Cancer Narratives and Journal of Health Psychology

Copyright © 2003 SAGE Publications

London, Thousand Oaks and New Delhi,
the Cancer Support www.sagepublications.com
[1359–1053(200311)8:6]

Group Vol 8(6) 720–737; 038240

KYLA M. YASKOWICH & HENDERIKUS J. Abstract

STAM We conceptualize the
Department of Psychology, University of Calgary, Canada experience of cancer as
requiring ‘biographical work’
and examine the nature of this
work in the context of peer
K Y L A M . YA S KOW I C H is a clinical psychologist support groups. Interviews with
currently working in private practice and doing clinical participants and leaders of
consulting with Mount Royal College and an employee support groups were used to
assistance program. She continues to work in a theorize the importance of
therapeutic capacity with individuals coping with support to cancer patients with
cancer and other chronic illnesses as well as in general varying stages and length of
mental health with a focus on preventive interventions. disease. Patient interviews led
us to describe the process of
H E N D E R I K U S J . S TA M is a professor of psychology in joining, belonging, and
the Department of Psychology at the University of identifying with, support groups
Calgary. He is founding and current editor of Theory & as an important process within
Psychology and in addition to topics in critical health patients’ ongoing biographical
psychology publishes on the history and foundations of work and encompassing a
psychology. search for a ‘separate social
space’. We discuss the
implications for understanding
the stigmatizing nature of
cancer and the ‘civic life’ these
groups support.

AC K N OW L E D G E M E N T S . We are grateful to the participating members

of the Young Women with Breast Cancer, Reach to Recovery,
Cansurmount and Brain Tumour support groups of the Canadian
Cancer Society for their interest and active involvement in this
research. This research was supported by studentships to KMY from
the University of Calgary Graduate Research Scholarship Fund and
the Alberta Heritage Foundation for Medical Research.

COMPETING INTERESTS: None declared. Keywords

ADDRESS. Correspondence should be directed to:
biographical work, cancer
H . J . S TA M ,
PhD, Department of Psychology, University of Calgary, narratives, grounded theory,
Calgary, Alberta, T2N 1N4, Canada. [email: stam@ucalgary.ca] support groups
720

