Support Care Cancer (2010) 18:553–560
DOI 10.1007/s00520-009-0683-6
ORIGINAL ARTICLE
Social and psychological determinants of participation
in internet-based cancer support groups
Mette Terp Høybye & Susanne Oksbjerg Dalton &
Jane Christensen & Lone Ross & Katrin Gaardbo Kuhn &
Christoffer Johansen
Received: 19 February 2009 / Accepted: 16 June 2009 / Published online: 5 July 2009
# Springer-Verlag 2009
Abstract
Purpose In this study, we identified the social and
psychological characteristics of Danish cancer patients that
determine use of the internet for support.
Materials and methods We invited 230 cancer patients
taking part in a public rehabilitation program to participate
in an internet module comprising training in the retrieval of
cancer-related information from the internet and self-
support groups. Persons who were motivated to join the
internet groups (N = 100; 47%) were compared with
persons who chose not to participate (N = 111) on the
basis of self-reported baseline questionnaire data. Nineteen
persons either did not return the questionnaire or had
missing values in confounding variables.
Results Cancer patients who were motivated to participate
in internet support groups belong to higher socioeconomic
groups (based on household income and employment)
compared to non-participants. We observed no difference
between the two groups in quality of life or psychological
well-being, while coping to some extent seemed related to
participation in internet support groups.
M. T. Høybye (*) : S. O. Dalton : K. G. Kuhn : C. Johansen
Department of Psychosocial Cancer Research,
Institute of Cancer Epidemiology, Danish Cancer Society,
Copenhagen, Denmark
e-mail: metteh@cancer.dk
J. Christensen
Department of Statistics and Epidemiology,
Institute of Cancer Epidemiology, Danish Cancer Society,
Strandboulevarden 49,
DK-2100 Copenhagen, Denmark
L. Ross
Research Unit, Department of Palliative Medicine,
Bispebjerg Hospital,
Copenhagen, Denmark
Conclusion This study adds to the discussion on social
inequality in internet use by cancer patients, showing that
patients who are not inclined to use internet-based
interventions are characterized by social position and
employ more passive coping strategies.
Keywords Cancer . Internet . Support groups .
Rehabilitation . Socioeconomic position .
Psychological measures
Introduction
The internet is not only a unique source of information but
also offers the possibility for extending social support
among cancer patients that may positively affect the process
of rehabilitation after cancer. A number of randomized
studies appear to indicate that participation in internet-
based interventions reduce the prevalence of depression and
perceived stress [1], significantly improves social support
and information competence [2], and significantly improves
self-perceived health status [3] of cancer patients in an
internet intervention group.
Thus, use of the internet in the treatment of cancer
patients holds much potential for all aspects of follow-up,
including clinical follow-up, psychosocial intervention, and
communication with and between cancer patients. Never-
theless, studies show that internet use for health information
seems significantly related to socioeconomic position in the
general population [4, 5] as well as in cancer patients [6, 7].
Further, the disparity found in stage and survival of breast
cancer patients by socioeconomic position [8, 9], as well as
the general social inequality documented in incidence and
survival from cancer [10], possibly imply a social inequal-
ity in access to resources provided in the health care
554
system. If the internet is to be regarded a general resource
to cancer patients and existing social inequalities are not to
be further amplified by use of the internet in cancer care, it
is imperative to explore the associations of social and
psychological characteristics to internet use.
In this study, we identified the social and psychological
characteristics associated with use of internet support
groups by 211 cancer patients, with the particular aim of
characterizing those who were not motivated to use
internet-based interventions. Based on the previous reports
[4-7], we expected to find participation in the internet
intervention to be influenced by social position and
psychological factors. The study was part of a public
rehabilitation program offered to cancer patients in Den-
mark who had finished active treatment for their cancer and
