Mubarokah K, Nurjanah N, Handayani S, Astarini HR, Maharani AW, Masitoh D, et al. Tuberculosis
literacy and stigma: female activists in five areas with the lowest treatment success rate in Semarang,
Indonesia (Original research). SEEJPH 2022, posted: 20 March 2022. DOI: 10.11576/seejph-5330

P a g e 1 | 12

ORIGINAL RESEARCH

Tuberculosis literacy and stigma: female activists in five areas with the lowest
treatment success rate in Semarang, Indonesia

Kismi Mubarokah1, Nurjanah Nurjanah1, Sri Handayani1, Hermin Rhema
Astarini1, Adelia Wahyuningtyas Maharani1, Dewi Masitoh1, Merisha Dea

Salisa1, Sri Dian Yulianah1

1 Faculty of Health Science, Universitas Dian Nuswantoro, 50131 Semarang, Central Java, In-
donesia.

Corresponding author: Kismi Mubarokah;

Address: Faculty of Health Science, Universitas Dian Nuswantoro, 50131 Semarang, Central
Java, Indonesia.

E-mail: kismi.mubarokah@dsn.dinus.ac.id

P a g e 2 | 12

Abstract

Background: The Case Detection Rate of Tuberculosis (TB) in Semarang city increased from
2014 to 2018, while the Treatment Success Rate declined. Low literacy can trigger stigma in so-
ciety, especially among women, resulting in low awareness of suspect TB for treatment.

Objectives: The aims are to analyze the correlation between TB literacy and stigma expressed
among female health and social activists.

Methods: Cross-sectional research was conducted in five public health centers with the lowest
Treatment Success Rate (TSR). A valid and reliable self-administered online questionnaire col-
lected data that involved 391 respondents predominantly in the urban areas. Rank Spearman test
was used to analyze the data with a confidence interval of 95%.

Results: The respondents were mostly elderly (>45 years; 61.6%), health activists with high
school graduation, didn't have a family with a health background and did not work. Most of them
showed low TB literacy (Me:60; SD±6.62) and high stigma (Me: 76; SD±10.36). They were also
difficult to access, understand, assess, and apply information about TB. Age (p.0.03; r.-0.110),
being health activist (p.0.081; r.-0.088), and TB literacy (p.0.001; r.0.165) correlated signifi-
cantly with stigma.

Conclusions: Public Health Center's officers require inserting literacy education materials re-
lated to stigma to form a comfortable support system for persons with TB.

Keywords: literacy, stigma, tuberculosis.

Conflicts of interest: None declared.

Acknowledgment: Many thanks and appreciation to Semarang City of Health Governments, the
5 Public Health Centres, the Faculty of Health Science UDINUS, and AHLA (Asia Health Liter-
acy Association) Indonesia Country Office Universitas Dian Nuswantoro.

P a g e 3 | 12

Introduction

Case Notification Rate (CNR) per 100,000
population in Indonesia from 2015- 2018
shows an increase from year to year. Over the
past four years, 130 cases (2015) have in-
creased to 139 (2016), 161 (2017), and 193
cases (2018) (1). This high CNR is one of the
indicators of program success because of
many cases of TB that can be identified and
treated immediately. Unfortunately, the
Treatment Success Rate (TSR) decreased
during that period: From 85.8% in 2015 to
85.0% in 2016, 85.1% in 2017, and 80.12%
in 2018 (1). This situation can impact the ac-
cumulation of people with TB, both who are
still in the treatment process and those who
have not started treatment. This means the
general community's risk of exposure to my-
cobacterium tuberculosis increases even if
they are disciplined and use masks. Central
Java is one of the provinces with an increase
in CNR from 118 in 2016 to 115.4 per
100,000 population in 2018 (2), whereas, at
the same time, the TSR decreased from
86.0% (2016) to 83.7% (2018), far from the
target of achieving a treatment success rate of
90%. Among 37 public health centers in Se-
marang City, the five with the lowest treat-
ment success rate were Kedungmundu,
Bangetayu, Pegandan, Ngemplak Simongan,
and Purwoyoso (3). In addition to the high
rates of treatment dropout due to inadequate
knowledge of drug side effects, this decrease
in TSR shows the inability and unwillingness
of patients and suspects regarding TB due to
the high stigma in the surrounding commu-
nity (4). Low social support emerges from
stigma associated with low literacy (5).
“Women in the Urban Village” (PKK) is a
voluntary organization active in the empow-
erment and welfare of families (PKK).

