OSGS discuss the impact of their illness on daily life,
relate experiences with clinicians and hospitals, enumerate beneﬁts and drawbacks of
medications and other treatments, review new research, and encourage others to seek help
and adhere to therapy. They often develop intimate, trusting relationships with group
members.

The content of these messages in OSGS were categorized into four types of support
by previous studies: information support, emotional support, social companionship and
tangible assistance (Braithwaite, Waldron and Finn, 1999; Bresnahan and Murray-
Johnson, 2002; Campbell, 2002; Yun et al., 2004). Though some members in OSGS still
send ﬂowers or money to others in crisis, the frequency of tangible assistance seems to be
lower than other types of support due to the online group’s distant communication
(Perron, 2002). Therefore, excluding rarely presented tangible assistance, the following
three types of support were considered as the main topics in the messages of OSGS (Yun

et al., 2004):

1) Informational support including two subcategories: education/ treatment]

diagnosis related and unrelated. Medication/ treatment/ diagnosis related informational

support refers to asking or giving illness information related to medication, treatment or
diagnosis. Medication/ treatment/ diagnosis unrelated informational support refers to
asking or giving information related to other aspects of the illness such as relevant
policies and laws.

(2) Social companionship refers to asking or giving a ‘sense of belonging’ by
sharing other aspects of life that are not necessarily related to the illness, and expressing a
willingness to communicate with others.

(3) Emotional support includes three subcategories of postings: esteem support,
empathy and personal sharing. Esteem support refers to affirming, acknowledging and
encouraging the recipient’s action, statement or point of view to support the recipient’s
self concept. Empathy refers to expressing that the poster knows and understands the
recipient’s feelings and sufferings and giving advice based on their own experiences.
Personal sharing refers to sharing details of personal illness histories or accounts of
personal feelings about the illness. Sharing personal experiences is important, since a
participant’s self-disclosure initiates a transactional relationship with another member for
the purpose of attracting social support through the open expression of concerns and

frustrations (Tichon and Shapiro, 2003).

However, there is something ignored by previous studies regarding the types of
support. Organizational support was not treated as one of the main support types
presented in the messages of OSGS. According to Yun and colleagues (2004),
organizational support refers to any support related to, social control and administration

work, such as deleting hostile messages, concern about advertisements, encouraging

other members’ participation, or posting a chat-room time. However, they did not include
it as the main topics in OSGS because the actual frequency of organizational support
occurring in their sample groups was not high. It is a natural result since the sample
postings were randomly pulled out of the messages posted by regular members. However,
organizational support is important especially when examining the leadership in OSGS,
since leaders usually undertake social control in the group.

The diagnostic category is known to affect the most frequent type of support in an
OSG. For example, online eating disorder support groups showed a high frequency of
sharing experiences and encouragement as emotional support on the discussion boards
(Campbell, 2002). Generally, participants in the physical illness support groups are said
to need more informational support than emotional support, while participants in the
mental illness support groups need more emotional support (Muncer, Burrows, Pleace,
Loader and Nettleton, 2000). Cancer is also a unique context in regard to social support.
Therefore, in the next section, results from previous studies in regard to types of social

support in the groups under the cancer category will be presented.

Online Cancer Support Groups (OCSGS) Background

Findings of OCSG studies

Previous studies about OCSGS show the complementary nature of face-to-face
cancer support groups and OCSGS (Davison, Pennebaker and Dickerson, 2000; Klemm
and Hardie, 2002; Turner, Grube and Meyers, 2001; Wright, 2002). Patients participated

more in OCSGS only when they perceived that the depth of support they received from

the OCSGS was high, and when the depth of support from the personal networks in their
real lives was low (Fogel, Albert, Schnabel, Ditkoff, and Neugut, 2002; Turner, Grube
and Meyers, 2001). In other words, if patients cannot satisfy their needs for support
related to their disease, they go to OCSGS to seek to fulﬁll their unsatisﬁed needs, instead
of participating in face-to-face support groups. For example, more depressed patients
with cancer tend to use lntemet support groups than use face-to-face groups (Klemm and
Hardie, 2002). A lack of real-world social support is a predictor of active participation in
the OSGS and integration of online and real-world support beneﬁts participants
(Cummings, Sproull and Kiesler, 2002). In a study about breast cancer support groups
exchanging social support over the CHESS computer network (2000), women
participants viewed their experiences with the computer mediated support group as an
additional and unique source of support in facing their illness.

Support posters from the online and face-to-face groups were signiﬁcantly
correlated, suggesting that broad tendencies to seek support do vary by diagnostic
category (Davison, Pennebaker and Dickenson, 2000). Particularly, breast cancer support
groups show high participation in both face-to-face support groups and online groups.
For this reason, a majority of OCSG studies have focused on the breast cancer groups,
and it is considered as a limitation of OCSGS studies, according to a recent review study
of previous research literatures (Klemm, Bunnelll, Cullen, Soneji, Gibbons and Holecek,

2003)

Strength and weakness of OCSGS

According to Wright (2002), OCSG participants’ perceptions of the advantages and

10

disadvantages of using OCSGS affect the scores of emotional support that they received.
Therefore, it is important to know what are the advantages and the disadvantages of
OCSGS. Generally, most of the advantages and disadvantages of OCSGS identiﬁed in
previous studies tend to be similar to the advantages and disadvantages of OSGS. OCSGS
are helpful for people in coping more effectively with their disease (Klemm et al., 2003;
Lieberman, Golant, Giese-Davis, Winzlenberg, Benjamin, Humphreys, Kronenwetter,
Russo, and Spiegel, 2003; Wright, 2002). The beneﬁts of OCSGS are not limited to
obtaining only informational support, but also emotional support such as sharing
experiences, venting feelings, and reducing depression and cancer—related trauma (Han
and Belcher, 2001; Lieberman et al., 2003; Winzelberg, 2003). Since it is possible to
avoid the pitfalls of traditional support groups such as ﬂuctuating attendance and
inconvenient meeting times in online groups, OCSGS may offer patients many of the
therapeutic features of face-to-face groups in the comfort and privacyof their own homes
with increased accessibility (Han and Belcher, 2001; Klemm, Reppert and Visich, 1998).
Though OCSGS offer many advantages, they also have some disadvantages,
compared to face-to—face cancer support groups. For example, OCSG disadvantages
include noise, negative emotions, large volumes of mail, and lack of physical contact and
proximity as disadvantages (Han and Belcher, 2001). Other potential negatives are
misinformation and promotion of unconventional therapies not yet proven effective
(Ross, 1999). Therefore, the possibility that the use of OCSG has a negative
psychological effect such as an increase in emotional suppression should not be ignored
(Klemm et al., 2003; Lieberman et al., 2003). OCSGS also offer patients many of the

therapeutic features of face-to-face support groups while avoiding the limitations of time

11

and location as other OSGS generally do, despite there still being a possibility of
misinformation or emotional isolation in the online interaction.

The fact that many of the previous studies about OCSGS have focused on breast
cancer was considered as a limitation of the research ﬁeld. However, these studies were
able to Show that unique features of female posters’ communication styles in those breast
cancer groups resulted in higher participation of the members and constant growth of the
group. Therefore, as one of the functional characteristics of OCSGS that draws a group’s
success, gender differences in communication style Should not be ignored when

examining the content of messages on the Web board of OCSGS.

Gender Difference

Gender differences in communication style

Generally, it is known that there are gender differences in the style of language used
in both written communication and face-to-face interaction (Tannen, 1990). Such
differences have also been found in electronic interactions (Kuntjara, 2002). Thus, it is
important to realize gender differences in communication style in OSGS, to better
understand the content of messages posted by the members of online breast cancer
support groups and online prostate cancer support groups.

In a study about the style and content of emails written by men and women to their
ﬁ'iends during the holiday season, some differences were found in their email topics
(Colley, 2002). Women’s emails addressed social and domestic topics of shopping,

nightlife and cost; men’s emails addressed topics of location, journeys and local people. It

12

showed that men build their social companionships differently from women.

Kuntjara (2002) summarized gender differences in online interactions as follows: 1)
Women tend to use frequent apologies and write shorter messages. The fact that women
tend to write shorter message can be a representation of the stronger bond between the
members in women groups built through more social companionship than in male
groups'. 2) Women contribute more overt expressions of agreement, appreciation and
support than men. 3) Women also hedge and present their assertions indirectly as
suggestions. 4) Women participated in online discussions to supplement and enhance
their communication with others. 5) Men’s language is characterized as aggressive,
assertive, matter-of-fact and critical; in addition, men interrupt more frequently. 6) A
common reason for men’s participation in online discussions was to avoid face-to-face

personal communication.

Gender Differences in OCSGS

Gender differences in communication styles also do matter in how men and women
cope with their disease. Men, in general, may not be as comfortable as women in asking
for support and revealing themselves, and as a result, there is under—representation of men
in cancer support groups in face-to-face settings (Klemm et al., 2003; Volkers, 1999).
Sharing feelings in support groups helps women cope better than men as cancer patients
and as caregivers. Moreover, women tend to have social support networks that men do

not. It is consistent with previous ﬁnding about gender differences in online

 

1 According to Hart and McLeod (2003), virtual team members with strong relationships communicated
more often, but their messages were short, perhaps attributable to the degree to which they had developed a
shared understanding about the meaning being conveyed.

13

communication that the motivation of participating in online discussion groups differs
between men and women (Kuntjara, 2002).

Although men traditionally are said to be unwilling to enter a support group since
they tend to keep things to themselves, a Signiﬁcant number of male patients with
prostate cancer access the lntemet to obtain cancer information (Smith, Devine, Jones,
DeNittis, Whittington and Metz, 2003). However, men and women in OSGS still differ in
their priorities and concerns. Men are more likely to use support groups as an educational
tool, while women tend to share personal experiences and encourage other women
(Volkers, 1999). Therefore, previous studies found that men in OCSGS ﬁrst seek
information such as understanding diagnosis and treatment, while women in OCSGS
more often exchange emotional support, such as sharing personal experience,
encouragement and social companionship (Pinnock, Jones and The Education Committee
of the Australian Prostate Cancer Collaboration, 2003; Klemm, Hurst, Dearholt and
Trone, 1999). In fact, men and women differ not only their motivation for participating in
support groups but also for the primary beneﬁts that they believe they receive from the
support groups. The primary beneﬁts women received from participation in the breast
cancer support groups in CHESS computer network were communicating with other
people who shared similar problems and helping others, which allowed them to change
their focus from a preoccupation with their own sickness to thinking of others (Shaw,
JcTavish, Hawkins, Gustafson and Pingree, 2000). This means that women participants
valued sharing personal experiences as the main type of social support and they

considered altruistic motivation as the main reason for active participation.

14

In sum, there is a distinct gender difference in communication style, in that women
tend to use frequent apologies and make a statement in an indirect way, while men’s
language is characterized as aggressive, assertive, matter-of-fact and critical. The reason
for participation in online discussion groups also differs depending on gender. As a
result, gender differences in communication style also inﬂuence men’s and women’s
different coping style with their diseases in OSGS. Men are more likely to use support
groups as an educational tool, while women tend to share personal experiences and
encourage other women. Previous studies found that men in OCSGS ﬁrst seek
informational help, while women in OCSGS more often exchange emotional support,
such as sharing personal experiences, encouragement and social companionship.

Gender differences even exist in the leadership style (Kabacoff, 1998). Women
leaders tend to be rated higher on people-oriented leadership skills, while men rated
higher on business-oriented leadership skills. Women leaders are said to possess
“feminine” qualities such as relationship building and teamwork that are valued in a more
collaborative and creative environment. Women leaders tend to have a higher level of
empathy than do men, which means that they demonstrate a more active concern for
other people and their needs and formed closer supportive relationship with others than
did men. In terms of communication style, women tend to state clear expectations for
others and more clearly express their thoughts than do men. Contrary to expectations,
women tend to score higher on a leadership scale measuring an orientation towards
production, which translates as their strong pursuit of achievement. Men’s leadership

tends to be oriented towards strategic planning and organizational vision. However, not

15

yet discovered is whether gender differences in leadership styles are found also in
OCSGS.

In the next section, existing ﬁndings from previous studies regarding not only
leadership styles but also leaders’ identity and tasks in online settings will be presented.

Findings related to leadership activities speciﬁcally in OSGS will follow.

E-Leadership
Helpful in knowing the realities of e-leadership, in general, would be an
understanding of leadership as a structural characteristic of OSGS. According to Avolio
and Dodge (2001), e-leadership is deﬁned as “a social inﬂuence process mediated by
Advanced Information Technology (AIT) to produce a change in attitudes, feelings,
thinking, behavior, and/or performance with individuals, groups and/or organizations (p.
617)”. E-leadership publications have been interested in issues such as who the e-leaders

are, what they do as leaders to the group, and why they do the leaders’ jobs.

Fonlal leadership roles: who are the e-leaders and why do they take on the leadershﬁ
An essential question regarding e-leadership is: Who is willing to accept leadership
of online groups? Formal leadership roles such as owner, administrator, host or wizard
often inﬂuence the effort that members put into helping their online group (Butler et al.,
in press). Owners did more community building work and active work than did other
members. It means that the formal leadership role accounts for some of the additional

effort that these people contribute in active community building work.

16

However, owners are not the only leaders of online groups. Senior members, whose
length of existence within a group is the longest, often take on leadership roles such as
welcoming newcomers, replying to other members’ questions, and promoting a sense of
community, even though they are not officially assigned to those tasks. Butler and
colleagues found that there was a difference between owners and members. Owners
valued beneﬁts of their work differently from other members’ valued beneﬁts. While
members of online groups valued informational beneﬁts, group owners valued altruistic
beneﬁts more highly than informational beneﬁts

However, other differences between owners and active members in such areas as
leaders’ tasks and types of work that they actually do is not yet discovered, though they
are expected to vary depending on who are the leaders and what beneﬁts those leaders

put a value when they lead an online groups.

E-leajd:er’s tasks: what do e-leaders do?

