Perceptions of stigma among pulmonary tuberculosis patients in Thailand, and the links to delays in accessing healthcare

Abstract

Background

Delay in seeking care increases the morbidity and mortality in tuberculosis (TB) patients and leads to increased likelihood of transmission within the community. Stigmatisation is one of the influencing factors causing delay in accessing healthcare when experiencing symptoms of TB.

Objective

This study aimed to explore the relationship between TB stigmatisation and patient delay among pulmonary tuberculosis (PTB) patients.

Methods

A mixed methods study was undertaken among 300 randomly sampled participants who completed questionnaire surveys, supplemented by 25 in-depth interviews with purposively-sampled participants identified as delaying access to healthcare.

Results

Participants reporting higher perceived levels of TB stigmatisation demonstrated a longer duration of patient delay (p < 0.001). Qualitative data reinforced the view that perceptions of TB as being a disease carrying with it a stigma contributed to a delay in seeking healthcare. This was also exacerbated in patients with HIV-positive. Given that HIV-positive status is still subject to stigma in some parts of society, patients demonstrated additional reluctance to seek out healthcare if they were known to be HIV-positive whilst also experiencing symptoms of TB.

Discussion

The study highlights that accurate and objective information about TB is required to reduce societal stigmatisation related to the disease, thereby reducing the reluctance of patients to access healthcare.

Background

Tuberculosis (TB) is one of the most important infectious diseases and is established as one of the top 10 annual causes of death globally (World Health Organisation, 2019). It is caused by the airborne bacillus Mycobacterium tuberculosis complex that most often affects lungs (pulmonary tuberculosis (PTB)) but can also affect other parts of the body (extrapulmonary tuberculosis (EPTB)) (World Health Organisation, 2019).

Patient delay, defined as the duration between the first symptom onset and the first visit at health facility, is one of the major causes of an increased number of TB patients which results in increased morbidity and higher levels of transmission. Previous studies have reported that there are many factors associated with the delay, of which stigmatisation is one (Asefa and Teshome, 2014; Osei et al., 2015).

Stigmatisation can be defined as the identification of negative features that classify a person as different and worthy of separation from the group. It often leads the person to lose social status and face discrimination (Link and Phelan, 2001) and can be considered as one of barriers of seeking healthcare among patients with stigmatised diseases (Des Jarlais et al., 2006; Henry et al., 2016; Said et al., 2017; Saifodine et al., 2013). Tuberculosis is one of several stigmatised diseases, partly as a stand-alone condition, but also because of its relationship with HIV and AIDS – both of which continue to be stigmatised within some areas of society around the globe (Ngadaya et al., 2009).

Based on a mixed methods approach, this study investigated whether higher TB stigmatisation was related to longer patient delay and explained the hidden reasons among PTB patients in Nakhon Ratchasima Province, Thailand. This province is the country’s largest province by area where lies in lower north-eastern region adjacent to eight neighbouring provinces. Moreover, it is the country’s second-most-populous province with more than 2.7 million people.

Methods

Study population group and study design

This mixed methods study was undertaken among participants aged 18 years or over with newly diagnosed TB who were registered at nine hospitals in Nakhon Ratchasima Province, Thailand, between July and December 2018. Calculated by a formula for estimating the sample size in cross-sectional analytical study with the finite population (Daniel, 1999), 300 participants were randomly selected from 1137 TB patients (Department of Disease Control, 2018) to participate in questionnaire surveys based on a stratified random sampling and a simple random sampling. Twenty five participants with patient delay more than 30 days were then recruited to take part in in-depth interviews. Qualitative data collection ended when no new themes were emerging, and it was judged that data saturation had been reached. (Dworkin, 2012). Both surveys and interviews were undertaken in a private area whilst patients were waiting for appointments.

Data collection

A structured questionnaire – which was constructed based on the findings of a literature review – was used to collect data in quantitative surveys. Next, a semi-structured questionnaire based on the literature review and further questions arising during interviews were used to ask participants to gather in-depth or hidden information. Both questionnaires were first drafted in English and then translated to Thai which were then checked for back-translation by four bilingual experts. An original set of questions about TB stigmatisation from patient perspective including 12 items was previously validated with Cronbach’s alpha ranging from 0.88 to 0.91 (Moya et al., 2014). Furthermore, a translated set of questions in Thai was also validated with Cronbach’s alpha ranging from 0.86 to 0.90. The Thai set of questions was administered to all participants which the items were scored using a Likert scale with four levels: strongly disagree (1); disagree (2); agree (3); and strongly agree (4), with higher scores from the sum of scores from each of the 12 Likert items indicating higher perceived levels of stigmatisation.

