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If you have questions about this paper, please contact the author
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Leadership in Online Cancer Support Groups
INTRODUCTION
In the United States, according to a survey of the Internet users
conducted by Pew
Internet 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 Group (OSGs) is one of the 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. OSGs exist for almost every disease and condition, and
discussion topics within
each disease category seem limitless. Among the OSGs, cancer is a
common illness,
since cancer is currently the second main cause of death in the
United States (American
Cancer Society, 2001; Pennebaker, 2000). Thus, many studies were done
in the field of
Online Cancer Support Groups (OCSGs) researches about advantages and
disadvantages
of OCSGs over face-to-face cancer support groups and types of support
exchanged within
OCSG members by analyzing the messages posted by regular members on
the discussion
board (Klemm, Bunnelll, Cullen, Soneji, Gibbons and Holecek, 2003;
Leadbetter, 2003;
Shaw, McTavish, Jawkins, Gustafson and Pingree, 2000).
However, no previous study has fully investigated the leadership
issue in OCSGs, even
though it is a key factor of sustainability and growth in OSGs (Yun,
Park and Kim, 2003;
Wituk, Warren and Meissen, 2002). Even Yun and colleagues' study,
which found that
there is a positive curvilinear relationship between leader's work and OSG's
sustainability and growth quantitatively, did not examine the content
of leader's work.
Therefore, the current study explores the realities of leadership in
OCSGs, by focusing on
Leadership in Online Cancer Support Groups
how the unique features of leadership in computer-mediated
communication affect the
quality of social support exchanged in OCSGs.
LITERATURE REVIEW
Strengths and weaknesses of OCSGs
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 a study about breast cancer support groups
exchanging social
support over the CHESS computer network (Shaw et al., 2000), women
participants
viewed their experiences with the computer mediated support group as
an additional
source of support in facing their illness.
Due to this complementary nature of the relationship between
face-to-face cancer
support groups and OCSGs, many studies have focused on identifying
advantages and
disadvantages of OCSGs over face-to-face groups. Since it is possible
to avoid the pitfalls
of traditional support groups such as fluctuating attendance and
inconvenient meeting
times in online groups, OCSGs offer patients many of the therapeutic
features of face-toface
groups in the comfort and privacy of their own homes with increased
accessibility
(Han and Belcher, 2001; Klemm, Reppert and Visich, 1998).
There are also several disadvantages of OCSGs such as noise, negative
emotions, large
2
Leadership in Online Cancer Support Groups
volumes of mail, or 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).
Types of Support in OCSGs
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 OCSG studies was
to examine the
messages posted on the bulletin board of OCSGs, to know what types of
support are
exchanged. The major types of support found by previous studies in OCSGs were
information support, emotional support, social com Bresnahan and
Murray-Johnson,
2002; Campbell panionship and tangible assistance (Braithwaite,
Waldron and Finn,
1999;, 2002; Yun, Park, Kim, Yoo, Kwak and Kang, 2004). However,
these studies were
about regular members' messages and none of them exclusively focused
on analyzing
types of support found in OCSG leaders' messages.
Gender differences in OCSGs and leadership
A majority of OCSG studies have focused on breast cancer groups
predominated by
females, and a recent study (Klemm et al., 2003) considered it a
limitation of previous
studies. For this reason, gender differences in communication style
should not be ignored
especially when examining the content of messages in the breast cancer OCSGs.
3
Leadership in Online Cancer Support Groups
Kuntjara (2002) found that there are gender differences in the style
of communication
in online interactions as follows: 1) Women tend to use frequent
apologies and write
shorter messages. They tend to write shorter message than men do,
since there is a
stronger bond among the members in women groups than in male groups1. 2) Women
show more overt expressions of agreement, appreciation and support
than men. 3)
Women 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.
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 (Volkers, 1999).
However, in the
Internet, a significant number of male patients with prostate cancer
enter into the support
groups 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. Not only in face-to-face cancer support groups but also in
OCSGs, men first
seek information such as understanding diagnosis and treatment and
women more often
exchange emotional support, such as sharing personal experience,
encouragement and
social companionship (Klemm, Hurst, Dearholt and Trone, 1999;
Pinnock, Jones and The
Education Committee of the Australian Prostate Cancer Collaboration,
2003; Volkers,
1999).
