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Who Talks?

The Social Psychology of Illness Support Groups

Kathryn P. Davison, The Human Asset


James W. Pennebaker University of Texas at Austin
Sally S. Dickerson University of California, Los Angeles

More Americans try to change their health behaviors vations in insulin treatments, grieve for the loss of a breast,
through self-help than through all other forms of profes- or share fears about the possible progression of HIV to
sionally designed programs. Mutual support groups, in- AIDS. Some conditions are associated with more support
volving little or no cost to participants, have a powerful groups than others. What kinds of illness experiences
effect on mental and physical health, yet little is known prompt the formation and maintenance of support groups?
about patterns of support group participation in health What makes the support group appealing for cancer pa-
care. What kinds of illness experiences prompt patients to tients but not for cardiac patients? Why is mutual support
seek each other's company ? In an effort to observe social an intrinsic part of AIDS case management but utterly
comparison processes with real-world relevance, support lacking from hypertension treatment'?
group participation was measured for 20 disease catego-
ries in 4 metropolitan areas (New York, Chicago, Los Venues for Social Comparison
Angeles, and Dallas) and on 2 on-line Jbrums. Support Festinger's (1954) social comparison theory postulated that
seeking was highest for diseases viewed as stigmatizing social behaviors could be predicted largely on the basis of
(e.g., AIDS, alcoholism, breast and prostate cancer) and the assumption that individuals seek to have and maintain
was lowest for less embarrassing but equally devastating a sense of normalcy and accuracy about their world. In
disorders, such as heart disease. The authors discuss im- times of uncertainty, Festinger predicted that affiliative
plications for social comparison theory and its applications behaviors would increase as people sought others' opinions
in health care. about how they should be thinking or feeling.
Empirical tests of social comparison theory have
found that affiliative behaviors increase under conditions of

T he experience of illness is a profoundly social one. high anxiety. Participants awaiting a fake medical proce-
Suffering elicits intense emotions and hence the dure presumed to include an electric shock expressed a
desire to talk to others. Through interpersonal ex- strong preference for the presence of another, especially
changes, patients develop an understanding of their illness: someone facing the same procedure (Schachter, 1959).
They may talk to friends, relatives, and professionals about However, later studies about affiliative motivation raised
what their diagnosis and treatment may entail. Over the further doubts about social comparison motives (e.g.,
course of their particular illness, relationships are strained Teichman, 1973). Sarnoff and Zimbardo (1961) examined
or broken, and new ones become valuable, such as those preferences of college students who thought they were
with doctors, nurses, or physical therapists. For some, the awaiting an electric shock but also were told that they
condition itself constitutes a dangerous secret that erects a would be required to suck bottle nipples as part of the
barrier between themselves and their support network. experimental procedure. In this more embarrassing context
Thus, patients' experiences of illness both influence, and of anxiety, participants indicated a marked decrease in the
are influenced by, the social fabric that surrounds them. desire to have another present. Sarnoff and Zimbardo con-
A recent development in the social milieu of the cluded that the kind of anxiety associated with humiliation
patient is the proliferation of mutual support groups for
people coping with illness. Across the country, in hospitals,
E d i t o r ' s note. Melissa G. Warren served as action editor for this article.
churches, empty offices, and even shopping malls, small
groups of individuals assemble to cope collectively with
Kathryn P. Davison, The Human Asset, Dallas, Texas;
A u t h o r ' s note.
their unique challenges. Such populist approaches often go
James W. Pennebaker, Department of Psychology, University of Texas at
unnoticed by psychologists because of a bias toward pro- Austin: Sally S. Dickerson, Department of Psychology, University of
fessionalism on the one hand and a lack of awareness on California. Los Angeles.
the part of group participants that they are part of a larger Preparation of this article was aided by Grant MH52391 from the
movement on the other (Jakobs & Goodman, 1989). The National Institutes of Health. We are indebted to Laura King, David Buss,
and Josh Holahan tbr their comments on an earlier version of this article.
psychological and physical health importance of this dif- Correspondence concerning this article should be addressed to James
fuse community is striking. Through such groups, millions W. Pennebaker, Department of Psychology, University of Texas, Austin,
of Americans attempt to overcome addiction, discuss inno- TX 78712. Electronic mail may be sent to pennebaker@psy.utexas.edu.

February 2000 • American Psychologist 205


Copyright2000by the AmericanPsychologicalAssociation.lnc, 0003-066X/00/$5.00
Vol. 55, No. 2. 205-217 DOt: 10.1037//0003-066X.55.2.205
or embarrassment actually would decrease affiliative mo- Although distinctions between professionally facilitated
tivation. Anxiety apparently motivated socialization but and peer-mediated groups may be meaningful in outcome
could not serve as a singular explanatory variable in the studies aimed at discerning the active agents in curative
social comparison process, because the emotion resulted processes, it is important to bear in mind that as a measure
from different concerns. of basic value to participants, participation is its own index
Social comparison is intrinsic to the health care set- of success: Groups without value cease to be groups. Mem-
ting, where anxiety levels are often high, and information, bers vote with their feet.
when available, may not come in a form that patients The most comprehensive analysis of self-help groups
understand. Diagnosis, treatment, side effects of medica- in general found that the leading reason for participation in
tion, or other kinds of life disruptions prompt patients to groups of any kind was the experience of physical illness
talk with others undergoing a similar challenge. (Lieberman & Snowden, 1993). Even after excluding cop-
ing with substance abuse, groups for coping with physical
Characterizing the Self-Help Category illness composed approximately 42% of the self-help-
The self-help concept stems from the assertion that people group population, dwarfing statistics for bereavement,
facing a similar challenge can help each other simply by crime victimization, parenting issues, and personal growth,
coming together. The power of this approach lies in the yet no studies have addressed the epidemiology of mutual
belief that a collective wisdom is born through the shared support by diagnostic category.
experience of participants rather than through the profes-
sional training or style of the leader. The kinds of help
Effectiveness of Mutual Support in
requested and offered in this context are largely free of
Improving Physical a n d
professional structures or assumptions (Riessman, 1985). Psychological Health
Self-help group participation costs its members little or Support groups are an important means by which Ameri-
nothing. cans change their health behaviors. In some cases, mutual
Overall epidemiological figures on self-help in the support constitutes the exclusive "treatment" for a health
United States indicate a prevalence rate of approximately problem, as in the case of Alcoholics Anonymous (AA).
3% to 4% of the population over a 1-year period, and Self-help has also been found to be as effective as profes-
lifetime participation rates are estimated at around 25 mil- sional treatment for some forms of mental (e.g., depres-
lion (Kessler, Mickelson, & Zhao, 1997; Lieberman & sion) or physical (e.g., headache) illnesses that have tradi-
Snowden, 1993). Lifetime use of self-help is higher for tionally been viewed as the domain of psychotherapy or
men than for women (3.6% vs. 2.4%). Caucasians are three medicine (Gould & Clum, 1993). The stories told and heard
times as likely to participate as African Americans, with in this context carry the weight of shared experience, the
Hispanic participation levels falling about midway between emotional potency of common suffering, and an avenue for
the two. The mean age of participants is 43.1 years, and social learning. Rappaport (1993) has suggested that these
mean education level is 12 years (slightly higher than the shared stories form a kind of group narrative that consti-
national average of 11 years). tutes a social identity, distinguishing the self-help group
Due to the grass-roots nature of the self-help phenom- from any kind of formal psychotherapy (see also Gergen &
enon, support groups exist in a wide range of styles and Gergen, 1997). In a similar vein, Yalom (1995) has as-
structures. Precise boundaries around self-help categoriza- serted that self-help groups offer a unique venue for
tion are not only difficult, but impractical. Within the growth, social experimentation, and change.
self-help arena, considerable innovation and diversity of Measurement of the efficacy of self-help is problem-
style occur as participants tailor group processes over time atic from the outset because of its inherently self-selected
to reflect group needs and goals. Lieberman and Snowden nature. However, investigations of the effects of support-
(1993) have reported that over 60% of observed groups group participation, even under random assignment, have
were professionally facilitated while simultaneously being yielded positive results on the whole. Rheumatoid arthritis,
characterized as self-help. Such findings point to the diffi- cancer, heart attack, and epilepsy patients in support
culty of categorical boundaries and the problematic nature groups, for example, have exhibited more health benefits
of research in real-world social patterns. Nevertheless, than nonparticipating controls or controls on a waiting list
groups that define themselves as self-help, whether they are (Bradley et al., 1987; Dracup, 1985; Droge, Arntson, &
professionally led or not, are viewed by members as sell'- Norton, 1986; Telch & Telch, 1986). Mutual support in-
help. For example, many hospital-based support programs terventions can be highly cost effective: One study of
described as professionally facilitated are in fact hybrid rheumatoid arthritis patients participating in peer-facili-
programs developed with guidelines from a national foun- tated groups reported mean pain reductions of 20%, in-
dation and idiosyncratically shaped by the time commit- creases in self-efficacy, and an average four-year cost sav-
ments of the patient volunteers and the coordination skills ings of $648 per person (Lorig, Mazonson, & Holman,
of a nurse or social worker employed by the hospital. 1993). Pain reductions were strongly related to increases in
Group counts say little about health outcomes or other self-efficacy, an identified factor in positive health behavior
quality-of-treatment measures, just as other reports of so- change (DiClemente, 1995). If typical self-help participa-
cial participation, such as church membership or marital tion rates (3%) occurred among the 32 million arthritis
status, say little about the quality of those experiences. sufferers, the four-year savings in arthritis care alone could