The various aspects of e-leadership include feedback, encouragement, rewards and
motivation (Zigurs, 2003). Although e-leadership has its own unique features different
from the leadership in face-to-face groups, e-leaders are required to balance the
traditional with the new for the success of the e-group (Avolio and Kahai, 2003; Zigurs,
2003). According to Zigurs (2003), having face-to-face interaction at the beginning of a
team’s life, providing for facilitation, having frequent communication, and increasing
awareness and visibility of team members, may contribute to a virtual team’s success. In

other words, e-leaders should stress the importance of building a high quality relationship

17

among the members through face-to-face interactions, especially during a group’s initial
period.

When e-leaders are required to do their tasks, their leadership style will affect the
actual amount of their participation in the group process. According to Zigurs (2003),
Online groups are typically led not only by one person; this being contrary to face-to-face
groups. As a result, leadership is expected to be more diversiﬁed than in face-to-face
groups, and leaders’ tasks are expected to be shared among members. Therefore,
leadership style and the pattern of leadership diversiﬁcation in online groups should be

examined to understand who the leaders of OCSGS are and what they actually do.

Leadership style

It is a unique feature of e-leadership that anonymity on the Web interacts with
leadership styles to inﬂuence group process and/or outcomes (Avolio and Dodge, 2001 ).
Shaw et al.’s study (2000) about online breast cancer support groups showed that
anonymity within the support group fostered equalized participation. The OSGS
prompted users to take a more active role in their own care, by encouraging them to ask
questions of their healthcare professional, or to seek a change in medications (Lamberg,
2003). Therefore, it is possible to conclude that anonymity in online settings encourages
all the members to more actively participate even though they are not clearly assigned to
any position of leader. Zigurs (2003) stated that e-leadership is generally not considered
under the control of any one person, but rather is achieved through the interplay of group
members. Leaders’ intervention in the online group discussion process should not

overwhelm the other members, so the leaders’ direct intervention in discussed content is

18

not recommended, although process facilitation has a positive effect on the discussion
process (Miranda and Bostrom, 1999). Therefore, these studies suggest that indirect
leadership style can elicit a better performance of members in the online groups, where
anonymity may guarantee them more opportunity to participate in the group process
without concern of directing that process, in contrast to hierarchical, traditional group
interaction.

On the other hand, Cascio and Shurygailo (2003) found that no particular leadership
style was necessarily best for a virtual team, as long as there is a high level of trust
among the members. To build trust in a virtual team, e-leaders were required to handle
group members’ initial messages well, since ﬁrst impressions are critical. They were also
required to keep the tone of all messages upbeat and action-oriented.

In sum, leadership style in online groups has generally been seen as indirect, even
though it does not necessarily mean that this type of leadership style draws a best result
for the online group. Considering that previous studies about face-to-face support groups
suggested leadership diversiﬁcation for a support group’s success, OSGS are assumed to
have a beneﬁt over face-to-face support groups due to this unique style of participative e-
leadership. Thus, before taking a look at what were found in OSGS regarding leadership,
it is necessary to understand the key ﬁndings of the previous studies about leadership in
face-to-face support groups, in order to know whether the indirect and participative

leadership in OSGS is actually beneﬁcial to the members and the group’s growth.

19

Leadership in Support Groups

Lgadjrsm in face-to-face smoorggroups

In face-to-face support groups, leadership is considered as one of the factors
contributing to the survival of self-help groups (Wituk, Warren and Meissen, 2002).
Leadership diversiﬁcation and high attendance rates at group meetings are necessarily
shown as the common group organizational characteristics among survivor support
groups. Shared leadership is necessary for group growth in order to decrease the degree
of leadership burnout. If attendance rate is low, leaders easily succumb to burnout and
disappointment.

Leadership diversiﬁcation is related to whether a group leader is the founder or the
successor (Medvene, Wituk and Luke, 1999). Through a survey of the leaders of self-help
groups, it was found that there was more diversiﬁcation in groups led by successors than
in groups led by founders. It means that people who founded a group would feel
responsible for all group tasks, thus causing the potential for more burnout sooner or
later. Therefore, group founders are recommended to concede the responsibility of group
leadership to others once they have completed their founding work and stabilization of
the group. Otherwise, a group led by only one person all the time cannot be sustained
because that person might feel exhausted by leadership tasks and ﬁnally might fail in
leading the group successfully. Medvene et al. (1999) also found that self-help group
leaders’ professional status is also a signiﬁcant aspect of leadership. According to their
deﬁnition, a single status leader is the leader who is a peer-helper such as patient or

caregiver and a dual status leader is the leader who is a professional health caregiver.

20

First, the study found that dual status leaders have a source of satisfaction different from
that of single status leaders. They tended to be satisﬁed with the fact that they can help
others more frequently than could single status leaders. Second, dual status leaders have
burnout causes different from those of single status leaders. Especially when group
members do not understand information, they felt more frustrated than do single status
leaders. Third, there was no difference, however, in burnout levels experience by dual
status and single status leaders.

Therefore, it is necessary to examine the pattern of leadership diversiﬁcation in
OSGS, too. Before addressing a few ﬁndings regarding leadership diversiﬁcation in

OSGS, general ﬁndings about e-leadership in OSGS will be presented.

Lgderslm; in OSGS

Leadership is an important factor of success or survival of OSGS as it is in face-to-
face support groups (Yun, Park and Kim, 2003). The activity of the major contributor
(i.e., the person whose frequency of posting is highest in each OSG) was signiﬁcantly
related with the other members’ adoption of the online support group. Although the major
contributor’s active participation encouraged other members’ participation up to a certain
point, it caused other members’ participation to decrease after that point. Therefore,
major contributors are recommended to actively participate, at the same time, and not to
dominate the discussion process,

The results from Yun et al. (2003) study are limited because they did not examine
the content of the messages posted by the major contributors and they failed to include

other types of leaders such as owner or moderator in the sample. Even if the owner’s or

21

moderator’s participation is not most active in the OSG, his or her contribution to the
group still can make a difference in the group’s success, since the person who holds a
formal position feels responsible to a group’s success and tries to contribute effort to a
group.

According to the deﬁnition of Schopler and Galinsky’s (1993) about support groups,
there are three types of support groups, which are self-help groups, treatment groups and
support groups. Some OSGS are peer-led. These groups are called self-help groups and
are governed by patients or caregivers. SOme enlist a psychiatrist, psychologist, social
worker or nurse to answer treatment-related questions. They are called treatment group in
face-to-face settings or e-therapy groups in the online world. However, all these groups
are generally called support groups (Pollack and Slan, 1995).

Health-care professionals often take on the role of moderators for smoothing the
discussion process in bulletin boards or their own e-therapy groups (Hsiung, 2000;
Klemm, Reppert and Visich, 1998). To overcome the disadvantages of OSGS, such as
misinformation or hostile messages, OSGS are expected to function more effectively
when they are facilitated or moderated by a trained clinician (Deborah and Finfgeld,
2000). Leadbetter (2003) suggested that nurses as clinical professionals are in an ideal
position to guide people with breast cancer to reliable resources on the Web that can
provide accurate, up-to-date information.

Regarding the professional’s involvement, Hsiung’s (2000) study about an online
mental-health support group suggested that the hybrid type of support group leadership is
the best way for the success of OSG. In this type of leadership, professionals are required

to maintain the supportive milieu among the members and organize the group discussion

22

process. Group members are recommended to provide information and social support as
therapists to each other. Professional leaders Should interfere with the discussion process
only when members exchange obviously inappropriate knowledge. For the success of the
e-therapy group, healthcare professional owners should provide information and
education and avoid providing advice and treatment (Pies, 2002). Healthcare
professionals’ involvement in the group process was also suggested in OCSG studies.
Klemm and colleagues (1998) suggested that a healthcare professional should act as a list
owner or should monitor group discussion to deal with unreliable information in online
cancer support groups.

However, Lamberg (2003) suggests that a healthcare professional’s involvement is
not always an advantage for OSG, because the professional may dominate discussions.
According to the interview with the healthcare professional in the study, misinformation
may not be as serious 3 problem as physicians fear, since, in a well-functioning group,
members rapidly correct each other's errors. Thus, it yet remains unknown fully whether
the professional’s involvement is beneﬁcial in peer-led OSGS or not, and what type of
work OSG leaders are required to do to build a well-functioning group.

In sum, a leader’s participation in an OSG is a signiﬁcant factor of the group’s success
at the structural level by encouraging members to participate more actively in the group
as long as the leaders do not dominate the discussion process in the bulletin boards. In
other words, the more a leader posts messages to the Web board, the more other members
post messages up to a certain point, too. Leadership in OSGS is important not only in
terms of participation but also in terms of moderation. It is mostly a health-care

professional who takes on the role of moderator in OSGS. Therefore, from previous

23

studies mentioned above, is drawn the necessity to understand the content of the actual
work that the leaders of OSGS do when they participate in, or moderate, the discussion
process in the group. That is, it is necessary to understand what types of support are

actually contained in the leader’s work such as participation or moderation.

Leadership activity: the types of work that leaders do in OSGS

It is important to know what types of support are offered by leaders of OSGS, Since
they affect the degree of leadership diversiﬁcation and the creating of minor leaders.
Butler and colleagues (2002) suggested that if the leaders of OSGS want to increase the
amount of work done by members, they should focus on increasing the social beneﬁts
and relationships that members derive from the groups, not the informational beneﬁts.
They are required to give emotional help such as social companionship. That is, the
leaders should decide on which type of support to focus among informational support,
emotional support or relationship-building support.

Informational or emotional help provision have been considered the main types of
support that the leaders of OSGS should provide with members by previous studies (Han
and Belcher, 2001; Lieberman et al., 2003; Winzelberg, 2003). However, in considering
the realities of the Web board of OSGS, organizational support including the
administrative work of the group should not be ignored. Some OSGS bulletin boards are
full of complaints. The Web bulletin board is also vulnerable to attacks by sellers of
products or services who may try embedding the advertisement in "it worked for me"
messages. A dominant poster’s too frequent messages or a hostile poster can discourage

others from contributing. Therefore, OSGS need a leader as moderator. Wright (2002)

24

suggested that OCSG leaders should delete offending remarks because those remarks
lower perceived emotional support among community members. Also, Wright (2002)
suggested that the group should have moderators who can identify and/or clarify
misinformation when it is recognized during the discussion. Therefore, it is clear that the
existence of moderators or monitors is essential in OCSGS. They are needed not only for
the purpose of performing organizational or administrative tasks, but also to provide
social companionship with members and to build a keen relationship among them. They
are required to consider establishing speciﬁc times for online chats, posting transcripts of
chat room discussion, or using audio and video chat applications to increase immediacy
between participants. However, it is still unknown which type of support is provided

most often by the leaders of OSGS with members.

Summary of Previous Studies

Online breast cancer support groups Show high participation among the members
than other kinds of support groups (Davison et al., 2000). Thus, according to Klemm et
al. (2003), majority of the former OCSG researches have focused on Caucasian women
with breast cancer. Breast cancer groups are predominantly female communities, and as a
result, there was an inﬂuence of gender on communication style in those groups (Sharf,
1997). In order to examine gender differences on OCSGS, Klemm et al. (1999) used a
method of a line-by-line analysis of postings on prostate, breast and mixed lntemet
cancer support groups. Klemm et al. (1999) found that there was a gender difference in

the most frequent posting issue. Information giving and asking was the most frequent

25

issue in the prostate cancer support group, while sharing personal experience is the most
frequent issue in the breast cancer support group.

The ﬁndings of Klemm et al. (1999) are limited because the analysis was done on
the regular members’ postings. It is still unknown whether leaders of OCSGS also show
the same differences in the types of support as do the regular members. Therefore, the
current study will examine the messages posted by the leaders of OCSGS in order to ﬁnd
if illness type inﬂuence on the types of support presented in leaders’ messages. To do
that, the current study will include not only women-predominated breast cancer OCSGS
but also prostrate cancer OCSGS where most of the members are men.

The types of support in a leader’s messages can become different by not only a
poster’s gender but also by a poster’s formal position in the group. Formal leadership
roles, such as founder or moderator, often inﬂuence the effort that members put into
helping their online group. There are four necessary social behaviors for an online
group’s sustainability, namely the technical infrastructure, the infrastructure
administration, the communication infrastructure and the external promotion (Butler et
al., in press). By means of a survey of online group leaders, Butler and colleagues found
that those leaders are the people who managed a signiﬁcant portion of these
infrastructures. However, their study did not include support groups in the sample. Most
of the 212 online group lists were personal non-work groups or work-related groups.2.

A special effort for community administration was asked to moderators in OCSGS,
too. The OCSG moderators are required to consider establishing speciﬁc time for online

chats, to delete offending remarks and to clarify misinformation when it is recognized

 

2 Butler and colleagues (2002) stated that it is a limitation of their study that they did not sample online
support groups. They said, “We did not sample support groups. Thus we cannot estimate the extent to
which our ﬁndings generalize to other types of online groups and communities.” (p. 25)

26

during discussions (Wright, 2002). Therefore, the current study will include not only
active participants who do not have formal positions, but also the founders of OCSGS,
who have formal positions within the groups. This study will examine the content of their
messages, to discern if formal status of the leaders affects the type of support that they
provide to members.

In face-to-face support groups, leadership diversiﬁcation was suggested for growth
and survival of the group. Likewise, OSG literatures also emphasize that leadership
should be shared among group members in terms of degree of participation, in order to
increase group members’ participation and the growth of OSG (Yun, Park and Kim,
2003). Or, leadership should be shared in terms of tasks, between healthcare professional
owner and regular members, not to harm the free atmosphere that encourages members’
participation in the group (Hsiung, 2000). In this case, a leader of OSG is required not to
participate in discussion actively but to observe members’ activities and only to do work
of social control. Therefore, it is important to know leaders’ formal and professional
status in OCSGS.

From the limitation of previous studies and further need for investigation of
leadership in OCSGS, the following research questions are drawn in order to explore the
realities of leadership in OCSGS by focusing On leaders’ formal and professional status,

the types of support that they offer, and degree of participation.

27

Research Questions

RQl. What types of leaders exist in OCSGS in terms of their formal status and

profession, and degree of participation?

The ﬁrst research question intends to give basic information about leaders in the

current study and to show whether there is healthcare professionals’ involvement in

OCSGS.

RQ2. What are the recurring types of support in the messages posted by the leaders of

OCSGS?

The second research question seeks to know what are the types of support that
leaders in OCSGS offer to members. Since the purpose of OCSGS is to provide social
support with other patients and caregivers, giving support is assumed a desirable
leadership behavior. Therefore, by examining the content of the messages posted by the

leaders of OCSGS, various aspects of leadership behavior in OCSGS can be revealed.

