The response rates for community, patients and HCWs were 99% (597/600), 100% (51/51) and 83% (15/18), respectively. Community members and HCWs who did not participate were unable to do so due to timing constraints. Table 1 represents sociodemographic characteristics of all study participants. In the narrative below, community perspectives are presented followed by patient and HCWs perspectives.
Characteristics of the respondents
As shown in Table 1, within the community, more males 335 (56.1%) than females 262 (43.9%) were surveyed. Among TB patients this dynamic was reversed with slightly more females 29 (56.9%) than males 22 (43.1%) interviewed. Of the community members interviewed, 361 (60.5%) were aged ≤40 years while 51, 37 (72.5%) of the TB patients surveyed were aged ≤40 years. Secondary education was the highest education level achieved by 304 (50.4%) of community members and 33 (64.7%) of TB patients. Most community members and TB patients lived in rural settings and were from the Ijaw ethnic group. Farming was the most common occupation among community members (253, 42.4%), and 26 (51.0%) of TB patients were unemployed. For the TB patients, 50 (98.0%) had pulmonary TB and all were bacteriologically confirmed. Only TB patients were tested for HIV with 49 (96.1%) reporting as being HIV negative.
Nine FGD sessions comprising 73 adults (40 male; and 33 female) and KIIs were held with 15 health workers. All the participants for the FGD resided in the study area, and KIIs were held with health workers involved in providing TB services in the study communities.
Community perspective: facts and fiction
Knowledge of, and attitude towards TB: Table 2 illustrates the aggregate knowledge and attitude questionnaire scores by community members. The overall mean [SD] knowledge score was 6.1 [2.2] (maximum 10). A total of 391 (65.5%; 61.5 – 69.3%) of the respondents had good knowledge of TB. Older (>40 years old) respondents had a higher overall knowledge of TB compared to younger (≤40 years old) participants (71.2% vs. 61.8%; p=0.018).
However, during the FGDs with both younger and older community members, it was mentioned that TB is transferrable through sharing utensils, eating with a person with TB, and is caused by excessive drinking and/or smoking as well as contaminated foods or water.
“[TB] is a transferable disease caused by cough, you can get it by sharing utensils”.
Male FGD participant (18-29 age group), Brass
In two FGDs, participants mentioned witchcraft and spiritual attacks as a cause of TB. Patients in all nine FGDs identified cough as a cause for TB and weight loss was mentioned by participants of eight FGDs.
The mean (SD) attitude score was 4.8±1.9 (maximum 12) suggesting that generally they had a poor attitude towards TB. A total of 492 (82.4%; 79.15 – 85.26) had poor attitude towards TB. Only 105 (17.6%; 14.7 – 20.9%) of the community members had appropriate attitude towards TB. When asked about attitudes and beliefs, community members believed that the onset of TB would result into job loss, but most did not think that women with TB will be infertile.
Access to TB services and health-seeking behaviour for tuberculosis: Community members’ access to TB diagnostic services and their perceived health-seeking behaviour for TB symptoms are shown in Table 3. Only 161 (27.0%) of the community members had received some information about TB in the six months preceding the survey by healthcare providers 75 (46.6%), mass media 43 (26.7%), family/friends 20 (12.4%) and religious places 12 (7.5%). Overall, 589 (98.7%) of the community members reported that it would take them an hour or more to get to the nearest health facility that diagnoses and treats TB in their community. Also, 356 (59.6%) of the community members reported having to pay for transportation to get to the health facility. Furthermore, 163 (27.3%) and 273 (45.7%) of the community members reported that they have to pay out-of-pocket to access a healthcare provider and laboratory services respectively in the health facility. Self-treatment (181, 30.3%), medicine vendors (86, 14.4%) and public clinic/hospital (120, 20.1%) were the most popular ways/sites of first visit for cough among surveyed community members.
FGD participants from South Ijaw and Ekeremor indicated that local chemists were their first point of care for TB. In these groups, visiting traditional healers and pastors or churches for treatment were also mentioned.
“Some people might go to meet their pastors to pray for them before going to the clinic. Believing that God is the solution to all problems, that is why they go to meet their pastors.” Female FGD participant (aged 40 and over), Ekeremor
Perceptions around TB and gender: Across all communities, 348 (58.3%) of survey participants also thought men were more likely to get TB than women. When asked about attitudes and beliefs, community members believed that the onset of TB would result in job loss, but most did not think that women with TB will be infertile as is common in some other communities (22). Furthermore, 395 (66.2%) community members thought that women would need to ask permission from their husbands and/or relatives to access healthcare.
Delays in accessing TB services: The community members’ perceived mean (±SD) patient delay was 2.2(±2.9) weeks (median; inter quartile range 1; 1 – 2 weeks). Also, the community members believed that presumptive TB patients in their community will require a mean (SD) 2.1(±1.2) health facility visits (median, IQR; 2, 1-3) to get a diagnosis of TB in their community. Also, their perceived mean (SD) delay from contact with the health system to receiving a diagnosis of TB was 5.7(±7.3) days (median, IQR; 3, 1 – 7 days), and the perceived mean (SD) treatment delay was 6.7(±13.7) days (median, IQR; 3, 1 -7 days).
Concerns about costs associated with TB treatment and care and lack of knowledge/understanding of the fact that TB treatment and care were provided for free were among the top causes of treatment delay according to most FGDs. In Patani, FGDs with both males aged over 40 and females aged 18-39 also indicated that shame could be a reason why some people with TB do not seek care.
“Some actually know the treatment is free, but they are still ashamed to go for treatment”
Female FGD participant (aged 18 to 39), Patani
In Southern Ijaw and Ekeremor, where traditional healers were mentioned, the FGD participants stated that getting native drugs and relying on native treatment first was the cause of delay for many.
