The findings are presented under the ensuing headings; Characteristics of study participants, Patients’ perspectives on DOTS, Patient-related challenges, Health system barriers and Coping strategies Adopted.
Patients’ perspective on DOTS
The findings give an understanding of the relevance of DOTS from the participants’ perspective. Many of the patients expressed favourable perspectives on the purpose of DOTS. The participants described the mode of TB treatment as significant for enhancing adherence, monitoring progress and a form of support for clients. The participants stated revealed that their favourable descriptions of DOTS emanated from the experience of support from treatment providers in overcoming risky behaviours such as smoking and excessive intake of alcohol, they engaged in earlier which hindered adherence to anti-TB medication. For instance, one participant mentioned that “
At the initial stage, we were educated not to smoke, drink alcohol, and the need to eat well…Coming here often allows them [health workers] to monitor how far one is progressing when the tests are done. They are able to know if you are complying or not” (38y/o, Male, Facility 3). Participant’s again held a positive perception of drug dosage and frequency of intake. A male participant who believed in the curability of TB and the efficacy of the anti-TB drugs, mentioned that
“Taking 4 tablets a day for me is not a bother. Even if it is ten tablets I will take so long as I have been assured that I will be healed…” (29y/o, Male, Facility 1). Thus, to such participants, assurance of the efficacy of anti-TB drugs was a key contributing factor in compliance to treatment. Furthermore, DOTS was described as beneficial to all the participants due to positive outcomes such as reduced symptoms and recovery of strength. A male participant shared his perception of drug adherence. He stated that “
Physically, they [adherent clients] are fine and I am even a testimony. When I came here earlier, I was very lean, but within a short period of time, the doctors and nurses were testifying that I have become very fine” (40y/o, Male, Facility 3). Some participants reported emotions of despair and worry at the inception of treatment due to experiences of threatening symptoms and long duration for treatment. These clients however, regained enthusiasm due to the efficacy of drugs and treatment outcome.This is shown in the quote below:
“I was shocked when I was told I would be taking the drugs for that long [six months] but now I am ok. Once I will get healed, I do not care if the duration is even one or two years”
(29y/o, Male, Facility 1).
Negative perspectives on TB treatment
On the contrary, participants described the anti-TB drug size and dosage as unfriendly. Drugs administered to clients in the intensive phase of treatment were classified as bigger in size and difficult to swallow. Though drugs administered during the continuous phase of treatment were more favourable in terms of ingestion, patients’ perceived it as less effective compared with intensive phase drug combination. According to the patients, the less effectiveness of such drugs led to the reoccurrences of previous symptoms as shown below:
“The first set of drugs for the intensive phase of treatment was very effective and good. Almost all the symptoms I used to have had vanished…but when they switched to the second type of the drugs, I realized that the symptoms were re-occurring again” (42y/o, Male, Facility 3).
Furthermore, some of the respondents had negative perceptions about the duration of DOTS. Despite the counselling and health education received on the efficacy of the drugs, clients maintained their opinion about the duration of the treatment as very long. Clients who had high education and those with health background perceived regular visit to facilities for supervision to be unnecessary. For instance, one patient mentioned “…I don’t think I need anyone to tell me to come for my drugs. If the person is well informed [about treatment] he/she should be exempted” (42y/o, Male, Facility 1). Relatedly, another client said that “To me, this duration should be shortened and a stronger drug should be given to us” (34y/o, Male, Facility 1).
Physical and psychological Stress
Factors such as old age, commuting to health facility on foot on a regular basis and pregnancy-related challenges accounted for the physical stress experienced by clients. Clients interviewed who were either older adults or former vehicle drivers, faced the burden of frequently joining ‘trotro’ (public transport) to be attended to by health workers in their respective DOTS centres. Consequently, one patient mentioned that “…coming here [health facility] is very stressful” (68y/o, Male, Facility 2), whilst another said that “I get stressed coming here, especially when I am walking” (42y/o, Female, Facility 3). Commuting to DOTS centres was a usual activity for most of the participants due to inability to afford alternative means of transportation. Clients who were often weak at the initial stage of treatment were also burdened with this stress in accessing treatment daily. Similarly, a pregnant woman lamented on the daily struggles she encountered in accessing treatment in a health facility. She explained that “Every day, I sit in a vehicle. Sometimes I do vomit when I take the drugs [in the facility] because of hunger but if I were home, I take the drug and eat there and then...So it was stressful” (26y/o, Female, Facility 1). The need to report early to the facility each day for treatment was a challenge due to the stress in travelling to the facility owing to the poor road network and the long traffic jam evident in the study area. Moreover, the pregnant woman who is unable to withstand hunger takes the drugs and had to wait an hour before eating.