As one of the leading programs of the PKK,
they have an essential role in the field of
health (6). In TB prevention, they should
have good TB literacy to provide social sup-
port for the community in the region, espe-
cially for TB patients. Health literacy is a per-
son's ability to access, understand, assess and
apply information (7). Literacy is one factor
that influences the occurrence of stigma in
society. Common public domains are social
distance, traditional prejudice, exclusionary
sentiments, negative affect, treatment carryo-
ver, disclosure carryover, perceptions of dan-
gerousness (8). Some of these terms need an
explanation: Social distance describes that
someone tries to avoid a person with TB
(PWTB). It is a traditional stereotype and
prejudice believing all people with TB are
less valuable. Exclusionary sentiments tend
to separate PWTB from everyone else or
deny them their rights. Negative affects refer
to emotional reactions such as disgust or ha-
tred toward PWTB. Treatment carryover
means being afraid of people knowing they
were treated for TB in the past. The perceived
need for secrecy may linger after a person re-
covers. Disclosure carryover is when people
are afraid of their reactions if known to have
TB. Perceptions of dangerousness are the
idea that PWTB somehow represents a risk to
society (8).

Materials and Methods

A total of 391 respondents filled out valid
and reliable online questionnaires (see An-
nex) containing questions about demographic
variables, TB literacy (20 questions), and
stigma (20 questions). Respondents were the
total number of women active in PKK in 5
public health centers. These primary data are
bivariate and analyzed by the Rank Spearman
Test (95% CI). The cross-sectional design of

P a g e 4 | 12

the study was conducted with the permission
of the ethics commission No: 417/KEPK-
FKM/UNIMUS/2020.

Results

Respondents of this study are divided as 24%
of Bangetayu, 6.1% of Ngemplak Simongan,
23.5% of Kedungmundu, 9.2% of Purwoy-

oso, and 36.8% of Pegandan. Most of the re-
spondents were elderly (>=45 years old,
61.6%) and with high school graduation
(70.6%). A majority (80.1%) were health ac-
tivists and didn't have a family with a health
background (71.1%). Only a small percent-
age of the respondents were teachers
(11.0%), the majority housewives (71.1%),
for details, see Table 1.

Table 1. Demographic summary of respondents (n = 391)

Variable Frequency Percent (%) Mean; SD
Age

Middle age
Elderly

150
241

38.4
61.6

47.8; 9.06

Education Level
< Senior High School
Diploma
Bachelor

276
41
74

70.6
10.5
18.9

Type of Work
Health Activist (Cadre)
Non-Health Activist

313
78

80.1
19.9

Field Background
Health
Non-Health

113
278

28.9
71.1

Occupation
Housewife
Private Employee
Teacher

278
70
43

71.1
17.9
11.0

Good literacy is more owned by respondents
with health background (43%; p=0,621) and
health activists (41.5%, p=0.935). However,
the health activists had low specific Tb liter-
acy (58.5%) and high stigma (56.5%). Re-
spondents with a health background had low
Tb literacy (56.6%) and high stigma (64.6%).
The group of respondents with stigma was
more elderly (59.3%; p=0.028). Most of them
were health activists (56.5%; p=0.214) and

had high school education (51.1%;
p=0.274).Housewives made up for 56.1%
(p=0.763). Stigma was related to low TB lit-
eracy and dominated by not health activist re-
spondents. Some of the scores on TB literacy
variables were low, especially in providing
an assessment of littering and coughing be-
havior, able to spread pulmonary TB. For de-
tails, see Table 2.