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

 YASKOWICH & STAM: CANCER SUPPORT GROUPS
Introduction
T H E C O N C E P T I O N of telling one’s story as an
ill person and its moral import has had consider-
able commerce in contemporary analyses of
health in the social sciences. (e.g. Frank, 1995;
Murray, 1997, 2000; Radley, 1999; Toombs,
1992). In previous articles we have argued that
the schism in research with the chronically ill
between narrative and life or between that
which is lived and that which is narrated, implies
a certain duality between the illness and its
telling (e.g. Mathieson & Stam, 1995). This
inevitable schism between the narration of an
illness and the sense that one is not the author
of the life that is narrated, serves to motivate a
continuing revision of that narrative (Stam &
Egger, 1997). As Ricoeur has noted, although
we may become the narrator of our own story
we are not the author of our own life (Ricoeur,
1991).
Narratives become narratives only insofar as
they emerge out of the telling as our stories.
Conversations about illness begin as partial,
joint activities that, given receptive circum-
stances, cohere into narratives of an illness. As
part of a quest for personal identity that is nego-
tiated in the hurly-burly of treatment and its
aftermath, conversations become narratives as
they fuse with the sense of who the ill person is,
who they wish to become and who they still can
be. In the context of a chronic, life-threatening
illness telling one’s story then takes on a
renewed sense of urgency. Not only treatment,
but also the difficult changes in the body, the
disrupted lives and changing relationships
require a need to renegotiate an illness. This
renegotiation is of pressing concern to the
cancer patient, not simply because of the need
to make sense of the illness but because these
are narratives of what still matters most.1
Following a series of interviews with cancer
patients, Mathieson and Stam (1995) conceptu-
alized cancer narratives as the integration of at
least three major concerns and activities:
disrupted feelings of fit, renegotiating identity
and biographical work. Disrupted feelings of fit
refer to those bodily changes and other events in
the patient’s life that signal threats to identity.
As the illness and treatment progress, former
understandings are no longer relevant and the
patient begins to re-evaluate her horizon or
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
foundation of self-understanding. The realiza-
tion that there is a stigma associated with cancer
and that the discourse of medicine provides only
a partial resource for re-evaluating and living
life is an important element for the renegotia-
tion of identity. Finally, although biographical
work is characteristic of the negotiation of any
stable sense of identity, the cancer patient must
ultimately decide how the events of illness make
up a more or less coherent theme among the
other events of her life. This acknowledges
simultaneously that the older narrative has
altered and that the revised narrative incorpor-
ates the experience of illness (see also Bury,
1982; Corbin & Strauss, 1987; Yoshida, 1993).
For many chronic illnesses, there is a stigma
or moral opprobrium associated not only with
being ill but also for ‘giving in’ to a major
chronic illness (e.g. Blaxter, 1993; Toombs,
1992). Having argued for the importance of the
narrative renegotiation of identity, we did not
address one major issue that arose out of our
earlier study, namely patients’ capacity as well
as opportunity for narrative renegotiation.
Participants in our study (as well as other
studies) have noted that the stigma associated
with cancer is still considerable; as one patient
said, she felt as if she had ‘leprosy’ and was no
longer ‘part of the human race’ (Mathieson &
Stam, 1995, p. 297). Related to this is the notion
that along with their reduced sense of value as
citizens, the chronically ill find they need to
rediscover their capacity to articulate their
concerns as they are now lived, they need to
recover a ‘voice’.
One way in which cancer patients come to
express their dilemmas and narrate their stories
is in the context of self-help groups. Such groups
are numerous and constitute an opportunity for
patients to speak of their illness as well as listen
to others without having to protect family
members and to do so outside the context of the
medical knowledge and the medical system.
Recent figures indicate that user rates of self-
help groups are at approximately 3 per cent to 4
per cent of the population over a one-year
period in the USA and that the major reason for
participating in such a group is the experience of
a physical illness (Kessler, Mickelson, & Zhao,
1997; Lieberman & Snowden, 1993). In a recent
major study of illness support groups, Davison,
Pennebaker and Dickerson (2000) found that
721
JOURNAL OF HEALTH PSYCHOLOGY 8(6)
not all illnesses are equally represented in
support groups: after alcoholism (which is by far
the most prevalent group) there were striking
differences in the participation rates by illnesses.
In particular, cancer groups are much more
prevalent than support groups for cardio-
vascular diseases. When these authors
combined their investigation of Internet groups
with the prevalence rates of self-help groups
they found that cancer patients exhibit the
highest overall tendency to seek and offer
support. In contrast, some illnesses were
remarkable for the very low levels of self-help
groups and support that they have spawned,
including chronic pain, emphysema and cardio-
vascular disease (Davison et al., 2000).
One account for such differences is that there
is a strong relationship between indices of ‘social
marginalization (embarrassment, disfigurement,
stigma, and life threat) and support-group
participation levels’ (Davison et al., 2000,
p. 215). Moreover self-help groups for illnesses
exist in proportion to the severity of the illness
and the cost of treatment. On this view it is not
surprising that cancer patients as a whole have a
high rate of support group participation. This is
supported by media surveys that show that
cancer is associated with suffering and death
whereas cardiovascular disease is portrayed in
relatively less pessimistic terms (e.g. Clarke,
1992). Despite noting this relationship between
marginalization and support group partici-
pation, Davison et al. (2000) attempted to place
their findings in the context of typical psycho-
logical theories, including those that focus on
the ‘personality characteristics’ of those
purported to have particular kinds of illnesses
(e.g. the Type A personality leads to cardio-
vascular disease, is hostile, and therefore does
not participate in support groups). Not only is
such a conclusion unwarranted by the literature
on personality and illness (where only the
weakest of relationships exist, see Stam &
Steggles, 1987, for cancer and personality), but
also it overlooks the more obvious relationship
to marginalization that the authors themselves
note. As we have argued in earlier articles
(Mathieson & Stam, 1991; Stam, 2000), the indi-
vidualistic adjustment and adaptation model of
illness of the majority of psychological studies
are simply inappropriate for understanding the
moral dilemmas and narrative reconstruction of
722
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
identity that become the major psychological
task of the cancer patient.
Other research on cancer support groups has
generally focused on the motivations for indi-
viduals to join such groups with the psycho-
logical literature heavily dependent on some
conception of ‘social support’ (e.g. Cope, 1995;
Gottlieb, 1992; McLean, 1995). It is generally
accepted that support groups provide hope, a
decreased sense of isolation and improved
possibilities for the free expression of emotions
(e.g. Lavoie & Stewart, 1995; Silverman-
Dresner, 1989), and that there are few negative
effects to belonging to such groups (e.g. Wein-
berg, Schmale, Uken, & Wessel, 1996). None of
these studies however have addressed the ques-
tion of what support groups actually provide
that other supportive relationships do not
provide. Why, for example, do patients who
attest to receiving significant amounts of social
support from their families and friends choose
to attend support groups? How do peer support
groups facilitate (or in some way alter) the
process of identity re-evaluation? Or are
support groups more important as a means to
challenge medical dominance (e.g. Hardey,
1999)?
In this article we address the question of the
construction and revision of illness narratives in
the context of support groups. Using semi-
structured interviews with a heterogeneous
group of persons with cancer who were involved
in a support group for their illness, we attempted
to extend our earlier work on the narrative
construction of identity in cancer. Following
Mathieson and Stam (1995), we used a modified
grounded theory approach to characterize the
identity predicaments of cancer patients and the
formation, resolution and reconstruction of
these predicaments within support groups.
Methodology
Theoretical sampling
Grounded theory methodology (e.g. Glaser &
Strauss, 1967) using narrative accounts of cancer
patients’ illness experiences formed a frame-
work for the purposes of obtaining and
analysing the interviews. This approach was
used because, on the one hand, we could not
identify in advance the issues that bring cancer
patients to peer support groups, while on the
 YASKOWICH & STAM: CANCER SUPPORT GROUPS
other hand, our previous work in medical
settings and our understanding of the lives of
cancer patients also meant that we were aware
of the range of issues patients might confront.
The primary objective was the continuing gener-
ation of theory even though there is some
disagreement on just what kind of theory-gener-
ation method grounded theory purports to be
(e.g. Corbin, 1998; Rennie, 1998). Our use of the
method here is consistent with our previous
work and is more appropriately considered a
hermeneutic enterprise than a strictly inductive
one. That is, while grounded theory is, especially
by its originators, treated as an inductive tech-
nique we consider it hermeneutic in so far as it
seeks to ‘discover’ the partial, incomplete mean-
ings inherent in the narratives of our partici-
pants. Much of the debate about versions of
grounded theory is formulated on the question
of interpretation of ‘data’ where the latter can
never be understood as separate from the
positioning of the one who collects such ‘data’.
In this sense ‘grounded theory’ is a way of
proceeding that allows one to articulate steps or
‘methods’ without the possibility of essentializ-
ing the resulting interpretations (for a related
discussion see Costain Schou & Hewison, 1998).
The final sample of 23 participants developed
in response to the emerging theory is described
further below. The resulting sample reflects the
estimation that no significant amount of infor-
mation would have been added to the study with
the addition of increasing numbers of partici-
pants. This approach is consistent with other
studies including Corbin and Strauss (1987) and
Mathieson and Stam (1995) who note that one
purpose of grounded theory research is to trans-
late individuals’ stories into shared accounts
without losing the integrity of each individual
account.
Four support groups run by the Canadian
Cancer Society were contacted for participation.
These were the Young Women with Breast
Cancer (YWBC), Brain Tumour Support Group
(BTSG), Reach to Recovery (RR) and Cansur-
mount (CNS). The YWBC is a breast cancer
support group that is exclusively for women who
are 45 years of age or younger; the BTSG is a
support group for patients with brain tumours
only; RR is for women with breast cancer who
are over 45 years of age and is more likely to
include women who have had recurrences than
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
the YWBC; CNS is for individuals with any
diagnosis (our participants included patients
with thyroid, brain, multiple myeloma, breast,
prostate and ovarian cancers) and for any stage
of the illness. All support groups meet on a
monthly basis and the leaders are simply group
members (who themselves have or had a cancer
diagnosis) who have volunteered to facilitate
meetings. They are leaders that naturally
emerge out of their respective groups rather
than trained leaders.2
The first author attended a monthly meeting
of each group and gave a presentation explain-
ing the purposes and procedures of this study.
Anyone interested was invited to leave a phone
number and they were then contacted to set up
individual interviews at their convenience and at
the location of their choice (home or university).
Theoretical sampling procedures were used
for obtaining interviews. These were conducted
over a 10-month period in 1997 and 1998. As the
study proceeded participants were selected
according to criteria based on the analysis of the
interviews being conducted and on the emerging
research questions. Consequently, participants
were included based on their contribution to the
development of the emerging theory and a
broad range of issues was explored with a
diverse group of cancer patients. The interview
process was controlled by the emerging theory.
The resultant interview group consisted of 23
participants.
The demographic characteristics of the
sample of patients in this study are hetero-
geneous with respect to age, gender, cancer site,
treatment type and time elapsed since diagnosis.
All participants were Caucasian. Table 1
provides a detailed description of the sample
characteristics. Nineteen group members and
four group leaders from the weekly peer support
groups noted above participated. The partici-
pants were men (n = 2) and women (n = 21) with
varied sites and severities of diagnoses including
bone (n = 2), brain (n = 3), breast (n = 19), liver
(n = 1), ovarian (n = 2), thyroid (n = 2), skin (n
= 2) and multiple myeloma (n = 1) cancers
(these numbers do not add up to 23 because they
include sites of metastatic disease). Participants
had been diagnosed with cancer between four
months and 24 years prior to the study and indi-
viduals with recurrences were included. Partici-
pants had diverse treatment experiences
723
JOURNAL OF HEALTH PSYCHOLOGY 8(6)

including surgery (n = 23), chemotherapy (n =
16), radiation (n = 11) and stem-cell transplant
(n = 2). Participants ranged in age from 28 to 72
years with a mean age of 48 years.
Obviously women make up the majority of
our interviewees just as they make up the vast
majority of membership in cancer support
groups. This is an indication of how men and
women differ in how they carry out their
biographical work but we do not know if this is
a generational phenomenon (given the average
age of our participants) or if this may also be
true of younger cancer patients.3 In addition, we
recognize the dominance of breast cancer as a
diagnosis among our participants. This is of
course determined in part by the prevalence of
breast cancer support groups relative to other
diagnoses and the recognition that breast cancer
has become politicized in recent years, again
relative to other cancer diagnoses.
Group meetings are largely informal. Group
leaders facilitate discussions but there is no set
format to these; members can direct topics and
issues, and sometimes a guest speaker will be
invited to speak. In general however the format
provides members an opportunity to discuss
their experiences, difficulties in coping, give
advice and suggestions, provide emotional
support and so on.4 Due to their informal
nature, those wishing to take on leadership roles
have an opportunity to take on such positions
regardless of their background or education.
Interview schedule
Participants were interviewed in their homes
(the average interview lasted two hours). All
interviews were audio taped and later tran-
scribed in their entirety. Participants were inter-
viewed using a semi-structured protocol that
enabled divergence from the confines of specific