206 February 2000 • American Psychologist


total $650 million. The pressures of managed care and jects and the use of groups as our units of analysis, rather
incentive structures such as capitation may increase atten- than counts of individuals, is somewhat unusual. However,
tion to lower cost approaches to health management. the experience of illness does engender, either permanently
Support group participation has also been associated or temporarily, an illness identity (for an excellent treat-
with superior prognosis in breast cancer and heart disease. ment of these themes, refer to Kleinman, 1995). We wanted
In one highly publicized study, a sample of 88 metastatic to examine the social context of illness at the collective
breast cancer patients received either group psychotherapy level. To do so, we adapted a design that would allow
or informational and nutritional support. Those randomly researchers to observe something of how groups coalesce.
assigned to the therapy condition had survival times ap- In our first study, the goal was to identify patterns, if
proximately twice those of controls (1.50 vs. 0.75 years, any, of support group participation by illness category. To
respectively; Spiegel, Bloom, Kraemer, & Gottheil, 1989). address this question, four major metropolitan areas--New
Similar findings have been reported for a sample of patients York, Los Angeles, Dallas, and Chicago--were canvassed
with malignant melanoma (Fawzy et al., 1993). Finally, in an eftort to identify every support group that existed for
various programs have been adopted for heart patients that each of the 20 studied conditions. Counts were subse-
have relied heavily on regular group support for patients quently adjusted for population and prevalence and tested
and, on occasion, their spouses. Across multiple studies, for consistency across cities.
markers of heart disease progression, including measures An extension of the first question centered on the
of atherosclerosis and resting blood pressure, have demon- newest avenue of social interface, the Internet. In our
strated clinically significant improvement (Ornish et al., second study, the primary goal was to assess identifiable
1990). patterns of mutual support activity among patient popula-
The interventions cited above represent highly refined, tions in this virtual community. A related goal was to
professionally developed, programmatic approaches to understand in what ways virtual and actual support patterns
coping with serious health threats. Although they bear would resemble one another. For a period of two weeks,
marked differences from patient-initiated groups, they may every post made to support forums for the 20 conditions in
also share some fundamental therapeutic qualities worth two on-line domains (America Online and the larger Inter-
noting, such as opportunities for disclosure, empathic con- net) was collected and counted as a measure of mutual
nection, shared goals, and psychological adjustments to life support.
challenges. They underscore the medical value of mean- in our third study, we sought to identify factors asso-
ingful, group-based programs whose psychological focus ciated with the search for mutual support, both face-to-face
elicits psychosocial and physical health benefits. Addi- and on-line. Judges' ratings were obtained on 16 dimen-
tional research can help clinicians identify the optimal sions: suspected of playing a role in support behaviors.
blend of patient and professional agendas to maximize Ratings were then correlated with support measures to
treatment success. generate a sense of the issues that drive the search for
On the basis of these very limited reports, it is appar- mutual support.
ent that group approaches to health care can play an instru-
mental role in health behavior change, treatment adherence, Study 1: AssessingSupport Patterns
cost control, and disease reversal. Such groups have sig- in Metropolitan Areas
nificant therapeutic potential, yet it is apparent that the
primary feature of mutual-support participants is their self- Four major metropolitan areas--Chicago, Dallas, Los An-
selected nature. These considerations prompted a series of geles, and New York--were the focus of a semistructured
investigations about the demand side of the support group series of surveys to identify the number of support groups
community--who participates and why. in that area for patients suffering from 20 different health
problems. We contacted the mental health services agency
Examining_Supportive Behaviors as a serving each of the surveyed cities and requested any
Function of Illness Type handbook or comprehensive compilation of support groups
Illnesses vary along a number of psychologically meaning- for that area. After receiving the compilations, each agency
ful dimensions, such as life threat, embarrassment, and or contact listed under every diagnostic category studied
was called to confirm that the group existed and was not a
behavioral impact on disease course. Although health con-
cerns are the most frequently cited reason for joining a duplicate or expired listing. Counts resulting from these
support group, no studies have examined how support- calls were assembled into a support profile for each city.
group participation varies as a function of illness features
Disease Selection Criteria
or type. We designed a series of three studies to assess (a)
the prevalence of support groups in 20 different patient The conditions selected for study are listed in Table 1. The
populations, (b) the activity rates of virtual support forums selection process was driven by practical rather than theo-
for those same patient groups, and (c) the identifiable retical reasons, with the goal of capturing a wide range of
factors associated with support seeking across diagnostic problems that afflict people potentially capable of attending
category. a support group. Inclusion efforts focused on the most
Our choice of methodology merits some discussion. prewtlent and deadly conditions, as well as those with
The selection of diseases, rather than individuals, as sub- significant psychological and behavioral components, pre-