had a life expectancy of more than 6 months.
Study design and setting
During two time-periods, 1 July to 1 October 2003 and 1
January to 18 April 2004, we invited a total of 230 cancer
patients from a week long rehabilitation course at a national
cancer rehabilitation center in Denmark [11]. At baseline,
written consent was obtained from all participants. Data
management and security with regard to this study were
approved by the Danish Data Protection Agency (J. no.
2004-41-3815). Fifteen persons did not complete the
baseline questionnaire, and four persons had missing values
in confounding variables, leaving 211 eligible participants
in the study (Fig. 1). Of this group, 83% (N = 176) attended
an introductory lecture given by one of the authors (MTH)
and were invited to participate in one of the 12 internet self-
support groups (Fig. 1). Each group consisted of four to 12
cancer patients.
Access to the internet was reported by 63% of
participants (N = 133). About half of these had primary
access from home (53%; N = 71), while 31% (N = 41)
reported their primary access to the internet to be at work,
and 16% (N = 21) had primary access from other places
(library, friends, internet café, etc.).
At baseline, written consent was obtained from all
participants. Of the 211 participants, 184 (87%) were
women. Participants had cancer at different sites (Table 1),
but the majority had breast cancer (70%).
Internet rehabilitation module
The first part of the lecture provided general instructions on
how to use the internet to obtain general information on
health and specific information on cancer. In the second
part of the lecture, participants were informed about access
to self-support groups on the internet. As some participants
Support Care Cancer (2010) 18:553–560
were motivated to participate but did not have access to the
internet at home, participants were informed about how to
obtain such free access at public libraries in their local
environment. Further, participants were assisted to open an
e-mail account, as was needed to register for the internet
groups, if they did not have one.
The participants were told that a member of the research
team (MTH) would observe the activity of all groups in
order to assess general use.
Internet group system
All internet groups were run in a browser-based software
platform with access through the website of the Danish Cancer
Society (http://www.cancer.dk). Each internet group featured
an entry page, an asynchronous discussion board, and live-
chat to be used according to the needs and wishes of the
participants. The 12 internet groups in this project were all
closed groups, accessible only by an invitation that partic-
ipants received by e-mail after registration for the project. All
discussions were protected by a password, and communica-
tion was encrypted. The system is approved by the Danish
Data Protection Agency, and we used this existing system in
agreement with the webmaster at the Danish Cancer Society.
When participants logged on to the system, they were asked
to accept the invitation and thereby gain access to their
specific group. The groups were open to access 24 h a day. A
member of the research team (MTH) administered and
facilitated all groups, and four of the groups were adminis-
tered in collaboration with a peer facilitator. The task of the
facilitator was to maintain the flow of discussion, mediate in
potentially harmful situations, and provide technical assis-
tance. No therapeutic intervention was provided. At the end
of the project, the groups were encouraged to continue as
self-support groups with peer facilitation.
Questionnaire
Age, sex and cancer type, socio-demographic variables of
marital status, education, employment status and household
income, and psychological measures were obtained from a
self-administered baseline questionnaire that was mailed to
all participants 2 weeks before their stay at the rehabilitation
center.
Marital status was classified as married/cohabiting or
living alone (divorced, widowed, or single). The participants
were classified by the International Standard of Education
[12] into three educational categories on the basis of the
highest educational level achieved, as basic education (1–
2, i.e., first and second stage of primary education),
secondary education (3, i.e., high school and vocational
training), and higher education (4–6, i.e., college and
university; post-secondary including all levels to tertiary
Support Care Cancer (2010) 18:553–560 555