RQ3. Do types of support presented in the leaders’ messages differ between fOunders and

the most active participants?

The third research question looks deeper into leadership behavior and tries to see if

there is difference in leadership behavior depending on the leaders’ formal position. By

28

examining the difference between founders and the most active participants, the current
study can discern if leadership diversiﬁcation takes place in OCSGS in terms of tasks that

leaders do between formal leaders and informal leaders.

RQ4: Do types of support presented in the leaders’ messages differ depending on the

leaders’ gender?

The ﬁnal question is meant to determine if gender of leaders inﬂuence leadership
behavior in OCSGS. The current study will see if there is difference in the frequent types
of support presented in the leaders’ messages between breast cancer groups and prostate

cancer groups.

29

CHAPTER THREE

METHODOLOGY

To explore the realities of leadership in OCSGS, four breast cancer support groups
and four prostate cancer support groups in Yahoo! were selected. Content of the
messages posted by the leaders in those OCSGS were analyzed and categorized into
several types of support. To achieve this, the leaders in the current study were deﬁned as
the founders and the most active participants of each group. The succeeding discussion

explains the details of sampling procedure and data analysis.

Sample

Group Sangrling

According to Nielsen/Net Ratings, among the leading user-based ratings service on
the Web, Yahoo! has the third largest audience reach in 2004. There are 10,708 illness-
related support groups in Yahoo, a much higher number than the 6,606 support groups
under the “Health and Wellness” category in MSN, the world’s biggest portal. The
format of Yahoo! ’3 support groups, compared to the other leading portals, is easy for
ordinary users to manage and participate in. It only provides a standardized template for
group homepages including the functions of chat room and message board, while MSN
allows them to vary the template. Therefore, there is much less probability that OCSGS’
grth and survival are affected by confounding issues like technological differences
between OCSGS, a fancy design of Web Sites, or more advanced chatting option.

Moreover, it is easy for ordinary Web users to access Yahoo!’s support groups without

30

any advanced computer skills. Since Yahoo! ’3 support groups present all postings not
only by thread of topics but also by the order of posting dates in one complete list, it is
easier for the researcher to convert posting lists of Yahoo! into an Excel ﬁle and
automatically count the numbers of a leader’s postings. Therefore, the sample groups in
this study will be chosen from the support groups in Yahoo!.

There are 10,708 support groups related with illness in Yahoo!. Among these groups,
the total number of prostate cancer groups is 52 while there are 167 breast cancer groups
in Yahoo!.

Of the 52 prostate cancer groups, only ten are public groups of which messages are
accessible to the public. When Yahoo! shows the search result of support groups, if the
number of group members is fewer than ﬁve, this group’s number of members is shown
as ‘<5’ in the search result and seekers for support groups tend to go other bigger size
groups. Those groups with fewer than 5 members in Yahoo! usually do not Show active
interaction among the members and there are not many postings to analyze on their Web
board. The support groups that had fewer than ﬁve members were excluded from the
sample due to few postings on the Web boards. Thus, the four biggest prostate cancer
groups in terms of membership size were used as the sample.3 It was decided to sample
the four biggest prostate cancer groups in terms of membership size, because this study
was intended to examine the leadership behaviors in the successful OCSGS. These four
prostate cancer support groups can be called successful support groups not only in terms

of membership size but also in terms of their sustainability.

 

3 A group, which is called Prostate_Ca_Advocate, was originally among the biggest four groups in prostate
cancer category. However, it was a moderated group in which only the moderator is allowed to post
messages. Therefore, this group was excluded from the sample since the current study is focused on
examining the leadership role of leaders in the midst of a group discussion process in which members can
participate.

31

There are 167 breast cancer groups in Yahoo!. Among these, 22 are public groups
that open their messages to the public. To avoid the confounding effect from the unequal
sample size on the reliability of the result, four support groups were selected from the
breast cancer category. Therefore, the four biggest groups - in terms of the number of
members -were chosen as the sample in the breast cancer category. As a result, four

prostate cancer groups and four breast cancer groups are chosen as the ﬁnal.

Selection of Leaders

A founder is a person who has built the list of the group. Since all eight groups are
categorized into un-moderated groups according to the group information on the main
page, there were no clearly assigned moderators in them. In un-moderated groups in
Yahoo!, members can freely post a message without permission from the founder or the
moderator. Below is an example of an un-moderated group, which is shown at the right

side of Yahoo! group’s main page.

Table l — Example of Un-moderated Group Information

 

Group Info

 

Members: 21 7
Founded: Jul 8, 1999
Language: English

 

Group Settings

 

Listed in directory
Open membership
Un-moderated
All members may post
Public archives
Email attachments are not permitted
Members maLhide their email address

32

Because there is no certain assigned moderator in un-moderated groups, only the
founder is considered as the formal leader who has the formal position in each group.
Founders can be found easily by checking the introduction of the group at the main page,
since every Yahoo! group shows the list owner’s email address at the bottom of the main
page. Or, it is also possible to determine who the founder is, by checking the ﬁrst posting
in the group’s archive, Since it is usually a welcome message from the founder to new
members. The most active participant is deﬁned as the person whose frequency of
postings is the highest within the group’s ﬁrst year among all members except the
founder. Therefore, eight founders and eight most active participants from eight cancer

groups were chosen as the leaders.

Postings Sampling

The messages posted by the founders and the most active participants during each
group’s ﬁrst year were included as the sample postings in this study. There are two
reasons for including the messages posted by the leaders during each group’s ﬁrst year.
First, each support group has a different starting date, from the oldest, December 17,
1998 to the latest, October 21, 2002. Thus, the study tried to avoid examining the recent
postings in the Web boards for each group, since each of them is at a different stage of
growth. Second, the founders sometimes disappear from the discussion board, as an
OCSG gets older. Therefore, if only the recent postings in each group is examined, it will
be not possible to include every founder’s postings, and the current study will not ﬁnd the

types of support that founders offer.

33

Redundant postings (i.e., the messages with the same content but posted redundantly
due to the posters’ mistake) were excluded from the sample. As a result, a total of 1,355

postings from the 16 subjects during the ﬁrst 12 months of each OCSG were selected for

analysis.

Data Collection

Data for the current study were collected through the content analysis of 16 posters’
proﬁles and their 1,355 postings on the Web boards of eight public OCSGS in Yahoo in
the summer of 2004. The current study follows the ethical guidelines for online research
in Perron’s (2002) study about OSGS. Perron (2002) states that it is not necessary to get
consent from the posters in public online support groups for the research purpose. All the
messages posted in the eight public groups in the current study are viewable by the public
and open to anybody. Waiver of consent from the posters for this research was justiﬁed
and approved by the University Committee on Research Involving Human Subjects

(UCRIHS) of Michigan State University on June 17, 2004.

Data Analysis
In order to examine the types of support frequently presented in leaders’ messages,
two coders conducted a line-by-line analysis of messages’ content. Chi-square test will
Show the differences in the frequency of the types of support between types of leaders.

The details of data analysis are presented in the below.

34

R91. What gpes of leaders exist in OCSGS in terms of their formal status,

profession and dggr_e_e of participation?

The leaders in OCSGS were categorized into several types based on their formal and
professional status, and degree of participation (i.e. the percentage of a leader’s postings
out of the total number of postings in a group). By clicking on a poster’s Yahoo! ID, the

proﬁle of the poster appears, including name, ID, email address, location, profession, age,
gender and marital status. This proﬁle is viewable to the public, even without registering
to the group or logging into Yahoo!. To protect posters’ privacy, any identifying
information not only in this proﬁle but also in their postings was not collected, except for
their gender and profession. All their real names and [BS were replaced with pseudonyms
and fake-IDS. A person’s profession was not speciﬁcally revealed but coded into the three

categories: healthcare expert, patient or caregiver.

RQ2. What are the recurring types of support in the messages posted by the leaders
of OCSGS?

A total of 1,355 messages from 16 subjects were analyzed using the existing coding
scheme, and each type of support in these messages would be described in detail using
appropriate examples from the real postings. The examples of the leaders’ messages are
in Appendix A. Two trained coders analyzed the leaders’ messages in order to assign the
various types of support in leaders’ messages into several categories. When the coders
analyzed the data, the coding scheme from Yun et al.’s study (2004) was used (See

Appendix B and C.)

35

The unit of analysis is a posting. Each posting was examined to see whether or not
the poster made a comment that belongs to each support type. Each posting is not
necessarily assigned to only a single social support type, since coding only one type for
one posting could cause meaningful contributions of other social support comments in the
same posting to be ignored.4 Therefore, to avoid over- or underestimating certain types of
social support, the current study allowed for coders to assign a single posting to multiple
types of support if they found more than one type of support in a posting. To be qualiﬁed
as an “occurrence of support,” the comment should comprise at least one full sentence.
Each posting, therefore, can be coded as containing multiple occurrences of social

support exchange.

Inter-coder Reliability

Two trained coders analyzed 955 sample postings in order to calculate the inter-coder
reliability. Perreault and Leigh’s (1989) index6 was used instead of the more frequently
employed Cohen’s Kappa because the present study’s content analysis dealt with nominal
data based on qualitative judgment. If Perreault and Leigh’s index is higher than .90, the

reliability of the coding process is considered high. Inter-coder reliability for each type of

 

4 Bresnahan and Murray-Johnson (2002) found in their case study that most messages (65%) in a
menopause support group contained not a single type of support but the combination of multiple types of
support.

5 Using the formula of Riffe, Lacy and Fico (1998), the test sample size to achieve a minimum 90% of
reliability agreement, in a study using 1,371 content units, is about 95.

6 Perreault and Leigh’s index is an estimated reliability between coders using an observed frequency of
agreement, sample size and the number of categories. The major difference from Cohen’s Kappa is that the
index does not make any assumptions about the marginal distributions of the judgments in the inter-coder
contingency table. Cohen’s Kappa, as also recognized by Cohen himself (Brennan & Prediger, 1981), is
not stable when two coders agree that a much higher proportion of cases ﬁt into a certain category than into
others. Kappa penalizes the higher percentage of agreement because of its assumption of ﬁxed marginal
distributions. Perreault and Leigh’s reliability index releases this assumption. Since the present study
based its content analysis on coders’ qualitative judgment and social support comments, Perreault and
Leigh’s reliability index is more appropriate.

36

support varies from the lowest for the Illness-related information (I, = .912) to the
highest for the Empathy (I, = 1.00).7 The average value of inter-coder reliability for eight

types of support was .962.

R93. Do types of support presented in the leaders’ messages differ between the

founders and the most active participants?

To see if there is a difference in the work that leaders do by their formal status, a chi-
square test was performed. The frequency of the recurring types of support between the

founders and the most active participants were compared to each other.

R 4: Do es of su rt resented in the leaders’ messa es differ de endin on
leaders’ gender

In order to see if there is a difference in the work that leaders do by their gender, a
chi-square test was performed. The frequency of recurring types of support in leaders’
messages between the breast cancer support groups and the prostate cancer groups were
compared to each other. Since breast cancer groups are known as being predominated by
females and prostate cancer groups are known as being predominated by males, leaders
were chosen from breast cancer groups and prostate cancer groups for the researcher’s

convenience.

 

7 The following numbers show reliability for each type of support: Illness-related information (.912),
Indirectly-related information (.957), Social companionship (.957), Esteem (.979), Empathy (1.00), Sharing
experience (.979), Sharing feeling (.923), and Organizational support (.989).

37

CHAPTER FOUR

RESULT

The results from the four research questions in this thesis were helpful in knowing
the types of leaders, the types of support that they offer, gender differences in types of
support, and differences in types of support depending on leaders’ formal status. Before
going to the results of data analysis for each research question, the general overview of
16 subjects and eight OCSGS is provided.

Regarding a leader’s formal status, eight founders from eight OCSGS were originally
selected as the formal leaders and eight most active participants from eight OCSGS were
selected to see whether they could be considered as informal leaders. However, one most
active participant of a breast cancer support group was invited to be a co-founder by the
founder because of her active participation in the group. Therefore, this person became
one of the founders in the group. As a result, the subjects in this study comprised nine
founders and seven most active participants.

Regarding a leader’s professional status, there were six patients, one caregiver and
one leader whose profession was not clearly revealed by checking the poster’s proﬁle or
messages. Healthcare professionals in the current study include only doctors, researchers,
nurses and therapists. Therefore, there was no healthcare expert in the subjects and all
eight OCSGS were peer-led groups.

Most of the breast cancer group leaders were females except one founder. He was the
only male poster among these eight in the breast cancer groups. His proﬁle did not Show

any information relating to why he founded a breast cancer support group regardless of

38

his own gender. He posted only four messages during the group’s ﬁrst year. None of
these four messages contained personal information and the content of those messages
was about welcoming newcomers, posting the link to the group’s home and asking
members to join the group’s email list. Males sometimes join the breast cancer group for
the purpose of the research or because they are caregivers of the breast cancer patients.
For example, husbands of breast cancer patients are among the rare male members in
some breast cancer support groups. However, in this case, it was not possible to know
why he founded the breast cancer group because of the absence of personal information
on the Web and the current study did not use the research method of interview or survey
through direct contact to the subjects. All posters in the prostate cancer groups were
males. Considering that breast cancer and prostate cancer are types of illness closely
related with gender, the gender distribution of the leaders in the sample groups is a usual

result. Table 2 shows a summary of the formal position, profession and gender of 16

 

 

 

 

subjects.
Table 2 — Number of Subjects
Breast cancer Prostate cancer

Position Founder 5 * 4

Most active participant 3 4
Profession Patient 6 6

Caregiver 1 1

Don’t know 1 1
Gender Male 1 8

Female 7 0

 

* One of these ﬁve was originally a regular member but later assigned to be a co-founder.

39

Therefore, it can be said that all these OCSGS are peer-led self-help groups and that
there was no involvement by professionals. As expected, gender of the leaders was
related with the diagnostic category except for one founder of a breast cancer group. The
fact that a regular member is assigned to the co-founder position shows an interesting
aspect of leadership in OCSGS that voluntary active participants may share leadership
with existing formal leaders.