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.
4
Leadership in Online Cancer Support Groups
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. 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
yet discovered is
whether or not gender differences in leadership styles are found also
in OCSGs.
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 to produce a change in attitudes, feelings,
thinking, behavior,
and/or performance with individuals, groups and/or organizations (p. 617)."
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 the
additional effort that
the formal position holders contribute in community building work.
Senior members,
whose length of existence within a group is the longest, also often
take on leadership
5
Leadership in Online Cancer Support Groups
roles such as welcoming newcomers, replying to other members' questions, and
promoting a sense of community. However, there was a difference
between owners and
members even though both of them contributed to community building work. While
members of online groups valued informational benefits, group owners
valued altruistic
benefits more highly than informational benefits. 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.
The various tasks of e-leaders include feedback, encouragement, rewards and
motivation. When e-leaders do these tasks, their leadership style
will affect the actual
amount of their participation in the group process. 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 (Zigurs,
2003). Anonymity in
online groups fosters more equalized participation among members than
in face-to-face
groups even though they are not formally assigned to the position of
leader (Avolio and
Dodge, 2001; Shaw et al., 2000). Considering that leadership should
be diversified in the
support group for the group's continuous success (Wituk, Warren and
Meissen, 2002),
OSGs are assumed to have a benefit over face-to-face support groups
due to this indirect
and participative e-leadership. However, Cascio and Shurygailo (2003)
found that no
particular leadership style is necessarily best for an online group,
as long as there is a
high level of trust among the members.
Therefore, several questions about leadership style suah as, "Which
leadership style is
beneficial to OCSG's survival or success between direct leadership
and indirect
6
Leadership in Online Cancer Support Groups
leadership?" or "Is the leadership diversification always good in
support groups even in
the online setting?" still remains unanswered.
Leadership in OSGs
Leadership is the important factor of an online group's success when
it is in the
support group category, too. After analyzing several OSG members'
participation pattern,
Yun, Park and Kim (2003) concluded that the major contributor of an
OSG (i.e., the
person whose frequency of posting is highest in each OSG) should
actively participate in
the group discussion without dominating the discussion process in
order to boost the
other members of the group's participation. However, Yun and
colleagues did not
examine the content of the messages posted by the major contributors
and they failed to
examine the leadership of the formal leaders such as owner or moderator.
Health-care professionals often take on the role of moderators for
smoothing the
discussion process in their own e-therapy groups. Since healthcare
professionals can
correct misinformation, OSGs are expected to function more
effectively when they are
facilitated by a healthcare professional (Deborah and Finfgeld, 2000;
Leadbetter, 2003).
Hsiung (2000) suggested that the hybrid type of 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 members are recommended to provide
information and
social support to each other. Professional leaders are recommended to
interfere with the
discussion process only when members exchange obviously inappropriate
knowledge
(Pies, 2002). However, Lamberg (2003) suggests that a healthcare
professional's
involvement is not always an advantage for OSG, because the
professional may dominate
discussions and misinformation may not be as serious a problem as
physicians fear if the
7
Leadership in Online Cancer Support Groups
group is a well-functioning group. Yet, it remains unknown 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.
Therefore, 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 focusing on who are the leaders,
what they actually do
and whether there is gender difference in leadership activities.
RQ1. What types of leaders exist in OCSGs in terms of their formal status and
profession, and degree of participation?
RQ2. What are the recurring types of support in the messages posted
by the leaders of
OCSGs?
RQ3. Do types of support presented in the leaders' messages differ
between founders and
the most active participants?
RQ4: Do types of support presented in the leaders' messages differ
depending on the
leaders' gender?
Methodology
Sampling
The sample groups in this study were chosen from the support groups
in Yahoo!2. In
order to examine gender differences in leadership styles of OCSGs,
the present study
2 There are several reasons why the groups were chosen from Yahoo!.
There were 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!'s support groups provides a
standardized template for group homepages, while MSN allows them to
vary the template. Therefore, there
8
Leadership in Online Cancer Support Groups
chose the sample groups from the breast cancer and the prostate
cancer category, which is
a same methodology that Klemm et al. (1999) has employed when they
studied gender
differences on OCSGs. Four biggest public groups - in terms of the
membership size -in
each illness category were chosen as the sample groups3. It is
appropriate to sample the
groups by the membership size for the research purpose, because the
study intended to
examine the leadership in the successful OCSGs.