February 2000 • American Psychologist 207


bias a n d reflected the a p p r o a c h o f p o t e n t i a l users, F o r this
Table i study, a g r o u p w a s c o u n t e d as s e l f - h e l p if the cost o f
An Overview of the Prevalence and Death Toll p a r t i c i p a t i o n did not e x c e e d $8 p e r session, if the r e s p o n -
Associated With the Studied Diseases d e n t d e p i c t e d the g r o u p as self-help, a n d if the m e e t i n g s
w e r e held on a r e g u l a r basis, w h e t h e r the g r o u p was pro-
Prevalence Deaths
f e s s i o n a l l y f a c i l i t a t e d or not.
Rate Rate W e identified a n d c o n t a c t e d g r o u p s for c o n f i r m a t i o n
Disease type (in thousands) Rank (in thousands) Rank t h r o u g h the listings in local registries o f s e l f - h e l p a n d social
s e r v i c e f a c i l i t i e s . " T h e s e registries feature listing c a t e g o r i e s
AIDS 785 16 9.8 11
Alcoholism 13,760 5 8.0 12 a c c o r d i n g to d i a g n o s i s or need, s u c h as " b e r e a v e m e n t " or
Anorexia nervosa 530 18 0.5 15 " d i a b e t e s . " O n c e the g r o u p s w e r e identified, w e c o n t a c t e d
Arthritis 32,642 1 0.0 18 e a c h o n e and, in a s t a n d a r d i z e d protocol, d e t e r m i n e d the
Asthma 13,074 6 1.4 14 n u m b e r o f g r o u p s run t h r o u g h the p a r t i c u l a r a g e n c y , the
Breast cancer 1,769 13 12.0 9 f r e q u e n c y o f g r o u p m e e t i n g s , a n d the a v e r a g e g r o u p size. 2
Colon cancer 911 15 23.6 5
Lung cancer 394 19 40.8 3 Survey Results and Discussion
Prostate cancer 583 17 13.5 8 T h e s u r v e y p r o c e s s y i e l d e d a total o f 12,596 s u p p o r t g r o u p s
Chronic fatigue 1,000 14 0.0 18 in the four cities. T h e raw counts, the p o p u l a t i o n - a d j u s t e d
Chronic pain 30,000 2 0.0 18 c o u n t s , a n d the p r e v a l e n c e - a d j u s t e d i n d i c e s o f s u p p o r t o f f e r
Depression 9,400 8 11.0 10 a variety o f i n s i g h t s a b o u t the s c o p e a n d f r e q u e n c y o f
Diabetes 7,813 9 19.6 7
s u p p o r t s e e k i n g for h e a l t h c h a l l e n g e s (see T a b l e 2).
Emphysema 1,900 12 36.0 4
A s is e v i d e n t at the b o t t o m o f T a b l e 2, the four cities
Heart disease° 21,255 4 288.0 1
Hypertension 27,549 3 2.0 13 v a r i e d c o n s i d e r a b l y in the t e n d e n c y to p a r t i c i p a t e in sup-
Migraine 11,023 7 0.0 18 port groups. P o p u l a t i o n - a d j u s t e d g r o u p totals i n d i c a t e that
Multiple sclerosis 350 20 0.0 18 s o m e cities are c h a r a c t e r i z e d b y h i g h e r overall s u p p o r t
Stroke 3,000 11 56.0 2 levels than others. A c h i - s q u a r e a n a l y s i s o f the four city
Ulcer 4,569 10 22.0 6 g r o u p totals ( a d j u s t e d ) y i e l d e d a h i g h l y significant differ-
e n c e b e t w e e n e x p e c t e d a n d o b s e r v e d totals for the four
Note. All figures were derived from the 1992 and 1993 reports of the
National Centerfor Health Statistics and the 1996 report of the Centersfor cities, X2(3) = 491.31, p < .001. D a l l a s h a d the l o w e s t
Disease Control and Prevention(CDC), exceptfor the following: alcoholism level o f support, w i t h 139.5 g r o u p s p e r m i l l i o n , w h e r e a s
(Taylor, 1995); anorexianervosa(NationalAssociationoFAnorexiaNervosa C h i c a g o h a d the h i g h e s t m e a n o f 754.9. A l t h o u g h it is
and AssociatedDisorders, http://www, anad.org.Factsht97,htmI, retrievedJune
1996); chronic fatigue (CDC, 1994; Kroenke et al., 1988); chronic pain b e y o n d the s c o p e o f this study to identify the r e a s o n s for
(Taylor, 1995); depression(NationalMentalHealthAssociation,http://v,,",~ t h e s e v a r i a t i o n s in s u p p o r t levels across cities, it w o u l d b e
mhsourcecom/resource/mh/html, retrievedJune 1996); diabetes (National
Institutes of Health, 1995}; emphysema(AmericanLungAssociation,http:// helpful to u n d e r s t a n d the factors at w o r k - - l o c a l m e n t a l
www.lung.usa.org.noframes/learn/lung/lungemphysema.html, retrievedJune h e a l t h a p p r o p r i a t i o n s levels, f o u n d a t i o n support, p o p u l a -
1996); migraine (National HeadacheFoundation,h~p://www.headaches tion density, or historical a n d c u l t u r a l o r i e n t a t i o n s - - t h a t
org, retrievedJune 1996); multiplesclerosis (Multiple SclerosisFoundation,
http://www msfacts.org/html, retrievedJune 1996); and ulcer(U.S. Bureauof
the Census, 1996).
° The prevalenceratefor heartdiseasesis the sum of 13,490,000 myocardial F~r the four surveyed areas, the handbooks used were as follows:
infarctionand coronaryheartdiseasediagnosesand almost8,000,000 angina Los Angeles--Los Angeles Count' Social Service Resource Directory;
cases with or without identifiedheartproblems. New York--Soeial Service Directo O' of Greater New York Cio' and
Directoly oj"Se!/-Help Groups in New York City," Chicago---Directot-y of
Sel]:Hell) and Mutual Aid Groups; Dallas--untitled private compilation
provided by the Dallas County Mental Health Association. All listings
under the relevant categories were called unless there were more than 20
s u m a b l y r e s p o n s i v e to p s y c h o s o c i a l support. C o n d i t i o n s separate listings, in which case only the first 20 were contacted, and the
a s s o c i a t e d w i t h e x t r e m e old age or c o n t a g i o n w e r e ex- mean results of those first 20 were extrapolated to the rest of the listings.
cluded from consideration. For example, more than 20 agencies and individuals facilitate groups for
AIDS patients in the New York area. so the first 20 listed were contacted.
T h e p r e v a l e n c e a n d m o r t a l i t y rates for e a c h o f the The number of groups in existence was obtained for each listing, and then
studied c o n d i t i o n s w e r e c o l l e c t e d to a d j u s t s u p p o r t - g r o u p these numbers were averaged: the resulting average was multiplied by the
c o u n t s for the p o p u l a t i o n f r o m w h i c h they w e r e d r a w n . total number of listings.
U n l e s s o t h e r w i s e noted, the s o u r c e for all was the N a t i o n a l = When a group was called but there was no answer, there were three
possible outcomes: (a) If a message machine played a tape of scheduled
C e n t e r for H e a l t h Statistics ( N C H S , 1996). Statistics un- meetin,2-s, that intk)rmation was regarded as current confirmation and was
available from NCHS were obtained from foundations recorded as data. (b) If a message machine identified that listing (tele-
s e r v i n g the p a t i e n t g r o u p s (e.g., A m e r i c a n C a n c e r S o c i e t y ) phone number) as the contact for a support group, the researcher would
or f r o m e p i d e m i o l o g i c a l r e s e a r c h reports (refer to Notes record the groups as "1" and make an effort to call back and confirm. (c)
If a message machine answered and no mention was made of a group, or
section o f T a b l e 1).
in the case of no answer at all, the researcher made three further attempts
Survey Procedure to confirm the listing. No groups were counted unless confirmed. Finally,
if in the course of the survey the contact person volunteered the name of
T h e goal o f the r e s e a r c h was to identify as m a n y g r o u p s as a group or agency that was not featured in the researcher's registry, the
p o s s i b l e p e r c o n d i t i o n in a w a y that m i n i m i z e d s a m p l i n g researcher also contacted that group.

