Soc Psychiatry Psychiatr Epidemiol (2002) 37: 483–487
1007/s00127-002-0577-0
ORIGINAL PAPER
S. Seedat · D. J. Stein · M. Berk · Z. Wilson
Barriers to treatment among members
of a mental health advocacy group in South Africa
Accepted: 13 May 2002
■ Abstract Background As part of an international sur-
vey of mental health advocacy groups, information per-
tinent to patients’ concerns regarding their diagnosis
and treatment was gathered from South African mem-
bers of a depression and anxiety support group
(n = 404). Methods Questionnaires developed by
GAMIAN, an international consortium of advocacy
groups, were mailed along with explanatory letters and
self-addressed envelopes to South African members and
members in nine other countries, for completion. Of
1,000 questionnaires mailed in South Africa, 40.4 % were
returned. Results The sample comprised patient mem-
bers with anxiety-only (39 %), depression-only (8 %),
mixed anxiety-depression (26 %), and other diagnoses
(27 %). While one-third of respondents reported onset
of symptoms before the age of 20, most waited 3–5 years
before seeking help. After making contact with the
health system, respondents experienced further delays
in obtaining a correct diagnosis. In many instances, re-
spondents were poorly informed of diagnosis and treat-
ment (25 %), and nearly half of all respondents discon-
tinued treatment on account of side-effects. Conclusions
Attempts to improve awareness of mental illness, and
better communication between physicians and their pa-
tients, might help to break down some of the barriers
patients encounter when seeking help.
S. Seedat, MD ()
Department of Psychiatry
University of California San Diego
8950 Villa La Jolla Drive, Suite 2243
La Jolla, CA 92037, USA
Tel.: +1-8 58/6 22-61 26
Fax: +1-8 58/4 50-14 91
E-Mail: sseedat@ucsd.edu
S. Seedat · D. J. Stein
Department of Psychiatry
University of Stellenbosch
Cape Town, South Africa
M. Berk · Z. Wilson
Depression and Anxiety Support Group of South Africa
DOI 10.
■ Key words mental health – survey – treatment
Introduction
Anxiety and depression are highly prevalent in primary
care practice, yet they are often underdiagnosed and un-
dertreated disorders, associated with high comorbidity
and increased health care utilization [1, 2]. Despite the
considerable costs associated with (i) treatment, (ii) re-
duced work productivity, (iii) absenteeism, and (iv) sui-
cide, public knowledge of these disorders (mental health
literacy) is lacking. Negative attitudes and belief sys-
tems, which hinder recognition by clinicians and appro-
priate help-seeking by patients, are common [3].
GAMIAN (Global Alliance of Mental Health and Ad-
vocacy Networks), an international consortium of men-
tal health patient advocacy groups was founded in 1997
in an effort to dispel stigmas associated with mental ill-
ness and to create an awareness of available treatment
options. To accomplish this objective, a survey was con-
ducted between June 1997 and March 1998 to measure
the incidence of those factors which might impact neg-
atively on treatment-seeking, and to examine the rela-
tionship of patient and health care provider in the diag-
nosis and treatment of mental illness. The survey
focused on two areas: (i) delays in help-seeking and bar-
riers to help-seeking, and (ii) side-effects associated
with treatment and effects on treatment adherence.
The survey took the form of mail self-report ques-
tionnaires administered to advocacy group members
with mood and anxiety disorders in ten countries (Ar-
gentina, Austria, Belgium, Great Britain, France, Italy,
South Africa, Sweden, Switzerland, and the United
States). Patient questionnaires comprised 35 items on
life history, diagnosis, treatment, and treatment-seeking
behaviours. Data obtained from a total of 3,516 respon-
dents indicated delays in help-seeking in all cohorts and
all countries, with time to initial help-seeking inversely
SPPE 577
related to the age of onset of illness. Sixty per cent of re-
spondents had a median delay of 8 years before seeking
484

treatment, while 40 % sought treatment in the same year Table 1 Demographic characteristics
as the onset of the disorder [4].