The founder and the most active participant from each sample group
were chosen as
the subjects. A founder is defined as a person who has built an
OCSG.4 The most active
participant is defined as the person whose frequency of postings is
the highest during the
group's first year among all members except the founder. To find out
the types of support
which leaders offer, all messages posted by the founders and the most
active participants
during each group's first year were included as the sample postings.5
As a result, a total
of 1,355 postings from 16 subjects during the first 12 months of each
OCSG were
selected and analyzed in the summer of 2004. The current study
follows the ethical
guideline for online research that it is not necessary to get consent
from the posters in
public online support groups for the research (Perron, 2002). Waiver
of consent from the
posters for this research was justified and approved by the
University Committee on
Research Involving Human Subjects of Michigan State University on
June 17, 2004.
is much less probability that OCSGs' growth and survival are affected
by confounding issues like
technological differences between OCSGs, a fancy design of Web sites,
or more advanced chatting option.
3 Among 10 public prostate cancer groups, the support groups that had
fewer than five members were
excluded from the sample due to few postings on the Web boards. As a
result, four prostate cancer groups
were remained. Among 22 public breast cancer groups, four biggest
groups were selected in order to avoid
the confounding effect from the unequal sample size on the
reliability of the result.
4 Founders can be found easily by checking each group's 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.
5 The present study tried to avoid examining the recent messages in
the Web board, since each group has a
different starting date, from December 17, 1998 to October 21, 2002
and each of them is at a different stage
of growth.
9
Leadership in Online Cancer Support Groups
Data Analysis
RQ1. What types of leaders exist in OCSGs in terms of their formal
status, profession
and degree of participation?
In order to categorize the types of leaders, the following
information of the leaders was
gathered: leaders' formal and professional status, the degree of
participation (i.e. the
percentage of a leader's postings out of the total number of postings
in a group) and
gender. If clicking on a poster's Yahoo! ID, the profile of the
poster including name, ID,
email address, location, profession, age, gender and marital status
appears. This profile is
viewable to the public even without logging on to Yahoo!. To protect
posters' privacy,
any identifying information in the profile and in their postings was
not collected, except
for their gender and profession. The leaders' real names and IDs were
replaced with
pseudonyms and fake-IDs.
RQ2. What are the recurring types of support in the messages posted
by the leaders of
OCSGs?
Content-analysis of the messages was done by two trained coders using
the existing
coding scheme that Yun and colleagues (2004) used in their study6.
Each type of support
in these messages would be described in detail using excerpts from
the messages. In
order 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.7 To be qualified as an
"occurrence of
support," the comment should comprise at least one full sentence. In
order to calculate
6
7
The examples of the leaders' messages are in Appendix B
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.
10
Leadership in Online Cancer Support Groups
the inter-coder reliability, Perreault and Leigh's (1989) index8 was
used instead of the
more frequently employed Cohen's Kappa, because the present study
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. Two trained
coders analyzed 959 and
inter-coder reliability for each type of support varies from the
lowest for the Illnessrelated
information (Ir = .912) to the highest for the Empathy (Ir = 1.00).10
The average
value of inter-coder reliability for eight types of support was .962.
RQ3. 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, the
frequency of the recurring types of support between the founders and
the most active
participants were compared to each other by using a chi-square test.
RQ4: Do types of support presented in the leaders' messages differ
depending on
leaders' gender?
The frequency of recurring types of support in leaders' messages
between the breast
cancer groups and the prostate cancer groups were compared to each
other by using a chisquare
test.
8 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.
9 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.
10 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).
11
Leadership in Online Cancer Support Groups
RESULT
Overview of the subjects
Regarding a leader's formal status, eight founders from each OCSG
were originally
selected as the formal leaders and eight most active participants
from each OCSG were
selected. However, one of the most active participants was invited to
be a co-founder by
the founder and, as a result, the subjects in this study comprised
nine founders and seven
most active participants. The fact that a regular member is assigned
to the co-founder
position because of her active participation shows an interesting
aspect of leadership in
the OCSGs. None of the subjects was healthcare professional11. There
was one and only
male founder among the breast cancer groups12. All posters in the
prostate cancer groups
were males. Considering that breast cancer and prostate cancer are
types of genderrelated
illness, the gender distribution of the leaders in the sample groups
is a usual result.