208 February 2000 • American Psychologist


Table 2
Support Group Totals by. Condition and City., Mean Groups Across Cities, and Prevalence-Adjusted Support
Indices Across Cities, Along With Their Ranks
Chicago Dallas LosAngeles New YorkCity All cities
No. of No. of No. of No. of
Condition groups Rank groups Rank groups Rank groups Rank Mean° Rank Indexb Rank

AIDS 21 9 35 2 155 2 257 2 18.96 2 241.52 2


Alcoholism 4,003 1 128 1 2,835 1 4,000 1 402.78 1 292.72 1
Anorexia 32 8 2 13 13 7 7 7 2.19 12 41.30 4
Arthritis 19 11 5 7 18 3 5 10 2.12 13 0.65 16
Asthma 19 11 22 3 6 10 6 9 4.06 9 3.10 14
Cancer, breast 57 4 12 4 18 3 97 3 10.48 3 44.49 3
Cancer, colon 37 5 2 13 4 11 2 12 5.79 5 21.55 6
Cancer, lung 1 16 2 13 1 15 1 15 4.93 6 9.33 9
Cancer, prostate 13 13 6 5 16 6 7 7 6.04 4 34.66 5
Chronic tatigue syndrome 19 11 1 15 1 15 0 18 0.94 14 9.38 8
Chronic pain 2 15 0 18 0 19 1 15 0.12 17 0.04 18
Depression 57 3 6 5 17 5 31 4 4.71 7 5.01 12
Diabetes 80 2 1 15 10 8 23 5 4.51 8 5.77 11
Emphysema 0 18 0 18 1 15 2 12 0.63 15 3.29 13
Heart disease 36 6 4 8 4 11 5 10 2.29 11 1.08 15
Hypertension 0 18 0 18 0 19 0 18 0.00 19 0.00 19
Migraine 0 18 0 18 0 19 0 18 0.00 19 0.00 19
Multiple sclerosis 3 14 3 10 1 15 1 15 0.58 16 16.61 7
Stroke 34 7 3 10 10 8 10 6 2.42 10 8.08 10
Ulcer 0 18 0 18 1 15 0 18 0.03 18 0.06 17
Group total 4,605 265 3,201 4,535
Population (in millions) 6.10 1.90 8.90 7.00
Mean groups per million 754.92 139.47 359.66 647.86
Note. Populationfiguresfor citiesare fromthe U.S.CensusBureauStatistics(ht~p://venus.census.gov/cdrom/Iookup,retrievedSeptember20, 1996).
° Meanswerecomputedby averaginggroupcountsper millionacrosscity. b Indexrepresentsprevalence-adjustedsupportmeasurederivedfromcomputingmean
groups per million(acrossthe four citiessampled)dividedby prevalence,multipliedby 1,3,000.

make mutual support more the norm in Chicago than in support: The largest number and degree of health behavior
Dallas. changes in the country are the product of a network of
To assess the relative consistency of supportiveness as largely anonymous, expert-free, cost-free groups whose
a construct by diagnostic category, we computed Spearman sole purpose is mutual support. It is also useful to note that
rank correlations (r~) for the tour city counts. The resulting the AA philosophy asserts that group participation is a
correlations were high: A reliability analysis indicated an lifetime commitment: Addiction is an incurable condition
alpha for the four cities of .89. Given this high degree of managed only by enduring vigilance. Although a detailed
intercorrelation, we collapsed across cities to generate a account of the AA literature is outside the focus of this
population-adjusted mean and rank for each disease, in- article, multiple factors have been identified that describe
cluded in Table 2. Not surprisingly, alcoholism ranked first, self-help and treatment success in coping with addiction
with AIDS second. The cancers followed, with breast can- (e.g., Tucker, 1995).
cer showing the highest levels of support and lung cancer What is striking is the degree, or range, in support
the lowest. Finally, collapsed population-controlled counts seeking in general among illness categories after adjusting
were adjusted for prevalence (figures represented in Table for prevalence. AIDS patients, for instance, are 250 times
1) so that the resulting support indices also reflected the more likely to participate in a support group than hyper-
population sizes from which the participants were drawn. tension patients. Breast cancer patients have formed over
The preponderance of support groups in the alcohol- 40 times as many support groups as heart disease patients,
ism category is at once predictable and noteworthy and so whose conditions undeniably benefit from psychosocial
deserves specific mention. Of the 12,596 total groups iden- and behavioral changes. Such contrasts raise questions
tified for all of the conditions studied, across all cities about the motivations of participants.
sampled, AA groups constituted 10,966, or 87%, of the Our methodology suffers from a few problems intrin-
group counts. These numbers, and hence the AA story, are sic to the self-help culture that make clear quantification
a testament to the potential strength and efficacy of mutual inherently difficult. Comorbidity in both disease and sup-

February 2000 ° American Psychologist 209


port makes clean counts problematic. For instance, stroke is Was wondering if any women who have had breast cancer have
highly related to hypertension. It is evident, though, that noticed a correlation between stress in their life and the onset of
those with high blood pressure will seek support after a the bc? Two years ago my husband and I separated and in the last
stroke much more readily than before it. Individuals suf- year--the year from hell--I experienced a car accident, the real-
fering from hypertension, moreover, have a higher proba- ization that someone I loved was on the verge of schizophrenia, a
bility of also suffering from diabetes or heart disease. It is peeping Tom invading my privacy, my father's death, the loss of
my job and financial security, and then breast cancer. . . . After
unclear whether patients carrying more than one diagnosis
awhile [sic] I wondered if it was worth living. I lost my zest and
tend to be involved in more than one support group. In
couldn't find much joy in life . . . . Psychologically and emotion-
some cases, support groups were not exclusively composed ally, as most of you know who've been through similar things, I
of individuals in the diagnostic category of interest. For feel wiped out. I pray a lot and have good friends who help me as
example, in the case of support groups for anorexia, some they can and also pray for me. (contributor to an Internet support
(e.g., Overeaters Anonymous) included participants with forum for breast cancer)
bulimia and obesity problems as well.
A second unavoidable problem concerns the process Let me give you my idea on how to be a good CFS [chronic
of adjustment for the prevalence rates of the diseases. fatigue syndrome] wife. Tell him to order pizza or something.
Given the relatively low participation rates of all patient Have him clean the exotic molds in the refrigerator. Prepare
types in mutual support, the observed ranks are heavily yourself. Stay in bed all day and make sure you are more inter-
driven by the prevalence rates themselves. Despite the esting than the vixens he works with all day . . . . Give him a
grocery list and tell him to buy whatever he wants to drink. Feel
acknowledged problems, the methodology was the most
free to cry about your day. Men love to comfort and protect. Go
valid means of assessing support group patterns without to sleep the moment he arrives. If he wants a clean house, he can
introducing significant bias. The observed participation visit a neighbor. (contributor to the chronic fatigue discussion
patterns in these face-to-face groups prompted questions list--Intemet)
about how virtual avenues of support might elicit similar or
different patterns among the same patient groups. The reason they are calling your mother a Type II is because the
first hour was 212 and the second 183. Two hours after eating is
Study 2: Frequency and when your sugar levels should peak out. Because her levels were
Characteristics of On-Line Support above 120 two hours after eating, she is probably a Type II. Since
her bg [blood glucose] levels were down to 11 three hours later,
As of 1996, approximately 15% of Americans (about 40 it probably means that your morn has lazy organs like I do. She
million) already had Internet access, with growth estimated may be put on reeds, then again she may be able to control it with
at 20% per month (Ferguson, 1996). Moreover, interest in diet and exercise. Maybe you should go with your mona to the
on-line participation is significantly driven by health issues. doctor and try to get all the information that you both need. The
A recent Louis Harris poll conducted to assess the motives doctor probably won't mind, and will probably be glad that her
family has taken such an interest in her well being. (response to
behind new subscriptions to on-line services found that
the daughter of a recently diagnosed diabetic on the Internet
health concerns were ranked first (reported by Ferguson,
diabetes forum)
1996). The social connections enabled by the advent of the
Internet constitute a new forum of social support that has Each individual account contributes to a larger col-
unknown, and largely unstudied, potential. For the patient, lective narrative that paints a portrait of identity by
the availability of on-line support introduces a new dimen- diagnosis. With good reason, researchers in the fields of
sion of social connection and access to information. For
psychology, sociology, and anthropology are focusing
researchers, the observation of on-line support groups of-
on the narrative approach to understanding identity and
fers a unique window for understanding the kinds of expe-
culture in various groups. A comparison of virtual and
riences that patients wrestle with, from reluctant insurers to
actual support enriches a basic understanding of support-
patronizing doctors, as well as histories of suffering, con-
seeking patterns on the part of individuals coping with
fusion, and misdiagnosis. A few examples from our Inter-
health problems.
net posts are featured below.
The aim in this study was to identify those kinds of
Dear Carol, Hi! I understand your concerns. I am 47 and I just health problems that prompt higher levels of on-line par-
survived my first and hopefully last heart attack. I too continue to ticipation and to determine what similarities would exist
think of one day or the next will be my last day. I weep for this between virtual and actual avenues of support. Our strat-
because I have not danced at my daughter's wedding and I egy, as in Study l, was not to assess the availability of all
planned to sit on a porch with my husband and I cling to this life support resources for patients (e.g., friends, family, health
with all of the intensity that I can muster. But I know your fear care professionals, and coworkers) but to gain a broader
and I know your depression so very well. Whether or not I can
perspective on those types or experiences of illness that
make it past another twelve months without another episode is
cause patients to seek out others facing the same challenge.
now the issue since I have survived the first month. Carol they just
don't know very much about women and heart disease--this Using a method similar to that used for the city surveys, we
much I know for sure. (AOL subscriber, heart disease bulletin measured support levels for the 20 studied conditions by
board) counting all contributions to on-line forums by participants

