Our findings focus on the outputs needed from the health system and the patient to achieve DR-TB cure, by looking at required supply and demand dimensions and how they align with each step in the care continuum, starting from symptom recognition, through health-seeking to completing treatment. The five paired supply and demand dimensions, based on the Levesque framework of patient-centred healthcare access, is summarised in figure 2.
Approachability and ability to perceive
Certain attributes of the healthcare system and of patients align when the patient recognizes that observed symptoms require medical attention and that certain health services can be accessed. The health system enables this through patient education, transparency and outreach services information. This stage in the care continuum should end with the patient deciding to seek care for their health problem.
The national guidelines stressed the need for patient education and community awareness and outreach activities. Routine patient education is to include cause and symptoms of TB, availability and free cost of treatment, where to seek healthcare, and how to prevent spread. These activities are to be implemented through home-based care for HIV and TB patients. The guidelines encourage healthcare workers to conduct campaigns and sensitization activities to increase testing requests, actively search for cases within the health centers especially for HIV patients, sensitize providers and engage community-based organizations. However, the guidelines are not immediately clear about the frequency or funding provisions for these campaigns. It also does not say how active case-finding in the community should be done, although several implementing partners are tasked with these activities.
Patients, their relatives and providers agreed that there was limited awareness about DR-TB in the communities.
“The point is, not everybody knows about TB…I didn't actually have the full knowledge of what TB was, so when I got infected, that was when I knew. Ah, this thing is really serious! But… people out there, I don't think the information has been passed enough to people, especially those in the rural areas...they just feel it is this strong cough that doesn't go away. [A herbalist] prescribes herbs for [them] to take and they think okay, it is just a normal cough that will [go away]....I think the awareness [is important] because when someone is aware [of] what is at stake…[they] will be …like... okay, this is [serious]...lets go to the hospital” (Mixed patients FGD).
This often resulted in prolonged pathways to DR-TB care, because DR-TB care were most often available in the public sector. Most of the patients in our focus groups said they encountered these delays, mostly because of wasted time in the private sector. These delays ran from three months to six months, in a majority of cases, to more than three years, in a few cases, or even death. Patients acknowledged that the private sector, including patent medicine vendors (PMVs), community pharmacies and private hospitals, were the first point of contact with healthcare but that private practitioners had lower index of suspicion for DR-TB, and almost never referred them to the public sector. This apparent disconnection between the private sector and public sector care, resulting in misdiagnosis and mismanagement, threw patients into a sometimes-tragic search for a cure.
“So, I [didn’t] really know what to do [anymore] I was … given the herbal [preparation], I went to church, I went to mosque, went to everywhere, but all [remained] the same I won’t lie to you, [DR-TB] is very strong and very powerful… I [also] went to a private hospital for 30 days treatment … they gave me some drugs to use, but the major [drug] they said I should be using is rifampicin. I [used] rifampicin for like two to three years. … When the result [of the drug susceptibility test] came out, …I was even surprised they wrote rifampicin [resistance] there, and … it was true I was [ab]using rifampicin” (Diagnosed untreated male patient).
"Private hospitals tell [patients] they don’t have [TB], my younger one that died, we [spent money] for the ... test, and they still insisted that he did not have [TB], (Patients FGD)".
"He was driving [a truck] before, …[so] he stopped working… I was the one taking care of him at the Hospital, I [also] stopped my work… He [took herbal preparations], went to [the] pharmacy to buy medicines for himself, went to every possible place, there was no cure…He went to prayer houses too. Then he went to the hospital… the sickness was on and off. He will recover and fall sick again, that was why we kept going back… He has been sick for like 6 months [before starting treatment]…The sickness had already taken over his body, that was why [he died]", (Wife of patient who died a few months into DR-TB treatment).
The Nigerian Annual TB program reports also showed much lower coverage of free DR-TB services in the private sector, limiting the approachability of DR-TB healthcare.
Respondents mentioned that being told by a healthcare worker in the community, or by a former TB patient, helped them to realise their symptoms were treatable for free in the hospital. Healthcare workers were frustrated that there was more knowledge about HIV in their communities than of TB.