P a g e 5 | 12

Table 2. Percent item distribution of TB literacy

Item % very
difficult

% quite
difficult

% quite
easy

% very
easy

1. Find information about pulmonary TB 1.2 8.2 67.8 22.8
2. Find out how to prevent pulmonary TB 0.8 9.2 73.7 16.3
3. Finding out where to get pulmonary TB
treatment

0.3 2 74.4 23.3

4. Get information about the risks of
smoking against pulmonary TB

2 5.1 72.4 20.5

5. Find a place to have a TB screening 0 1.8 74.2 24
6. Understand information about pulmo-
nary TB from the media

0 5.6 77.2 17.2

7. Understand information about the
symptoms of pulmonary TB from health
Workers

0 3.8 79.8 16.4

8. Understand health warning information
about the dangers of smoking

0 4.3 73.7 22

9. Understand that pulmonary TB requires
complete treatment

1.3 7.2 71.6 19.9

10. Providing an assessment of the home/
living environment can help you stay
healthy (e.g. keeping it damp, getting
sunlight and fresh air in and clean)

0 4.6 79.3 16.1

11. Provide an assessment of why immun-
ization is necessary to prevent pulmonary
TB

0.3 7.9 76.7 15.1

12. Providing an assessment of littering &
coughing behavior can spread pulmonary
TB

1 21.5 65.2 12.3

13. Provide an assessment of the signs or
symptoms of pulmonary TB which re-
quires examination at a health service

1 18.7 70.3 10

14. Self-examination to confirm diagnosis
of TB if needed

2.2 20.5 67.8 9.5

15. Treatment for TB if needed 0.3 12 75.2 12.5
16. Make the decision not to smoke 12.3 32.7 36.6 18.4
17. Doing exercise regularly 2.3 16.4 63.9 17.4
18. Eating nutritious foods with attention
to diversity, including eating fruits and
vegetables

0.5 4.6 70.3 24.6

19. Maintain the living conditions (room,
boarding house, cottage or house) with
sufficient light, adequate ventilation and
not damp

0 6.6 67 26.4

P a g e 6 | 12

20. Drying the bedding to avoid humid
conditions

0.3 4.3 70.3 25.1

(n: 391; total score’s range: 43-80; Me: 60; SD: 6.618)

Table 3. Percent Item Distribution of Stigma

Item % SA % Ag % Nt % DA % SD
1. Some people do not want to eat/drink
with TB patients.

17.6 40.2 6.4 31.2 4.6

2. Some people stay away from TB pa-
tients.

5.7 16.6 7.4 62.9 7.4

3. Some people feel uncomfortable around
TB patients.

5.9 42.2 6.4 40.9 4.6

4. Some people do not want to come into
contact with TB patients.

2.3 21.5 6.4 63.4 6.4

5. Some people do not want to talk to peo-
ple with TB.

2.3 11.8 6.9 72.1 6.9

6. Some people do not want TB patients to
live around them.

2.3 9.5 7.2 70 11

7. If someone has TB, some people will
treat others differently for the rest of their
lives.

0.5 6.2 7.2 73.1 13

8. Some people do not want their
children to play around with TB patients.

5.4 46 4.4 37.3 6.9

9. Some people think that TB patients are
disgusting.

0.5 4.9 7.2 73.4 14

10. Some people are afraid of TB patients. 0.8 29.2 7.7 55.2 7.1
11. Some people do not want to eat/drink
with family with TB.

2.3 24.3 7.7 59.5 6.2

12. TB patients are dirty. 0.5 2.6 6.4 73.1 17.4
13. TB patients are a curse. 0.3 0.5 3.6 58.3 37.3
14. TB patients are embarrassing. 0.3 0.5 4.1 69.6 25.5
15. People with TB must have their
freedom limited.

0.3 9.5 4.1 72.5 13.6

16. TB patients are the result of wrong be-
havior and deserve punishment.

0.3 0.8 2.6 66.2 30.1

17. The TB patients must be
isolated/locked up.

0.8 5.6 2.8 73.4 17.4

18. I do not want to be friends with people
with TB.

0.8 5.3 2.6 72.6 18.7

19. TB patients are not allowed to mingle
with the community.

0.3 2.3 4.4 75.4 17.6

P a g e 7 | 12

20. TB patients should not be able to
work.

0.3 26.1 4.6 74.9 14.1

(n: 391; total score’s range: 31-100; Me: 76; SD: 10.36)

SA: Strongly Agree; Ag: Agree; Nt: Neutral; DA: Don't Agree; SD: Strongly Disagree

The stigma shown is relatively high in some
items. Most respondents did not want to eat/
drink with TB patients (8%), they stayed
away from TB patients (22.3%), they felt

uncomfortable around TB patients (48.1%),
they did not want their children to play
around with TB patients (51.4%).