Did not return questionnaire

Eligible for participation 1 N=15
N=230

Completed baseline questionnaire

N=215
Missing values in confounding variables
N=4
Eligible for analysis
N=211 (100%)
Did not attend introductory lecture for
internet intervention
N=35 (17%)

Attended introductory lecture for internet

intervention
N=176 (83%)

Invited for participation in one of 12

internet groups
Non-users of internet support group N=176 Users of internet support group
N=111 (53%) N=100 (47%)

1
All participants eligible for participation in this study participated in a week-long rehabilitation course at the Rehabilitation Center Dallund, Denmark, between 1 July
and 1 October 2003 or between 1 January and 18 April 2004. Cancer survivors from all regions in Denmark participated in the rehabilitation course at their own or
their doctor's initiative and underwent no formal screening before participation.

Fig. 1 Inclusion of cancer survivors eligible for participation in the internet lecture and intervention from a public rehabilitation program,
Denmark 2003–2004

education). The employment status of participants was
divided in three categories: working, sick leave/unem-
ployed, and pensioner or other. The income of participants
was categorized as low (0–31,000 €), medium (31,500–
70,000 €), and high (≥70,500 €) on the basis of 17 annual
income intervals on the questionnaire ranging from 0 to
>70,500 €.
The psychological well-being of participants was mea-
sured on three independent scales including the quality of
life questionnaire of the European Organization for Re-
search and Treatment of Cancer (QLQ-C30) [13]. The scale
consists of 30 items, which include one overall measure of
global health status and quality of life, five functional
scales, and a range of symptom scales. The scores range
from 0 to 100, a higher score indicating better quality of life
or global health status. The results of this study are
presented only as the overall quality of life score.
The profile of mood states short-form scale [14, 15] is a
37-item short version of the profile of mood states scale,
which was used to measure the transient state of six
moods or affective states: tension/anxiety, depression/
dejection, anger/hostility, vigor/activity, fatigue/inertia,
and confusion/bewilderment. Total mood disturbance can
be assessed as the sum of the scores for these six moods,
higher scores representing greater mood disturbance. The
results of this study are presented only as total mood
disturbance used as a measure of psychological well-
being.
To evaluate the adjustment to cancer, a shorter 29-item
version of the mental adjustment to cancer scale (Mini-
MAC) [16] was used to measure five dimensions of
cancer-specific cognitive and behavioral coping: fighting
spirit, helplessness or hopelessness, anxious preoccupa-
tion, fatalism, and cognitive avoidance. The MAC assess-
ment indicates the tendency to cope with the stress of
cancer in a particular way [17].
Statistical analysis
Differences in the baseline characteristics of participants
who used the internet self-support groups (users) and those
who did not (non-users) were compared by using two
sample t test at 5% significance level. By using a normal
plot, we investigated whether each psychometric scale
could be described by a normal distribution and found no
deviation. To determine if there was a difference between
users and non-users regarding a given scale, analysis of
covariance was used, and all models were adjusted for age,
education, sex, household income, marital status, and
employment status. The general linear models procedure
in SAS (release 9.1) [18] on a TextPad platform was used
for statistical analyses.
556 Support Care Cancer (2010) 18:553–560

Table 1 Socio-demographic
characteristics of 211 partici- Characteristics 100 users N (%) 111 non-users N (%) p value
pants in a study of the internet
and rehabilitation at the Reha- Mean age (years, range) 50 (38–62) 57 (42–76) <0.0001
bilitation Center, Dallund, Den- Sex
mark, 2003–2004 Male 10 (10) 17 (15) 0.2505
Female 90 (90) 94 (85)
Educationa
Basic education (ISCED 1–2) 8 (8) 17 (15) 0.0675
Secondary education (ISCED 3) 35 (35) 47 (42)
Higher education (ISCED 4–6) 57 (57) 47 (42)
Annual household income (€)
Low (0–31,000) 21 (21) 52 (47) <0.0001
Medium (31,500–70,000) 43 (43) 42 (38)
High (≥70,500) 29 (29) 7 (6)
Do not wish to answer 7 (7) 10 (9)
Marital status
Married or cohabiting 79 (79) 56 (50) <0.0001
Living aloneb 21 (21) 55 (50)
a
Employment status
Highest educational level
Working 85 (85) 52 (47) <0.0001
achieved; classified by Interna-
tional Standard Classification of Pensioner/otherc 9 (9) 47 (42)
Education (ISCED) [12] Sick leave/unemployed 6 (6) 12 (11)
b
The category living alone Cancer site
includes divorced, widowed, Breast cancer 75 (75) 72 (65) 0.1680
and single
c
Colorectal cancer 4 (4) 7 (6)
Other includes persons not af-
filiated to a work place for Head and neck cancer 4 (4) 2 (2)
reasons other than unemploy- Lymphoma and leukemia 2 (2) 10 (9)
ment or illness, e.g., housewife, Female cancer 8 (8) 7 (6)
student, or maternity leave Malignant melanoma 0 (0) 3 (3)
d
Other includes one case of Lung cancer 2 (2) 4 (4)
characinoid syndrome, one case
of brain cancer, one case of Prostate cancer 2 (2) 2 (2)
kidney cancer, one case of Otherd 1 (1) 4 (4)
esophagus cancer, and one case Missing 2 (2) 0 (0)
of testis cancer