Total number of the messages during each group’s ﬁrst year was 2,953 in the breast
cancer groups and 2,164 in the prostate cancer groups, separately. The number of the
messages posted by the leaders was 1,016 in the breast cancer groups and 339 in the
prostate cancer groups, separately. Therefore, the breast cancer group leaders can be said
to show more active participation than the prostate cancer group leaders in terms of
number of postings.

Table 3 shows the group information regarding the total number of postings on the
Web board, the number of regular posters (i.e. posters excluding the founder and the
most active participant in the group), the number of postings by regular posters, the
number of founder’s postings, the number of most active participant’s postings, and the

starting date of each group.

40

Table 3 — Number of Postings by Regular Posters and Leaders

 

 

 

Illness Group Regular Founder Most Active Date
posters Participant
Breast B1 22 4 5 06/18/1999
(n=14)*
Cancer B2 63 2 18 07/08/1999
(n=27)
B3 171 160 64 12/17/1998
(n=3 2)
B4 1681 348 415W 10/10/1999
(n=44)
Total 1937 514 502 2,953***
Prostate P1 10 97 8 01/07/2000
(n=9)
Cancer P2 123 8 20 05/05/2002
(n=33)
P3 147 4 15 07/1 1/2000
(n=49)
P4 1545 75 112 10/21/2002
(n=1 65)
Total 1825 184 155 2,164****

 

* The number of regular posters in the group

** This person was assigned to a co-founder position after her active participation.

** *The total number of postings in the breast cancer groups

****The total number of postings in the prostate cancer groups

41

RQI. What gpes of leaders exist in OCSGS in terms of their formal status,

profession and dggree of participation?

The ﬁrst research question asks about types of leaders that exist in the OCSGS. Based
on the information about subjects and groups presented in Table 2 and 3, the study
categorizes leaders of OCSGS into two different types, which are the founders and the
most active participants.

This study looked at two types of leaders and results are presented separately for
each. All the subjects are patients or caregivers and none of them was a healthcare expert.
Therefore, all 16 subjects in the current study were in the same category in terms of their
professional status, which is “Peers.” Therefore, leader’s profession was not counted
when categorizing them into several types. Leaders of OCSGS were categorized into two
types of leaders by formal position and degree of participation. The reason why the
degree of participation was counted for deciding types of leaders was that, even among

founders, the level of participation varied for each.

Founders

The ﬁrst type of leader is the founder, the formal leader of OCSGS. However,
founders also can be categorized by the level of participation. A founder whose total
number of postings is fewer than 10 during the group’s ﬁrst year is labeled as the
observing founder since this person does not actively participate in the group discussion,
but choose to observe it. Four founders as observer are in this category. The average
number of messages posted by this type of leader was 4.5 and messages from each

occupied from 2% to 13% of the total messages in his or her group.

42

 

The other ﬁve founders were named as the participative founder. Participative
founders are formal leaders who have the formal position of the founder in a group and
also actively participative in the group’s discussion process. Moreover, two of them had
the highest number of postings in each of their groups. The average number of messages
posted by them was 219.8. The messages posted by this type of leader occupied from

14% to 84% of the total messages in each one’s group, with the exception of one persons.

Most Active Participants

The second leader type is the most active participant; seven people are in this
category. All of them had posted messages most frequently among the posters who had
no formal position. The average number of messages posted by them was 35. Table 4
shows the average number of postings by each type of leader and the number of subjects

in each leader type.

Table 4 —Participation by Leaders

 

Observing Founder Participative Founder Most Active Participant

 

 

No. of 4.5 219.8 35
Postings (n=4) (n=5) (n=7)
Standard 2.517 152.937 39.183
deviation

 

 

8 A prostate cancer group founder posted 4% of the total messages in his group during the group’s first
year. The number of his postings is 75 and it is far more than the average number of postings of the
observing founders, which is 4.75 times per year. The reason why his participation seemed to be low is that
there are a total of 1,807 messages in his group. The number of total messages in the other three prostate
cancer groups was 166, 151, and 123, separately. In other words, this person’s participation seemed to be
low only because of the large total of messages in his group, despite his actual participation being not low,
like observing founders. For this reason, the researcher decided to put him into the participative founder
category not into the observing founder category even though his messages occupied only 4% of the total
messages in the group.

43

The average number of postings tends to be highest in the participative founders, and
lowest in the observing founders. Contrary to the expectation that formal position holders
would contribute extra effort to OCSGS, not all formal leaders actively posted messages
in these OCSGS.

In summary, there were two types of leaders in OCSGS in terms of leaders’ formal
status: the founders and the most active participants. The founders were divided into two
sub-categories by the level of participation, which are the observing founders and the
participative founders. Since all subjects in the study were caregivers or patients, leaders’
profession was not counted when classifying the types of leaders.

When judging the level of contribution that leaders make to the group and leadership
style, it is important to consider not only the number of messages but also the content of
the messages. It is not possible to determine if the most active participants can be
considered as the informal leaders of OCSGS, unless the contents of their messages are
examined. Therefore, 1,355 messages posted by 16 subjects were analyzed in order to tell
which types of social support they offer to members and what type of leadership style

exists in these successful OCSGS.

R92. What are the recurring types of support in the messages posted by the leaders
of OCSGS?

The second research question intended to ascertain what are the recurring types of
support in leaders’ messages. Generally, four types of support were found in them, which
are Informational support, Emotional support, Social Companionship and Organizational

support Informational support has two subcategories: Illness-related Information and

44

Information indirectly related with Illness. Emotional support has four subcategories:

Esteem, Empathy, Sharing Illness Histories, and Sharing Feelings.

Informational support

Illness-related information

One of the major types of support that leaders offer is informational support, which is
giving information regarding medication, treatment, diagnosis or related scientiﬁc
research. First, to questions asking for cancer-related information, leaders could give
answers or comments based on their own experiences and opinions. For example, “what
worked for me” or “what did not work for me” was a common form of informational
support in leaders’ messages. When a member of a breast cancer group shared that her
body was then in pain due to a certain medication, the group’s founder conﬁrmed the
effect of that medication through her experience and recommended treatments for
reducing pain. The founder said, “Dear ID7, Don't despair at the pain. Taxotere really
worked for me. Just ﬁnished 7 rounds. For the pain, I recommend hot baths, and heating
pads or hot water bottles in bed.” The co-founder in the same breast cancer group also
once answered a member asking about any treatment for the pain in her breasts after
surgery: “I’ve been doing some reading and come to the conclusion that for anyone
experiencing pain, the best two things around are 1) acupuncture and 2) therapeutic
massage. Might try hypnotherapy also.”

Second, the leaders often offered outsourcing information using links, which directed
members to the original sources of relevant information of treatment, medication or

diagnosis. The following example is from a leader’s message in the breast cancer group:

45

Listening to music that you ﬁnd uplifting can be powerful healing tool. When you
are deeply relaxed, the positive emotions generated by music can pass into your
body, help it along the road to recovery, and inspire creativity and productivity.
To learn more healing power for music, go here:
http:///www.pathﬁnder.com/drwei141a answer/xxxx
Information indirectly related with illness.
Some supportive comments by the leaders were not about medication, treatment and
diagnosis. However, they still indirectly are related with the cancer. Any comments or
opinions about cancer-related policies, laws or insurances belong to this type of

informational support. For example, a prostate cancer group leader posted a message

about the legal issue related with the supplement:

FDA sponsored bill S. 722. If you want to oppose this bill, you can use the
information below as a means of making that easier for you to accomplish. It
provides phone numbers, names and addresses of people whom you can
contact, including your own Congressmen and US. Senators. On the surface
this bill seems harmless enough and in principle I am for many of the things it
says it will do. Yet, after reading it, it is also apparent that this bill could just as
easily be used as a means to simply go after the supplement industry in the
form of a police action solely for the beneﬁt of the FDA’S most important
benefactor, the lntemational Pharmaceutical Drug Cartel.

Emotional support

In the messages posted by the leaders of OCSGS, not only the supportive comments
related with information but also the comments containing emotional support were found
through the content analysis. Emotional support includes four types of supportive
comments: Esteem support, Empathy, Sharing Illness History and Sharing Feelings. The

detailed descriptions of each emotional support are presented below.

46

 

Esteem support

OCSG leaders tried to encourage other members to beat the disease and increase their
self-esteem by complimenting them. The leaders said in the postings, “You can beat the
odds! Let nothing drag you down! Have faith in yourself, and God. It’s beatable!” “You
are a master ﬁghter.” and “You are a strong person and getting even stronger.” Affirming
another member’s action or decision related with the illness experience is also considered
as esteem support. For example, acknowledging others’ decisions about which
medication to take or decision to quit the job for health reasons is esteem support. Esteem
support often involves the promise of prayer for the recipient and religious
encouragement. The following messages are examples of esteem support found in the

current study.

I know it is very difﬁcult to have the cancer and to have no one there to help and
give support and for that I thank God that he gives my mom her dose of daily
strength. For He is always ready to help, keep the faith and the humor in your life
prayer and laughter great source to ﬁght any form of sickness one faces in life. I
will keep you and your mom in my prayers.

It was difﬁcult but with the daily strength of God and my ﬁ'iends, I made it and
my mom too. She was okay but recently she was diagnosed again with cancer. But
she is a ﬁghter and I know she will win this battle. And so will your mother, and
all the mothers and daughters who are facing this problem. You are all in my
prayers and feel free to email me at any time.

Empathy

The leaders of OCSGS support the recipient’s emotional state by expressing that they
also know and understand the recipient’s feelings and sufferings because they go

thorough or went through the same or a Similar situation related to illness. These

47

comments give a recipient the feeling that other people care about him or her and that he
or She is not the only person experiencing suffering, so that one’s sense of belonging to
the group can be increased by identifying oneself with the group. From a support group
for caregivers of mothers with breast cancer, a founder gave an empathic advice to

another caregiver regarding a long distance relationship between her and her mother.

I can understand what you are going through because I am going through the
same situation with my mom. I am a long distance daughter and that makes it
harder, too. But as Lisa’s last posting about a Memo to God stated, I am
trusting and believing that someone will take care of her (my mom) and her
needs.

 

ﬂaring illness histog

Sharing a detailed illness history from diagnosis to a recent treatment plan was
another major type of emotional support found in the leaders’ messages. Sharing details
of personal illness histories are often followed by the introduction of oneself to others or
informational supportive comments. A breast cancer group leader shared her coming

doctor’s visit in her posting.

Going to the oncologist today. Haven’t seen him in 9 months, so am 6 months
overdue checkup. I found two lumps on my esophagus over the weekend. One
high up under the chin, golf-ball sized, one over the caved-in place, smaller.
The lower one could be thyroid. Now it seems that I am feeling a third, right
under the top one. And dry cough. I will probably be sent for further tests, but
the oncologist is where I start for all things. He will also see how the benign
tumor is doing that was biopsied 9 months ago.

48

Sharing feelings

The above example of sharing personal illness history consists solely of the objective
facts regarding future treatment plans. However, in many cases, posters revealed not only
the histories but also their feelings related to illness, in their postings. A breast cancer
group leader shared her story that her tumor worsened from stage IIIB to stage IV

recently and at the same time revealed her feeling about this diagnosis:

I think I feel worse for everyone here than I do for me. . .more bad news for you
all whereas I have felt the other shoe was going to fall anytime for a very long
time. . .after all I have been Stage IIIB for almost 9 years now and have been
very lucky to be able to be with my son during his years as a “minor.”. . . He’s
18 now. The lump is breast cancer and I am now officially Stage IV.

They shared personal feelings about medication, treatment, or illness. The complaint
that contains feelings about a “deprived life” due to the illness is also considered as
sharing personal feeling related with illness. The posters are interested mainly in
expressing their own feelings rather than understanding readers’ feelings. However, it is
also a type of emotional support, given that self-disclosure provides not only emotional
catharsis for message writers but also a common emotional background for readers who
might have similar feelings related to illness so that they can identify more easily with the
support group. One of the frequently found feelings among the postings was the fear of
death due to the illness. A leader from a breast cancer group said, “Yesterday, I felt so
sad, bad, none of those work, not despair, but possibly anguish. Death tapped me on the
shoulder again.”

Informational support and emotional support are types of support related to the

illness directly. Therefore, these OCSGS can be said to function appropriately as support

49

 

groups, because help provision is one of the main purposes of the support group. There
are also some types of support that are not related with illness in the leaders’ messages.
Social companionship and organizational support are those types of support that are not

related with illness but are important in maintaining and making the OCSGS exist.

Social companionship

Informational and emotional help provision turned out to be one of the types of
support frequently recurring in leaders’ messages. However, the leaders’ support is not
limited to only the help provision. Leaders encourage a social companionship among the
members so that they constantly can stay in the group and visit the group again, even
more often. Thus, they share not only the illness-related experiences or feelings but also
other aspects of their lives to make friends. Any comment that indicates a sense of
community such as chitchat or general banter belongs to this type of support. A breast
cancer group founder posted a message on a New Year’s Eve saying, “Congratulation to
every one of us. We’ve made it into the next millennium. More adventures ahead. Enjoy
your celebrations.” What another breast cancer group leader talked about was only the
weather and no cancer-related topic was in that posting. She said, “Dallas has been mild
so far. It is 82 here now at this writing, but the terrible triple digits are not far behind,
[Sic] I am aﬁaid. The morning here, it is about 72 to 75 now so that won’t be too bad.
Later.”

Some leaders posted encouraging poems, Bible verse, humor or parables that they

read in another source. All these postings have different themes but all of them are

50

 

considered as social companionship giving, for they intend to the empowerment of a keen

relationship among the members by sharing life perspectives other than cancer.

Organizational Support
Organizational support has been considered as one of the minor themes of the online

support group communication, with other themes such as tangible support, advertisement
or negative feedback, because it was not frequently found in the studies that examined
regular members’ interaction. However, the current study found that comments related to
organizational support were one of the major themes in the OCSG leaders’ postings. The
following three types of organizational support found in the OCSG leaders’ postings
show that leaders do online community building in OCSGS as do the leaders of other

types of online groups.

Technical help

Tools and technical help make online group communication possible. Members’
requests for technical tips regarding the use of group resources are frequently presented,
and leaders of OCSGS often provide technical help with them. How to activate a speciﬁc
link to a certain informative source, how to upload pictures to the group album, how to
view the pictures in the group album, and a warning about a recent type of virus in the

group email were examples of technical help from the leaders’ postings.