Table 1. Participant characteristics (N = 23)

N %
Sex of participant
Male 2 8.7
Female 21 91.3
Age of participant (Mean = 48 years; Range = 28–71 years)
25–30 years 1 4.3
31–35 2 8.7
36–40 4 17.4
41–45 4 17.4
46–50 1 4.3
51–55 4 17.4
56–70 5 21.7
71–75 2 8.7
Primary cancer site
Breast 17 73.9
Brain 3 13.0
Thyroid 1 4.3
Multiple myeloma 1 4.3
Ovarian 1 4.3
Months since initial diagnosis (Mean = 50.6; Median = 24.0; Range = 4–288)
< 6 months 2 8.7
7–12 4 17.4
13–24 5 21.7
25–48 4 17.4
49–72 3 13.0
> 73 5 21.7
Treatment history
Surgery 19 82.6
Chemotherapy 15 65.2
Radiation 8 34.8
Stemcell transplant 2 8.7

724

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

 YASKOWICH & STAM: CANCER SUPPORT GROUPS

questions to capture individual experiences. opportunity was provided for participants to

Thematically structured in-depth interviews
were performed and covered the following
topics: a biographical account of diagnosis and
treatment experiences, living with cancer and
recurrences, life changes as a result of cancer
and difficulties experienced in dealing with
cancer. See Fig. 1 for specific interview ques-
tions. The questions focused on how patients
dealt with the difficulties they experienced in
relation to their social context. The unique role
of peer support groups was explored to deter-
mine the services these groups provide for
patients that may be absent in other areas of
support available to them. Furthermore, an
express concerns about these groups.
The interviewing of patients continued until
sufficient interviews were obtained to ensure
that all theoretical categories were saturated
and the inclusion of further interviews did not
produce the emergence of unique thematic
categories.
Analyses
The constant comparative method of analysis
was used to generate theory systematically and
to ensure that it is integrated, consistent and
closely rooted in the interviews. Interview
phrases that represented similar themes and

1. Tell me about the way you first learned of your diagnosis.

—What did you do when you learned of the news?
—How did you tell others? How did they react?
—What type (site) of cancer do you have?
—When were you diagnosed with cancer?
—What cancer treatments have you had?
—Any metastases? Recurrences?
2. How has the experience of living with cancer been for you?
3. How has the experience affected your life?
—Your relationships?
—Employment? (Still working?)
—Your beliefs? Your values? Your goals?
—Your self-identity?
4. What is important in your life now?
—Is this different from before you had cancer?
5. What are some of the things that have helped you deal with this experience?
6. Has there ever been a time during your cancer experience when you felt that you couldn’t cope?
—Tell me about it.
—Did you get back on track (i.e. coping)? How?
—What were some of the obstacles you encountered in coping?
7. Have you ever sought help coping through mental health professionals? (Psychologists, psychiatrists, etc.)
—How was that experience?
8. How/why did you become a member of a peer support group?
—How has involvement in the peer support group influenced your experience of coping with cancer?
9. What aspect of the coping experience was enabled through participation in peer support groups that was
missing from other areas of possible support?
—Your family? The medical system?
10. Do you have any suggestions for the medical or mental health system that might be useful for professionals
in helping cancer patients deal with their experience of cancer?
Additional semi-structured interview questions for support group leaders
1. How/why did you become a support group leader?
2. How do you view your role as a facilitator of the coping process?
3. How did the peer support groups for cancer patients get started in Calgary?
—Why did the Canadian Cancer Society get involved instead of the medical community?
4. What is the relationship between the cancer support groups and the medical community?
—How do cancer patients learn about peer support groups?
—Where do referrals to the support groups come from?
Figure 1. Semi-structured interview questions: support group members and leaders.

725

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

JOURNAL OF HEALTH PSYCHOLOGY 8(6)

properties were grouped together. Themes and These preliminary categories represent the prin-
properties refers to the subject matter under cipal themes that emerged from the interviews.
discussion including its relationship to that They underlie the overarching theory that is
participant’s overall narrative. A list of informa- represented by two transformed categories,
tional categories was generated by hand reduc- ‘biographical work’ and ‘a unique and separate
ing the many themes and properties to unique culture’, which will be discussed after our
categories. That is, the informational categories presentation of the preliminary categories (see
captured all of the unique issues that had been Table 2).
addressed in the conversations. As each incident
was coded into an informational category, it was
compared with previous incidents and proper- Preliminary categories
ties in several categories to ensure an appropri-
Talking safely
ate fit. This comparison revealed the theoretical
Discussions that take place between cancer
properties of each category and defined its
patients in the support groups are significantly
dimensions, that is, it revealed underlying inter-
different from those in other relationships in
pretive similarities and their boundaries.
patients’ lives. One issue that patients reported
Constant comparative analyses continued until
repeatedly throughout the interviews was that
theoretical saturation was reached. As such,
they do not always feel safe to share their most
data analysis continued until the inclusion of
painful emotions and fears with the people
additional interview protocols revealed no
closest to them, or with medical professionals.
unique categories, properties or relationships
This made dealing with their experience more
between them (see Mathieson & Stam, 1995).
onerous and isolating and as a result, they indi-
Through discussions about interview phrases,
cated that they felt it important to talk about
themes and properties, the authors came to a
these issues with other cancer patients. Edith, a
working consensus on the preliminary and
41 year-old woman with breast cancer said:
transformed categories that resulted from the
analysis presented here. Further categorization when you really stop to think of it all, it’s very
of the interview material resulted in a three-tier overwhelming . . . and I guess that’s why the
categorization scheme that described the data. support group is so good, because every-
First, 85 informational categories were outlined. body’s in the same boat, so we’re able to talk
Second, five preliminary categories which repre- about the overwhelming feelings and the fears
sent integrated themes that emerged from the and death, and you just can’t tell everybody
informational categories were developed, and those things.
finally preliminary categories were then assem-
Judith, a 69 year-old with primary breast cancer
bled into two broader categories referred to as
and metastases to the skin and ovaries said, ‘it’s
transformed categories. With the generation of
very easy, much easier to talk to a stranger
this theoretical classification scheme, construc-
sometimes than it is to, you know, your own
tion of a parsimonious account of the issues
family’.
uniting the diverse concepts became necessary.
Support group members indicated that they
An overarching theory was generated from the
feel a sense of safety with respect to the topics
transformed categories and consequently was
of conversation that are open for discussion
grounded in the interviews. This process of
among one another in the support groups, topics
grounded theory analysis resulted in a delimited
which are off limits in other relationships. These
theory that was an extension of the work
groups provide a safe haven for the expression
reported in Mathieson and Stam (1995).
of their full range of emotions and patients can
The five preliminary categories that describe
talk about cancer as a natural part of everyday
the roles of peer support groups derived from
life.5 In reference to the support group, John, a
our categorization of the interview accounts are:
72 year-old man with thyroid cancer said:
(a) talking safely; (b) demystifying the
unknown; (c) deciding; (d) hoping; and (e) I can go there and meet other people who
finding a separate space. We will describe each have the same problem and we can talk about
of these five categories in greater detail below. it. Nobody’s going to get in a tizzy over it. The
726