S.A. Total sample
This article examines the data from South African re-
spondents (n = 404). The Depression and Anxiety Disor- Sex
ders Support Group of South Africa was responsible for Male 20.7% 31.3%
mailing questionnaires to its members. This organisa- Female 79.4 68.7
tion was initiated in 1995 to increase public awareness of Age
anxiety and mood disorders, to disseminate informa- 10–34 27.3% 24.5%
35–49 46.8 40.6
tion and to provide support to consumers. The group 50–64 22.3 26.0
also actively lobbies on behalf of consumers. Two sepa- 65 + 3.8 8.9
rate questionnaires were sent out, one for patients and Education (years)
one for family members. Data from the patient survey 0–11 26.1% 17.6%
are reported here. 12–15 54.3 46.2
16 + 19.6 36.2
Employment
Student 4.8% 7.3%
Subjects and methods Working 54.0 44.8
Homemaker 20.5 13.6
Self-explanatory letters and self-addressed envelopes accompanied Retired 5.5 13.1
questionnaires. Questionnaires were available in English only. Ac- Other 15.3 21.1
cording to 1996 Census figures, the English literacy rate for South Marital status
Africans is 90 % (defined as at least 15 years of age with 4 years of ed- Married 62.8% 53.2%
ucation or more) [5]. A second mailed questionnaire and a reminder Separated/Divorced/Widowed 18.1 18.8
postcard was used to enhance response. One thousand questionnaires Never married 19.1 27.9
were initially mailed out to members country-wide, with 404 com-
pleted questionnaires returned by the end of the study (response Total (n) 404 3,516
rate = 40.4 %). Response rates in other countries ranged from 17.5 %
(France) to 84 % (United States). No attempt was made to distinguish
between non-response due to refusal and non-response due to other
reasons (e. g. inability to complete). Identifying details were removed Table 2 Delays in help-seeking
from all questionnaires prior to being processed centrally. Results
were analysed separately for each country (within-group analysis) S.A. Total sample
and also pooled across countries (between-group analysis).
Age of symptom onset (years)
0–12 13.8% 18.9%
13–19 19.0 25.3
Results 20–29 25.5 26.6
30–39 25.2 15.1
■ Demographic characteristics 40 + 16.6 14.1
Median 26.0 21.0
Amount of time to first seek help
Table 1 compares the demographic characteristics of Same year 37.4% 36.4%
South African (S. A.) respondents with the total cohort 1–2 years 20.7 19.8
of respondents (all countries). Ethnicity of respondents 3–5 years 16.2 10.8
was not recorded. The preponderance of females 6–10 years 7.7 11.6
(79.4 %), married respondents (62.8 %), and respon- 11 + years 18.1 21.4
Median 1.0 2.0
dents aged 35–49 years (46.8 %) in the S. A. cohort, par-
Common reasons for delay in help-seeking
alleled findings in the cohort as a whole. Did not know where to go 33.2% 36.7%
Wanted to handle on own 30.9 34.4
Wrong diagnosis 29.5 13.7
■ Age of symptom onset and amount of time Embarrassment 22.2 30.5
to first seeking help

The median age of symptom onset for S. A. respondents
was 26.0 years compared with 21.0 years for the cohort
as a whole (Table 2). The median S. A. respondent re-
ported waiting 1.0 year, while the median U. S. respon-
dent waited 4.0 years, before seeking treatment. Less
than 40 % of S. A. respondents sought treatment in the
same year as the first onset of the disorder, consistent
with findings in the total cohort. Among S. A. respon-
dents, and among respondents from all other countries,
the speed of initial help-seeking was inversely related to
age of onset of illness. The main reasons cited for delays
in help-seeking were not knowing where to go (33.2 %),
wanting to handle the problem on one’s own (30.9 %),
being given the wrong diagnosis (29.5 %), not finding an
understanding professional (29.5 %), and embarrass-
ment (22.2 %) (Table 2). Less common reasons cited
were fear of medication (20.5 %), lack of family support
(11.2 %), mistrust of doctors (10.7 %), and belief that
treatment would not help (9.6 %), consistent with find-
ings in the cohort as a whole.
 485

■ Diagnosis, treatment effects, and treatment drop-out origin of the group sampled, which started off as an ad-
vocacy group for panic disorder patients in S. A.