Results did not (Table 2). In regard to forms of coping, fatalism,

By 1 August 2004, 100 participants (47%) had actively
used the internet group assigned to them at least once
(Fig. 1). Users of the internet groups were significantly
younger and had significantly higher annual household
incomes (29% of the users were in the high income group
versus 6% of the non-users; Table 1). In addition,
significantly more internet group users were working and
were living with a partner. More non-users (15%) than
users (8%) had attained basic school education only,
although this difference was not statistically significant
(Table 1). We found no difference in the distribution of sex
or cancer site between users and non-users of the internet
groups (Table 1).
There was no significant difference in the overall quality
of life or psychological well-being between participants
who used the internet self-support groups and those who
and cognitive avoidance, both considered passive forms of
coping were significantly associated to non-participation in
the internet self-support groups in the univariate analysis.
However, when adjusted for age, sex, education, household
income, marital status, and employment status, this associ-
ation only remained for cognitive avoidance (Table 2).
As the study population is dominated by breast cancer
survivors (70%), we tested whether our finding was
predicted mainly by cancer site, by stratifying the analyses
by breast cancer (N = 147) and a collapsed group of all
other cancer sites (N = 64). The mean values on passive
coping strategies, for users and non-users, respectively, of
breast cancer patients were almost identical to that of the
group with other cancer sites. However, due to the small
sample size, none of the differences between users and non-
users of the internet groups reached significance in the fully
adjusted analysis (data not shown).
Support Care Cancer (2010) 18:553–560 557

Table 2 Psychological scale scores for 211 internet users and non-users in a study of the internet and rehabilitation at the Rehabilitation Center,
Dallund, Denmark, 2003–2004

Scale Subscale/item Users (mean, SD) Non-users (mean, SD) Crude p value Adjustedd p value

EORTCa n = 100 n = 111

Quality of life 76 (20.0) 76 (20.3) 0.7598 0.1656
Mini MACb n = 94 n = 98
Helplessness-hopelessness 13 (4.2) 14 (4.3) 0.0978 0.4842
Anxious preoccupation 20 (5) 20 (5.2) 0.6876 0.4786
Cognitive avoidance 9 (2.3) 10 (2.1) 0.0009 0.0282
Fatalism 13 (2.2) 14 (2.3) 0.0088 0.1743
Fighting spirit 12 (2.1) 11 (2.2) 0.7321 0.7833
POMSc n = 99 n = 103
Total mood disturbance 20 (22.8) 18 (22.8) 0.5292 0.4275
a
The European Organization for Research and Treatment of Cancer QLQ-C30 [13]
b
Mini-mental adjustment to cancer scale [16]
c
Profile of mood states scale [14, 15]
d
Adjusted for age, education, sex, household income, marital status, and employment status