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

 YASKOWICH & STAM: CANCER SUPPORT GROUPS
Table 2. Grounded theory progression for categories
Stage 1 Stage 2 Stage 3
Information categories Preliminary categories Transformed categories
*samples (Delimited theory)
Reaction to diagnosis Talking safely A unique and separate social space
Dealing with illness
Interaction with other cancer
patients
Getting information Demystifying the unknown Biographical work
Treatment decisions
Dealing with treatment
Changes in priorities Deciding A unique and separate social space
Changes in daily activities Biographical work
Treatment decisions
Inspiring people Hoping Biographical work
Interaction with the medical
system
Interaction with other cancer
patients
Reaction of significant others to Finding a separate space A unique and separate social space
diagnosis
Dealing with the possibility of Biographical Work
death
Recurrence issues
* Samples of the 85 informational categories.

big difference is in [my support group] I meet
people who’ve got cancer or who’ve had
cancer and we can talk about it in a totally
relaxed way . . . completely relaxed, as if
you’re talking about the bad cold you had last
week . . . and it’s comforting.
Demystifying the unknown
Due to the tremendous uncertainty involved,
patients described the most difficult and over-
whelming phase for them as that which immedi-
ately follows the diagnosis. Patients talked
about the critical importance of knowing what
to expect over the course of their treatments
because it made them feel more equipped to
deal with whatever they might encounter.
Practical and first-hand information from other
patients provides reassurance that alleviates the
fears that medical information alone does not.
Rose, a 71 year-old woman who was diagnosed
with thyroid cancer that had metastasized to the
blood and bone marrow described what helped
her deal with the treatments, ‘if I was feeling . . .
a stressful situation, whatever it was, if I was
worried about the radiation or whatever, others
could kind of suggest how they handled it or
how it went for them . . . it was reassuring’. Edith
(41, breast cancer) described how talking with
other support group members about their treat-
ment experiences was helpful in preparing for
her own treatment:
You know what’s coming, what to expect, and
so . . . they can kind of prepare you or let you
know more what’s going to happen so it kind
of prepared you a bit more, and it kind of
alleviates some fears too.
Patients frequently commented on the diffi-
culties they had in dealing with the unknowns
more so than the illness itself. However, it was
not the medical information that provided them
with reassurance, but it was through talking with
other patients who had experienced the illness
and treatments that demystified the unknown
727

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

JOURNAL OF HEALTH PSYCHOLOGY 8(6)
and provided them with reassurance. Lisa, a 35
year-old woman with late-stage metastatic
breast cancer who underwent a stem-cell trans-
plant aptly described her experience:
I couldn’t really figure it out, you know, how
bad it could get. I had no idea and I think the
scary thing is the uncertainties . . . but they
[support group members] all sort of said it was
manageable . . . How much can a person
manage, I didn’t know, but maybe that was
sort of comforting.
Once the unknown is demystified, patients feel
a renewed sense of efficacy in their lives.
Although demystifying the unknown requires
accurate medical information about the treat-
ment and disease course, more important is the
reassurance provided by other patients who
have been through the treatments and who have
lived with the illness.
Support groups provide a rich source of infor-
mation for cancer patients. Elsie is a 45 year-old
woman who has lived with breast cancer and a
number of recurrences for over a decade and is
a support group leader. She reported to us how
she had described the experience to her fellow
support group members:
It’s very tough at the beginning but once you
realize it’s not going to go away, then it kind
of takes its place in your life . . . I quite often
compare it to a box of Christmas ornaments
that’s dumped all over the dining room table,
and it’s there, and you see it, and it’s a mess
. . . but eventually you straighten it up, and
then you put it back in the box, and then you
put the box back on the shelf. The box is never
going to go away, and sometimes it’s going to
be dumped out all over the dining room table
again, but most of the time it’s going to be on
the shelf. You know it’s there, you have to
look at it, but it’s not always going to be all
over everything . . . eventually you just put it
away . . . it’s taken its place in our lives.
Deciding
Patients talk about the initial period immedi-
ately following their diagnosis as the most
overwhelming time not only because of
the uncertainties involved, but also because
there are many decisions to be made yet few
choices available. Lisa, the 35 year-old woman
728
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
with metastatic breast cancer described her feel-
ings:
That’s hard for patients, when you’re thrown
into that role as a patient . . . it gives you this
sense that you’re totally out of control. Some-
body else is sort of controlling things now and
you just sort of have to go along . . . that’s
hard. I think it’s good if somehow people can
feel like they have some control, some
choices, some decisions.
Patients’ lives have suddenly taken a chaotic
turn, their worlds are disrupted and they begin
to question their sense of self and how the
cancer experience fits into their evolving life
story. Lisa, the same young woman cited above,
aptly described this experience:
I think cancer is different from a lot of other
diseases . . . you have to address all aspects of
your life . . . I have to rework my life or at least
try to do it and look at you know, everything.
Patients search for ways to return stability to
their lives. They look for answers to the ques-
tion, ‘How does cancer fit into my life?’. Peer
support groups provide patients with an oppor-
tunity to discuss some of the ways others have
been able to manage to live with cancer. For
example, Edith said:
What was suggested in the support group is to
take control, like you know . . . you just don’t
know if there’s going to be a tomorrow . . . so
you go with the options and choose what’s
right for you . . . If you don’t like your oncol-
ogist, then get rid of him.
As a result, support groups provide a forum
where patients can explore new ideas, make
choices and negotiate their biographies in a way
that allows them to integrate the cancer ex-
perience into the context of the rest of their
lives.
As a result of their encounter with the possi-
bility of death, many patients report an urgency
to redirect their lives in more meaningful ways.
Peer support groups enable and encourage
patients to make difficult choices about chang-
ing aspects of their lives that impede their ability
to deal with their cancer experience. Mary, a 45
year-old woman with breast cancer described
some of the choices she made, attributing it to
her participation in the group:
 YASKOWICH & STAM: CANCER SUPPORT GROUPS

I left my job and decided to freelance . . . we
[the patient’s family] went from being fairly
secure to being fairly insecure. When you’re
diagnosed with cancer, I guess you discover
that there is no really true security . . . that
maybe it’s a bit of a falsehood. The only
security you have is within yourself and your
perception of what you can do.
Hoping
Cancer patients seek hope. There are two main
components associated with the concept of hope
to which cancer patients refer. First, the hope of
survival and second, the assurance that they will
be able to manage the treatments and all of the
effects the illness will have on their lives. Thus,
many cancer patients look for role models of
hope; people who have been able to deal with
the treatments and those who have survived the
odds. This evidence of hope cannot be found
anywhere except through the experiences of
other cancer patients. Edith described what kept
her hopeful:
Just talking to people right away when I was
diagnosed, just talking to people that have
gone through it, right away was such a relief
. . . you know, your fears are, you think you’re
going to die . . . and just talking to those
survivors and what they’ve done and how
they’re living today is what’s getting me
through.
Ability to construct meaning for the illness in
the context of the rest of their lives also
provided some patients with a profound sense of
hope. This reassured them that their experience
has a purpose in their life’s biographical unfold-
ing. Edith described the search for meaning:
You try to understand why . . . maybe every-
thing happens for a reason . . . if you kind of
look at it that way you can maybe find some
answers . . . you just kind of think about it all
the time, looking for answers.
Connie, a 53 year-old woman with breast cancer
that had metastasized to the bone described the
meaning she found in her cancer experience, ‘it
has given me the opportunity to refocus and to
really understand where my priorities are and to
make a concerted effort to work on those
priorities . . . and to make life meaningful’.
Peer support groups challenge the association
between a diagnosis of cancer and death
because survivors are evidence that death is not
inevitable. Although this did not directly
emerge out of a support group, one patient,
Emma, a 53 year-old breast cancer patient,
talked about the enormous impact it had on her
sense of hope when she met another woman
who had survived breast cancer:
I went in to check into the . . . hospital in the
morning and the lady who was waiting in front
of me, she said, ‘what are you in for?’ and I
said ‘breast cancer’. . . . She said, ‘just to let
you know, I was diagnosed twenty-two years
ago with it’ . . . so that does offer support . . .
I thought, like, that’s all I needed.
Finding a separate space
Peer support groups for cancer patients can be
viewed as a ‘separate space’. Many of our cancer
patients report an altered awareness of life, an
awareness that is coloured by the possibility of
death. Elsie, the 45 year-old woman with recur-
rent breast cancer described this experience in
the following way:
There’s a change that comes about, just in
terms of the way you think about yourself and
the way you think about your own life. You
can never again say I’m perfectly healthy,
because you don’t know . . . it’s never really
over . . . it’s always there.
Cancer is the norm within support groups. It is
a place where cancer carries no obvious stigma
and is not looked upon with the same alarm,
which allows patients to explore concerns about
cancer as well as issues other than the basic
problem of cancer itself. Edith described her
reason for going to the peer support group as, ‘a
group so that you can face your own fears, and
share ideas and thoughts, and get really down to
the emotional aspect of this whole journey’.
Cancer creates a sense of isolation for many
patients. The threat of death resulting from
cancer is an ominous fear that separates patients
from the rest of their world in pivotal ways. The
71 year-old woman with metastatic thyroid
cancer described her friends’ reactions to her
diagnosis:
Your friends . . . they don’t know what to say
. . . some people that I thought were really,
really close friends, I found out that they
729