51

 

Administrative work

Administrative work involves installing and maintaining the basic system that enable
group communication. This type of help includes maintaining an up-to-date content
archive such as newsletter uploading, updating lists of frequently asked questions
(FAQS), and managing the list of group members. A breast cancer group founder notiﬁed
that she was collecting group members’ email addresses and let them know that a co-
founder was gathering their phone numbers to make an emergency contact list. She said,
“ I would like your email address for mailings I do now and then to this group. And Stacy

collects contact info in case we don’t hear from you for a while we can call or write.”

Social management

Technical help establishes a group and administrative work manages it. However,
social management also is needed to control misuse of the group and encourage
appropriate use of communication within the online group. While technical help and
administration are online community building work, social management can be said to be
communication infrastructure building work.

Social control is the ﬁrst type of social management. Social control includes letting
newcomers know the norms of the group, managing disputes, discouraging use of the
' infrastructure to discuss off-topics, preventing exploitation of individual members,
controlling membership and deleting junk emails and negative attacks on the board. If an
online group is not socially controlled well, it will not function as the support group
appropriately and, in turn, its members will discontinue participating in the group.

Therefore, un-moderated online groups like the OCSGS of this study were assumed to

52

 

have a disadvantage compared to face-to-face support groups, because of the absence of a
clear responsibility of the moderation. However, the current study found that founders
and informal discussion leaders control the discussion and protect OCSGS from possible
misuse by spammers or some members. The following messages from the leaders of
OCSGS can be good examples of social control. Because their disease is related with
sexual organs, spammers or advertisers for adult products often attacked those OCSGS. A
founder of the breast cancer group was in charge of the membership and she deleted a

new member on the basis of inappropriate use of the group.

I deleted “getting_80”, who seems bent on rejoining the club repeatedly under
different pseudonyms or else he has a lot of ﬁ’iends whose hobbies are “breasts,
nipples and reproduction.” Delete, report, delete, report, delete, report —hey
buddy, I can keep it up as long as you can, probably longer.

The following message is another example of the organizational support. A frequent
poster of the prostate cancer group, who has no formal position in the group, showed

concern about a group’s current state being attacked by spammers.

Actually, we are getting spammed. These ones are pretty tame compared to the
“penis enlarger” ones I get in my box all the time along with the others telling
me how to make it stay hard longer! Because we use a lot of explicit language I
think their “hunting programs” thought this was an appropriate site. I think
some of you may have thought that the list had some privacy to it but actually,
the owner has stated in the past that he was open to all points of view on Pca
and I’m in agreement with him. However, when we do get spammed with
obvious advertisements to purchase a product that has little to do with this list,
those people should be blocked from the group.

However, leaders of OCSGS not only control the social infrastructure but also

encourage communication among the members. Another type of social management that

53

leaders do is social encouragement. That is, the leaders encourage members to exchange
more opinions and thoughts and eventually promote desirable behaviors among them by
recognizing people who contribute especially informative or supporting messages, and
people who create interesting or useful group activities. Or, they are often the people who
promote the group and organize group events. Social encouragement includes the
activities such as organizing group chat time or off-line meeting schedule, welcoming
new members, organizing group project, and encouraging members’ participation in the
group. Welcoming new members and asking them to share their stories or to introduce
themselves to the existing members were a commonly found type of organizational
support in leaders’ messages. The following message is an example of welcome
messages from the founders of OCSGS; “Welcome to the club. Hope we can be of help
and support to you. Please tell us a little about yourself. To ﬁnd out about us, check out
the past postings, click on ‘View All’ and you will see them.” Another founder of the

breast cancer group also welcomed new members in one of her postings.

We do have 3 new members! ! !! From one I received a personal e-mail. Another

doesn’t sound serious. No info on the third. New Members!!! Please let us know
something little about yourselves or write to me at xxxx@yahoo.com. Welcome
to the club and we hope we can help you and you can help us.

 

One of the breast cancer groups was working on a quilt project in order to raise funds
for breast cancer research and to call social attention to breast cancer. The co-founder of
the group often let new members know about the quilt project in her postings when they

joined.

54

I know we have several new members in the last few months and I wanted you
all to know that the group is going to be working on a couple of quilts — with
every one who wishes to participate doing a quilt square. Your quilt square can
be about you, a loved one, breast cancer awareness or (something else)? One iS
to be auctioned off (probably on e-bay and hopefully with a little media
coverage) with the proceeds going to Breast Cancer Research. The second one
is going to be displayed on the White House lawn next October 2000 — Breast
Cancer Awareness month, also hopefully with media coverage. . .Leslie and I
are co-chairmen of the BCQUILT project and you can direct all your comments
and suggestions to us via emails or to the group on the message board — be sure
to label your messages relating to this project “BCQUILT 2000” — Otherwise,
we will never ﬁnd it down the road.

A small misuse by some members can defeat the beneﬁcial purpose of the whole
community because it is easier for people to leave the group in the online setting than in
physical settings. These social control and encouragement activities are so important that
online support groups do not collapse, and to protect the group’s enjoyable atmosphere
from being banned. Therefore, the fact that the leaders offer these types of organizational
support as the voluntary moderator in un-moderated groups shows the reason why these
un-moderated OCSGS still exist and actively work, and are not being left by the
members.

Generally, the types of support found in leaders’ messages were the same as the types
of support that former studies looking at regular members’ messages found (i.e.,
informational support, emotional support, and social companionship) except for
organizational support. The following result from the third research question served to

provide better understanding about differences in types of support even among the

leaders.

55

RQ3. Do gypes of support presented in the leaders’ messages differ between

founders and the most active participants?

The current study found that founders devoted their discussion more to social
companionship and organizational support than the most active participants do. A total of
1,750 comments out of 1,355 messages were considered as supportive.

The observing founders posted a small number of postings, but organizational support
was eminent in their postings, accounting for 60% of the total amount of support they
offered. Among a total of 20 supportive comments in observing founders’ messages,
emotional support (10%) and social companionship (0%) were not found frequently.

In the participative founders’ messages, the organizational support still was a
Signiﬁcant portion (15%). Of 1,494 supportive comments in their messages,
companionship appeared most often (32%), followed by emotional support (27%),
informational support (26%) and organizational support (15%).

A total of 281 comments were considered supportive in the most active participants’
messages. This type of leaders focused on giving informational support (48%) and
emotional support (28%), while their contributions to social companionship giving (17%)
and organizational support (17%) were relatively lower than participative founders’.
Table 5 summarizes the number of supportive comments and the proportion of those
comments in each support category among observing founders, participative founders

and most active participants.

56

Table 5 - Types of Support by 3 Types of Leaders

 

 

 

Observing ‘ Participative Most Active

Founders Founders Participants
Information 6 (30%) 374 (26%) 135 (48%)
Emotional Support 2 (10%) 395 (27%) 78 (28%)
Social Companionship 0 (0%) 456 (32%) 48 (17%)
Olganizational Support 12 (60%) 224 (15%) 20 (7%)
Total No. of Supportive 20 (100%) 1449 (100%) 281 (100%)

Comments

 

A result of Chi-square test showed that the frequent types of support differ between
founders (i.e. observing founders and participative founders) and the most active
participants (1:2 (3)= 68.33, p < .001 ). Founders provided members with not only illness-
related support such as informational support or emotional support but also non-illness
related topics such as social companionship or organizational support. On the other hand,
the most active participants focused on illness-related help provision rather than non-
illness related support provision. Table 6 shows the result from a chi-square analysis

about types of support between founders and most active participants.

Table 6 - Types of Support between Founders and Most Active Participants

 

 

 

 

Founders Most Active
Participants
Illness-related Information 380 (26%) 135 (48%)
Support Emotional support 397 (27%) 78 (28%)
Non-illness related Social companionship 456 (31%) 48 (17%)
Support Opganizational support 236 (16%) 20 (7%)
Total No. of Supportive 1469 (100%) 281 (100%)

Comments

 

x2(3)= 68.33, p < .001

57

From the result, not only the founders but also the most active participants can be
called the informal discussion leaders of OCSGS, even though they do not have the
formal position within the group. The leadership of most active participants is not due to
merely amount of their work but due to the content of their work. In the sense that the
most active participants’ messages contained helpful knowledge about illness and
emotional support to other members, they can be considered as the informal discussion
leaders.

The fact that the most frequent type of support provided by leaders was different
between the founders and the most active participants can be interpreted as the sign of
leadership diversiﬁcation in OCSGS. In other words, leadership was diversiﬁed between
formal leaders and informal leaders, not in terms of the amount of work, but in terms of
the types of work that they do. The following result of the fourth research question
showed that the most frequent type of support that leaders offer varies, depending not

only on the leader’s formal position but also on their gender.

RQ4: Do types of support presented in the leaders’ messages differ depending on

Ieaders’ gender?

Breast cancer group leaders, most of whom are females except one persong, focused
on social companionship (35% of total support that they gave) and emotional support
(3 0% of total support that they gave), while all of the male leaders in prostate cancer

groups focused greatly on the informational support (71% of the support that they gave).

 

9 A founder of a breast cancer group was a male. However, the reason of building a breast cancer group
regardless of his gender was not known, since he posted only four messages, none of which revealed his
personal story. The only type of support found in his messages was organizational support, which occurred
three times in the four messages.

58

 

Breast cancer group leaders offered social companionship (3 5%) and emotional support
(30%) more often than informational support (19%) and organizational support (16%).
Sharing feelings and personal stories as emotional support showed a signiﬁcant
difference in occurrence between breast cancer groups and prostate cancer groups. '0
Actually, a breast cancer group founder encouraged members to share feelings more
often by saying, “I think we do pretty well on this score. I’m proud of this group. But
let’s keep in mind: the more open we are about our feelings and emotions, the more we
get out of the support group.”

On the other hand, the informational support accounted for 71% of total support
provided by the leaders of prostate cancer groups and was the most frequent type of
support, followed by emotional support (15%) and organizational support (10%). The
comments related to social companionship were less frequently found in their messages
(4%) than were other types of support. A result of Chi-square test showed there to be

signiﬁcant relationship between types of support and gender (x2 (3)= 386.98, p < .001).

Table 7 — Types of Support by Leaders’ Gender

 

 

 

Breast cancer Prostate cancer
Information 265 (19%) 250 (71%)
Emotional support 423 (30%) 52 (15%)
Social companionship 491 (35%) 13 (4%)
Organizational support 220 (16%) 36 (10%)
Total 1399 (100%) 351 (100%)

 

x2 (3)= 386.98, p < .001

 

'0 The number of comments regarded as “Sharing feelings” was 27 out of a total of 351 supportive
comments in the prostate cancer group leaders’ messages, while the comment related to “Sharing feelings”
occurred 175 times in a total of 1,399 supportive comments in the leaders’ messages in the breast cancer
group.

In summary, the results of this study show the following four main ﬁndings about the
realities of leadership in OCSGS. First, leaders are categorized into the observing
founders, the participative founders and the most active participants by their level of
participation and formal status. Second, the main four types of support that leaders of
OCSGS offer to members are informational support, emotional support, social
companionship, and organizational support. Informational support has two sub-
categories: illness-related information and information indirectly related to illness. Third,
there was a difference in types of support between the founders and the most active
participants. Social companionship and organizational support frequent occurred in the
founders’ messages, while informational help and emotional help frequently occurred in
the most active participants’ messages. Finally, there were also differences in types of
support depending on leaders’ gender. The breast cancer group leaders focused more on
giving social companionship and emotional support, while the prostate cancer group

leaders focused on giving informational support.

60

CHAPTER FIVE

DISCUSSION

The results of the current study contribute to the area of OCSG research in several
ways. First, the content analysis of the messages posted by leaders revealed that
organizational support is one of the major themes found in OCSG leaders’ messages.
Organizational support has been neglected by the former studies because it is a non-
illness related topic. However, it is the organizational support that enables an online
group to be maintained and exist.

Second, the current study found that not only founders but also active participants
could take on leadership roles in OCSGS. The most active participant, namely the person
who posted messages most often in the group’s Web board, can be considered the
voluntary informal discussion leader of OCSGS. A previous study mentioned in the
Chapter Two of this thesis (Yun et al., 2003) had a limitation that it did not examine the
content of the messages posted by the most active participants of OSGS when it found a
relationship between the most active participant’s participation and member’s adoption
rate of the group. The current study found that extremely active participants contribute to
the group discussion not only in terms of quantity (i.e., amount of the postings) but also
in terms of the quality of the work that they do (i.e., content of the postings). Therefore,
the most active participants can be called the informal discussion leaders of OCSGS, even
though they do not have the formal position within the group. In the sense that the most
active participants’ messages contained helpful knowledge about illness and emotional

support to other members, they can be considered as the informal discussion leaders.

61

Although previous studies consider a lack of clear and accountable leadership a
disadvantage of OCSGS, the result shows a unique phenomenon in OCSGS, namely the
self-development of the leader without formal assignment of leadership.

Third, this study found that there is leadership diversiﬁcation between the leaders
depending on their formal status in OCSGS. Non-illness related topics such as social
companionship and organizational support were more frequently found in the founders’
messages than in the most active participants’ messages. Thus, founders tend to do a
moderator’s role such as social encouragement and social control and the most active
participants tend to do a support provider’s role in these OCSGS. As discussed in Chapter
Two of this thesis, a previous research has demonstrated that there is leadership
diversiﬁcation depending on leaders’ founder status in face-to-face support groups
(Medvene et al., 1999). Therefore, the current study contributes to the area of OCSG
research by documenting the existence of leadership diversiﬁcation in terms of the types
of support between formal leaders and informal leaders, not only in face-to-face support
groups, but also in online support groups.

Finally, while most studies to date have focused on the female-dominated breast
cancer groups, the current study included prostate cancer groups in the analysis so that it
was possible to examine differences in leadership activities depending on illness types or
perhaps even gender in OCSGS.

This ﬁnal chapter will discuss the implications of the results. Speciﬁcally, ﬁve
important implications emerged from the results. First, the absence of healthcare experts
in OCSGS must be considered. Second, a leader’s dominance in the Web board may

discourage other members’ participation. Third, leaders of prostate cancer groups tend to

62

discourage members from exchanging non-illness related types of support such as social
companionship. Finally, gender differences in communication style may inﬂuence the
way the leaders of OCSGS control the discussion in the groups and the way the leaders of
OCSGS share their feeling related with illness.