Table 4. Result of rank Spearman bivariate test summary between
variables (n = 391)

Variables P value cc CI
Age 0.030 -0.110

95%

Cadre Status 0.081 -0.088
Education level 0.986 -0.001
Occupation 0.925 0.005
Field background 0.059 -0.096
TB Literacy 0.001 0.165

Based on the Spearman rank test there is an
association between TB literacy and stigma
(p.0.001; r.0,165). Age is also positively cor-
related with stigma. (p.0,03; r.- 0,110).

Discussion

Stigma against tuberculosis is a social deter-
minant of health (9). Stigma has a potential
impact on the health-seeking behavior of per-
sons with TB, reducing the level of mask use,
reducing the cure rate or increasing treatment
dropouts, and rising patient stress so that the
recovery rate also decreases (8). The number
of elderly respondents who stigmatize a per-
son with TB can be due to elderly's character-
istics. In old age, they often experience men-
tal problems such as patterns and attitudes to
life, feeling lonely, worthless, and increasing
emotions in the elderly (10). They also have
more leisure time because they usually no
longer work at this age. So they tend to spend

time with their neighbors to talk about vari-
ous issues, including a person with TB
around them. A cadre is a community mem-
ber who voluntarily assists in implementing
health programs in the community. Cadres
are more active in health programs than other
members of the community. According to the
Indonesian health department, cadres are lo-
cal citizens selected and reviewed by the
community and work voluntarily (6). In fact,
they have a significant role in creating a sup-
portive atmosphere for people with TB. How-
ever, this study shows that some cadre/health
activists still stigmatize persons with TB. The
cadre/ health activist can discover TB sus-
pects, be drug swallow supervisors, even act
as educators improving literacy and public
knowledge about tuberculosis. For example,
some previous studies increased knowledge
significantly in homemakers with high school
education (11). Stigma against TB in some

P a g e 8 | 12

areas still shows a reasonably high score,
even up to 32 and more. Factors significantly
associated with stigma are age and married
status (12). Our research shows thatrespond-
ents had difficulties finding and using infor-
mation about TB. Similar to the previous
study (12), where most workers in Semarang
city found it more challenging to find infor-
mation than to understand and to apply (13).
Today's society lives in the era of technology
where everyone has a device. Various infor-
mation, including health information, be-
comes effortless to find through websites, so-
cial media, chat rooms, etc. Unfortunately,
this flood of information makes it difficult for
the public to judge whether specific data is
fact or a hoax (14). Thus, health literacy is
necessary to make judgments and decide in
daily life regarding health care, disease pre-
vention, and health promotion to maintain or
improve the quality of life (15). The stigma
by the environment ofpersons with TB, espe-
cially by their families, can affect the healing
process. Patients need motivation, social sup-
port, and low stigma to complete treatment
(4,16). Public Health Centers are advised to
improve the TB literacy of female activists in
socialgroups like PKK so that community
stigma can be controlled. If activists have ad-
equate literacy, they will jointly influence the
general public to remove the stigma against
persons with TB. Moreover, counseling can
accompanypersons with TB during treatment
to stabilize their psychological condition
(17).Meanwhile, community leaders and reli-
gious leaders need to provide direction so that
the community can have a positive atmos-
phere, provide a supportive social environ-
ment for persons with TB and decrease
Multi-Drug Resistance.

Conclusions

The stigma shown towards persons with-
Tuberculosis (TB) needs to be reduced and
even eliminated to support TB patient treat-
ment. Women activists in a social group
called “Women in the Urban Village” (PKK)
with adequate literacy will influence the
wider community not to stigmatize persons
with TB. Also, counseling TB patients them-
selves is needed to overcome psychological
pressure due to stigma in society. With the in-
tervention from these two sides, the success
of TB treatment will be faster and easier to
achieve.