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

JOURNAL OF HEALTH PSYCHOLOGY 8(6)
weren’t such close friends because they didn’t
know how to deal with it . . . they’re just terri-
fied of it.
Support groups provided relief from this
isolation. Patients also describe a loss of inno-
cence resulting from the imminent possibilities
of recurrence and reduced life span. Susan, a 43
year-old woman described her experience with
a brain tumour diagnosis that had metastasized
to the spine, ‘all of a sudden you’re looking at a
very shortened life span . . . you’re 10 per cent in
five years, that’s basically your survival rate,
maybe—if you’re lucky’. This awareness of life’s
fragility alters cancer patients’ perspectives in
ways that some feel only other patients under-
stand. As Edith indicated, she found it import-
ant to belong to ‘a group so that you can face
your own fears, and share ideas and thoughts,
and get really down to the emotional aspect of
this whole journey of breast cancer’.
Cancer is an experience that calls into ques-
tion who a person is and how they want to live
the rest of their lives. Patients are compelled to
re-evaluate their identity and establish how
cancer fits into their life story. This is a chal-
lenging task for individuals whose lives are so
disrupted, yet must live in a social world that
remains unchanged by their experience.
Patients talk about the importance of the
process of ‘re-working’ their lives in the context
of the group. Elsie, the 45 year-old woman with
recurrent breast cancer said, ‘through the stories
of other people, I’m able to put my own experi-
ence in a greater context . . . I just see it [the
support group] as a way to put my own experi-
ence in a context’. This process has been concep-
tualized in terms of ‘biographical work’ (e.g.
Bury, 1982; Corbin & Strauss, 1987; Corradi,
1991; Mathieson & Stam, 1995). Biographical
work refers to cancer patients’ process of re-
evaluating their life stories as a result of their
altered position in the world created by cancer.
It is a way of integrating the lived experience of
cancer into their new understanding of self in a
manner that is meaningful and congruous to
them.
The ‘separate space’ provided by peer
support groups enables patients to explore their
lived experience of cancer in ways that are
congruent with that experience. This is a process
that is not typically fostered in other arenas of
730
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
cancer patients’ lives. Furthermore, it is quite
different from what mental health and health
care providers offer to patients. Consequently,
peer support groups facilitate an activity which
is central to dealing with cancer, that of
biographical re-evaluation. It is through the
uninhibited exploration of their own and others’
cancer experiences that patients are able to
come to an understanding of ‘what to do’ in the
face of their overwhelming diagnoses.
Limitations of peer support
groups
Despite the many benefits cancer patients
report due to their participation in peer support
groups, there are also tensions and difficulties
associated with these groups. Within any peer
support group, members have malignancies of
various stages and severities. As a result, group
members cannot always fully appreciate one
another’s experiences. Furthermore, some
patients would rather not be exposed to others’
experiences as they represent some of the diffi-
cult realities that the individual may have to face
herself in the future.
Group leaders as well as other group
members did in fact comment on what they
viewed as problematic in these groups. Elsie,
who is also a group leader, noted the difficulties
that arise in the groups as a result of the diverse
stages patients are at along an illness trajectory:
One of the biggest things we’ve had to deal
with in the group is the fact that sometimes we
have women at various stages. Sometimes we
have women who are very newly diagnosed
and sometimes we have women who have
recurrences, and the two often times can’t
deal with one another because the women
who are pretty newly diagnosed are not to a
point yet where they can think about the fact
that they may one day recur . . . and the
women with recurrence need to talk about
that . . . they can’t really relate to these
women who are newly diagnosed and who
think that they’re going to do all the right
things and be cured and they’ll never have to
think about it again.
Hence, even within the support groups there are
differences in the way individual situations
influence patients’ abilities to integrate and
participate.
 YASKOWICH & STAM: CANCER SUPPORT GROUPS
Although newly diagnosed patients are often
searching for hope and reassurance, some report
that their initial contact with the support groups
actually thwarted their sense of hope. Cindy, a
37 year-old woman with breast cancer indicated:
I remember the first time I went, there were
three of us that were brand new and I was just
still kind of, my head just swimming over the
whole thing . . . there was another lady there,
her story was just horrendous . . . after the
three of us had said our thing, I mean, the
whole atmosphere was just . . . and then the
other ones were telling their story and they
were just . . . more focused on the negative.
After I left I thought, God, there was nothing
positive that I got out of this meeting, and I so
needed it . . . I remember my second meeting
there. The meeting started off with telling us
who just died . . . I thought, God, this is so
morbid.
Donna, a 38 year-old woman who had meta-
static breast cancer, described the compromise
required by support group membership, ‘it’s
very inspirational to see these women that had
been there three, four years . . . [but] I know
there was one lady there that had recurrences
for the last four years and that’s hard to hear’.
The other price patients pay for being a part of
a cancer support group is that it challenges them
to face the reality of death head on. Rose, a 71
year-old woman who had multiple metastases of
her thyroid cancer said, ‘there was seven of us
. . . and I’m the only one that’s alive out of that
group. They’re all gone . . . and they were all
younger than I was . . . it was heartbreaking . . .
I found that very difficult.’ The supportive
networks which they establish in these groups
are destined to be disrupted by the very reality
which they all fear, that of death.
Another difficulty facing group members is
that patients are provided with the opportunity
to compare their own prognosis with that of
others’, which sometimes results in further
isolation. Donna, the 38 year-old woman with
metastatic breast cancer, described what it was
like to realize that her diagnosis was more
serious than any of the other group members’,
‘everybody else was talking about their lumps
and this and that . . . nobody else here has it in
the bone, like where is everybody? I felt then, I
think, the severity really hit’. On the other hand,
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
for group members with similar diagnoses, there
is another problem, that of survivor guilt. The 71
year-old woman with metastatic thyroid cancer
said:
They look at me and they say, ‘well look at
her, look how well she is, she’s walking
around and I’m laying here dying’ . . . and you
almost feel guilty going to see these people
that are so very, very ill and you’re doing
alright.
Patients who have been in peer support groups
for several years commented on the frustrations
they encounter when trying to keep these volun-
tary organizations operating. As John, a 72 year-
old man with thyroid cancer indicated:
The problem is, there are not too many volun-
teers . . . I see people coming and going,
particularly the young, it’s somewhat
disappointing . . . one particular girl . . . we got
her over this hump . . . and then as soon as she
was back to normal, she never came again . . .
[they] get a helping hand, once they’re back
on their feet, they disappear . . . it’s the diffi-
culty with a volunteer organization that way,
to keep it on its feet.
The intended reciprocity of contribution in
these groups is not always achieved and some
long-standing group members continue to
provide the bulk of the support.
Despite the difficulties that sometimes arise in
peer support groups, members who continue to
attend are willing to endure the problems associ-
ated with group membership. It is apparent by
the large group memberships and the continued
participation by members that for some, the
benefits far outweigh the costs. However, not all
cancer patients are willing to pay the price.
Patients who are members of peer support
groups remain a minority of cancer patients.
Transformed categories
Based on our interviews, two transformed
categories best describe the lived experience of
cancer patients: ‘a unique and separate social
space’ and ‘biographical work’. The preliminary
categories can be reconceptualized as a search
for a unique but separate culture and the need