After a discussion of these ﬁve main points, limitations of the current study will be

mentioned and suggestions for future studies will follow.

Healthcare Expert’s Absence in OCSGS
All eight OCSGS were led by peer patients or caregivers. Therefore, healthcare
professionals’ involvement in the group was not found, even though previous studies
have suggested that this is an important element of an OCSG. In this study, a founder of a
breast cancer group actually stated that a professional’s involvement in the group would
be good for the appropriate informational support when she found that one member’s

husband was an oncologist.

LOLll about your oncologist husband. It would be good to have some
professionals in this club. What do you and other members think of the idea?
That way I wouldn’t blow off my mouth telling Cathy to get an X-ray. It’s none
of my business as a non-professional.
However, no OCSG in this study tried to actively recruit a professional member to
correct possible misinformation. As a result, it is a disadvantage of the OCSGS that
correction of the misinformation is hard for non-professional leaders. There was actually

a debate about the reliability of a speciﬁc email related to the causes of breast cancer. An

active participant of a breast cancer group warned that the misinformation in that email

 

it LOL is an lntemet language that is used to mean, “Laughing out loud”.

63

‘ e vvl- -WMv-'2:!

was too dangerous to be freely circulated. She insisted that the email contained
misinformation, twice at different times on June 3, 1999 and on June 8, 1999. One is the
posting she initiated in order to warn the members of the danger of the misinformation,
explaining that the causes of breast cancer are various and not dependent only on the use

of antiperspirant product as the letter insisted.

Sisters Against Breast Cancer, I have received TWICE now a very dangerous e-
mail message, about which I feel strongly I need to warn you. This message
claims to come from a person who “recently attended a medical conference” --
where it was revealed that a “leading cause of breast cancer is the use of
antiperspirants (rather than deodorants).” This ridiculous message continues to
say antiperspirants contain “dangerous toxins” which enter the body through the
underarm area. They have the audacity to claim that the reason MEN don’t
develop breast cancer is because they have HAIR under their armpits, which
protects the toxins from reaching their skin. It then infers that if you change from
an antiperspirant to a DEODORANT, you will be protected from developing
breast cancer. Like most of these INTERNET HOAXES, it ends with a strong
suggestion to “share this with everyone you know.” This message is extremely
dangerous, and it is traveling across the country very quickly, so I am afraid that it
will result in some unsuspecting person to believe that by changing underarm
products they are safe from developing breast cancer. As ridiculous as it sounds to
those of us who have ﬁrst-hand experience with breast cancer, it is an attractive
message to women who are terriﬁed of this disease, and who desperately WANT
to believe that there is a simplistic cause and cure to the epidemic proportions of
breast cancer. (I'll bet a hundred pink ribbon pins that the originator of this
dangerous e-mail LIE is some manufacturer of [sic] DEODORANT products,
because they are the only ones who could possibly beneﬁt from the spreading of
this LIE!) This untruth is too dangerous to ignore. We've got to do something
about it. If you receive this e-mail, please “REPLY ALL” and let everyone know
it’s a LIE with the potential to kill. Or, feel free to copy my response below and
paste it in a "reply all" message to the sender and all recipients.

Her ﬁrst posting initiated a debate about the reliability of the information in that email
and she replied to another member’s inquiry to ask why she thinks that the newsletter is
misinformation on June 9, 1999. In her second posting, she asserted that her argument is

not merely a personal opinion, but is also the perspective of an expert on the issue, by

64

stating that she is an author of a cancer-related book and is working for some breast
cancer advocacy organization. However, because she is neither an authorized doctor nor a
trained therapist, it is hard to consider her as the healthcare professional. Therefore, the

reliability of the information in that email was still left unproven in the group.

Hello, Tara, I'm not offended at all, dear. But this is not just "my opinion" -- I
do know what I am talking about...I'm one of the co-authors of the book,
BREAST CANCER? LET ME CHECK MY SCHEDULE! (West View Press,
1994). I've really checked this one out with ALL my sources, and it's a hoax.
Several of my colleagues on the breast cancer advocacy frontlines agree that
this message was likely to have been started by one of the manufacturers of
"natural" deodorant products. Very effective sales campaign. I'm sure that their
sales have been boosted by the spreading of this misinformation. Actually, Tara,
this particular "myth" about breast cancer has been around for a while. It's just
gotten a new "boost" via the intemet, which is too bad, because it is cleverly-
worded, and says exactly what women WANT to believe, that the cause and
cure for breast cancer is as easy as changing your shopping list. . .. But, it is
important to be aware that there are a lot of MORE dangerous things in our
environment these days than underarm products.

 

However, another active participant of a prostate cancer group posted the same
email on the Web board and even strongly recommended members to pass the same
email onto others. On February 19, 2000, this person said, “Please send this on to
everyone you care about. I have been trying to convince people of this for a while
now, but didn't have any backup. Here's to everyone’s continued good health and/or
recovery.”

The OCSGS in the current study are peer-led self-help groups and the
atmosphere in the group is sufﬁciently free for all members to participate in the
group for 24 hours and 7 days, which is the OCSG advantage over face-to-face

cancer support groups. However, the above example demonstrates that peer-led

65

OCSGS can have the disadvantage of misinformation because of the absence of a
healthcare expert’s involvement in the group. Misinformation can thus be circulated
in these group without warning, and peer members, who themselves are just patients

or caregivers, usually do not have adequate knowledge to correct misinformation.

Degree of Participation by Leaders

The ﬁnding in the current study shows that leadership styles vary in different
OCSGS. Four founders did not often participate in the discussion and rather chose to
observe the group members’ own discussion. The other ﬁve founders actively
participated in the discussion. Interestingly, in the four groups where the founders
contributed as observers, there were relatively fewer number of postings by regular
posters than in the other four groups where each founder participated in the
discussion actively. The ﬁrst three biggest groups in terms of message volume by
regular posters were participative leader’s groups. The other four groups that have
smaller size of message volumes posted by regular posters were observer-led groups.
Thus, it could be said that more participation of the founders drew more participation
of the members in these OCSGS.

However, there was one glaring exception. Not all participative founders draw
more participation of the members. In one prostate cancer OCSG, the founder
accounted for 84% of the total messages in the group. His active posting did not
result in increased postings by members. The number of postings by regular posters

in this group was 18, which was the lowest among the whole eight sample OCSGS.

66

 

 

. . .. I f‘ It ( I P.‘

Even the number of adopters'2 of the group was the lowest in this dominant founder-
led group. Further study is needed to explain this phenomenon. Table 9 shows that
members’ participation varies between the participative founders’ group and the
observing founder’s group, and also shows that it is the lowest in the dominant

founder’s group.

Table 8 - Members’ Participation by Founder’s Participation

 

 

 

 

Group Founder’s No. of Postings by No. of
Participation* Regplar Posters Adopters**
Participative 1 14% 2096 35
(n=44)***
Founder 2 5% 1657 1 1413
(n=165)
3 41% 235 20
(n=32L
Observing 4 2% 162 25
Founder (n=49)
5 5% 143 18
(n=33)
6 2% 81 15
(n=27)
7 13% 27 7
(n=14)
Dominant 8 84% 18 3
Founder (n=9)

 

 

'2 Yun et al. (2003) deﬁned OSG as a form of innovation using the Diffusion of Innovation Theory.
According to Yun et al., people who regularly participate in an OSG are called adopters since they adopt
the OSG. An adopter was deﬁned as the person whose frequency of postings is not fewer than two and
whose duration of stay in the group is not shorter than two days in their study. Yun et al. also found a
signiﬁcant positive curvilinear relationship between the most active participant’s participation (i.e., the
number of postings) and the number of adopters in a group.

'3 The number of adopters in Group 2 is 144, which is a distinctively higher number among the
participative founder-led groups. The founder of this prostate cancer group posted 75 messages for the
group’s ﬁrst year and total 75 comments were coded as being supportive. He focused on giving
informational support (53 supportive comments) and organizational support (21 supportive comments),
while almost ignoring social companionship (l supportive comment) and emotional support (0 supportive
comment). His messages accounted for only 5% of the total messages in the group even though he is a
participative founder. Further investigation may be needed to explain why this group has a higher number
of adopters. In future researches, it should be asked what is the relationship between founder’s messages
(i.e., types of support occurred in the founder’s messages and the proportion of his or her messages out of
the total message volume in the group) and the number of adopters of OCSG.

67

 

* The proportion of founder’s messages out of total messages in the group
*"' Adopter is the person whose frequency of postings is not fewer than two and whose
length of stay in the group is not shorter than two days.
*** n indicates the number of regular posters in the group.
Social Companionship in OCSGS

The leaders of OCSGS sometimes expressed their concern about the exchange of non-
illness related topics such as general banter, humor, chitchat or parables between the
members, since those topics could blur the purpose of support groups. For example, a
founder of a breast cancer group explained why she built the group as follow: “I founded
the club because there was too much chit-chat in the large club, for which I just didn’t
have the patience. Wanted to get down to more serious issues and also talk about
advanced treatment, clinical trials, etc.” In another case, the most active participant of a
prostate cancer group insisted that members should be careful about posting humor. He
said, “Yes, humor is nice now and then but new members may not see it as humor but as
part of the normal everyday trafﬁc. I just think that the reminder of what we do is good
now and then.”

However, social companionship, which is the type of support including those non-
illness related topics, was the most frequently found type of support in the breast cancer
group leaders’ messages, while it occupied only 4% of the total support that leaders
offered in the prostate cancer groups. For example, even the founder, who said that she
built an OCSG for informational reasons in the above, actually posted many messages
containing non-illness related topics. Thirty-two percent of the support found in her

messages was social companionship, which is a topic not related cancer.M

 

M She posted 349 messages during the ﬁrst year of the group and it accounted for about 14% of the total
messages in the group. A total of 500 comments were considered as supportive in her messages and

68

In sum, even though social companionship was generally considered as irrelevant to
the purpose of support groups throughout the whole OCSGS regardless of illness types,
female leaders in the breast cancer groups still offered much social companionship, while
male leaders in the prostate cancer groups did not. The male founder of one breast cancer
OCSG also did not post any social companionship items in his messages. In other words,
“too much chitchat” was a matter of concern but social companionship up to a certain
degree was acceptable in the breast cancer groups, while non-illness related topics were
more strictly restricted in the prostate cancer groups. Regardless of the very low
frequency of social companionship in the leaders’ messages in prostate cancer support
groups, the total number of postings in the group is not much different from between
breast cancer groups and prostate cancer groups. The total number of postings in eight
breast cancer support groups was 2,953 and the total number of postings in eight prostate
cancer support groups was 2,164 (See Table 3, p.49). Hence, lack of social
companionship in leaders’ messages did not seem to cause inactive participation of
members in prostate cancer groups. Rather, it can be said that the types of support that
members want to receive or provide is different between breast cancer groups and

prostate cancer groups.

Gender Differences in Social Control Style and Sharing Feelings
Gender differences in communication style impact the pattern of discourse in online
groups. Although female-dominated online groups do not always show supportive

communication for the members and do not always concur with others’ opinions,

 

 

emotional support was the most frequent type of support in them, accounting for 38% of the total
supportive comments, followed by social companionship (32%), informational support ( 16%) and
organizational support (14%).

69

women’s indirect way of speaking inﬂuences the debate and keeps it from comprising
personal attacks on each other. Among the analyzed messages in the current study, there
was an example of moderation done by a co-founder in a breast cancer group. Actually, a
member who is a female caregiver initiated a posting when She was concerned about her
mother’s illness and wondered whether continuous chemotherapy would be helpful for
her mother. Responding to this person’s posting, another member showed her

disagreement with the idea of more chemotherapy as follows.

Demy, I have to be honest with you your post infuriates me. Your mother is
seventy-six years old. She's had a ﬁrll life and it sounds like a very good life. You
Should be rejoicing in the fact that she found a second partner and went to
Singapore at such a grand old age. Don't put her thru any treatments that ruin the
quality of her life. She cannot live forever. No one does. I'm infuriated because I
have several friends here that are young and mother's at that and won't have and
probably won't have all the time they would like. I don't mind supporting you, but
seriously think "truly" to yourself about everything. -Hillary

The poster of the original posting immediately apologized to Hillary in her next
posting for the fact that she unexpectedly caused anger to the recipient. However,
Hillary’s posting seemed to hurt the original poster, considered through her statement that

she would not post any longer in that group.

Dear Hillary, I do want to thank you for your honesty...for honesty IS the best
policy. When I ﬁrst came across this site, I was afraid of doing exactly what I did
to you...please...l did not mean it to be hurtful...and I am truly, truly sorry. I

will not be posting here anymore...l do understand your anger, however. When
my son died, I was very angry when "people" came and tried to understand my
pain...it just doesn't happen. Until we have been in the other person's predicament,
there is NO WAY, we can fathom what is happening. I did appreciate too what
you said about being grateful for my Mom's life...yes, she has been blessed. We
know that she will not live much longer, and I am grateful for the time I have had
her. Please accept my sincere apology for hurting you. I really did not mean to!

70

In this case, the moderation style employed by the co-founder of that group in her
intervention sought to cool the situation by introducing the people to each other and tried

to make them aware of the positive aspect of their personality.

Demy, I'd like to introduce you to Hillary a.k.a. PeaceB. She is a young, vibrant
wife who has given up her chance to bear children in order to undergo a life-
saving stem cell transplant. Like everyone in this group, she is ﬁerce and fragile.
She makes life and death decisions daily and works hard at giving herself the best
shot. We love her. She has the right to be here and I don't know what we'd do
without her.

Hillary, I'd like to introduce you to Demy. I just met her yesterday when she was
trying to get into chat. She is seeking information and solace. Her proﬁle linked
me to the website she created in memory of her late son. She's a concerned

daughter. She has a right to be here.

This is a good example of person-oriented leadership skill. Her way of moderation
was presented indirectly as suggestions, by saying “She has a right to be here” to both of
them, to try to discourage any of them withdrawing from the group.