210 February 2000 • American Psychologist


o v e r a t w o - w e e k period. 3 T w o on-line d o m a i n s w e r e cho- Several patterns e m e r g e d in the on-line forums that
sen for monitoring: Internet n e w s g r o u p s and their A m e r i c a distinguished them f r o m the metropolitan groups. First,
Online ( A O L ) counterparts, bulletin boards. F r o m those alcoholism, which d o m i n a t e d the face-to-face samples, ex-
two venues, 37 virtual support groups w e r e identified and hibited a m u c h l o w e r activity level on-line, ranking ninth
m o n i t o r e d for a period o f two c o n s e c u t i v e weeks. 4 and seventh on A O L and the Internet, respectively. This is
The Internet, at the time o f the study, featured o v e r understandable g i v e n the long tradition of actual support
40,000 newsgroups, with dozens o f new ones being gen- e n j o y e d by A A m e m b e r s , w h o m a y find virtual support a
erated daily. T o d e t e r m i n e which groups to monitor, we poor' substitute for the group experience. Second, chronic
c o m p i l e d a master list o f all existing English language fatigue syndrome, which did not e m e r g e as a diagnostic
n e w s g r o u p s (nationwide and/or international only, not re- category until 1988, had the highest activity level o f all of
gional) and then used k e y w o r d searches for each disease the lnternet groups. In v i e w of the high rate of use by
category. F r o m the results of those searches, we could multiple sclerosis sufferers as well, the on-line d o m a i n m a y
identify all groups that were d e e m e d to be mutual support be particularly useful in bringing together those w h o suffer
groups as o p p o s e d to groups that w e r e forums for lobbyists, from rare and debilitating conditions, in w h i c h getting
researchers, or other expert exchange. If m o r e than one together physically w o u l d present a n u m b e r o f practical
Support group existed, we selected the group exhibiting the barriers. Virtual support can be very attractive to those
highest v o l u m e of e x c h a n g e o v e r a two-day pilot period. w h o s e disability impairs mobility, and, m o r e striking, the
The c o m m e r c i a l nature o f A O L ' s organization distin- on-line c o m m u n i t y allows for anonymity. Potent social
guishes it to a large degree f r o m the groups found on the factors like physical attractiveness, vocal characteristics,
Internet. Groups present on A O L ' s " H e a l t h C h a n n e l " re- ethnicity, and social skills are neutralized.
flect the c o m m e r c i a l or public service goals of large groups Despite these differences, raw counts for the two
that w o u l d like to have a presence on that server (e.g., on-line measures were positively correlated with the col-
Arthritis Foundation, A m e r i c a n L u n g Association, various lapsed measure of the city g r o u p s - - r ~ ( 1 8 ) = .45, p < .05,
p h a r m a c e u t i c a l companies). The pattern of e m e r g e n c e o f for A O L ; r~(l 8) = .37, p = . 11, for the Internet (two-tailed
n e w s g r o u p s (or bulletin boards as they are k n o w n on A O L ) in alll c a s e s ) - - s u g g e s t i n g that an underlying construct of
is just the opposite of that of the larger Internet. Internet support seeking does exist by diagnosis, with the different
groups are o r g a n i z e d by interested individuals, so no sys-
tematic c o m m e r c i a l m o t i v e s are part o f that agenda. This
m a k e s for a source of unique patterning in the groups on :~From a methodological standpoint, it was unclear whether the
appropriate comparison in this domain would be the number of unique
A O L and the Internet, which is discussed more fully later. contributors or the number of contributions in total. The resulting decision
The raw totals and adjusted indices of support, along to count contributions was a judgment call based on the goal of having an
with their ranks, are featured in Table 3. In those cases in index of active participation rather than participants. The virtual arena is
which a condition lacked a forum, the n u m b e r of posts was also populated with a large number of "lurkers," or individuals who read
r e c o r d e d as zero. Posts on A O L o v e r the t w o - w e e k period, others' posts but do not contribute. It was felt that the overall amount of
conversation was a more accurate reflection of social exchange than the
for all groups studied, totaled 2,043, whereas posts on the number of members. In any case, post hoc analyses of the number of
larger Internet totaled 5,440. The highest rates o f activity unique users per forum revealed that ranks of users per category and ranks
o b s e r v e d on A O L w e r e for multiple sclerosis, f o l l o w e d by of contribution totals per category exhibited a correlation of .95, suggest-
diabetes, and then by depression. The highest rates of ing that the different measures were comparable.
To determine which groups to monitor, we compiled a master list
activity on the Internet were for chronic fatigue syndrome, of all existing newsgroups (nationwide and/or international only, not
f o l l o w e d by diabetes, and then by breast cancer. The lowest regional) and performed keyword searches for each disease category.
rates o f activity on both domains were o b s e r v e d for chronic From the results of those searches, all groups that were deemed to be
pain, e m p h y s e m a , and migraine. Chronic fatigue s y n d r o m e mutual support groups, as opposed to forums for lobbyists, doctors,
researchers, or other expert exchange, were identified. In cases in which
sufferers exhibited e x t r e m e l y high activity levels on the
more than one support group was identified, the group that exhibited the
Internet, whereas no list was available for those sufferers highest w~lume of exchange over a two-day pilot period was selected.
on A O L . This contrast m a y reflect the i m p e r f e c t meeting Most support groups for both physical and mental illness begin with the
ground b e t w e e n c o n s u m e r - d r i v e n organizational patterns prefix al:.support. For example, the arthritis support group is
on the Internet and the p r o v i d e r - d r i v e n e v o l u t i o n o f A O L . alt.support.arthritis. The most notable exception to this trend was the
most active support group for breast cancer, which is breast-
R a n k correlations b e t w e e n the two forums approached but cancer@morgan.usc.mun.ca. The only difficult aspect in identifying the
did not reach significance, r~(18) = .35, p = .13. This appropriate support forum emerged with respect to AIDS. In some senses,
finding m a k e s sense in light o f the fact that Internet and although new cases reflect a change in the demographics of AIDS, it has
A O L support groups reflect different user bases. U s i n g a traditionally been strongly tied to the homosexual community. The news-
group alt.~upport.homosexual was monitored and found to have a sub-
m e t h o d similar to that used for the city groups, we col-
stantial focus on the AIDS epidemic; however, to select the list as the
lapsed the two on-line measures within each diagnostic fbrum for support would have misrepresented a significant portion of the
category and adjusted for p r e v a l e n c e in order to yield a discussion. The point to bear in mind is that AIDS, unlike any of the other
m o r e accurate reflection o f the relative p r e v a l e n c e of on- diseases, encompasses lifestyle and sexual issues that make its discussion
line support behaviors. T h e s e figures are outlined in Table hard to contain, at least by diagnostic boundaries. Many groups were
forums in which AIDS was discussed. Sci.med.aids was chosen because of
3. R a n k correlations of prevalence-adjusted on-line and its focus on A1DS and its lack of homosexual bias (which cannot really be
face-to-face city indices were quite high, r~(18) = .70, considered any advantage, merely noteworthy). A complete list of the
p < .01. selected newsgroups is available from the authors.