Data analysis

Quantitative data were analysed by the Statistical Package for the Social Sciences (SPSS) version 25.0 (IBM Corp, 2017) using descriptive statistics (Süt, 2014), specifically frequency, percentage, mean, median, standard deviation, minimum, and maximum. Moreover, Mann–Whitney U test was used to investigate the relationship of TB stigmatisation and patient delay between both groups (Hart, 2001). For the purposes of the study, patient delay was defined as the duration between the first symptom onset and the first visit at health facility. Qualitative data from interviews were analysed by content analysis which were managed by Nvivo version 12 (QSR International Pty Ltd, 2018).

Ethical considerations

The Faculty of Health Sciences Research Ethics Committee, University of Hull, and the Ethics Committee on Human Research, Nakhon Ratchasima Provincial Public Health Office provided ethical approval for this study in 2018. An information sheet was provided to all participants, and informed consent was then obtained from all participants before undertaking data collection processes.

Results

Characteristics of participants

As shown in Table 1, 118 participants had patient delay (33.39%). Most participants were male in both groups. The median age of participants with delay was 57 years, compared with 49 years in those without delay. Most participants were married and had graduated at primary educational level. In terms of HIV status, most participants had been examined for HIV status. Five participants with delay had HIV-positive status (5.38%) while 4.73% of participants without delay had HIV-positive status.

Table 1.

Characteristics of participants with and without delay.

	PTB patients
Characteristics	With delay n (%)	Without delay n (%)
Gender
Male	77 (65.25)	115 (63.19)
Female	41 (34.75)	67 (36.81)
Age (years)
Median (minimum – Maximum)	57 (19–83)	49 (18–91)
Marital status
Single	11 (9.32)	42 (23.07)
Married	82 (69.49)	112 (61.54)
Widow	15 (12.71)	22 (12.09)
Divorced	10 (8.48)	6 (3.30)
The highest level of education
Illiterate	5 (4.24)	15 (8.24)
Primary education	86 (72.88)	87 (47.80)
Lower secondary education	12 (10.17)	34 (16.68)
Upper secondary education	14 (11.86)	33 (18.13)
Under graduation	1 (0.85)	8 (4.40)
Post-graduation	0 (0)	5 (2.75)
Examined for HIV test
Yes	93 (78.81)	148 (81.32)
No	25 (21.19)	34 (18.68)
If yes, the result is
Positive	5 (5.38)	7 (4.73)
Negative	85 (91.40)	133 (89.86)
Unknown	3 (3.22)	8 (5.41)

Stigmatisation and patient delay

Table 2 shows that participants with delay had higher median ‘TB stigmatisation score’ than participants without delay. The three questions scoring highest in the delay group included ‘feel bad when asked to keep distance from other people to avoid the transmission of TB germs’ (3.27; SD = 0.52), ‘feel guilty as you may have been affected by TB due to the habit of smoking, drinking alcohol, and not taking care of yourself’ (3.10; SD = 0.78), and ‘feel guilty because your family carries the burden of taking care of you’ (2.92; SD = 0.67), respectively. Similarly, in the group without delay, the same items were scored 3.01 (SD = 0.54), 2.85 (SD = 0.83), and 2.83 (SD = 0.73), respectively. The score on ‘fear telling your family that you have the disease’ was the lowest in both groups scoring 2.10 (SD = 0.87), and 1.94 (SD = 0.69) by participants with and without delay, respectively. Moreover, TB stigmatisation was associated with patient delay such that participants who had higher score on stigmatisation about TB were 1.08 times more likely to have longer delay than participants who had scored lower (95% CI of OR = 1.02–1.14) as shown in Tables 3 and 4.

Table 2.

Stigmatisation about TB among participants with and without delay.