Table 1 shows a summary of the formal position, profession and gender
of 16 subjects.
Table 1 – Number of Subjects
Prostate cancer
By Position Founder
Most active participant
By Profession Patient
Caregiver
Don't know
Male By Gender
Breast cancer
513
3
6
1
1
1
7
4
4
6
1
1
8
0 Female
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
11
12
Healthcare professionals in the current study include only doctors,
researchers, nurses and therapists.
Males sometimes join the breast cancer group for the purpose of the
research or because they are
caregivers. However, in this case, it was not possible to know why he
founded the breast cancer group
because of the absence of personal information in his profile the
messages he posted during the group's
13
first year.
One of these five was originally a regular member but later assigned
to be a co-founder.
12
Leadership in Online Cancer Support Groups
messages posted by the leaders was 1,016 in the breast cancer groups
and 339 in the
prostate cancer groups, separately. In order to see the details of
group information
containing, see Table 2 in Appendix 1 (pg number need).
RQ1. What types of leaders exist in OCSGs in terms of their formal status,
profession and degree of participation?
There was no healthcare expert in the subjects and all eight OCSGs
were peer-led
groups. 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.
The first type of leader is the founder, the formal leader of OCSGs
and founders are
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. 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. The other five founders were named as
the participative
founder, since they actively participative in the group's discussion
process. 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 person14.
14 A founder of one prostate cancer group 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
13
Leadership in Online Cancer Support Groups
The second type of leader 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 (See Appendix A).
RQ2. What are the recurring types of support in the messages posted
by the leaders
of OCSGs?
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 support they offer and what type of leadership style
exists in these
successful OCSGs. The results shows that the types of support found
in the current study
were the same as the types of support that former studies looking at
regular members'
messages found except for organizational support.
Illness-related support
Informational support and emotional support found in the current
study are types of
support related to the illness. Informational support has two
subcategories: Illness-related
Information (IR) and Information indirectly related with Illness
(IIR). IR is the
there are a total of 1,807 messages in his group. 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 even though his messages occupied only 4% of the total
messages in the group.
14
Leadership in Online Cancer Support Groups
information regarding medication, treatment, diagnosis or related
scientific research.
Leaders gave answers or comments based on their own experiences and
opinions to
questions asking for cancer-related information. For example, "what
worked for me" or
"what did not work for me" was a common form of informational support
in leaders'
messages. IIR is the supportive comment which is about cancer-related
policies, laws or
insurances.
Emotional support has four subcategories: Esteem, Empathy, Sharing
Illness Histories,
and Sharing Feelings. Esteem support is any comment to encourage
other members to
beat the disease and increase their self-esteem by complimenting
them. For example,
OCSG leaders often said, "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."
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 through
or went through the same or a similar situation related to illness.
These comments are
categorized into the support of Empathy.
Sharing a detailed illness history (ESHH) from diagnosis to a recent
treatment plan
was another major type of emotional support found in the leaders'
messages. ESHH are
often followed by the introduction of oneself to others or
informational supportive
comments. In many cases, posters revealed not only the objective
facts about illness
histories but also their feelings related to illness (ESHF), for
example, the complaint
about a "deprived life" due to the illness. Though the purpose of the
poster is mainly to
express his or her own feelings rather than understanding readers'
feelings, ESHF is a
15
Leadership in Online Cancer Support Groups
type of emotional support because self-disclosure of a member helps
the other members
who read the message identify themselves with the support group easily.
In sum, the result shows that these OCSGs function appropriately as
support groups,
because illness-related help provision is a key purpose of the support group.
Non illness-related support
The leaders' support is not limited to only illness-related help
provision. Leaders
encourage the members to build the companionship so that they
constantly can stay in the
group and visit the group again, even more often. Thus, they share
not only illness-related
experiences or feelings but also other aspects of their lives in
order to make friends. Any
comment that indicates a sense of community such as chitchat or
general banter belongs
to this type of support. Some leaders posted encouraging poems, Bible
verse, humor or
parables that they read from the sources outside the group.