In all, FGD themes such as the need for more awareness around TB in the community, bringing health centres and health workers closer to the communities with the most need to alleviate travel costs for patients, and the need to support people with TB in the community with travel allowances and treatment adherence services came through.
Factors impacting knowledge and attitude towards TB: Logistic regression analysis was used to understand factors associated with knowledge and attitude towards TB. Educational status (p = 0.028), residence (p = 0.006), ethnicity (p = 0.045), occupation (p = 0.008) and monthly household income status (p = 0.004) were associated with good knowledge of TB. In multivariable logistic regression analyses (see Table 4), only older age (adjusted odds ratio (aOR) 1.5, 95% CI 1.1–2.3), rural residence (aOR 2.4, 95% CI 1.7–4.0), Itsekiri ethnic group (aOR 3.0, 95% CI 1.1–8.8), and having a regular household income (aOR 2.4, 95% CI 1.4–3.9) were independent predictors of good knowledge of TB. Additionally, good knowledge of TB among the community members was associated with good attitude (p = 0.001). Furthermore, formal education (aOR 5.8, 95% C.I.1.3–25.6), Itsekiri ethnicity (aOR 6.1, 95% C.I. 1.6–23.6), and good knowledge (aOR 2.5, 95% C.I. 1.5–4.4) were independent predictors of positive attitudes for TB.
Patient Perspectives and Experiences
Knowledge of TB: The TB patients surveyed generally had a good knowledge of TB (Table S4). The overall mean (SD) knowledge score was 6.8±1.5 (maximum 8). Table 5 shows that that 13 (25.5%) patients didn’t know that TB is caused by an infectious agent/germ and 12 (23.5%) didn’t know that TB can be transmitted through inhalation of air droplet from affected persons. Overall, 45 (88.2%; 76.1 – 95.6%) of the patients had good knowledge of TB.
Perceptions of TB and access to TB care: Table 6 presents TB patient’s perceptions of TB, where 29 (56.8%) of patients indicated that they felt scared when they found out they had TB; 40 (78.4%) said that they informed their family and friends that they had TB, and 30 (58.8%) patients did not feel discriminated against by the community. When asked about acquiring diagnosis, all patients reported having to travel longer than 1 hour to reach the health facility (Table 3) for diagnosis and treatment of TB; 37 (72.5%) had to pay for transportation to reach the facility and 33 (64.7%) found that the health facility had convenient hours of service. A total of 35 (68.6%) of the patients had received some information about TB in the six months prior to their diagnosis; and healthcare providers 23 (45.1%), and family/friends 14 (27.5%) were the major sources of information on TB.
Table 7 shows patients’ health seeking behavior for TB. Fifty (98.0%) of patients reported taking a previous treatment prior to being diagnosed with TB, and 43 (84.4%) reported that their symptoms either worsened or remained the same. Patients had repeated visits with the same provider (22, 43.1%) as well as different providers within the same facility (16, 31.3%). When asked reasons for delaying seeking care, 35 (68.6%) of patients reported that they were not aware of the severity of the symptoms.
Diagnostic and treatment delay: The TB patients’ mean [SD] delay from the onset of TB symptoms to visit to any health facility was 16.3 [18.7] weeks (median; inter quartile range 12; 4 – 24 weeks) with 32 (62.7%) of patients seeking care after four weeks of symptom onset. Also, the delay from the patient’s first visit to any health facility until they were informed they had TB was a mean [SD] 3.7 [6.9] weeks (median, IQR; 1, 1 – 4 weeks). Thus, the overall mean [SD] diagnosis delay of the TB patients was 20.0 [21.7] weeks (median; inter quartile range 13; 5 – 25 weeks).
Thirty-eight (74.5%) of patients started treatment within three days of TB diagnosis. The mean [SD] treatment delay following a TB diagnosis was 3.5 [5.1] days (median, IQR; 1, 1 -4 days). Mean diagnosis delay did not differ among patients with good vs poor knowledge of TB (19.3 [18.9] vs 25.5 [35.2] weeks; p = 0.515). Furthermore, the mean diagnostic delay did not differ according to the patients’ demographic characteristics (p>0.05), access to care (Table S5; p>0.05), and their health-seeking behavior (Table 7; p>0.05).
Health workers Perspectives
Causes of patient delay and assessment of resources: Fifteen KIIs with HCWs were conducted. The major themes emerging from these KII’s regarding provider attitudes were: availability of materials for testing, provider trainings, challenges to testing, increasing knowledge of TB and motivating HCWs towards TB. HCWs mentioned that materials and drugs were not a problem for their facilities. All facilities had drugs provided by the state and materials were immediately available to conduct TB diagnostic testing and treatment. However, HCWs did mention some challenges to testing, specifically sputum transportation and communication of results post testing. HCWs focused largely on motivating HCWs towards TB. Some HCWs indicated that training personnel through institutions or Non-Governmental Organizations (NGOs) would be a good way to increase awareness of TB. Others indicated that incentives and providing salaries would help increase HCW motivation towards TB testing.
“If something (money) can be given to the DOTS workers, maybe quarterly, just to encourage them to be active, especially now that the Government does not pay salaries”
[KII TBLS Patani].
When asked regarding patient delay, HCWs noted that patients only come to them when they are in critical condition.
“They first go to spiritual homes and when they have tried all that without success, then they come to us” (KII Asst. TBLS Southern Ijaw).
“Since they think it’s a spiritual attack, some go to churches. Some use leaves, roots and herbs. They only come to the hospital when the sickness gets worse” (KII Brass DOTS FP).
These themes were similar to those presented by the community as well as the TB patients above.