On the other hand, male leaders in the prostate cancer groups tended to use more
assertive and matter-of-fact language in similar circumstances. Moreover, more debate
took place in the prostate cancer groups than in the breast cancer groups because of the
aggressive and critical language. The leaders often had to moderate members’
inﬂammatory comments. The following message is an example of moderation message
from a prostate cancer group founder who several times noted that a certain posting norm
is expected, due to frequent attack and insult between members. However, personal
approaches to the recipients could not be found in the way he moderated the debate. He
chose to give the whole group a notice about posting norms, using matter-of-fact

language.

71

Please keep in mind that a newsgroup works like a “brainstorming” exercise —
Everyone is welcome to share their input, whether it is popular or not. You are all
welcome to openly disagree with people’s input, but please try to refrain from
attacking each other.

There was also important difference in how males and females leaders shared their
feelings through OCSG postings. Several examples of Showing men’s aggressive,
assertive and critical language were found in the prostate cancer groups. While the major
topics in the “Sharing Feelings” category in the breast cancer groups was related to fear
of death, loneliness due to the illness or even gratitude for family’s support, the major
feelings that the prostate cancer group leaders Shared with members was distrust of
traditional treatment in the hospital, and of doctors. For example, when an informal
leader of a prostate cancer group leader complained about doctors, he used somewhat
aggressive and strong words and was very critical of doctors, which was a rarely found
sentiment in the breast cancer groups about the same topic. He described doctors as
“common criminals in white lab coats with a good line of BS, nothing more, nothing
less” and their practice as “a great scam.” In another posting, he also called doctors as
“the hundreds of morons” and said, “ I am weary of a doctor who tells me not to take

something because he hasn’t a clue as to what it will do.” The following message is also a

complaint about doctors posted by the same person.

I’m thoroughly disgusted and embittered by the duplicity played by so-called
medical professionals who at the ﬁrst Sign of trouble clammed up and ended up
pointing ﬁngers at others or joined in the chorus of accusations and
condemnation.

In summary, these four main implications of the results in this thesis is helpful in

72

understanding the realities of leadership among eight successful OCSGS in Yahoo!. First,
healthcare expert’s absence is the disadvantage of these OCSGS because of the difﬁculty
in controlling misinformation by non-professional leaders. Second, the level of
participation by the founders may inﬂuence the level of participation by regular members
in these OCSGS. Third, gender differences were found in the frequency of social
companionship that the leaders offer to members between breast cancer OCSGS and

prostate cancer OCSGS. Finally, gender differences in communication style also

 

inﬂuenced the way the leaders of OCSGS control the discussion and share personal

feelings regarding their illness experiences.

Limitations and Future Research
Limitations

This study is meaningﬁrl in that it initiates the ﬁrst step into the leadership issue of
OCSGS as an exploratory study. However, the current study has several limitations. First
of all, the small sample size of only 16 leaders from eight un-moderated public OCSGS is
problematic, although the total amount of their work was a substantial amount to be
content-analyzed, namely 1,361 postings. Therefore, future studies are required to have
bigger sample size than the current study in terms of the number of leaders.

Second, the results cannot be generalized into members-only groups. It is practical
and manageable for a researcher to analyze postings in the public online groups because
of several issues related with human subjects. However, there are many members-only
groups in the population and the interaction between the members of those members-only

groups is expected to differ from those in the public groups. Since posters’ privacy can be

73

protected better in members-only groups than in public groups, there is a possibility that
posters of members-only groups will feel more comfortable in sharing personal stories
and revealing their feelings. Although the current study targeted only public groups, for
convenience, it will be better for future researches to take further steps into members-
only OCSGS with permission from members of those groups.

Third, this study recruited the leaders from breast cancer groups and prostate cancer
groups. It is a helpful approach to studying gender differences in leadership of OCSGS,
since both types of illness are under the cancer category and breast cancer groups are
predominated by females and prostate cancer groups are predominated by males. Even
though a previous research (Klemm et al., 1999) has employed similar assumptions in
studying females in a breast cancer OCSG and males in a prostate cancer OCSG, it is
possible that these differences occur from variation in illness type rather than gender.
Future studies should make a counter measure or procedure to cOntrol for this potential
confounding variable.

Finally, the research method used in this thesis has a limitation. Content analysis is
helpful in discerning what types of support the posters’ messages include. However, there
are yet more factors in leadership issues which cannot be revealed by merely content-
analyzing messages posted on the Web, such as “why founders built OCSGS” or “what

are the beneﬁts they seek to obtain or actually obtain”.

Future Research

The limitations in this study should be considered in future studies and another

methodological approach should be tried. First, in order to achieve a bigger sample size, a

74

survey of many numbers of founders and active participants will be beneﬁcial in
examining types of tasks that they do, types of support that they offer, types of value of
OCSGS which they weigh on, and types of difﬁculty that they face to when they lead
OCSGS. Second, in order to examine gender differences in communication style, future
studies should recruit leaders from OCSGS in the same type of illness. Or, a case study
about one successful OCSG in terms of membership Size, message volume and
sustainability might be meaningful, too. It will be more manageable for future researchers
to choose a successful OCSG and to examine the pattern of leadership diversiﬁcation and
gender differences shown in the discourse between the members by content analysis of
the Web board and to have an in-depth interview with a founder and active participants of
the case group.

Another suggestion is that future researches Should examine the relationship between
founder’s participation during the early period of OCSG and group’s membership size
and members’ participation. The current study found that founders provided members
with social companionship and organizational support more frequently than most active
participants do, during the ﬁrst year of the biggest OCSG’S in Yahoo. However, the
current study did not examine whether early postings by founders inﬂuence in attracting
new members and how much they participate. Therefore, future researches should
examine different types of support provided by the leaders, which happen in different
timings in the lifecycle of an OCSG. It will be also an interesting topic to be necessarily
covered by future researches how people decide to stay in OCSGS after their initial

participation, by recommendation, leadership activities or reputation of the group.

75

APPENDIX

76

APPENDIX A
Examples of Sample Postings
Breast Cancer Group 1 (Date: Tue Oct 19, 1999)
Subject: My Introduction
Hi! My name is Love. I'm 34 years old, from NJ, and was diagnosed in April with breast
cancer. Since then, I've had a mastectomy and I'm in the middle of chemo right now. I
look forward to sharing thoughts with other young survivors. I especially would like to
discuss child- bearing issues, since I'm single and haven't started my family yet!!! Hello

to all, I hope to meet all of you soon.

Breast Cancer Group 2 (Date: Tue Oct 19, 1999)

Subject: UPDATE on MOM

I spoke to mom on Sunday...she said she just got test results back and the doctor told her
that her exams Show that her cancer has not increase nor decrease. Jane, is this good news
or bad? I hope to go down to Houston next month. I was thinking of seeking "alternative
treatment for her". I am not sure where to begin but started to do some research. I was
also planning to see if I could take her to a "healing evangelical service" when I go to
Houston. "A little desperate her..." please keep me in your prayers....thanks, Maria. PS.
MOM has another exam next month, I just think that, after all those months of chemo, the

news would be better.

77

 

Breast Cancer Group 3 (Sun Jul 18, 1999)
Subject: What is your interest in Breast Cancer?
Are you going to have a mammogram? Have you been diagnosed? Are you a health care

provider?

Breast Cancer Group 4 (Date: Wed Oct 20, 1999)

Subject: Re: All Done with Radiation

Dearest Johny, <br>We're so proud of you making through this part of your intense
treatment schedule. I'm visualizing your poor skin staying glued together and healing.
Also am popping some extra QIOS on your behalf. I wish I could send over my fancy-
lady extra-soft and chubby pussycat. She was given to me as a kitten when I was being
radiated and learned with unbelievable sensitivity to keep those kitten claws away from
my chest. Three years later she still approaches that spot with great care. Skin heals. Just

keep your cool. Ha, Ha! I'm BLOWING kisses to you.

Prostate Cancer Group 1 (Fri Dec 13, 2002)

Subject: [NTPC Yahoo Group] Membership of list

This, Prostate Cancer Yahoo Group I began October 21 , 2002 when the PC SPES group
that Matthew was hosting had some technical difﬁculties. This group presently has 120
members and has had 303 postings during the brief two months since it was created.
December has been slower thus far. Perhaps people are busy preparing for the holidays. If
you average out the numbers, this group has averaged 156 postings per month, or 5

postings per day.

78

 

One reason this list has fewer postings is because this list is "un-moderated". In general,
this means that there is not one person who tries to respond to or follow up with each

posting. Rather, this is an open group which allows anyone to respond or comment on

postings.

Members of this group thus far have been generally kind and supportive of each other
and try to answer each other's questions the best they can. This is their web group to
share information and they set the tone for the group. If there were other helpful groups
out there, it would be nice for all of us to know about them. The more information each
group member has access to, the greater his knowledge will be of his prostate cancer and
managements available to him. Please feel ﬂee to share the addresses of other web

groups that you feel are of value.

In the near future I hope to be able to present a terriﬁc amount of useful information to
this newsgroup regarding the progress of Natural Approaches to Prostate Cancer (N APC)
and their ability to bring back an untainted PC SPES analog for use in research and to be
used by those men who were depending on PC SPES to keep their prostate cancer in
remission. This is exciting in itself, and may offer men seeking a natural approach for
their disease an additional alternative. If anyone is interested in being notiﬁed if and
when this analog becomes available, please register on the NAPC website
(hptt://www.napc.info) and periodically check this group or visit NAPC'S website bulletin

board for updated information.

79

 

Currently NAPC is in close talks with a number of manufacturers who are interested
manufacturing an untainted PC SPES. If talks succeed an untainted version could be

available sometime during the ﬁrst half of next year.

Prostate Cancer Group 2 (Date: Tue Jul 1 1, 2000)
Subject: Check out the Links!

Please feel free to join, add Links and post info and questions regarding Prostate Health.

‘A

Since info about prostate on Yahoo was a bit scattered, I wanted to bring it all to one
place to see if that would encourage more participation in discussion and sharing of
information. Has anyone else heard of or used Beta-Sitosterol to restore Prostate health of
[sic] symptoms? I couldn't sleep one night a few months back and saw an infomercial
featuring Roger Mason on it. That's when I ﬁrst heard about Beta—Sitosterol. Then
recently came across a web Site that talked about the same things. It has info about
Prostate Cancer and says that Beta-Sitosterol is the Natural Prostate Miracle 3000 Times
More Powerful than Saw Palmetto!

http://youngagain.com/shopsite tx/store/html/bettergostate.html

The above Link is also available in the Links area on the left. What about other methods

and solutions?

80

 

Prostatp Cancer Group 3 (Date: Tue Dec 10, 2002)
Subject: Re: For more activity
--"ID2 id2@xxx.com >wrote:

> check the sci.med.ﬁprostate.bph newsgroup. This Yahoo group is practically dead.

NO IT'S NOT DEAD----It just needs some Viagra --------- The membership keeps

growing. People just read and don’t post.

Prostate Cancer Group 4(Date: Tue Jul 11, 2000)
Subject: blue green Algae (heavy metals)

This is from the current newsletter.
http://wwwmercola.com/2000/iul/2/spirulina_arsenic.htm

-Daniel

Spirulina for Arsenic Poisoning

Spirulina, a green-blue algae developed by Bangladeshi and French scientists several

years ago, has been found to have "very good effects" on people suffering from arsenic

poisoning caused by the recently-discovered contamination of much of the groundwater

in Bangladesh.

Up to this point, doctors in Bangladesh have been virtually helpless in treating dying

arsenic patients. Bangladeshi researchers conducted a three-month hospital-based study

81

 

in which 33 patients were given Spirulina and 17 were given placebo doses. 82% of those

taking Spirulina showed tremendous improvement.

Experts fear that more than 18 million people are likely to face eventual death from the
poisoning, which at acute stages causes liver, lung, intestinal, stomach and kidney

cancers.

 

Bangladeshi authorities say that approximately 70 million people, out of a population of
120 million, are at "great risk" from arsenic poisoning. The cause of the arsenic

contamination is currently unknown.

Dr. Mercola's COMMENT: Clearly, acute arsenic poisoning is not a major problem in
this country, but I ﬁnd it fascinating that it is possible to treat this problem with spirulina.
Algae is a powerful source of nutrition and I recommend most consider adding it to their
diet program for general maintenance. There are two major types - Spirulina and
chlorella. I use Chlorella regularly in my personal vegetable juicing program. Chlorella,

not Spirulina will also facilitate the removal of heavy metals like mercury from the body.

In a related article, Dr, Mercola says that Earthrise is the largest grower in the world they

have very reasonable rates for bulk purchase (1-800-9497473).

82

APPENDIX B

 

 

 

 

Coding Key

PID Posting Number Posting Number in each posting list.
GID Group ID Refer to the group assignment table.
GNAME Group Name Refer to the group assignment table.
INAME Illness Name Refer to the group assignment table.

 

 

 

 

 

 

 

 

 

 

 

 

CID Coder’s ID 1- (Songyi Park) 2- (Haejin Yun)
POSTER Poster’s Yahoo! ID Refer to a poster’s Yahoo! ID on the
Web
IR Information: M/T/D related 0 — No l — Yes
IIR Indirectly Illness- related 0 — No 1 — Yes
ESC Social Companionship 0 — No l — Yes
EES Esteem Support 0 -— No I —- Yes
EEM Empathy 0 — No 1 — Yes
ESHH Personal Sharing: Illness 0 — No 1 - Yes
History
ESHF Personal Sharing: Feelings 0 — No 1 — Yes
ORG Organizational support 0 — No l — Yes
OTHERS (Code the major one) 1 — TNG: Tangible support

 

2 - Negative attack

3 — Advertisement

 

4— ETC: Intentional comments, not
supportive, that cannot be categorized
into any of OTHERS 1 to 4
0 — NON: When no comment was made
about OTHERS 1 to 5

 

83

 

APPENDIX C

Coding Instruction

1. Make a brief note for each group if it presents some noteworthy trends. For
example, while reading postings, I found that one of the groups I coded also used
a chat room a lot. Members frequently mentioned about their chat room. So, I
made a note that this group makes a great use of their chat room. You do not have

to do this for every group.

 

General Instruction

To be coded as a support occurrence, it should be at least a complete sentence.
More than one sentence can be coded as one type of support, if they satisfy the
descriptions of the specific type of support. Multiple occurrences of different types

of support can exist in a single posting.