Diagnosis The median time spent in treatment before being
given a correct diagnosis was 1–2 years, corresponding
More than 40 % of S. A. respondents had seen up to four to the length of time for the cohort as a whole. About
doctors before receiving a correct diagnosis (based on 78 % of S. A.respondents (82 % in the total cohort) stated
respondents’ perceptions of ‘correct’ diagnosis) (Table that their diagnosis and treatment had been explained
3). The disorders represented in the sample comprised to them, and 54 % of S. A. respondents (66 % in the total
anxiety-only (39 %), depression-only (8 %), mixed anxi- cohort) had been suitably informed of possible side-ef-
ety-depression (26 %), and other disorders, e. g. bipolar fects. Respondents rated self-help groups, psychiatrists,
disorder/undiagnosed disorders (27 %) (Fig. 1). The low psychologists, newspapers/magazines, television/radio,
prevalence of patients with ‘depression-only’ relative to and family doctors, in that order, as the most important
patients with ‘anxiety-only’ likely reflects the historical sources for helping them arrive at a current under-
standing of their present condition. It is not surprising
that self-help groups top the list as the most important
Table 3 Diagnosis, treatment effects and drop-out rates source of help, considering all respondents were re-
cruited from a self-help organisation. In the cohort as a
S.A. Total sample whole, psychiatrists and psychologists were rated as
Incorrect diagnosis most important. About 70 % of S. A. respondents (64 %
Per cent of cases where up to four 43.4% 35.1% in the total cohort) joined a support/advocacy group to
doctors in succession did not provide get help, while 58 % (66 % in the total cohort) joined in
a correct diagnosis order to learn more about their illness.
Length of time to get correct diagnosis
Less than 1 month 16.9% 24.7%
1–6 months 17.8 16.3 Treatment
6–12 months 12.8 8.1
1–2 years 7.9 9.6 Once a correct diagnosis had been made, treatments
More than 2 years 44.6 41.4 recommended during the most recent help-seeking at-
Median 1–2 years 1–2 years tempt included medications (89.5 % of S. A. respondents
Number of doctors visited without vs. 87.8 % of all respondents) and psychotherapy (28.8 %
correct diagnosis
1 25.2% 27.4%
of S. A. respondents vs. 38.1 % of all respondents). As
2 14.0 21.7 shown in Table 3, 54 % of S. A. respondents who received
3 17.5 15.9 medications (46.1 % in the total cohort) and 14.9 % who
4+ 43.4 35.1 received psychotherapy (18.2 % in the total cohort) per-
Median 3.0 3.0 ceived these treatments to be effective (‘quite a bit’ or ‘ex-
Perceived treatment effectiveness tremely effective’). In addition, 23 % of S. A. respondents
Medication only 54% 46.1%
Psychotherapy only 14.9 18.2 believed (incorrectly) that the state/government pro-
Treatment drop-out rates
vided financial reimbursement for all medications (30 %
Medication only 18.6% 16.8% in the total cohort), while 32 % (30 % in the total cohort)
Psychotherapy only 14.0 16.9 believed (incorrectly) that private health insurance cov-
Drop-out rates because of side-effects 45.6% 46.1% ered all medications.
Common side-effects associated
with lifetime treatment drop-out
Anxiety/irritability 88.9% 63.7% Drop-out
Agitation 88.2 60.4
Fatigue/low energy 70.5 68.7
Seventeen per cent of respondents reported that they
Loss of sex drive 70.3 50.7 dropped out of treatment during their most recent help-
seeking attempt. Treatment drop-out rates were as fol-
lows: (i) those receiving medication only (18.6 %), (ii)
those receiving psychotherapy only (14 %), (iii) those re-
ceiving vitamins (30.4 %), and (iv) those receiving herbs
(23.1 %). Common reasons for dropping out were: (i)
thinking one could handle the problem on one’s own
(25.5 %), and (ii) fear of having to depend on medica-
tions (15.5 %). In the cohort as a whole, the top reasons
were: (i) thinking one could handle the problem on one’s
own (33.3 %), and (ii) fear of what others might say
(23.5 %). Almost 25 % of S.A. respondents (20 % in the
total cohort) believed that seeking treatment was an in-
dicator of personal failure. Treatment-related side-ef-
Fig. 1 Most recent diagnosis fects accounted for 45.6 % of the lifetime drop-out rate
486
among S. A. respondents. The most commonly reported
side-effects resulting in drop-out were: (i) anxiety/irri-
tability (88.9 %), (ii) agitation (88.2 %), (iii) fatigue/low
energy (70.5 %), and (iv) loss of sex drive (70.3 %) (Table
3).
Discussion
The length of time to receiving treatment correlated
with the age of onset of illness for the cohort as a whole.
Although one-third of S.A respondents had onset of
symptoms before 20 years of age (44 % of the total co-
hort), there was a lag of at least 3–5 years before they
sought help. This is consistent with data from the Na-
tional Comorbidity Survey in the U. S. A., a general pop-
ulation survey of 8,098 respondents, where the median
delay time was between 6 and 14 years after the first on-
set of mood, anxiety, and addictive disorders [6]. Proba-
bility of treatment contact was also inversely related to
age of onset of illness, with delays and low overall prob-
ability of lifetime treatment contact especially likely
among people with childhood-onset mood and anxiety
disorders.
