Study characteristics
There were 10 studies from Nigeria that explored factors that impact access to TB care from a qualitative perspective, 9 qualitative studies and 1 mixed method. The characteristics of the 10 studies synthesized are presented in Table 2.
A variety of methods were used in data collection including in-depth interviews, focus group discussions, semi-structured interviews and key informant interviews. Sample size ranged from 24 to 221.
The ten studies differed in focus even though all directly or indirectly explored factors influencing diagnosis and treatment to care- including barriers to direct observable treatment short course (DOTS), the WHO endorsed system of TB care [40-43]; the role of family members [40, 44-46], patent medicine vendors (PMVs) [47] and treatment supporters [43]; particular focus on gender-based factors [46], care pathways [40], challenges of drug-resistant TB care [45] and TB/HIV co-infection [44]; as well as community-level interventions with some particular reference to TB [38].
Quality assessment
The quality assessment for the selected studies are presented in Table 3. Three out of ten studies were classified as “A”, and the remaining 8 classified as “B”, using the Murphy criteria [35].
Description of themes
Our synthesis yielded three main themes and eleven inter-related sub-themes (Figure 2). On the individual level, financial capacity, education and knowledge, as well as attitudes and beliefs were facilitators or barriers. On the interpersonal level, family influences and community involvement were facilitators, while negative community attitudes and beliefs, especially towards public sector TB care, and harmful gender norms, were barriers. At the facility level, cost of service, human resource and coverage and type of services were either facilitators or barriers. We also discuss the stage of care - diagnosis or treatment – the access factor was more prevalent.
Each of the three themes are presented in more detail below.
Individual factors
This theme reflects the individual-level factors that determine the use of healthcare. It emanated from three descriptive subthemes of financial capacity, education and knowledge, attitudes and beliefs.
Cost of treatment, particularly indirect costs such as relating to transport or additional fees, were cited by participants as a major barrier to both diagnosis and treatment. For example, one participant in the Oshi et al, 2016 study stated that “There are very few women in my community who can afford the costs of transportation to the hospital and to pay the hospital fees. Maybe the traders! Even then, if they are not cautious taking money from their business to go for treatment will spoil [ruin] their business...” (Interview with 29 years old female with secondary education) [46]. In a different study [38], a participant discussed mentioned how “Many women go to faith healers now not because they do not know that it is better to have treatment in the hospital, but because they cannot afford it. Many of our women are not employed …”[38].
However, patients who received family support, as discussed below, were better able to mitigate the cost barrier.
Several codes were related to the patient’s education and knowledge. Participants noted that attitudes and beliefs hindered correct diagnosis. Knowledge about the cause of TB or the availability of free care, negative perceptions of public sector care or a preference for alternative care in the private sector were recurring barriers to diagnosis.
“It is only a prophet who can destroy the powers of the witch. So, such persons who have TB can only be cured through prayers by powerful prophets” (41 years old female, uneducated farmer) [46].
‘It took some time before I went to get drugs for this illness... I went to two prayer houses yet I did not get better ...so I started taking herbal treatment’ (FGD, 42-year-old male) [42].
For some patients, the use of alternative treatments, or the reason for delayed care-seeking were due to financial constraints. This was a particular barrier to diagnosis.
“For the first two months when I started coughing, it was very hard for me because I had no money to go to the chemist... even after I visited the chemist and got some drugs the cough persisted” (FGD, 65-year-old male) [42].
“I did not have any money to buy drugs when my illness started...so I started taking herbal remedies” (FGD, 58-year- old female) [42].
Some of the themes were inter-related, for example uneducated patients were more likely to delay treatment in favor of prayer houses and traditional healers.
“Health seeking depends on the level of education. The [uneducated] would delay going to hospital. They first use local herbs.” “Patients first move to chemists and herbalists and finally hospital if they cannot get cure from these sources. Where they go first depends on whether they believe TB is man-made, natural, or caused by witchcraft.” [40].
A few patients complained about the fact that most available health resources in their immediate localities were focused on pregnant women and children, alienating males and other women. This perception of public healthcare could have been a barrier to diagnosis, especially for males.
“All the health programmes in this community are designed for women and children. Is there nothing that can be done for adult males and females? If we are sick and not treated, we will transfer the sickness to the children [38].
Interpersonal influences
This theme refers to the effect of the family and community on the decision-making processes of people in need of care, ranging from codes on stigma and discrimination to community awareness campaigns. It is also reflected in the extent of deference women were expected to have towards their husbands when it came to health seeking decisions.
Factors like stigma and discrimination affected women differently from men, as some participants were quoted saying a female TB patient would be a pariah and would be unlikely to get suitors or could possibly be divorced as a result of her illness. Also, a husband who attribute TB to other causes or who have negative perceptions about its management could potentially prevent his wife from accessing care. These gender norms were mentioned by different participants. One participant said, “Women should be submissive to their husbands. A woman who knows more than her husband portends danger to the community. If a man says the medicine is good, then it is good. If he says the medicine is not good, who is the wife to disagree.” (elderly, female, farmer) [46]. Another mentioned that, “… The ability of a woman to pay for hospital treatment does not mean that she can just get up and go to the hospital without her husband’s permission.” [46]. In another study, a participant mentioned that marriages were breaking up because of one partner’s infection. “The community leader… argued that traditionally, infection with TB is not grounds for divorce, but spouses often cloak the real reason for seeking separation. . .” [40].
On the other hand, family and community support were facilitators to initiating and adhering to treatment. This support was sometimes financial and this enabled patients to continue accessing treatment.
“For me it was very traumatic to start taking drugs I have not been used to... but I got so many encouragements, people around me, .... And probably to be frank, if not for their own encouragement and everything, I would have stopped; because this is my last month, I wouldn’t have taken it this far, I would have stopped, but they encouraged me that I had to complete the period of medication” Female TB Patient, Asokoro [43].