Discussion differences in physical or psychological health indicators

We identified the use of cognitive avoidance in the
psychological adjustment to cancer as a barrier to partici-
pation in internet-based support groups. In the univariate
analysis, non-participants of internet groups were found to
use cognitive avoidance and fatalism in coping with cancer
to a greater extent than internet support group users,
indicating that the emotional and supportive interaction
within an internet-based support group does not appeal to
cancer survivors who use these coping strategies in their
adjustment to cancer. This is in line with a previous study
showing that cancer patients who decline information or
participation in psychosocial support programs are found to
employ passive and avoidant coping strategies [19].
When accounting for socioeconomic position, the ob-
served difference in fatalism between users and non-users
of internet groups disappeared. This suggests a relation
between the socioeconomic resources available to the
individual survivor and the use of different coping
strategies, as has also been suggested elsewhere [20]. Still,
cognitive avoidance independently determined non-
participation in internet support groups. This may suggest
that internet-based support is attractive only to cancer
survivors who use less avoidant coping. To this group of
cancer survivors, internet support groups can be an
empowerment strategy by providing new ways of acting
on illness [21].
No difference was found on the quality of life or
psychological well-being between the two groups, which
is similar to the findings of a study of active and inactive
participants within an internet support group, reporting no
[22].
Participants motivated to use internet self-support
groups, in this study, were as expected of higher socioeco-
nomic position as measured by income and employment
status compared to non-users. Further, we observed that
married or cohabiting cancer patients participated signifi-
cantly more often in internet groups. These results are
partly supported by observations from three randomized
trials (involving 53–246 women), which generally found
that participants were well educated, had medium-to-high
incomes, and were living with a partner [1-3]. Similarly, a
significant difference in social position by age, education,
and income was found among 511 Swedish men treated for
prostate cancer, with regard to use of the internet for
information on prostate cancer [7].
More users than non-users of the internet groups were
working, as more than half (53%) of the non-users reported
no affiliation to a work place compared to only 15% of the
internet group users. To the best of our knowledge, no other
study has reported on the employment status of cancer
patients who use or do not use the internet, but type of
employment has been found to be related to higher health-
related internet use in the general population [5].
There was a very unequal distribution of sex in the group
of eligible participants from which we recruited. One could
argue that such unbalanced population will affect the
general motivation for use of internet support groups.
However, we find no significant difference in the distribu-
tion of sex between users and non-users in line with
previous findings of an equal motivation for and use of
internet support groups among men and women [23, 24].
558
Further, there was no significant difference between users
and non-users of the internet groups by cancer site. Our
study population was dominated by breast cancer, but the
difference between internet users and non-users was
probably not to be explained by cancer site alone. Our
priority was to include the possible different social
positions represented by diversity of cancer site and gender
in the analysis, rather than exclude these for a sole focus on
women and breast cancer, recognizing that our study does
not hold statistical power to generalize on the issues of
cancer site or gender. To fully explore the association
between cancer site and internet group use, a larger study is
needed.
By December 2003 (matching the time of inclusion for
this study), the general access to the internet of the Danish
population was reported to be 79% [25], and access to the
internet across participants in our study (63%) was thus
below the Danish average.
In 2005, 48% of all households in the European Union
(25 states) had access to the internet [26]. A previous
survey found that 23% of the people within the European
Union had used health information online [27]. Neverthe-
less, there is a long leap from general access to actually use
of the internet to support cancer patients, as stressed by an
exploratory study from the National Cancer Institute in the
USA, which found that breast cancer patients from ethnic
minorities had very little use of the internet for cancer-
related information [28]. A Eurostat report shows that
computer skills and internet use across all European
countries is strongly related to educational level and active
participation in a workplace [29], which emphasize the
importance of employment status in motivation for using
internet-based support as we find in this study.
We did not obtain information on internet access at
person level but recorded the number of persons with
internet access and their place of access by show of hands
during lectures. This limits our analytical possibilities, as