Government TB control officers and program managers mentioned that outreach activities have increased case finding in the communities they supervise.
“So, somebody who would have stayed at home using traditional medicine, thinking that this is just an ordinary cough … but with the outreaches, [any] cough of 2 weeks… please come out for testing, and from the outreaches a lot of cases have been identified” (Male program manager).
Acceptability and ability to seek
For a patient to utilize healthcare, the health services need to have a higher perceived benefit than other options available to the patient, as well as not to violate any cultural, religious or social norms the patient has. This stage is also affected by the health systems professional values, culture and norms, as well as the patient’s autonomy. This stage ends with the patient choosing a particular source or type of care over other options.
As part of the TB private-public partnership strategy, the TB program worker’s manual included notes to organize regular meetings with relevant stakeholders including PMVs and traditional healers at state levels, with national oversight. Monitoring meetings with community-based organizations were also to include religious bodies. It was not clear from our data how often and where these activities were happening.
Patients, relatives and providers gave several narratives of patients visiting multiple sources of alternative care in search of a cure like PMVs, traditional healers and prayer houses, and most often before ever going to a health center. Sometimes, this was due to being unaware of DR-TB services, inconvenience of these services, misdiagnosis in a private hospital or family influence on patients’ autonomy.
“I have not really seen many [cases like this]…except for a case of a student I saw when I went for on a supervisory visit … this student … was diagnosed with TB but his mum did not believe that he had TB. His mum felt that it was a spiritual issue that should be [handled] with prayers. I took up the phone and called her and despite all my pleading and explanation, [and even though] she said ok she was going to bring her son the next day, … she never came. ….This is one clear example of where a parent of a … minor prevented the child from having access to care” TB Program Manager Interview.
The documents we reviewed did not mention protecting the right to health for minors, marginalized groups or other persons who might not be able to take a health decision on their own.
Other times, it was because the patients had more confidence in alternative healers than in the public sector hospital or wrongly attributed TB to other causes. As one HCW puts it:
“I’ve treated one educated person here, [not] until he started the drug and [in] the second month [when] he [could] see the difference that … he believed truly TB is a disease. [Before then], he believed somebody [evil was harming] him; [imagine that] an educated [person]! So I [had] to make copies of … our National [training guides], to give to him, to go and read, that TB is [not supernatural]; and that you [can] be infected [anywhere], … from an infected person” HCW interview.
Patients reported that they preferred to go to private hospitals because of widespread perception of better provider attitudes. The major acceptability barriers to public hospitals included poor provider attitude, unsanitary conditions, and lack of essential medical supplies and accountability.
“Most of private hospital they don’t know [the right thing to do], and private hospital is where most people go to. [Government should] first … do something [about] private hospitals because … people will think [they] are getting [good treatment], whereas it is just [the wrong medication] … In this country, if something happens, people … go to private hospitals, and they should. [Government hospitals] don’t treat people well. I can’t give birth in a government hospital , my younger one was dying in a government hospital and they said it is not their business, if you don’t get a particular [item], if you don’t get [say, a facemask], they will not attend to [your] child, before we could get [the facemask], the child had died. Government hospitals treat people like dogs, like animals, like …whatever happens to you is not their business, they will [still] get paid. In private hospitals, they will be sweeping and cleaning every minute …, and telling you sorry every time, [and] you … feel a little bit consoled” (Female patients FGD 1).
Patients were more inclined to use the public sector on the recommendation of someone in their community that they trusted, like their pastor or family member. Interviews with members of the community also highlighted the effect of community awareness campaigns in changing people’s beliefs about health services.
Availability, accommodation and ability to reach
For patients to be able to reach a health service, it needs to be geographically available, with accessible opening hours and appointment systems. The patient should have access to secure transport to reach these services. At the health facility, the patient needs to come in contact with a knowledgeable provider who suspects and tests for DR-TB. This would also need to align with the patient’s support system. At the end of this cascade stage, the patient should be known to the health system and recorded as “tested”.