February 2000 • A m e r i c a n Psychologist 211


Table 3
Totals of On-Line Support Contributions for AOL and the Internet by Disease, Along With Their Ranks, as Well
as Prevalence-Adjusted Indices of Overall On-Line Support Activity and Their Ranks
AOL Internet AOL and Internet

No. of No. of
Disease contributions Rank contributions Rank Adjusted ° Rank

AIDS 127 8 138 9 168.79 7


Alcoholism 71 9 270 7 12.39 11
Anorexia 61 10 251 8 294.34 4
Arthritis 156 6 77 12 3.57 15
Asthma 39 12 103 10 5.43 12
Cancer, breast 221 4 946 3 329.85 3
Cancer, colon 9 14 337 5 189.90 6
Cancer, lung 173 5 no list 18 219.54 5
Cancer, prostate 40 11 14 15 46.31 10
Chronic tatigue syndrome no list 18 1,035 1 517.50 2
Chronic pain no list 18 56 13 0.93 17
Depression 248 3 779 4 54.63 9
Diabetes 291 2 989 2 81.91 8
Emphysema no list 18 no list 18 00.0 20
Heart disease 144 7 7 16 3.55 16
Hypertension 10 13 no list 18 .18 19
Migraine no list 18 90 11 4.08 14
Multiple sclerosis 451 1 317 6 1,097.14 1
Stroke 0 18 31 14 5.17 13
Ulcer 2 15 no list 18 0.22 18
Total posts 2,043 5,440
Note. Ranks assigned indicate a ranking of 1 for highest observed values. AOL - America Online.
° On-line adjusted index was derived by computing mean total posts per condition (AOL + Internet/2), divided by prevalence, multiplied by 1,000.

avenues of support constituting a kind of method variance. the population-adjusted city index (refer to Table 2) and the
Both types of support are means by which social compa> mean on-line indices (Table 3) were converted into z
ison is enabled: Similar sufferers can tell their stories to scores, Means of those z scores across the two support
sympathetic audiences and can exchange tips about the types were computed and are depicted in Figure 1.
management of their conditions. Means of the two on-line As is evident in Figure 1, other than alcoholics, cancer
measures computed for each condition exhibited a strong patients exhibit the highest overall tendency to seek and
relation to the city patterns, r~(18) = .47, p < .05. In a offer support. Also notable were support levels for AIDS,
similar vein to the patterns observed in the metropolitan diabetes, depression, and chronic fatigue. By contrast, ex-
groups, breast cancer, depression, and diabetes were con- tremely low levels of support were observed in the cases of
ditions in which talk (in the form of posts) occurred at ulcer, emphysema, chronic pain, and migraine. Support
relatively high rates, whereas talk by migraine, ulcer, and levels in the cardiovascular disorders, even as combined,
chronic pain sufferers was conspicuously absent from the are only slightly higher than those for anorexia, a condition
bulletin boards. whose prevalence is almost 1,000 times less prevalent.
Because city group participation and on-line partici- Some conditions, then, are noteworthy for the amount of
pation rates were significantly con'elated, we felt it would talk they generate among sufferers, whereas others are no
be useful to generate one comprehensive support index, less noteworthy in their relative silence.
across both on-line and actual groups, leaving out the If migraines are as responsive to self-help as to med-
prevalence adjustment that so strongly shaped rankings ication, why don't migraine sufferers get together? What
observed in Tables 2 and 3. Because of its extreme value, kinds of suffering do not generate social comparison be-
alcoholism was excluded. To convey a simpler picture, haviors? Bearing in mind the shared and distinctive fea-
figures for all cancers were combined, and an overall tures of the two support venues and the markedly high
cardiovascular disease category was generated by combin- consistency in tendencies to participate in support, our goal
ing hypertension, coronary heart disease, and stroke. Both was to uncover the motives behind such patterns.