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Annex: Tuberculosis Literacy and Stigma Questionnaire

A. Demographic Variables
1. Public Health Center :
2. Community Health Activist : Yes/ No
3. Sub Sub District :
4. Address :
5. Name :
6. Gender : Male/ Female/ Other
7. Date Birth :
8. Age :
9. Education level :
10. Job status :
11. Social Media Type :
12. Health background of family :
13. If Yes, Who are they? : Father/ Mother/ sibling/
another, Mention please…………………..
B. Source of Information about TB
1. I've heard information about TB Yes/ No
2. Where do you get this information?
1. Poster
2. PHC
3. Social Media
4. Magazine
5. Newspaper
6. Television
7. Radio
8. Health Provider
9. Subdistrict Government
10. Website
11. Billboard
12. College
13. Others, Mention please………........
C. TB LITERACY

1. Find information about pulmonary TB
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

2. Find out how to prevent pulmonary TB
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

3. Find out where to get pulmonary TB treatment
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

4. Get information about the risks of smoking against pulmonary TB
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

5. Find a place to have a TB screening
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

6. Understand information about pulmonary TB from the media
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

7. Understand information about the symptoms of pulmonary TB from health work-
ers

1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy
8. Understand health warning information about the dangers of smoking

P a g e 11 | 12

1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy
9. Understand that pulmonary TB requires complete treatment

1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy
10. Providing an assessment of the home/ living environment can help you stay

healthy (e.g. keeping it damp, getting sunlight and fresh air in and clean)
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

11. Provide an assessment of why immunization is necessary to prevent pulmonary
TB
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

12. Providing an assessment of littering & coughing behaviour can spread pulmonary
TB

1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy
13. Provide an assessment of the signs or symptoms of pulmonary TB which requires

examination at a health service
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

14. Self-examination to confirm diagnosis of TB if needed
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

15. Make the decision not to smoke
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

16. Treatment for TB if needed
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

17. Doing exercise regularly
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

18. Eating nutritious foods with attention to diversity, including eating fruits and
vegetables
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

19. Maintain the living conditions (room, boarding house, cottage or house) with suf-
ficient light, adequate ventilation and not damp
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

20. Drying the bedding to avoid humid conditions
1. Very Difficult 2. Quite Difficult 3.Quite Easy 4. Very Easy

D. STIGMA
(SA : Strongly Agree ; Ag : Agree; Nt : Neutral; DA : Don't Agree; SD : Strongly Disagree)

1. Some people do not want to eat/drink with TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

2. Some people stay away from TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

3. Some people feel uncomfortable around TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

4. Some people do not want to come into contact with TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

5. Some people do not want to talk to people with TB
1. SA 2. Ag 3.Nt 4. DA 5. SD

6. Some people do not want TB patients to live around them
1. SA 2. Ag 3.Nt 4. DA 5. SD

7. If someone has TB, some people will treat others differently for the rest of their lives
1. SA 2. Ag 3.Nt 4. DA 5. SD

8. Some people do not want their children to play around with TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

P a g e 12 | 12

9. Some people think that TB patients are disgusting children to play around with TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

10. Some people are afraid of TB patients
1. SA 2. Ag 3.Nt 4. DA 5. SD

11. Some people do not want to eat/drink with a family with TB
1. SA 2. Ag 3.Nt 4. DA 5. SD

12. TB patients are dirty
1. SA 2. Ag 3.Nt 4. DA 5. SD

13. TB patients are a curse
1. SA 2. Ag 3.Nt 4. DA 5. SD

14. TB patients are embarrassing
1. SA 2. Ag 3.Nt 4. DA 5. SD

15. People with TB must have their freedom limited
1. SA 2. Ag 3.Nt 4. DA 5. SD

16. TB patients are the result of wrong behavior and deserve punishment
1. SA 2. Ag 3.Nt 4. DA 5. SD

17. The TB patients must be isolated/locked up
1. SA 2. Ag 3.Nt 4. DA 5. SD

18. I do not want to be friends with people with TB
1. SA 2. Ag 3.Nt 4. DA 5. SD

19. TB patients are not allowed to mingle with the community
1. SA 2. Ag 3.Nt 4. DA 5. SD

20. TB patients should not be able to work
1. SA 2. Ag 3.Nt 4. DA 5. SD