IR, IUR, WILL, ESC, EES, EEM, ESH, GSA, and OTHERS: Content dimension
a. Only postings composed by patients, caregivers or experts without research and
commercial purposes (e.g., program director in not-for-proﬁt organizations) are
subject to analysis for IR, IUR, WILL, ESC, EES, EEM, ESHH, ESHF, GSA and
OTHERS-TNG, OTHERS-NEG, OTHERS-ORG, and OTHERS-ETC. Postings
with commercial or research purposes are considered as noise, not as supportive

messages.

84

 

. If the poster is an expert (medical professional) without any apparent commercial
or research purposes, and just providing information requested by a previous
poster, code it in IR, IUR, WILL, ESC, EES, EEM, ESHH, ESHF, GSA,
OTHERS-TNG, OTHERS-NEG, OTHERS-ORG and OTHERS-ECT. If an
expert poster is recruiting subjects for a study or promoting a product or service,
you should code it “4” in OTHERS (OTHERS-AD), and enter for all others (IR,
IUR, WILL, ESC, EES, EEM, ESHH, ESHF and GSA)

c. In a case that a posting is a forwarded message AND the poster did not add
his or her own comments, code types of support in the forwarded message,
if there is any. In order to decide a context of the message for the
interpretation of the content, check out the subject of the posting.

If you are not sure about certain (medical) terms, check out the group homepage
and/or the group name. And also look it up in the dictionary.

. Do not code online signatures.

The comments that ASK for support are not coded.

Multiple occurrences of a certain type of support within a message are counted as
ONE. That is, even if the same type of support occurs twice or more separately
within a posting, code them as just “1 — Yes.”

. Focus on manifest meanings of postings. Do NOT guess what the poster would
have in mind writing the message or what the receiver would have felt reading the
message.

. Each occurrence should be at least “one” complete sentence. Note that one

“strong” word cannot make an occurrence. If you can determine that one or more

85

sentences satisfy any of social support type categories in this instruction, code it
as “l — Yes.” Otherwise, code is as “0 — No.”

Note that NOT EVERY sentence or paragraph needs to be assigned to one of the
categories. If any sentence or paragraph does NOT include any element that can
be categorized by the instruction, do NOT force yourself to categorize it. JUST
code each social support type as “0 — No.” But, in this case, you have to make
sure of yourself if you cannot decide between two possible categories or if the
sentence or paragraph is just unclear that it contain any social support comment.
If the ﬁrst is the case, you SHOULD go back to the instructions and make a
decision.

There is no weighting in terms of the number of words (or the length) of each
occurrence. For example, one sentence of “esteem support” has the same value
of “1” as ten sentences of “sharing personal feelings” does.

. The categories are mutually exclusive. That is, NO DOUBLE CODING is
allowed. Once you categorize one sentence or more into a certain category, you
CANNOT categorize it into another.

If you cannot ﬁgure out the context, go back and check the relevant previous
posting. Otherwise, focus on and analyze the sampled posting only.

. Decide if each occurrence’s primary purpose is “informational” or “emotional”
ﬁrst. Then, decide if it is “medication, treatment, or diagnosis” related. IR and
IUR are “informational,” and ESC, EES, EEM, ESHH and ESHF are

“emotional.” IR, EES, EEM, ESHH and ESHF are “medication, treatment, or

86

diagnosis” related. [IR and ESC are “medication, treatment, or diagnosis”

UNrelated.

Direction of Support: Asking or Giving
a. Asking support refers questioning what the poster is not sure about, and expecting
that the receiver(s) offer what the poster needs. Giving refers to answering what
has been asked before, sharing the poster experiences and feels, and providing
what the poster believes beneﬁcial to the recipient.
b. Do not speculate the poster’s state of mind or hidden intention when you decide

the direction.

87

Speciﬁc Instruction
IR or IIR: Informational support
Any comment giving information as follows. Comments are neutral, neither positive nor

negative.

IR: Medication/treatment/diagnosis related (Direct)

O—No l—Yes

a. Any comment directly mentioning medication/treatment/diagnosis and/or
related scientiﬁc research

b. Any comment about "what worked for me" or “what did not work for me”

c. Any comment that introduces other experts or those with similar experiences
to the recipient

(1. Any comment that includes information about a speciﬁc test

e. Any tip for prevention such as diet and exercise

f. Any information about rehabilitation

g. POSITIVE EVALUATIVE comments about the other’s M/T/D RELATED
information are not coded as this category. For example, “I tried what you
recommended. It was really effective. Thank you.” This is “esteem support.”
A neutral comment such as “Something worked for me” is coded as
“information related” and “giving.”

b. Any comment mentioning symptoms, previous medication or treatment in

order to tell the recipient the possibility of misdiagnosis

88

 

“a

<Information sources such as useful websites or conferences>

a. Any comment about other useful information sources is coded as “information
related” ONLY if the information source is directly related to the illness (in
terms of M/I/D AND the poster also provides the detailed citation (such as
email address or conference schedule). Otherwise, code it as “IIR:
Information Indirectly related.”

b. Any comment about other useful information sources is coded as “information
related” ONLY if the information source is NOT-FOR-PROFIT. If the
posting is from for-proﬁt organizations such as pharmaceutical companies, it
is coded as “OTHERS-AD.” Announcements or information from not-for-
proﬁt organizations can be either “IR” or “IIR” depending on a.

c. Any comment that includes the link to some useful web sites such as the
member’s own personal web page containing M/T/D related information or
the web site that he or she found resourceful. If the personal homepage
address is provided without mentioning M/T/D related information, it is coded

as “ESC.”

IIR: Insurance/Policy/Law related. (Indirectly related with illness)

0 — No 1 -- Yes
a. Any opinion or debate about relevant policies, laws, legal suitcase, patents of

medicine, insurance and so on.

89

b. Any comment that calls for action such as online opinion poll, on-site
demonstration and campaign participation is not coded as “information-
indirectly related” since the poster is considered as “asking” IIR support.

c. Information about a conference or event indirectly related with the illness. For
example, the posting containing the information about “Cure for Breast
Cancer” fund-raising marathon is coded as IIR.

d. POSITIVE EVALUATIVE comments about the other’s M/T/D unrelated

 

information are not coded as this category. For example, “I visited the Web
site you mentioned. It looks great.” This is “social companionship.” Note
that this is not coded as “EES” because EES includes comments only about

M/T/D related. Negative evaluative comments are coded as “OTHERS-NEG”

ESC: Social Companionship

Any comment expressing his or her desire to share other aspects of life or sharing their
lives other than illness-related aspects. This category focuses on relationship
development through other M/D/T Unrelated messages.

O—No l—Yes

a. Any casual comment that indicates a 'sense of belonging' such as chitchat and
general banter. Jokes about doctors could be another example.
b. Any comment to share other aspects of their lives such as complaints about

husbands or uploading children’s picture.

90

 

c. Any comment that arranges the ofﬂine meeting schedule or online chat time
among ONLY a few members of the community in order to chitchat (if the
offline meeting is for the whole members of the community, code it as ORG.)

(1. Any comment that validates the recipient’s self-concept through afﬁrmation
and acknowledgement of appropriateness of the recipient’s action in other
aspects of the life (M/T/D Unrelated to the illness issue). For example, “I

visited the Web site you mentioned. It looks great.” This is “social

 

companionship.”

e. Any comment that includes the link to the personal web site that is not related
to the illness.

f. Any comment that includes humor or parables

g. Any comment that appreciates friendship that the poster received from
someone in the group. However, a ritual expression of appreciation for others’
information to the poster’s previous question (i.e. “Thank you for your

input”) is not coded as ESC.

<Background information provision>
a. BRIEF background information such as “I did my CTS yesterday” ALONE
cannot be coded as any category including “ESHH: Personal Sharing —
Detailed illness histories.” To be coded as “ESHH,” it should be DETAILED.
If the comment “I did my CTS yesterday” continues with detailed explanation
of personal feelings regarding the CTS process, it is coded as “ESHF:

Personal Sharing — Accounts of personal feelings about the Illness.”

91

 

b. When the poster shows empathy, a brief, short Sharing in order to emphasize
that he or she also has the SAME or the SIMILAR experience is background
information. You should code it “1” in EEM, but “0” in ESHH.

c. Not all medical terms are intended to provide information.

EES, EEM and ESH
Any comment giving emotional support as follows. Comments are neutral or positive,

but not negative. These three categories are M/I/D related.

 

EES: Esteem Support

0—No l—Yes

a. Any comment that validates the recipient's self-concept through affirmation
and acknowledgement of appropriateness of the recipient's action, statement,
or point of view. At this time, the action, the statement and the point of view
should be related to the illness issue. For example, decision making about
which medication they should take, which doctor they should visit, how they
treat the illness, or if they get an operation or not. The comment such as “It is
a good decision.” or “I agree with you.” for the recipient’s action about illness
is coded as EES.

b. Any comment that includes encouragement or empowerment for (for example,

“we can beat the odds!”) and compliment to the recipient.

92

c. Any comment such as “Stay strong with your positive attitude. God will help
you strong. You are in my prayer.” If the comment ‘you are in my prayer”
appear at the end of the posting without accompanying any supporting
comment, this is a RITUAL greeting so that it is not coded as EES.
(1. Any comment that responds positively and thankfully to the previous posting
which gives some information about ‘what worked for me.’ For example, “I I

tried what you recommended. It was really effective. I agree with you.”

 

c. Any comment that includes compliment to the action of the recipient for the
purpose of conquering the illness. For example, “You are doing a great job.
Keep up the good work!” is coded as EES.

f. If there is any DIRECT comment to boost the recipient’s self-esteem, it is
coded as EES, even without speciﬁc mentioning about what the recipient did
for his or her illness. For example, “You are such a great person. You should

also know that.”

EEM: Empathy

O—No l—Yes |

a. Any comment that supports the recipient's emotional state by expressing that |
the poster knows and understands the recipient's feelings and sufferings. It

includes such positive feelings as liking, loving, admiration and respect.

93

b. Comments often include such adverbs as “I also ....” “I ...., too.” These
adverbs conditioned the whole sentence and make it express the poster’s
empathy toward the recipient

c. Any comment that Shows the poster's willingness to understand the recipient
situation. The willingness includes such a comment as “I care about you.”

d. Any comment that includes the advice to the recipient who has the SAME or

the SIMILAR situation as the poster has already gone through. The poster

 

Shows his/her understanding of the situation AND gives advice based on
his/her own experience. Code it “EEM” AND “IR.”

e. If any MID/T related information follows “empathy” comments as advices,
the advices are coded as IR. In this case, the posting includes EES and IR at
the same time.

f. If emphatic advices are related with general topics for sick lives management

including relationship problem, DO NOT code it as IR.

ESHH: Sharing details of personal illness histories

O—No l—Yes

a. Any comment that contains details of personal illness history. Note that this is
a DETAILED sharing. If it is just a brief message in order to introduce his or
her case, it should be considered as “BACKGROUND information,” and
cannot be alone assigned into a separate type of support.

b. Any comment about the detailed therapy plan for the future.

94

c. Any comment about the current progress in the symptoms.

ESHF: Sharing personal feelings about his/her MIT/D.

O—No l—Yes

 

a. Any comment that contains personal feelings about his/her M/T/D. The poster

is mainly interested in expressing his/her own feelings rather than

 

understanding the recipient's feelings (self-disclosure focused). The distrust or
hatred about traditional medicine or doctors can be an example of ESHF.

b. Any comment that contains feelings about his or her “deprived life” due to the
illness

c. Any comment about the poster’s thoughts or feelings about “death.”

(I. The expression of “I have a better feeling now,” which indicates that the

poster’s progress is improving, is NOT coded as “ESHF.”

ORG: Organizational Support (Social encouragement + Social control)

O—No l—Yes

(1) Social encouragement

a. Any comment to promote the whole group. For example, the posting related

with the fund-raising project organized by the founder for breast cancer

research is coded as ORG.

95

b. Any comment concerning about the current state of the group such as the
concern about the members’ inactive participation or decreased membership.

c. Any comment encouraging members’ participation, posting messages or
doing work for the group such as “Keep an eye on the postings and give help
to anyone in this group.”

(1. Any comment related with the arrangement of off-line meetings or scheduling
chat time for the whole members of the group

e. Welcoming new members and encouraging them to share their experiences
and thoughts to the existing members such as “Welcome! Tell us about
yourself more and why you joined this group.”

f. Notifying members about a speciﬁc request from one of the members
regarding illness, companionship or tangible support for the altruistic purpose.

This request should not be the poster’s own BUT for another member’s sake.

(2) Social control
g. Any concern about commercial emails or junk mails in the group
h. Any comment to censor hostile messages or off-topic messages

i. Any comment to moderate discussion or debate.

(3) Administrative work
j. Newsletter uploading
k. Any help for other members related with members, such as member

registration or subscription to the group

96

Emmy-ﬂ

1. Any technical tip related with computer use. For example, tips related with
“How to use group resources such as email, information link or photo album”

m. Any comment to give permission or answers to the request of a visiting
researcher for the use of group resources.

It. Any comment to let members be aware of group norms such as posting

etiquette

1 - OTHERS-TNG: Tangible (or Instrumental) support

 

a. Any comment that mentions the willingness to provide tangible or material
supports such as nursing, hospice, medication, or money. It is strictly about

material help.

2 — OTHERS-NEG: Negative attack
a. Any comment that implies hostile or negative reactions to the recipient. If it is
a polite disagreement to another member’s perspective in a debate about

illness, it is coded as IR or IIR. If it is rather a personal attack to the recipient,

it is coded as NEG.

3 — OTHERS-AD: Advertisement
a. Any comment with some promotional purposes such as ads from
pharmaceutical companies. If the comment includes some information about

the for-proﬁt organization, it is considered as ad.

97

 

b. Any comment that a researcher needs to recruit subjects from the group or to
study the group for research purposes.
c. Any comment that someone sells goods or services to the members of the

group. For example, cleansing intestine or selling human organs.

4 — OTHERS- ETC
a. Some intentional, but supportive comment was made but it does not belong to

any of the OTHERS categories I to 3.

0 — OTHERS-NON
a. No comment was made about OTHERS 1 to 5.
b. Redundant postings. In some cases, identical postings can be posted. If you

sample identical postings, code “0” for the subsequent posting.

98

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99

 

 

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