212 February 2000 • American Psychologist


differences, such as sociability or commitment to work, are
Figure 1 also related to support seeking. Prior studies of self-help
Summary Indices of Supportiveness Combining City participants found that they have higher levels of social
and On-LineMeasures skills than do their nonparticipating counterparts (Taylor,
Falke, Shoptaw, & Lichtman, 1986). One question, then,
was the degree to which some patient groups would be
perceived as generally friendlier than others.
A second consideration centered on illness factors that
determine patients' perceived self-care needs and treat-
ment-adherence patterns. The most widely cited model of
patients' schemas about illness suggests that such con-
structs fall into five dimensions: illness identity, time
course, consequences, causal models, and likelihood of
cure (Leventhal, Meyer, & Nerenz, 1980). Some items
characterized under headings of health care salience and
patient burden were generated to capture the anxiety-
relevant aspects of illness and treatment consistent with
Leventhal et al.'s model of illness schemata. Examples
include degree of life threat, ideas about cause, burden on
patient to manage, and social stigma.
Finally, some items were included to assess the inter-
personal impact of a given illness category. Examples
include embarrassment, stigmatization, and disfigurement.
Note. Indices represent means of z scores associated with population- We hypothesized that social anxiety might be assuaged
adjusted city groups and mean (America Online and Internet) on-line totals. The
alI-CVD category was derived by combining coranary heart disease, hyperten- through support group participation.
sion, and stroke conditions. Alcoholism, although unquestionably the condition Judges' ratings were obtained from four health care
characterized by the highest support levels, was excluded because its extreme experts indicating, on a scale of 1 to 7, to what degree each
value would have suppressed all standard scores. CFS = chronic fatigue
syndrome; MS = multiple sclerosis; CVD = cardiovascular disease. description accurately depicted each of the 20 diseases or
the patients that suffered from them. All judges had at least
a master s degree level of training in nursing, public health,
or medicine. One rater was an MD; the three other raters
(one Phi) in nursing, one MS in nursing, and one MS in
public health) were nurses on faculty at a large teaching
Study 3: Identifying Correlates of hospital. Overall, agreement among the judges was ade-
Support Seekmg quately high, yielding a mean alpha of .72 across the 16
Social comparison theory asserts that affiliative behaviors items. We averaged each rating across judges and com-
increase in times of uncertainty or anxiety. The difficulty in puted subsequent correlations with support levels to iden-
predicting behaviors on the basis of such considerations is that tify which factors, if any, were associated with support
the experience of anxiety issues from myriad causes--embar- seeking.
rassment, threat to life, pain, anticipated pain, financial bur- As shown in Table 4, having an illness that is embar-
den, and so on. Our goal in this study was to identify sources rassing, socially stigmatizing, or disfiguring leads people to
of anxiety relevant to patients' experiences of illness in order seek the: support of others with similar conditions. The
to understand which, if any, of these sources would be related most striking associations, then, between support seeking
to support seeking. Three broad areas of investigation served and illness features centered around the interpersonal con-
as the conceptual foundation of our inquiries: patient charac- sequences of illness: Conditions described as embarrassing,
teristics, (both psychological and demographic), health care socially stigmatizing, and disfiguring were associated with
burden (aspects of illness that increase medical care usage), higher levels of support of both kinds. In fact, embarrass-
and social burden (the interpersonal dimensions of the illness ment around discussion of the illness emerged as the stron-
experience). The goal was to clarify whether support seeking gest association with support of both kinds. This pattern of
was primarily motivated by personal, social, or health-care- results, on the surface, conflicts markedly with prior work
induced anxiety, in social comparison theory. Embarrassment has been
A number of personal factors are involved in care- widely presumed to weigh against affiliative behavior
seeking behaviors. For instance, some segments of the (Sarnoff & Zimbardo, 1961; Teichman, 1973), yet alien-
population exhibit higher levels of concern about their ation from one's usual support network may be precisely
health status. The elderly and women, for example, use the kind of social anxiety that in turn increases the value of
health care services more extensively than do young adults the mutual support context.
and men (Aday & Andersen, 1974). AA participants with Aspects of illness associated with cost of treatment
unsupportive social networks exhibit higher adherence lev- and loss of life were positively associated with support
els to the self-help program (Tucker, 1995). Individual seeking in the city groups but not in the on-line forums.

February 2000 • American Psychologist 2l3


support groups between cities and (b) the tendencies ot
Table 4 patients with certain conditions to seek or not to seek
Correlates of Mutual Support: Patient, Illness, and support, particularly after adjusting for prevalence.
Social Aspects Comparable patterns emerged in the on-line domain.
Amount of on-line Amount of mutual In that case, a modest relationship was found between the
Rating item support activity (ranked) support (ranked) two venues of virtual social exchange. The highest levels of
support activity were exhibited by sufferers of multiple
Health care salience sclerosis, chronic fatigue syndrome, breast cancer, and
Cause known -.37 -.14 anorexia. The lowest activity levels were observed for
Patient must manage - . 13 -.01 sufferers of chronic pain, ulcer, hypertension, and emphy-
How disabling .04 .01
Costliness of sema. On-line and face-to-face support patterns were sig-
treatment .22 .52* nificantly correlated, suggesting that broad tendencies to
Attitude importance .40* .34 seek support do vary by diagnostic category. Standardized
A terminal illness .18 .38** measures of face-to-face and on-line support, when col-
Patient characteristic lapsed, revealed a broad picture of variations in support
Related to aging -.32 .10 seeking by diagnosis. Alcoholism, cancer, AIDS, depres-
Woman's illness .29 -.04 sion, and diabetes are conditions that have given rise to the
Friendlypatients -.31 -.13 formation and maintenance of mutual support forums.
Social burden These tendencies, according to correlations with
Disfiguring .34 .51 * judges' ratings, may be spurred by the interpersonal con-
Embarrassing .43" .67*
sequences of illness, specifically, embarrassment, stigma,
Symptoms
noticeable - . 17 -.14 and disfigurement. Actual groups were unique in their
Constitutes a stigma .30 .43** association with conditions rated as terminal and costly to
treat. This kind of seriousness index was not evident in
Note. Ranks of support behaviors and publications reflect that a rank of 1 is motivating on-line support. On-line forums appear to be
assignect to the lowest value, and higher rank values are assigned to higher
variable values. For all figures, n = 20. slightly more oriented around conditions poorly understood
* p < .05. ** p < .10 (two-tailed, all correlations are based on the Spear- and somewhat overlooked by the medical community.
man rank correlation coefficient). Those confronted with grave concerns may feel more
acutely the need to experience the physical presence, the
validation, and the sense of belonging that come with
actual encounters. Virtual support may have its limits.
According to social comparison theory, in conditions
The threat of death and the experience of costly medical of uncertainty or anxiety, affiliative motivation should be
treatment are the two factors most highly correlated with increased, except under conditions of embarrassment. In
participation in face-to-face support groups. The personal particular, individuals would prefer the company of others
features grouped as patient characteristics showed no sig- who are in a similar situation when experts are absent.
nificant relations to support behaviors of any kind. None of These postulations are fitting in the case of the on-line
the personal characteristics we considered--friendliness of forums, in which a relative amount of anonymity is present,
patients, illnesses directly related to aging, or illnesses that and thus confiding can occur without immediate social
strike women--were associated with support seeking. This repercussions. In the case of the city support groups, how-
result stands in contrast to earlier findings by Taylor et al. ever, hypotheses about lowered support seeking in condi-
(1986) reporting higher participation rates by women. On- tions associated with embarrassment were pointedly dis-
line support was unique in its correlation with importance confirmed. These groups are populated by individuals
of patient's attitude to outcome. This pattern of findings whose illnesses, either by their very nature or as a result of
suggests that virtual support occurs at higher rates among treatment (e.g., mastectomy), have forced them to experi-
patients whose conditions, although not necessarily life ence embarrassment and social stigmatization. The serious-
threatening, are debilitating in ways less responsive to ness of their conditions, the weight of their illness impact,
purely medical care. and the degree of readjustment required under the circum-
stances suggest motives only partially captured by terms
Discussion like ambiguity and anxiety. In these cases, the patients'
The aim of these studies was to identify patterns of patient experiences set them apart from their immediate social
support, both in face-to-face encounters and through the setting and propel them toward others who have been
use of on-line options. The tendency to participate in sup- similarly marked.
port groups was highly consistent by category across cities. The findings surrounding support-group participation
The highest levels of support were found in the cases of suggest that laboratory investigations of social motives lack
alcoholism, AIDS, breast cancer, and anorexia, and the some ecological validity: It is not a great challenge for a
lowest levels of support were found in the cases of hyper- student to anticipate the experience of emban'assment and
tension, migraine, ulcer, and chronic pain. Wide disparities decline the opportunity to share this with another in a
were observed in (a) the overall tendency to participate in highly controlled lab study. The experience of embarrass-