Based on the annual National TB program reports and data from 2015 to 2017 that were part of our document review, coverage in services was scaled up nationally: testing facilities increased from 201 to 386 (testing), in-patient treatment centres from 13 to 29 and community outpatient treatment centres from 5 to 200. Most of the testing facilities were located in the tertiary and secondary public health centres, with only13% and 6% of testing in the private sector and primary health care level respectively. In-patient treatment centres were in 27 out of 37 states, and all were in tertiary or secondary facilities, with 17% in private hospitals, excluding patients who were initiated on treatment in the communities. Geographic coverage of testing was 48% at the end of 2017.
Respondents mentioned the lack of testing and treatment facilities near them as a barrier. Many patients lived far from the health facility, with transportation difficulties, especially in rural areas.
“Some people do not have the opportunity to come down to this place; if it is in their State they will also be able to go to the clinic close to them to [test], knowing that when they get there they will [be treated] well" (Female patients FGD 1).
Several health system barriers were noted including clinic and laboratory operational delays, data errors and stock-outs of essential health products. Healthcare workers gave instances of patients giving wrong contact information, due to poor confidence in the public healthcare system, which affected patient tracking and resulted in loss to follow-up. The treatment guidelines and workers manuals we looked at did not include any procedure for address verification for patients being tested or initiated on treatment.
Healthcare workers also noted limited staff numbers as a major challenge.
"... because we don’t have manpower on ground. … In a particular facility probably, they are only two [staff] and in some cases there is only one personnel. Now you will be handling this, … you will be doing this [and that]. So, at the end you may not even have time for some of your patients ... that is the greatest challenge we have" (Female HCW)
Affordability and ability to pay
The direct and indirect costs of accessing care and the patient’s socioeconomic situation determine whether a patient gets diagnosed and placed on treatment. These costs and ability to keep paying for them will determine if the patient initiates and continues on treatment.
Patients narrated facing catastrophic treatment costs, mostly in the private sector, before finding the right health center for DR-TB care. Other direct and indirect costs were related to transportation for follow-up appointments and for pre-treatment investigations.
However, with support from partners, the TB program pays transport and social support to patients enrolled on treatment, at approximately USD100 per month (49). Patients and their relatives repeatedly mentioned that the financial support was the biggest facilitator of access for them.
“We thank the sponsors of [this] program because if not for them, things would have gone wrong. Because so many [people] didn’t go for [the] injections because of money, so many [people didn’t] have money for [transportation], feeding but we thank [the program]. If not for the money [they] gave us, many [more] would have died. Things would have gone [very] wrong [for us] but we thank them …. Thank you very much.” (Treatment supporters FGD).
“I used to hear that they heal people with [TB here], but I was like - how much will I [need to pay when I get here]; but when I heard it was free, that was what gave me the opportunity to come here” (Female-only FGD).
Appropriateness and ability to engage
The healthcare system also needs to be efficacious, well-coordinated, uninterrupted and support the patient to be empowered and adhere to the treatment regimen to its completion. The patient also needs to be able to tolerate or withstand the effects of treatment and have adequate support from their social network. Only then can the desired treatment outcome be achieved.
There were instances of patients losing hope during the long duration of treatment or having unbearable side effects, including pain from injections, to the point where the possibility of dying was preferable to remaining on treatment.
“[An elderly man], …when he sees the tray for drugs, … he will start vomiting, ha! even when they have not given him, as soon as he sees it, he starts vomiting. At last even nurse or doctor, when he sees them he will just start vomiting, and finally he said he wants to go, … if he even sees the color of the doctors or nurses uniform he will be so afraid…he said it is better for him to go and die… maybe he is dead but we don’t know, but if he just sees them even there is no drugs he will start vomiting. .. they gave him paper to sign out of treatment…and he signed out and left because he [couldn’t] bear the pain [anymore]” (Female patients FGD 2).
“I lost hope...It got to a point, I was throwing my drugs away, because I just told them they should leave me to [die]... I was just so tired of everything" Patients FGD.
"We have some that after starting treatment, due to adverse drug reaction you know, some of them may tell you that I better die than to be taking this drug" HCW interview.
In several cases, having a caring healthcare worker made the difference between continuing treatment or not.