Regardless of the different
themes, all of them are considered as giving social companionship
because they intend
the empowerment of a keen relationship among the members by sharing
life perspectives
other than cancer.
Another non-illness related topic found in the leaders' messages is
the organizational
support. Organizational support has been considered as a minor theme
of the discussion
in OSGs in previous studies. However, the current study found that
comments related to
organizational support were one of the major themes in the OCSG
leaders' postings.
Administrative work is the first type of organizational support. It
involves installing and
maintaining the basic system that enable group communication. This
type of help
16
Leadership in Online Cancer Support Groups
includes maintaining an up-to-date content archive such as newsletter
uploading,
updating lists of FAQs, and managing the list of group members.
While administration is online community's technical structure
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.
Previous studies assumed that un-moderated online groups might 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 the leaders
controlled the
discussion even though these OCSGs were un-moderated groups. For
example, the study
found a case that a breast cancer group founder deleted a new member
on the basis of
inappropriate use of the group, saying "I deleted "getting_80", who
seems bent on
rejoining the club repeatedly under different pseudonyms or else he
has a lot of friends
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."
Social encouragement is the other type of social management of the
leaders. Leaders of
OCSGs not only control the communication infrastructure but also encourage
communication among the members. Social encouragement includes the
activities such
as organizing group chat time or off-line meeting schedule, group
promotion, welcoming
new members, and encouraging members' participation in the group. For
example, a
17
Leadership in Online Cancer Support Groups
founder in one of the sample OCSGs said, "Welcome to the club. Hope
we can be of help
and support to you. Please tell us a little about yourself."
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. Therefore, organizational support is the important
type of leadership
activities that makes OCSGs not collapse.
RQ3. Do types of support presented in the leaders' messages differ between
founders and the most active participants?
The current study found that founders more devoted their discussion to social
companionship and organizational support than the most active
participants do. Table 5
(See Appendix A.) 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.
A total of 1,750 comments out of 1,355 messages were considered as
supportive. A
result of Chi-square test showed that the frequent types of support
differ between
founders and the most active participants (x2 (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. (For
detailed information of
the chi-square analysis result, see Table 6 at Appendix A).
Based on the result above, the most active participants can be called
informal leaders
even though they do not have the formal position within the group.
The leadership of
18
Leadership in Online Cancer Support Groups
most active participants is not due to merely amount of their work
but due to the content
of their work - helpful knowledge about illness and emotional support
to other members.
The result also shows that leadership is diversified between formal
leaders and informal
leaders in terms of the types of work that they do, since the most
frequent type of support
both types of leaders offered was different.
RQ4: Do types of support presented in the leaders' messages differ
depending on
leaders' gender?
The most frequent type of support that leaders offer varies,
depending not only on the
leader's formal position but also on their gender. Breast cancer
group leaders, most of
whom are females except one person15, focused on social companionship
and emotional
support, while all of the male leaders in prostate cancer groups
focused greatly on the
informational support. The following message is an example of the leader's
encouragement for sharing emotional support among the members in the
breast cancer
group, especially for sharing their feelings.16 She said, "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 most of the support
provided by the leaders of prostate cancer groups. The comments
related to social
companionship were the least found type of support in the prostate
cancer group leaders'
15 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.
16 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.
19
Leadership in Online Cancer Support Groups
messages. 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
Prostate cancer
250 (71%)
52 (15%)
13 (4%)
36 (10%)
351 (100%)
Breast cancer
265 (19%)
423 (30%)
491 (35%)
220 (16%)
1399 (100%)
Information
Emotional support
Social companionship
Organizational support
Total
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,
which is a non-illness related type of support neglected by the
former studies. Second,
even though previous studies consider a lack of clear and accountable
leadership a
disadvantage of OCSGs, the present study shows that some members of
OCSGs often
takes on the leadership role voluntarily. Third, this study found
that there is leadership
diversification between the leaders depending on their formal status
in OCSGs. Founders
tend to do a moderator's role such as social encouragement and social
control and the
most active participants tend to do a illness-related support
provider's role. Finally, while
many of previous 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 gender differences in leadership activities in OCSGs.
20
Leadership in Online Cancer Support Groups
Healthcare Expert's Absence in OCSGs
There are several important implications of the result of this study.