	PTB patients
	With delay	Without delay
Stigmatisation about TB	Mean (SD)	Mean (SD)
Some people who have TB feel guilty because your family carries the burden of taking care of you	2.92 (0.67)	2.83 (0.73)
Some people who have TB feel bad when asked to keep distance from other people in order to avoid the transmission of TB germs	3.27 (0.52)	3.01 (0.54)
Some people who have TB feel lonely	2.55 (0.71)	2.20 (0.61)
Some people who have TB feel hurt with the way other people react when they learn that you have TB	2.86 (0.68)	2.57 (0.66)
Some people who have TB fear losing friends when you share the information that you have the disease	2.82 (0.62)	2.57 (0.68)
Some people who have TB are worried about the possibility of having AIDS too	2.55 (0.77)	2.21 (0.69)
Some people who have TB fear telling people outside of your family that you have the disease	2.79 (0.68)	2.51 (0.66)
Some people who have TB will choose carefully those people who you will inform about your condition	2.75 (0.72)	2.58 (0.71)
Some people who have TB fear going to TB clinic because other people may see you there	2.71 (0.72)	2.40 (0.63)
Some people who have TB fear telling your family that you have the disease	2.10 (0.87)	1.94 (0.69)
Some people who have TB fear telling other people about your condition because other people may think you have AIDS too	2.66 (0.72)	2.34 (0.63)
Some people who have TB feel guilty as you may have been affected by TB due to the habit of smoking, drinking alcohol, and not taking care of yourself	3.10 (0.78)	2.85 (0.83)
Median (minimum – Maximum)	34.50 (13–48)	30 (14–43)

Table 3.

Relationship between TB stigmatisation and patient delay by Mann–Whitney U test.

Factors	Group	N	Mean rank	Sum of rank	Mann–Whitney U test	Z	p
Stigmatisation	With delay	118	184.39	21,758.50	6738.500	−5.466	0.001*
Score	Without delay	182	128.52	23,391.50
	Total	300

Table 4.

Relationship between TB stigmatisation and patient delay by multiple logistic regression.

							95% CI for OR
Factors	B	SE.	Wald	Df	Sig	OR	Lower	Upper
Stigmatisation	0.076	0.029	7.166	1	0.007	1.079	1.021	1.142
score

Qualitative data demonstrated that stigmatisation influenced health seeking behaviour among TB patients, leading participants to avoid screening, diagnosis and treatment for TB. Most participants expressed that they did not want to seek TB screening test after they had the first TB-related symptoms because they were afraid to be disliked and/or discriminated against by other people who misunderstood the disease. Thus, they ignored and left their symptoms for a long time:

“There were only my family knowing I had TB. I did not tell my neighbours, colleagues, and other people because I feared that they might dislike, stigmatise, and discriminate me.”

“As a disgusting disease, I was afraid that people surrounding me would think and concern about my illness, TB. So, it made me think carefully about telling other people. The main reason was that I cared and was concerned about the people surrounding me and about their perspective and refection on me.”

Some participants expressed that they had faced with stigmatisation and discrimination from other people after being diagnosed with TB:

“After diagnosed with TB, I was stigmatised and discriminated by my employee. Due to living at the company, my employee told me to get out immediately and would not allow me to come back to the company.”

“I felt that staffs at this hospital did not like me. I felt like I was an abnormal person. They had more cautious when they touched me. It seemed that I looked like a wicked person. This was my true feeling that I wanted to express to the world.”

“After my colleagues knew my TB status, they just said ‘Hello’ and then kept some more distance with me all the working time.”

Besides TB, HIV infection was believed to be directly related to TB by many participants. The relationship between TB and HIV was also an important topic that made them delay their approach to healthcare after developing symptoms. Some participants who had TB-related symptoms knew that if they had been diagnosed with TB, they also needed to get a HIV screening test – something which they reported being anxious about:

“I believed that the causes of being TB patient were HIV. I feared that a doctor would ask me to get HIV test which made me have more stress than TB. So, I did not want to come to the hospital.”

“I knew that when the doctor diagnosed me as TB patient, he would not diagnose me only TB but he would ask me to get HIV screening test too. Thus, I feared about getting HIV test and it might show HIV positive which would result in having more stress and many consequences. I then decided to do not come to see the doctor and left my symptoms for a long period.”

Stigmatisation related to HIV-positive status was also claimed as an influencing factor of the delay. Some participants who were HIV-positive outlined how this diagnosis – and the perceived stigma related to it - led them to delay seeking help for TB symptoms:

“I had worried about other people would know my HIV-positive status. I also worried about if I delivered my baby and he would get HIV, other people then might know about our HIV status. So, what should I do in the future? I then tried to leave my TB-related symptoms for a while because I did not want others knowing.”