for an evaluation of patients’ biographies. This
reconceptualization is a condensation of the
731
JOURNAL OF HEALTH PSYCHOLOGY 8(6)
multiple preliminary categories and an attempt
to delimit the theoretical considerations.
Consequently, these two transformed cat-
egories emerged for us as underlying theoretical
frames from what was described by the five
preliminary categories and will be discussed in
detail here.
A unique and separate social
space
‘Support fatigue’ and the ‘remission society’
The various transitions in perspectives and
priorities which patients adopt as a result of
their lived experience of cancer represent chal-
lenges for them when they attempt to live in the
unchanged social world around them. With the
many changes to their bodies, abilities, relation-
ships and their views of themselves and their
lives, cancer patients are uniquely situated in the
world. Cindy, a 37 year-old woman with breast
cancer described the critical importance of the
support group in dealing with this experience:
Now you’re done it [the treatment], every-
body’s sick and tired of talking about it.
You’re fixed. It’s over with . . . I don’t want to
be burdening [my husband] with it . . . we do
talk about it a little bit but you know, it’s
sometimes just good to go and talk outside of
the [home]. It’s good once in a month to kind
of, whatever thoughts you might have had or
been scared . . . it’s not necessary [to share
them with my husband] because they’re only
thoughts . . . he’s had enough to share with
and he’s got to have time to go on with our
lives.
Patients struggle to find a place in a society that
marginalizes them, as well as to find a space of
their own to deal with their lives that have been
irrevocably influenced by their experience with
cancer.
An experience which is reported by many of
our cancer patients is that they feel supported by
the medical system and the people in their lives
immediately following their diagnosis and
during their treatments, but they report feeling
abandoned when their needs persist beyond
this. Their families and friends move on with
their lives and expect that the individual with
cancer should too. Elsie, the 45 year-old group
leader with recurrent breast cancer described
this experience:
732
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
There’s almost like a support fatigue . . .
there’s a tendency for people to say or to
think, ‘okay, well it’s over . . . just put it behind
you and get on with your life’. What they
don’t understand is that it’s never really over
and at some point, at some level, it’s always
there because you live in the ‘remission
society’ . . . you never know that you are truly
well . . . there’s a change that comes about,
just in terms of the way you think about your-
self and you own life . . . you can’t forget it . . .
sometimes you need to talk about it longer,
just to put it in place in your life.
The ‘remission society’ is a phrase that was
coined by Arthur Frank (1991) that circulated in
some of our groups. It refers to the notion that
modernist medicine has made possible the
extended lives of many who have a chronic
illness and who may be well but will never be
considered ‘cured’ (Frank, 1995). Cancer
patients must live with the ongoing threat of
recurrence; as our participant says, it may be
over from an outsider’s perspective but it
continues forever from the patient’s perspective.
The notion of a remission society is apt here in
so far as it reflects the tension between modern
medicine’s having made possible recovery and
‘remission’, and the self-consciousness of what it
is to live in a society that denies the validity of
that remission. A life in remission must be
reclaimed from medical narratives, argues
Frank, in a way analogous to the way colonial
experiences are overturned by post-colonial
narratives (Frank, 1995).
Peer support groups and the need for a
separate social space Peer support groups
constitute a separate social space, a place apart
from the rest of the world in which cancer
patients are able to express fears, overwhelming
emotions, altered priorities and a renewed sense
of urgency to live fully. Patients say that support
groups provide a reprieve from the isolation
which patients experience in the rest of their
social world. The 71 year-old woman who had
a number of metastases of her thyroid
cancer described her experience in the support
group, ‘we all understood each other . . . our
families don’t understand, our husbands don’t
understand, but we all understand each other [in
the support group]’. The supportive atmosphere
 YASKOWICH & STAM: CANCER SUPPORT GROUPS
fostered in these groups enables cancer patients
to evaluate their personal identities and life
stories within the framework of their illness
experience. Elsie indicated:
I just see it [talking to group members] as a
way to put my own experience in context and
look at the ways that other people have coped
and the things that they’ve done, and how
they’ve felt, and it certainly validates my own
feelings, but it also helps to put it in context
and look at other people, and think, wow, you
know, that’s amazing.
The work of the patient:
biographical work
The lived experience of cancer Patients
talk about the experience of cancer as a life-
shattering one. Patients’ lives are thrust into
turmoil and are inextricably modified in irre-
versible ways. Although most patients eventu-
ally carry on, they speak of their lives as
proceeding in an irrevocably altered manner.
They experience a difficult transition to their old
patterns of living which is not always possible
despite attempts to get their lives ‘back to
normal’ and to ‘just carry on’. What makes this
process more difficult is that family members,
friends and the medical system place expec-
tations of ‘returning to normal’ on the cancer
patient. Edith, the 41 year-old with breast
cancer said:
People think, ‘oh good, her treatment’s over,
now we can get back to our normal lives’. Well
it’s not going to be normal like it was before,
there’s no way it can be that way. Something
happened and it’s changed my life.
Support group participants relate a sense of
isolation in their struggle to reintegrate them-
selves into a world that does not share their
concerns and values. They recognize that people
are valued for their productivity, however, theirs
is radically altered which results in a diminished
sense of belonging and worth. Susan, the 43
year-old woman with malignant brain and spinal
tumours described her experience of attempting
to return to her career as a lawyer:
when I first went back to work my attitude
was, I’ve done the tough part, it’s easier from
here on in. The reality is, it’s a new journey. It
took me about a month and a half to realize I
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
had lost a lot of confidence in myself . . . what
you don’t appreciate is when you’ve been out
of the link for nine months, you don’t just
walk back in and you’re like you were before
. . . I had everything but a function.
Moreover, tangible rewards (e.g. money, career,
prestige) were ineffective at meeting this
patient’s needs. Lisa, the 35 year-old woman
who had just completed a stem-cell transplant
for metastatic breast cancer described how the
values of contemporary society do not make
room for the chronically ill:
Our society is set up such that . . . people are
in most cases just valued if they accomplish
something, if they produce something . . .
[you] constantly have to do, to produce some-
thing and to show results . . . but when it
comes to a life and death situation, and comes
to the crunch . . . then you realize, your career,
your money, all these things, they can’t help
you . . . and you have to reassess everything.
This woman claimed that the skills that are
required to deal with the threat of death are not
taught in our society, nor are they valued. She
remarked:
I think that’s the sad thing about our society
. . . nobody has been taught to be a survivor,
really to have survival skills . . . skills to
achieve peace of mind . . . or even how to deal
with the issue of death . . . it’s not part of our
culture . . . people who have cancer . . .
suddenly, they have to deal with these things.
In the context of biographical work, patients not
only try to integrate their illness experience into
their self-understanding but they struggle with a
social world that does not seem to comprehend
them. Connie, the 53 year-old woman with
breast cancer that metastasized to the bone
described her struggle with her family and
friends:
I kept saying, you know, this takes time to
work through . . . being diagnosed with cancer
is very different . . . it’s not like having your
appendix out where it’s over and done and
you pick up where you left off and you carry
on. Well, on the outside you certainly get back
and you pick up the same routines, but it’s all
different because you’re dealing with a life-
threatening illness . . . and you have to put
733
JOURNAL OF HEALTH PSYCHOLOGY 8(6)
that experience in the context of your whole