First, healthcare
professionals' involvement in the OCSGs was not found even though
previous studies
have suggested that it is an important element of an OCSG. As a
result, it is a
disadvantage of the OCSGs that correction of the misinformation is
hard for nonprofessional
leaders. Actually, a founder of one breast cancer group even stated that a
professional's involvement in the group would be good for providing
appropriate
informational support with members when she found that one member's
husband was an
oncologist.
…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. Therefore, from this implication,
leaders of OCSGs are
recommended to actively recruit a professional member or to build a
relationship with
local healthcare organization in order to get help from them for
answering to the
members' information request and for correcting misinformation.
Gender differences in the amount of social companionship provided by
the leaders
The leaders of OCSGs sometimes expressed their concern about the
exchange of nonillness
related topics, since they could blur the purpose of support groups.
For example, a
founder of a breast cancer OCSG said, "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
21
Leadership in Online Cancer Support Groups
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 was the most frequently found type of support in
the breast cancer group leaders' messages, while it occupied only 4%
of the total support
in the prostate cancer group leaders' messages. For example, even the
founder who said
that she built her group for the informational reasons in the former
example posted many
messages containing non-illness related topics; Thirty-two percent of
the supportive
comments found in her messages actually belonged to social companionship.17
On the other hand, "too much chitchat" was 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 messages posted by the members was 2,953
in the breast
cancer groups and 2,164 in the prostate cancer groups (See Table 2 in
Appendix A).
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 is different between breast
cancer groups and
prostate cancer groups.
17 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
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%).
22
Leadership in Online Cancer Support Groups
Gender Differences in Leadership Style
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,
women's indirect way of speaking tend to keep any debate in a group
from comprising
personal attacks on each other. Even if there is an attack to each
other between the female
members, their communication style is helpful for cooling down the
situation. For
example, a co-founder in one breast cancer group in this study
moderated the discussion
between the two regular members. At first, a female caregiver wondered whether
continuous chemotherapy would be helpful for her mother. Responding
to her, another
member showed her disagreement with the idea of more chemotherapy.
Meanwhile, these
two members seemed to be hurt by each others' postings and even one
of them stated that
she would leave the group. In this situation, the founder's way of
moderation tended to
reflect a feminine quality of communication style. She introduced
both of them to each
other and tried to make them aware of the positive aspect of their
personality as follows.
Demy, I'd like to introduce you to Hillary. 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 and her
way of moderation
was presented indirectly as suggestions, by saying "She has a right
to be here" to both of
them.
23
Leadership in Online Cancer Support Groups
On the other hand, male leaders in the prostate cancer groups tend to use more
assertive and matter-of-fact language in similar circumstances. As a
result, more debate
took place in the prostate cancer groups than in the breast cancer
groups because of the
aggressive and critical language, so that the male leaders in the
prostate cancer groups
often had to moderate members' inflammatory comments. The following
message is an
example of moderation message from a prostate cancer group founder
due to frequent
attack and insult between members. In this message, 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.
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.
.
In summary, these four main implications of the results are helpful
in understanding
the realities of leadership among the successful OCSGs in terms of
the leader's
professional status and gender differences in leadership style.
Limitations and Future Research
Limitations
This exploratory study is meaningful in that it initiates the first
step into the
leadership issue of OCSGs. Yet, the current study has several
limitations. First of all, the
sample size of only 16 leaders from eight un-moderated public OCSGs
is small. Second,
the results cannot be generalized into members-only groups. The
interaction between the
members in the members-only groups is expected to differ from those
in the public
groups. Third, this study recruited the leaders from breast cancer
groups and prostate
24
Leadership in Online Cancer Support Groups
cancer groups. However, this approach cannot control the possibility
that these
differences occur from variation in illness type rather than gender.
Finally, content
analysis, the research method used in this study, may not reveal
other aspects of the
leadership in OCSGs, such as "why founders built OCSGs" or "what are
the benefits they
seek to obtain or actually obtain".
Future Research
First, in order to achieve a bigger sample size, future studies
should consider another
methodological approach, such as a survey of many numbers of founders
and active
participants. Second, in order to get rid of a possible confounding
effect of illness type on
the result, future studies about gender differences in leadership
style should recruit
subjects from the same category of illness. Therefore, it will be
manageable and, at the
same time, meaningful methodology for future researchers to do a case
study on a
successful OCSG and to have an in-depth interview with the leaders of
the case group in
order to examine the realities of leadership.