“I thought that TB and HIV were related together. I did not want other people knowing about HIV-positive status so I left my TB-related symptoms for a long time.”

Discussion

This mixed methods study used a formally developed TB stigmatisation questionnaire to investigate the relationship between perceived stigma and patient delay in Thailand. To supplement quantitative data, structured interviews were undertaken to obtain more understanding of participants’ views, beliefs and feelings related to TB (and also TB-related HIV) stigma.

Stigmatisation is one of the social factors related to health which is based on institutional and community norms and interpersonal attitudes. It is a process that starts when a specific characteristic of a person or group is identified as unpleasant or unacceptable. Shame, disgust, and guilt are then internalised as a sense of disvalue and the stigmatised person often adopts these as set of self-regarding attitudes. These attitudes then result in a set of behaviours including hiding the stigmatised characteristics, avoiding interpersonal relationship, or increasing risky behaviour (Courtwright and Turner, 2010).

The findings demonstrate that stigmatisation can be considered as a significant factor for patient delay in TB. Tuberculosis stigmatisation is perceived to have negative consequences caused by the perception of TB transmission to which inadequate knowledge regarding to the disease may also contribute (Courtwright and Turner, 2010). Participants with higher TB stigmatisation scores were more likely to have a longer duration of delay prior to accessing healthcare services. Some expressed views that TB is a ‘disgusting’ disease which can be transmitted to other people, resulting in them not wishing to disclose that they had symptoms. This is consistent with a study in Ethiopia reporting that most TB patients believed TB to be the consequence of exposer to evil spirits or God’s punishment that made them have the sense of disvalue resulting in hiding their illness, and avoiding treatment (Mesfin et al., 2009). The finding of this study also showed that stigmatisation was associated with the delay which corresponds to another study in Syrian Arab Republic reporting that feeling a high degree of stigma was a significant risk factor for the delay (Maamari, 2008).

Participants were more aware of being stigmatised by other people, rather than their family members. The first aspect of the questionnaire scoring highest was participants recognising that they felt bad when asked to maintain space from other people which is confirmed by in-depth interview as when one participant said: ‘as a communicable disease or a disgusting disease…the main reason was that I cared and was concerned about the people surrounding me and about their perspective and refection on me’. While, participants feared telling their family that they had TB less than telling other people. These findings are congruent with a study in Uganda reporting that most patients chose not to share their TB status with their friends, colleagues or neighbours and they chose to tell their family members only because they feared about social discrimination and stigmatisation (Macfarlane and Newell, 2012).

In our society, stigmatisation is found not only TB but also HIV infection and AIDS (Mesfin et al., 2005; Ngadaya et al., 2009). With regard to TB, as it is one of the opportunistic infections related to AIDS, some participants thus incorrectly believed that having TB resulted from HIV infection (Courtwright and Turner, 2010). Therefore, most participants did not come for a TB screening test while they had TB-related symptoms for a while because they did not want to be screened with HIV as one participant claimed: ‘I feared I would be tested for HIV screening and then might show HIV positive’. This is consistent with some previous studies reporting that the fear of stigmatisation to TB and/or HIV co-infection may be contributing to delay in seeking healthcare initially (Chimbatata et al., 2017; Macfarlane and Newell, 2012; Mesfin et al., 2005; Osei et al., 2015).

Tuberculosis stigmatisation can be a result of inadequate knowledge or poor attitude about the disease which is reported in many previous studies (Eastwood and Hill, 2004; Hoa et al., 2004; Yeni et al., 2018). Therefore, individuals with TB need to be empowered to resist stigmatising external judgement while knowledge about the disease should be gained and improved among people across the nation to have more understanding and minimise stigmatisation about the disease.

Conclusion

This study was conducted based on questionnaire surveys and in-depth interviews, providing triangulation of quantitative and qualitative data. However, the study was only undertaken among participants who were diagnosed with TB. Exploring perceptions of TB stigmatisation among people within the wider population – and their views on whether this would delay them from seeking help – would be helpful in future research.

This study offered a mixed methods approach to discover the relationship between TB stigmatisation and patient delay among PTB patients in Thailand. Higher levels of perceived stigmatisation were significantly associated with a longer duration of delay, with qualitative data reinforcing that concerns about stigma and discrimination impacted adversely on willingness to seek healthcare advice.

ORCID iD

Kampanart Chaychoowong https://orcid.org/0000-0001-5287-5704