we are not able to adjust for internet access. As all
participants were able to obtain free internet access at their
public library and were encouraged to make use of this, it
could be argued that all participants had internet access,
keeping in mind how issues of privacy, physical ability, and
anonymity may affect or render impossible the use of such
free access. A few participants obtained access to the
internet from public computers in order to participate in the
groups which exemplifies that use of internet support
groups is influenced by aspects other than access to the
internet.
While access cannot be ignored as an important barrier
to the use of internet-based interventions among Danish
cancer patients, we argue that social position is the major
barrier. Socioeconomic status has previously been shown to
be a predictor for participation/non-participation in psycho-
Support Care Cancer (2010) 18:553–560
social cancer interventions [20, 30]. A particular issue in
internet-based group interventions in addition to this is
literacy and readability, as has been studied in an English
language context [31], because social interaction in internet
groups is mainly textual. Though this is not the focus of our
study, it is clear that such issues are highly correlated with
social position and thereby add to the social inequality in
use of internet interventions that we point out here.
The barriers to internet use suggested by this study may
to a large extent be valid for the population in general, as a
recent study showed [4]. Still, it is imperative to address the
barriers to internet use specifically in relation to a cancer
population, as the social inequality in internet-based
interventions in cancer treatment and support has large
implications for the generalization of a possible positive
effect of such interventions.
The advantages of this study include the fact that the
participants were recruited from a public rehabilitation
program offered to cancer patients in Denmark. It is
important to investigate social biases in this type of
internet-based program for cancer patients to highlight the
fact that the internet cannot be used to extend support to all
cancer patients. This further indicates that generalization of
the results from randomized studies of internet support
groups is difficult, as social position appears to determine
cancer patients’ access to such interventions. To the best of
our knowledge, no previous study has compared both social
and psychological measures of users and non-users of
internet cancer support groups. Another major difference is
that our study included persons with cancer at many
different sites; whereas, most previous studies have
addressed mainly breast cancer patients [1-3, 32].
Participants in our study attended the rehabilitation
course at their own or their doctor’s initiative. This might
imply that their overall motivation to take part in a
rehabilitation intervention was greater than would be
found in an unselected population of cancer patients. We
have no way of determining how this affected the overall
results. Comparing the quality of life of participants in
this study to previous studies suggests that Danish breast
cancer patients have previously reported quality of life to
be poorer [33, 34] or at level with [35] what we find in
this sample. On the other hand, the mood disturbance of
cancer patients in previous Danish studies have been
reported to be both lower than [36] and at level with
participants in this study [35]. This could suggest that our
study population is skewed but does not show any uniform
direction.
It would further have been of interest to include the
frequency of use as a variable in this study. This was not
possible, as the administrative module of the internet-based
software system used did not provide the ability to count
and measure frequency of use. Furthermore, the study is
Support Care Cancer (2010) 18:553–560
based on a relatively small population, making it difficult to
draw firm conclusions.
Conclusion
This study adds to the growing literature on internet-based
support groups for cancer patients, with the finding that
participation in internet-based interventions is related to
social position, mainly determined by economic resources
and active participation in the work market.
Further, we identified use of cognitive avoidance as a
coping strategy in the psychological adjustment to cancer as
a barrier for participation in a socially and emotionally
confronting intervention, like an internet support group.
Despite the psychosocial benefits of internet interven-
tions suggested by previous studies, such interventions may
not be accessible to cancer patients of lower social position
or passive coping.
Despite the positive, engaging potential of the internet in
cancer care, it is imperative to recognize that this technology
might not support groups of underserved cancer patients,
unless a specific effort is made to include this group.
Acknowledgements The study was funded by the IMK Foundation,
the Tryg Foundation, and the Danish Cancer Society. The authors
wish to acknowledge the important collaboration of the staff at
Rehabilitation Center Dallund, Denmark, in providing time in the
rehabilitation schedule at the center for the internet teaching lectures.
Disclosures None.
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