life . . . even though you are doing the same
routines . . . you look at it very, very differ-
ently.
Patients voice a significant incongruence
between their outlook and that of their family.
As a result, the process of trying to integrate the
cancer experience into their life story is not only
a personal struggle, but it can be impeded by
their interactions within the social sphere.
Consequently, these patients expressed their
appreciation for this ‘separate space’ in which
cancer patients can explore the new direction
their lives take as a result of the experience of
cancer.
On the whole our participants were articulate
and even stoic about the need to constantly re-
evaluate their lives and to integrate their illness
into a coherent life story. Lisa put it aptly when
she explained:
I think cancer is different from a lot of other
diseases or illnesses . . . I wish I had just
broken a leg because you get to get it fixed
and that’s it. But cancer is something; you
have to address all aspects of your life. I real-
ized, okay, I have to go out of my way here to
try whatever I can to figure things out here.
And I have to rework my life or at least try to
do it and look at, you know, everything.
Conclusion: narratives and
support
Re-conceptualizing one’s
personal identity and life story
We have argued that chronic illness is inherently
experienced within a biographical context as
identity-altering. The illness trajectory con-
strains and enables the unfolding biographical
narrative and the individual’s biographical work
in turn influences the choices she makes over the
course of the illness. The ongoing struggle of the
cancer patient involves balancing the demands
of everyday life, managing the illness trajectory
and establishing congruence between her
identity and biography in the context of social
relationships. That is, identity will be forced to
change by the details of the biography, requiring
what we call biographical work. On the other
hand, a patient’s identity may place limits on the
biographical work. Because chronic illness
734
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
upsets the equilibrium between the individual’s
previous, current and future sense of self,
biographical work is required to understand the
illness in the context of one’s life story, based on
one’s current view of the self in the social world.
The narratives provided by our participants
illustrate the ever-present problem for the
cancer sufferer that the only way out of the
illness is to live it.
It is widely accepted that the process of re-
evaluating one’s life story is an essential aspect
of the lived experience of cancer (e.g. Bury,
1982; Corbin & Strauss, 1987; Mathieson &
Stam, 1995; Murray, 1997, 2000; Wiener &
Dodd, 1993). However, due to the obstacles
patients encounter in communicating with their
families and friends, this work is not always
facilitated by these relationships. Many cancer
patients express a kind of isolation from their
previously taken-for-granted social world and
search for relationships through which they can
do the necessary biographical work and which
enable them to be themselves, that is, to express
their needs throughout the illness trajectory.
Peer support groups seem to provide one such
possibility.
Cancer patients who join support groups
clearly seek them out as havens from a social
world in which they do not feel understood.
Despite their imperfections, these groups
provide patients with an opportunity to talk
about their illness with others who are similarly
stricken. With their absence of demands to
speak in polite and strictly acceptable or other-
wise carefully monitored ways, and with their
lack of a requirement to do the emotional work
patients often need to do with family members,
support groups offer an opportunity to partici-
pate in an alternative social milieu than what is
otherwise available to them as patients. In
addition, for a small number of patients, support
groups provide opportunities for leadership and
organization in the face of illness or, rather,
despite their illness. Ironically, but not surpris-
ing, one’s best biographical work is done in the
company of others who share something of
one’s fate.
For those intent on taking an active, or
perhaps even a combative stance towards their
illness, support groups are useful vehicles to
enhance self-expression, decision making and
the larger tasks of biographical work. While not
 YASKOWICH & STAM: CANCER SUPPORT GROUPS
eschewing medical talk it is clear that support
groups allow patients to treat medical talk as
one resource among many for their own talk. As
we have argued previously, medical talk
becomes part of an illness narrative to the extent
that it fits the renegotiation of identity
(Mathieson & Stam, 1995).
We are mindful that those patients who join
support groups appear to be more likely to come
from professional backgrounds and to be well
educated. This is not surprising in so far as
volunteer organizations in general draw from
these social groupings (Kessler et al., 1997).
Actively seeking support, as opposed to
passively receiving it from family and friends,
these participants appear different from most
other patients. In addition, our participants
were largely women. They tended to be over-
represented in self-help groups, the gendered
nature of which has received little attention in
the literature. We were not able to determine
whether women feel greater support than men
in the self-help context or if there were other,
more complex reasons for women’s over
representation in these groups.
In seeking that support however we have
found that these participants do more than seek
comfort; they also generate a unique narrative
that intertwines talk of self-help with medical
terms as well as more personal concerns. In
effect, the self-help context serves as a resource
for integrating these various disparate aspects of
their lives.
We heard little from our participants that
indicates that challenging medical dominance
was an important factor in their decision to join
such a group (see, for example, Hardey, 1999).
We concede that this may have been implicitly
present in some of our patients’ responses. On
the other hand, as Hardey has noted, we think
that it is more likely to be found in support
networks that are established over the Internet.
In addition, we also did not hear a great deal
about the nature of stigma. Although present, it
did not play the kind of role we expected from
the surveys of Davison et al. (2000) who argued
that one of the distinguishing features of the
prevalence of illness support groups was their
concern with illnesses more likely to be
stigmatized. Whereas this may be essentially
correct, we think that it probably does not play
a dominant role in our participants’ responses
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
because they have already made the commit-
ment to a support group. Having made that
commitment it is unlikely to remain a dominant
consideration. A study comparing cancer
support groups and support groups for those
recovering from cardiovascular disease should
be able to address such issues.
Robert Wuthnow (1994) has recently
suggested that self-help groups are at once the
vanguard of a new form of community in
response to the upheavals of daily life, while
simultaneously being insufficient to take on the
larger questions of the body politic. In the face
of the fragmentation of civic life, such as that
documented by Bellah, Madsen, Sullivan,
Swidler, & Tipton (1985), it is not unreasonable
to see in these forms of voluntary and problem-
based association a form of participation in civic
life that would otherwise be unavailable.
Although forms of association and community
based on mutual need will always be limited in
their capacity to produce ‘new communities’, as
they are time-limited, resource-limited and so
on, they are crucial to the lives of those who
participate in them, in part because they restore
a semblance of coherence to those lives.
Having cancer redefines one’s social space
and disrupts significant relationships while
requiring that one reorganize relationships in
accord with the new reality of illness. If, as
Charles Taylor (1989) has argued, who we are is
largely determined from the place from which
we speak (geographically, socially, morally),
then the redefinition of social space is hardly
trivial. Patients must both acknowledge the
disruption of older narratives and then incorpo-
rate the illness experience into the renewed
narrative. An illness narrative ‘succeeds’ only to
the degree that it addresses one’s most signifi-
cant relationships. In this conceptualization of
the life-threatening illness that cancer still is, the
support group plays a special role. It facilitates
the understanding and expression of illness
narratives by allowing patients to rehearse and
develop their unfolding accounts of illness and
survival away from the judgement of their
physicians or their families.
735
JOURNAL OF HEALTH PSYCHOLOGY 8(6)