214 February 2000 • American Psychologist


ment in everyday life, however, carries with it the ongoing tribution toward the psychosomatic literature focused on
burden of a barrier that results in chronic emotional arousal the relationship between personality and illness.
accompanied by the suppressed desire to talk with others. Another obvious extension of the research would fo-
Such social barriers represent a significant health risk cus on elucidating distinctions in disclosure styles between
(Cole, Kemeny, Taylor, & Visscher, 1996; Pennebaker, those on-line groups that include an authority figure and
1997). those that do not. Our results suggest that conditions lack-
On the basis of the observed patterns, anxiety is a ing some medical legitimacy are associated with higher
necessary but not sufficient condition for support seeking. participation levels. As the virtual community evolves, it
Heart attack survivors, for example, report high levels of may soon be possible to distinguish between the kinds of
anxiety in the aftermath of their attacks, feeling as though discourse that occur among patients that also have a doctor
their lives could have suddenly ended and may end in the present and the kinds of exchanges occurring when such an
near future (Cay, Vetter, Phillip, & Dugard, 1972), yet authority figure is lacking. Social comparison would indi-
cardiac patients are not seeking to share feelings with cate that group cohesion is higher when the authority is
others (ranking 15th in adjusted support). The marked lack absent. Changes in disclosure styles when authority figures
of support in heart disease patients is consistent with prior are present may shed valuable light on what patients feel
observations of personality profiles associated with that able to discuss with doctors and what they can't.
condition: The Type A construct portrays a hostile, inter- Another direction for future research concerns the
personally suspicious, hurried, or depressed temperament relationship between Internet support participation and
ill-suited to the kinds of disclosure that are standard in other indices of health and health-related behaviors. Recent
support groups (for a review, see Smith, 1992). studies have reported that higher rates of Internet use were
Conversely, the profile of the cancer-prone personality associated with poorer measures of social adjustment, in-
is one ideally suited to a support forum because of its cluding loneliness and smaller social circles (Kraut et al.,
characterization as friendly, cooperative, and tending to 1998). A constant concern in social-support research has
suppress expression of negative emotion (Greer & Watson, been the distinction between support network size and
1985; Temoshok, 1987). It is noteworthy that, although support network quality (Stroebe & Stroebe, 1996). Inter-
more women will die from heart disease every year, and net forums represent a new hybrid for participants in which
although more women are currently living with a history of size is large but quality is largely unknown. People suffer-
heart disease, our findings indicate that breast cancer pa- ing from illness benefit from social support. If Internet use
tients participated in support groups at rates 40 times higher is a substitute for actual emotional support, then patients
than all heart disease patients, male or female. may be engaging in shallow forms of exchange when more
substantial ties could be built face-to-face, to the peril of
Directions for Future Research both psychosocial and physical well-being. Comparisons
between virtual and actual social behaviors will provide
It is interesting that the striking differences in support insights about how the Internet contributes to the configu-
seeking between heart disease and cancer patients harken to ration of individuals' social worlds.
some of the traditional personality-situation debate. As the
Type A and cancer-prone constructs suggest, certain fea- Implications for Policy and Practice
tures of a "disease personality" may dictate how individu- As with other correlational designs, the results obtained in
als avoid or seek out others. Conversely, the very nature of this broadly based analysis of patient support groups are
the disease may differentially threaten friends of the person suggestive, not conclusive. Although strong correlations
with the disease. For example, one's friendship network were found between indices of social marginalization (em-
may be more frightened or helpless in hearing about cancer barrassment, disfigurement, stigma, and life threat) and
or AIDS than in learning that one of their own has high support-group participation levels, the reality of participa-
blood pressure or has suffered a heart attack (cf. Bolger, tion motives is most likely a more complex interaction of
Foster, Vinokur, & Ng, 1996; Petrie, Weinman, Sharpe, & illness, individual differences, and cultural norms. Founda-
Buckley, 1996). tions, hospitals, patients, and doctors can significantly alter
One way to gain insights about the validity of contro- the viability of support groups. The investigations convey
versial profiles such as Type A and the cancer-prone per- only a part of the picture. They do, however, indicate the
sonality would be through closer analysis of linguistic value of attempts to observe, in an ecologically valid way,
styles revealed in on-line forums. Disclosure styles have the social patterns of individuals who may not be aware
been linked to markers of immune function and cardiovas- that they or their activities are part of a larger movement.
cular reactivity (Christensen & Smith, 1990; Kamen- The value of the approach lies in observing social be-
Siegel, Rodin, Seligman, & Dwyer 1991). For example, a haviors, even collective ones, from an epidemiological
recent study of on-line disclosure styles found that consis- perspective.
tent with prior observations of cancer patients (e.g., An aspect of the support group picture that needs
Watson, Pettingale, & Greer, 1984), virtually no negative additional attention is analysis of the character and purpose
emotion was expressed in such forums (Davison & Penne- of the groups. Prior reports on other kinds of support
baker, 1997). Studies of disclosure styles associated with groups indicate that group purposes frequently evolve over
different patient populations will make a significant con- time into watchdog organizations, lobbying arms, or fund-

February 2000 • American Psychologist 215


raising outlets (Chesler & Chesney, 1995). When a support to t h e m - - s t o r i e s of similar experience and endurance.
group converts from one of emotional and informational These investigations indicate that support groups are par-
support into one of social activism, what does it do for ticularly valued by individuals whose lives and social iden-
members? The lifeline of member participation and group tities have been put at risk. A fuller appreciation of the
life in general is highly variable. As noted earlier, A A social context of illness enriches our theoretical under-
membership is a lifelong one. Other groups are more tem- standings of social support and social comparison, while
porary in orientation. As with illnesses, people have offering practical insights about a more appropriate match
schema about the duration of support needs. For psychol- between health care delivery and the health care sought by
ogists, the dynamics of these groups over time offer in- patients and their families.
sights about social theory and about patient needs. Both the methods and results of these studies have
The self-help movement, both in face-to-face and vir- relevance for a number of concerns common to all psy-
tual arenas, has tremendous therapeutic potential. Appar- chologists: social comparison, group formation, health
ently, relative increases in social marginalization result in a care, effects of stigma, and disclosure processes. The most
desire to compare notes with similar others, despite the interesting aspect of the study is also the most problematic:
experience of embarrassment. As such, it may be possible A constant concern for researchers is that balancing act of
to draw on the cohesive power that stigma apparently conducting research that draws on prior theoretical and
generates. Recruitment efforts for rehabilitation programs empirical foundations while asking questions interesting
or health behavior change may be more successful if ref- enough to have real-world relevance. Support groups con-
erence to one or more of the stigmatizing aspects of a stitute a category with fuzzy boundaries, and as such they
condition is made. Adherence over time may be increased make scientists uneasy. In the interest of elegance and
if medical programs integrate more opportunity for ex- experinaental control, we often prefer mutually exclusive
change around the human side of health and illness. Out- categories and singular causal models. The goal is usually
side health care, other marginalized groups, such as immi- to isolate the hypothesized active agent in a particular
grants, may be more effectively integrated with a modest phenomenon. At broader levels of analysis, though, such
push toward group involvement. approaches lack validity, ignoring the realities of a society
Although self-help and professional help are often in which richly overlapping categories are everywhere. In
perceived as mutually exclusive, the data indicate that such this case, the most rigorous methodology was also a less
perceptions are misleading: Over 60% of groups describing controlled one. Support groups cannot be replicated in the
themselves as self-help are professionally facilitated. This lab, but the tendency of some types of patients to seek each
apparent contradiction should be more fully explored. other's company more than other types of patients, despite
Group participants may not be resistant to professional the noise in the imperfect categorizations, emerges statis-
input; rather, they may need to speak and be heard about tically as a clear pattern replicated across cities. We believe
issues not addressed within the health care setting. Several that psychologists should be encouraged to err more often
important questions emerge from the lay and professional on the side of real-world complexity in order to serve more
perspectives on mutual support. What factors are important effectively the society they attempt to observe.
to patients helping patients, as opposed to professionals
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