In addition, clients who had the opportunity to be transferred to facilities easily accessible to them were unwilling to comply with this directive due to perceived societal stigma. This accounted for some stress due to the need to wake up earlier and walk or drive longer to comply with treatment. Others resorted to hiding and sneaking back and forth the facility when attention was not drawn on them. For instance, one client mentioned that “I always hide and make sure no one sees me. I think the DOTS centre should be situated away from this place, where lots of people are not there” (34y/o, Male, Facility 1). Such experiences explain the misconceptions held around the disease. The clients feared of being withdrawn from by others. Such a threat is likely to pose psychological stress on those who experience them.
The consequence of interrupted labor
It was identified that all the clients had to quit their respective jobs at the commencement of treatment. In addition, the majority of the participants were artisans and drivers who depended on physical strength to work. Thus, the physical weakness experienced incapacitated patients to continue working. This implied an interruption of career and/or seizure of the source of livelihood for clients. Respondents revealed the challenge of inadequate material support owing to their inability to work. Food and transportation burden was inevitable which had an influence on their intention to comply with treatment as shown below:
“…We [all patients on DOTS] have been told to eat well, but it is difficult to eat three times because of the money issue. This can even make it difficult for one to even comply with the treatment since once you take the drug you have to eat well”
(38y/o, Male, Facility 3)
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In addition, the burden of caring for clients and their families was placed on their spouses, other family members, and sometimes health care providers. A participant revealed the financial burden placed on his spouse due to his inability to work. He stated that “I am not working and all the pressure [financial demands] is on my wife including the payment of school fees of the children and feeding expenses”. (41y/o, Male, Facility 3). Relatedly, health workers also shared the burden in providing support and care for TB patients. All the health workers interviewed reported the kinds of material support they provide for their clients in the form of food, money for transportation and personal up-keep, among others.
Participants, especially males who depended on others for financial support reported unfavourable experiences from community members. Culturally, it was expected of males to engage in productive roles. Thus, anyone who was unable to meet such expectations was considered irresponsible. Such individuals became victims of public ridicule. A participant, for instance, stated that “…because I am not working sometimes I feel people are looking at me even when I am passing by” (41y/o, Male, facility 3).
Health system barriers to TB patients’ care and support
Inadequate health education and counseling services
Participants reported that some health education on TB and its treatment was made available to TB patients and their primary contacts when clients enrol on DOTS. Patients demonstrated good knowledge of TB, particularly regarding predominant risk factors, symptoms, transmission, and prevention of the disease. However, there were still some misconceptions among the patients. It was revealed that participants attributed the cause of TB a supernatural source. For example, one client attributed the cause of her illness to the work of a spiritual enemy with the aim of attacking her family. She stated that “… my mum was affected [with TB] and my brother and me. I can say that ours is spiritual, it is not the normal TB because ours was only within our family…We were just being attacked…” (26 y/o, Female, Facility 1). It was observed that the health education and counselling services provided were inadequate to demystify the prevailing beliefs held by patients and their contacts.
In the light of such misconceptions, key informants explained the health-seeking behaviours of community members and its consequence on the prognosis of the disease. Late reporting to the facility for treatment was one of such consequence. To a high extent, late reporting culminated in death in some cases. A key informant stated that “Some [patients] believe they might die when they take the drugs. As a result, they show up for medical care for TB late, the drug might not work on them at that time and they die. Others think TB is a spiritual sickness and they see no reason why they should take medicine for something that is spiritual” (KII, 35y/o, Female, Facility 1).
In addition, not only do these misconceptions hinder prompt enrollment unto treatment but also leads to interruption of treatment. Patients wrongly attributed the intake of anti-TB medication to the threatening symptoms they experienced, such as coughing of blood. These misinterpretations influenced the decisions of clients to seek treatment from herbal and spiritual centres, which they believed to be more effective in the treatment of TB. For example, a patient stated that “I took it [anti-TB drugs] for two months...Then I went for herbal treatment [for one month]” (40y/o, Male, Facility 2). Relatedly, it was also reported that family members influenced clients to default treatment because of their lack of knowledge about the treatment.