25
Leadership in Online Cancer Support Groups
A. Tables
Table 2 – Number of Postings by Regular Posters and Leaders
Most Active Group Illness
B1 Breast
B2 Cancer
B3
B4
Total
P1 Prostate
P2 Cancer
P3
P4
Total
Table 4 –Participation by Leaders
Average No. of
Postings
Standard
deviation
18 Regular poster in this study is a poster excluding the founder and
the most active participant in a group
who has no formal position.
19
20
21
22
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
APPENDIX .
Regular
posters18
22
(n=14)19
63
(n=27)
171
(n=32)
1681
(n=44)
1937
10
(n=9)
123
(n=33)
147
(n=49)
1545
(n=165)
1825
Observing
Founder
4.5
(n=4)
2.517
Founder
4
2
160
348
514
97
8
4
75
184
26
Participant
5
18
64
41520
502
8
20
15
112
155
Participative
Founder
219.8
(n=5)
152.937
Starting
Date of Group
06/18/1999
07/08/1999
12/17/1998
10/10/1999
2,95321
01/07/2000
05/05/2002
07/11/2000
10/21/2002
2,16422
Most Active
Participant
35
(n=7)
39.183
Leadership in Online Cancer Support Groups
Table 5 - Types of Support by 3 Types of Leaders
Founders
Participative
Founders
Observing
Founders
Category of Supportive
Comments
374 (26%)
395 (27%)
6 (30%)
2 (10%)
Information
Emotional Support
456 (32%)
224 (15%)
0 (0%)
12 (60%)
Social Companionship
Organizational Support
1449 (100%) 20 (100%) TOTAL
Table 6 – Number of Supportive Comments
Founders
380 (26%)
397 (27%)
456 (31%)
236 (16%)
Category of Supportive
Comments
Illness-related Information
Support Emotional support
Non-illness related Social companionship
Support Organizational support
TOTAL 1469 (100%)
x2 (3)= 68.33, p < .001
Table 8 – Members' Participation by Founder's Participation
No. of Postings by Group Founder's
Participation23 Regular Posters
2096 (n=44)25 14%
5%
Participative
Founder 1657 (n=165)
235 (n=32) 41%
2% 162 (n=49)
143 (n=33)
Observing
Founder 5%
2% 81 (n=27)
27 (n=14) 13%
84% 18 (n=9)
1
2
3
4
5
6
7
8 Dominant
Founder
23
24
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.
25 n indicates the number of regular posters in the group
26 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 (1 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.
27
Most Active
Participants
135 (48%)
78 (28%)
48 (17%)
20 (7%)
281 (100%)
Most Active
Participants
135 (48%)
78 (28%)
48 (17%)
20 (7%)
281 (100%)
No. of
Adopters24
35
11426
20
25
18
15
7
3
Leadership in Online Cancer Support Groups
B. 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.
Breast Cancer Group 3 (Sun Jul 18, 1999)
Subject: What is your interest in Breast Cancer?
28
Leadership in Online Cancer Support Groups
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 Q10s on your behalf. I wish I could send
over my fancylady
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 1 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.
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
29
Leadership in Online Cancer Support Groups
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 free 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
(NAPC) 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.
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.
30
Leadership in Online Cancer Support Groups
Prostate Cancer Group 2 (Date: Tue Jul 11, 2000)
Subject: Check out the Links!
Please feel free to join, add Links and post info and questions
regarding Prostate
Health. 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/betterprostate.html
The above Link is also available in the Links area on the left. What
about other methods
and solutions?
Prostate Cancer Group 3 (Date: Tue Dec 10, 2002)
Subject: Re: For more activity
--"ID2 [log in to unmask] >wrote: > check the sci.med.prostate.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.
31
Leadership in Online Cancer Support Groups
Prostate Cancer Group 4(Date: Tue Jul 11, 2000)
Subject: blue green Algae (heavy metals)
This is from the current newsletter.
http://www.mercola.com/2000/jul/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
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
32
Leadership in Online Cancer Support Groups
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).
33
Leadership in Online Cancer Support Groups
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