“My son and wife have been very helpful...they accompany and support me to go to the clinic and to take my drugs” (IDI, 50-year-old male) [42].
“Whenever I am seating lonely and quiet, my husband usually comes to me and asks: ‘why am I seating quiet, am I alright? And whenever my drugs are finished, he goes and gets them for me and he advises me to take the drugs”, Female TB Patient Interview, [43].
“My difficulty is getting transportation to get to this place (DOTS centre). I will go and meet my brother to tell him that I am supposed to go and take drugs then he will find me some money for transportation”, Male TB Patient [43].
For some, having a knowledgeable person in the community, sometimes healthcare workers, direct them to the right public facility for TB care were facilitators of diagnosis.
“I visited all the chemists in my community and took several medication, yet the cough kept increasing...I visited the health centre twice before the nurse said I may have TB I should come to this hospital” (IDI, 35-year-old female) [42].
Health system factors
Health system barriers were a recurring theme in all the studies. They emerged from codes around poor coverage of services, weak referral system, low numbers and poor skills in health workers, poor attitude of staff and quality of care, corrupt staff demanding illegal charges from patients and the relatively high cost of patient cards. These codes were grouped into three descriptive subthemes- coverage and type of services, human resource, and cost of service.
Coverage and opening hours were cited as barriers, mostly to diagnosis but sometimes in relation to treatment access.
“If they [hospitals] want to help us they should make their opening hours flexible so that we [women] can also go there in the evening hours, after the days’ work. That will be more convenient for women.” [46].
Poor coverage was also linked to high transportation costs and the reason why patients were choosing alternative care in the private sector. These were mostly barriers to diagnosis.
“There is no general hospital around. The nearest one … is far from here. Many people don’t want to go there because of cost of the transportation and services. People treat themselves at home or go to herbalists. Only very few people go to private hospitals as they are very expensive [38].
The attitude of healthcare workers created barriers to diagnosis for a number of patients. This was a recurring theme across several studies. One participant said, “Even some nurses and medical workers treated us like we are not fit to live again. They keep a distance when they want to communicate with us. If you come closer, they will shout go! go!! go!!! ........ The feeling of stigma is very difficult. I felt like the worst person on earth having MDR-TB” (IDI, 29 years old male [45]. A healthcare worker in another study confirmed this discriminatory treatment of patients, “…. I have been sending my patients for a laboratory test at a particular hospital, but she refused to go because of the way she was treated the last time she went. I decided to visit the place myself to see with my eyes what was going on. You cannot imagine what I saw. Immediately they (the health workers) saw me approaching them, they shouted at me to go back as I walked in not knowing I am a DOTS Provider. I can imagine what the patients go through….” (DOTS Provider) [41].
Healthcare workers, on their part, complained of shortage of workers, unbearable workloads, inadequate training and a lack of laboratory resources. These challenges were mostly barriers to diagnosis, and sometimes to treatment as well.
“…For me as an example, I am the clinician in my facility. I am expected to go on outreach[es], consultation of patients that come to my facility is my responsibility. I am the DOTS provider. I used to have 22, now I have 27 centers under me to supervise. Then how do I share myself,…” (TB Supervisor) [41].
“My workload is high. It is not only TB services that I provide. I am also the anti-retroviral therapy focal person” [48].
Patent medicine vendors are readily available in the communities and see a lot of clients with coughs. However, many PMVs were not trained on TB control nor were aware of TB DOTS centers but were overwhelmingly eager to be part of the TB control effort [47]. The use of alternative care in the private sector was always a barrier, due to the poor linkage between the public and private sector. Several reasons contributed to the use of the PMVs and some of these linked back to individual factors. They included poor coverage of health services, patients in geographical locations with poor accessibility where only PMVs were available, perceived high costs of care in the public sector, even though TB services were supposedly free.
“Patent medicine vendors are the main source of healthcare service delivery in this community. Many people go to PMVs because medicines are not readily available at the health centres and if available, they are costlier because patients have to pay for other services such as a consultation when they go to the hospital” [38].
“We are in the local communities, a very interior part of the community, and we deal with people of the local communities; hence, such people come to the patent medicine shop to re- quest, “sir, do you have something like this” (PMV practitioner) [47]
Some of the PMVs were not aware of how to diagnose TB or the availability of free TB services in the public healthcare system.
“… I have not heard about it (DOTS clinic). I am not aware of DOTS clinic but if it is evolved, it
will help in the control of people with tuberculosis in our environment” Interview with an official of a local PMV association [47].
“They (PMVs) should be informed, involved, educated, and trained.... You will know what you have learnt, and if anything comes up, you will tell the person” (PMV leader) [47].
Other factors that were mentioned include absence of doctors at community levels and illegal charges demanded from patients. Several patients alleged that healthcare workers were diverting free medications from the TB centres to their private health centres, where they now charge the patients. As this was mainly from one article, we were not able to ascertain if this problem was widespread.
“Attitude of health workers, cost and distance are the issues here. Health workers at the DOTS clinics can hardly be seen, sometimes for a month or more. The health workers have their private Chemists/consulting shops where they treat their private patients. They sometimes divert clinic resources for that purpose” (FGD with women) [40].
“Health workers at DOTS clinic, all have consulting shops outside the hospital. Drugs are not free. Attitude of health workers toward patients is influenced by amount of money the patient has” (FGD with men) [40].
Key facilitators included the financial support provided to the patient by the program.
“I thank you for providing us this money...most times when I want to come to the hospital I borrow money for transportation then when I collect the money I will go and pay back” (IDI, 45-year-old female) [42].