Notes Cope, D. (1995). Functions of a breast cancer support

group as perceived by the participants: An ethno-
1. Narrative approaches do not subscribe to the
graphic study. Cancer Nursing, 18, 472–478.
cognitivist version of psychology that seeks repre-
Corbin, J. M. (1998). Alternative interpretations:
sentational and causal accounts for narrated
Valid or not? Theory and Psychology, 8, 121–128.
contents. Although space does not allow us to
Corbin, J., & Strauss, A. (1987). Accompaniments of
discuss this further, it has certain affinities as well
chronic illness: Changes in body, self, biography,
as divergences with discursive accounts of illness
and biographical time. Research in the Sociology of
(e.g. Horton-Salway, 2001).
Health Care, 6, 249–281.
2. The leadership role did not obviously influence the
Corradi, C. (1991). Text, context, and individual
content of the interviews save for providing more
meaning: Rethinking life stories in a hermeneutic
detailed information on the group process. We feel
framework. Discourse and Society, 2, 105–118.
that this is because the group leaders are self-
Costain Schou, K., & Hewison, J. (1998). Health
identified and volunteer to facilitate meetings.
psychology and discourse: Personal accounts as
Throughout this article we make it clear when a
social texts in grounded theory. Journal of Health
group leader is being quoted.
Psychology, 3, 297–311.
3. We did not look closely at the length of time
Davison, K. P., Pennebaker, J. W., & Dickerson, S. S.
members remain in groups. This varies depending
(2000). Who talks? The social psychology of illness
on what members need from groups, temporary
support groups. American Psychologist, 55,
solace, long-term friendships, opportunities for
205–217.
exploration and so on. This is also why some indi-
Frank, A. (1991). At the will of the body: Reflections on
viduals leave groups when they are no longer on
illness. Boston, MA: Houghton Mifflin Company.
active treatment (we discuss this further in the
Frank, A. W. (1995). The wounded storyteller: Body,
section on the ‘remission society’).
illness, and ethics. Chicago, IL: University of
4. Both authors have attended different group meet-
Chicago Press.
ings on various occasions. It should be noted that
Glaser, B., & Strauss, A. (1967). The discovery of
groups can sometimes be dominated by several
grounded theory. Chicago, IL: Aldine.
long-term volunteers in which case they take on
Gottlieb, B. (1992). Mutual help groups: Members’
the projects and concerns of those volunteers.
views of their benefits and of roles for professionals.
Some groups (e.g. the laryngectomy support
Prevention in Human Services, 1, 55–67.
group, which was not included in this study) are
Hardey, M. (1999). Doctor in the house: The Internet
more likely to allow for more light-hearted or
as a source of lay health and knowledge and the
humorous exchanges due to the nature of the diag-
challenge to medical expertise. Sociology of Health
nosis and subsequent rehabilitation (see Stam,
and Illness, 21, 820–835.
Koopmans, & Mathieson, 1991).
Horton-Salway, M. (2001). Narrative identities and
5. Psychotherapy could also function as a ‘safe place’
the management of personal accountability in talk
but our participants were currently not involved in
about ME: A discursive psychology approach to
any form of counselling nor did this ever come up
illness narrative. Journal of Health Psychology, 6,
in our conversations with our participants. This
247–259.
may reflect a deliberate choice among this group to
Kessler, R. C., Mickelson, K. D., & Zhao, S. (1997).
pursue peer support rather than professional
Patterns and correlates of self-help group
support.
membership in the United States. Social Policy, 27,
27–46.
Lavoie, F., & Stewart, M. (1995). Mutual-aid groups
References and support groups: The Canadian context.
Bellah, R. N., Madsen, R., Sullivan, W. M., Swidler, Canadian Journal of Community Mental Health, 14,
A., & Tipton, S. M. (1985). Habits of the heart. 5–12.
Berkeley, CA: University of California Press. Lieberman, M. A., & Snowden, L. R. (1993). Problems
Blaxter, M. (1993). Why do the victims blame them- in assessing prevalence and membership character-
selves? In A. Radley (Ed.), Worlds of illness: istics of self-help group participants. Journal of
Biographical and cultural perspectives on health and Applied Behavioral Science, 29, 166–180.
disease (pp. 124–142). London: Routledge. Mathieson, C. M., & Stam, H. J. (1991). What good is
Bury, M. (1982) Chronic illness as biographical disrup- psychotherapy when I am ill? Psychosocial
tion. Sociology of Health and Illness, 4, 167–182. problems and interventions with cancer patients. In
Clarke, J. N. (1992). Cancer, heart disease and AIDS: C. L. Cooper & M. Watson (Eds.), Cancer and Stress
What do the media tell us about these diseases? (pp. 171–196). New York: Wiley.
Health Communication, 4, 105–120. Mathieson, C. M., & Stam, H. J. (1995). Renegotiating

736

Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015

 YASKOWICH & STAM: CANCER SUPPORT GROUPS
identity: Cancer narratives. Sociology of Health and
Illness, 17, 283–306.
McLean, B. (1995). Social support, support groups,
and breast cancer: A literature review. Canadian
Journal of Community Mental Health, 14, 207–227.
Murray, M. (1997). A narrative approach to health
psychology. Journal of Health Psychology, 2, 9–20.
Murray, M. (2000). Levels of narrative analysis in
health psychology. Journal of Health Psychology, 5,
337–347.
Radley, A. (1999). The aesthetics of illness: Narrative,
horror and the sublime. Sociology of Health and
Illness, 21, 778–796.
Rennie, D. L. (1998). Grounded theory methodology:
The pressing need for a coherent logic of justifi-
cation. Theory and Psychology, 8, 101–119.
Ricoeur, P. (1991). Life in quest of narrative. In
D. Wood (Ed.), On Paul Ricoeur: Narrative and
Interpretation (pp. 5–24). London: Routledge.
Silverman-Dresner, T. (1989). Self-help groups for
women who have had breast cancer. Imagination,
Cognition, and Personality, 9, 237–243.
Stam, H. J. (2000). Theorizing health and illness: Func-
tionalism, subjectivity, and reflexivity. Journal of
Health Psychology, 5, 273–283.
Stam, H. J., & Egger, L. (1997). Narration and life: On
the possibilities of a narrative psychology. In M. Joy
(Ed.), Paul Ricoeur and narrative: Context and
contestation (pp. 69–85). Calgary: University of
Calgary Press.
Downloaded from hpq.sagepub.com at GEORGIAN COURT UNIV on May 5, 2015
Stam, H. J., Koopmans, J. P., & Mathieson, C. M.
(1991). The psychosocial impact of a laryngectomy:
A comprehensive assessment. Journal of Psycho-
social Oncology, 9(3), 37–58.
Stam, H. J., & Steggles, S. (1987). Predicting the onset
or progression of cancer from psychological charac-
teristics: Psychometric and theoretical issues.
Journal of Psychosocial Oncology, 5, 35–46.
Taylor, C. (1989). Sources of the self. Cambridge, MA:
Harvard University Press.
Toombs, S. K. (1992). The meaning of illness: A
phenomenological account of the different perspec-
tives of physician and patient. Dordrecht: Kluwer.
Weinberg, N., Schmale, J., Uken, J., & Wessel, K.
(1996). Online help: Cancer patients participate in a
computer-mediated support group. Health and
Social Work, 21, 24–29.
Wiener, C., & Dodd, M. (1993). Coping amid uncer-
tainty: An illness trajectory perspective. Scholarly
Inquiry for Nursing Practice: An International
Journal, 7, 17–31.
Wuthnow, R. (1994). Sharing the journey: Support
groups and America’s new quest for community.
New York: Free Press.
Yoshida, K. (1993). Reshaping of self: A pendular
reconstruction of self and identity among adults
with traumatic spinal cord injury. Sociology of
Health and Illness, 15, 217–245.
737