“Taking the drugs, to be frank, is very difficult. When you take the drugs, you will feel serious pain. Sometimes some people will be shouting, shouting; … the injection is like that. …sometimes we are together with the nurses while the injection is being given, and during that period, you will be see different people shouting, shouting because of the injection, some people will even be running from the injection. To be frank the nurses are very caring. and God will bless them all for their effort” Female Patients FGD.
“After some months, I saw the next [medication], I refused because the pain [I was] going through. So, I didn’t want to take the treatment, but the way [the HCWs] talked, pleaded. When they came, they started pleading with me… That’s why I … decided, let [me just] go ahead and take it” Mixed Patients FGD.
Healthcare workers cited a few instances of patients whose families prevented their treatment completion because of their own beliefs that the private sector will offer a cure.
At the health system level, several barriers were noted, including stock out of essential supplies, and inadequate patient counseling.
Overview of equity and ease of access to free DR-TB services
Our document review found, and providers and the patients affirmed that the DR-TB program provided financial support for patients on treatment, which patients acknowledged as the main facilitator to access.
“The day they gave me the result and said it was TB, I was like ah! And I started thinking that where do I … get money [for treatment]. I told my husband and he was worried. The doctor then said that whatever we are using here will be free of charge. I was like, it a lie, there is no [way] I will come here and will not spend money. I wanted to drop the money on me. They were like, no, I should go [home] with it.... When we got to where we will do [the] X-ray, I [asked], how much am I spending? They said I am not spending anything, that I should go home, because everything they do here is free.” Patients FGD.
There were very many instances of healthcare workers personally going above the line of duty to help patients remain in care.
“We pay nothing. Even when I go to hospital without money, the person giving us drug [would] give me money for transport from her personal purse and I keep thanking her till today because she really took good care of me” Patients FGD.
However, to be placed on treatment, there were significant challenges with coverage of services, prolonged care processes, operational errors and provider attitudes.
“When I got to that general hospital to do test …, which [was 6 months ago] they said …am going to do eight tests, am going to do seven there [at the general hospital] then the other one at [another location]. [eventually], I did everything, I have [done] the … seventh test at general [hospital]… so it is remaining, one, at [the other location], they said that one … audiometric or (hiss) I have forgotten what the doctor called it.… which is the eight one. …[I just did], the x-ray. Everything -the results- are still at home” (Untreated male patient).
All groups of respondents mentioned that some groups of patients had more difficulty accessing care. These include patients living in rural communities far from TB healthcare centres, children whose parents had low trust or information about public healthcare, patients in the private sector, women due to adverse cultural norms that necessitated asking for their husbands’ permission to access care, workers and students.
These difficulties are reflected in the following quotes:
“A 12 years old [girl] came down with … resistance and the mother vehemently refuse to take her for treatment all in the name of she has given her some cough syrup. The state team went there … yet this woman stood her ground that she will not allow the daughter to leave … The TBLS (TB Local Government Supervisor) …the woman took one knife at… him … So, now the small [child] that is bearing the pain. But because she is small, she can’t take decision on her own.” (Male program manager).
Livelihoods and education were threatened or interrupted, even for patients’ relatives, in order to navigate the process of care.
“I was learning before, I should have finished learning this year before this TB stopped my learning. It was remaining 4 months for me to complete” (Female patient relative).
“The reason why I don’t want to start now is that…is work! My work…And my house rent is going to be due in November which is next two months;… the reason why I don’t want to [go for treatment] now, is that if the house rent should be due [how can] I tell my landlord that I am leaving for the hospital?! ...I am going to pay for the house rent” (Untreated male patient).
Overall, there was cohesiveness between data source (document versus interviews) and respondent type. However, there were a couple of differences. For example, while the national guidelines recommended that community awareness be carried out, it was not very clear how these were to be funded or implemented by the healthcare worker. Also, several healthcare workers cited cases of female patients and children being prevented from accessing care because of an authority figure, participants in the female-only FGDs did not mention this, even when probed specifically for this. However, a phone interview with a female adult patient living with her father, was interrupted by the father, who asked that his daughter never be contacted again by the DR-TB program as she was already healed by prayers.