The chief reasons cited for delays among S.A. re-
spondents included not knowing where to go, and want-
ing to handle the problem on one’s own. Such lack of
timely intervention is concerning, since an earlier onset
of anxiety or depression is likely to be associated with
greater severity and persistence, as well as comorbidity
with other disorders [6–8].
Upon entering the treatment system, there was a fur-
ther lag of 1–2 years before respondents were correctly
diagnosed. Once correctly diagnosed, 25 % were not ad-
equately informed of their diagnosis, while 50 % were
not informed of potential side-effects. Treatment drop-
out on account of side-effects occurred in almost half
(45.6 %) of all respondents. Negative perceptions about
medication might account for respondents’ failure to
seek medical help and lack of compliance with medica-
tion [9]. Improved communication between physicians
and their patients could potentially lower this rate of
medication discontinuation.
While at least half of all respondents perceived med-
ication treatments to be effective, only 15 % perceived
psychotherapy treatments to be effective. These percep-
tions might have impacted, to some extent, on the lower
drop-out rates observed in those treated with medica-
tion only. Drop-out rates were, however, lowest when
medication was combined with psychotherapy. Al-
though not systematically evaluated, psychotherapy
treatments in the S. A. cohort would have largely com-
prised ‘supportive’ rather than ‘cognitive-behavioural’
interventions. In addition to medication and psy-
chotherapy, respondents were also asked to rate the ef-
fectiveness of ‘natural’ remedies, such as vitamins and
herbs. Seven per cent of S.A respondents (2.2 % in the to-
tal cohort) rated these to be effective.
Beliefs about causality of illness are known to alter
patterns of help-seeking and response to treatment [10,
11], and it has been suggested that where patients lack
specific knowledge about illness, there is a reliance on
general belief systems, and attribution to lifestyle and
environmental stresses [12]. Solutions are then likely to
be sought in ‘natural’ remedies and changes in lifestyle,
rather than in medical or psychological interventions.
Predictors of drop-out were also examined for the co-
hort as a whole. Significant predictors of drop-out for
any reason were: (i) recent diagnosis of anxiety only or
depression only (χ2 = 28.46, OR = 1.8, p < 0.001), and (ii)
treatment with psychotherapy only (χ2 = 72.95, OR = 4.1,
p < 0.001). Predictors of initiation and adherence to
treatment have been reported on in a previous paper
[13]. Predictors of initiation by respondents included
higher levels of education, having received explanations
about the diagnosis, and having pharmacotherapy rec-
ommended to the respondent. Predictors of adherence
to therapy included male gender, receipt of pharma-
cotherapy, and presence of medical insurance cover.
Finally, it must be said that although many of the
findings presented here mirror the findings of the nine
other participant countries, the views of the advocacy
group might not be representative of the S. A. popula-
tion. The ethnicity of respondents was not recorded;
however, a survey of the Depression and Anxiety Disor-
ders Support Group at the time found that 96 % of its
members were White [14]. Thus, whilst the majority of
South Africans are Black and economically disadvan-
taged, the population surveyed here was predominantly
White and middle-class. This predominantly middle-
class composition was mirrored in the sample as a
whole. Had the advocacy group contained more Black
and working-class members, differences between S. A.
and other countries might have been considerably
greater. Since its inception, however, the Depression and
Anxiety Disorders Support Group has worked hard to
increase its membership in all sectors of the community.
Conclusions
Anxiety and mood disorders are among the most preva-
lent of psychiatric disorders in primary care, yet many
go undetected or are misdiagnosed by physicians. The
clear divide between public and professional beliefs
about these disorders may have negative, far-reaching
consequences [15]. Physician commitment to maximis-
ing early detection and treatment should include efforts
to reduce stigma, provide an accurate diagnosis, and
better inform patients and public of available treatment
options and potential adverse effects. Furthermore,
identification of positive and negative factors that im-
pact on the help-seeking patterns of patients might con-
tribute to improving overall patient outcome.
■ Acknowledgements The authors wish to thank the Depression
and Anxiety Support Group of South Africa and all other participat-
ing advocacy groups. The survey reported here was supported by an

unrestricted educational grant from Bristol-Myers Squibb to
GAMIAN (Global Alliance of Mental Illness Advocacy Networks), and
was conducted under the direction of Ronald Kessler, Ph. D., Profes-
sor, Department of Health Care Policy, Harvard Medical School. For a
complete list of reports from the survey or more information about
GAMIAN, contact Mary Guardino, Freedom From Fear, 308 Seaview
Avenue, Staten Island, N. Y. 10 305 (USA).
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