In relation to the provision of counselling services, the results show a gap in the quality and availability of the service to clients and their contacts. The lack of psychologists to provide professional counselling to clients especially difficult clients (patients who miss treatment frequently), was observed. Patients expressed the stigma they experienced from their spouse, family, and employees without prompt counselling support. A client, for instance, stated that “My family members started avoiding me because they all thought it [TB] was deadly and that I was not going to make it. My wife even packed her things and left with the kids to their family house…Even if I ask an employee to do something for me, they give me excuses because they do not want to get close to me. They will say TB is more deadly than HIV” (42y/o, Male, Facility 3). These experiences left patients confused, hopeless, which affected their behaviour. However, there was no readily available counselling service for such clients.
Healthcare workers challenges
It was observed that the healthcare providers lacked protective gears for infection prevention as they provided treatment for the patients. Health care providers were required to monitor the swallowing of anti-TB drugs by clients. The health workers usually get closer to the clients for them to feel accepted and catered for. However, without the necessary protective wares, caring for the patients becomes threatening to the safety of the staff who attend to especially patients in the intensive phase of treatment. Thus, the psychological wellbeing of health workers treating TB clients was also affected. In some cases, the relationship between patients and health workers was strained out of the fear of infection experienced by health workers. A client lamented on her encounter with a health worker due to her inability to observe the required coughing etiquette while in at the DOTS centre. She stated that “I cough but I use my hand to cover my mouth but the way she [health worker] shouted at me, that made me quarrel with her. I told her not to talk to patients like that” (26y/o, Female, Facility 1).
In addition, there is low staff strength at DOTS centres. This indicates an increase in the workload of staff. Activities such as home verification and home support visits were hindered. The staff who are overburdened with high workload also face the challenge of lack of physical motivation. More so, health care providers reported the challenge of inadequate funds available to allow for the frequent home visits of TB patients.
Coping strategies adopted
The main themes that emerged include, Physical as well as mental and spiritual mechanisms.
Physical coping mechanisms
Patients described behaviour modification strategies they adopted to overcome challenges experienced in accessing TB treatment. Participants who lived far away from the facility resorted to travelling at dawn. One client said, “I come all the way from Swedru [a town outside the study area] so I have to wake up around 3 am and pick the first car to this place”(40y/o, Male, Facility 2). This indicates that the high TB prevalence as measured in Greater Accra Region may be imported cases from other regions. Clients also modified their behaviours by refraining from smoking and the intake of alcohol. Others broke off relationships to avoid risky behaviours, thus enabling them to continue with the treatment. A client stated that; “If I should be moving with my friends I will start drinking again. It’s been a while since I met with them” (48y/o, Male, Facility 3).
In addition, patients who perceived health facility DOT as frustrating resorted to self-administration of treatment as a favourable mechanism. SAT was common among the aged, critically ill, and clients who were unavailable for health facility-based DOT due to travel schedules. This mode of treatment was supervised by health workers. A client stated that “They told me that when I take it for a week, I have to bring the pack for them to see. Then it proceeded to two weeks, three weeks and then a month” (26y/o, Female, Facility 1). Furthermore, swallowing anti-TB drugs with cold water and breaking tablets also enhanced the ingestion of drugs.
Again, relocation to a different community was a means a client utilized in the face of community stigma. A couple who faced this challenge relocated into a family house, farther away from DOT centre. Though this act had transportation cost implication on accessing regular treatment, it was an intermittent agency to avoid communal stigma.
In addition, to some clients marriage provided financial, emotional and physical support to some TB client. The performance of reproductive roles such as house chores by male partners in support of their spouse was observed. A patient who was married pointed out that, “Throughout my sickness, had it not been for my husband...I don’t think I would be alive by now” (38y/o, Female, Facility). Similarly, support for TB patients was also obtained from other relatives, friends and community members. Other clients coped with the treatment burden through alternative source of incomes. Furthermore, the readily available assistance from physicians enhanced management of adverse effects of drug intake.
Mental and spiritual coping mechanisms
Developing a positive mindset towards treatment was a resource resorted to by patients despite the adverse physical, financial, societal and drug-related burdens they experienced. For instance, a patient who was abandoned by his family members developed a mental coping resource to overcome his challenges. He stated that
“So because of the stigma, I have been able to psyche myself about how people relate to me. Now I understand everybody. As a result, I am fine now” (42y/o, Male, Facility 3). In other cases, non-disclosure of TB and denial of the disease were adopted as supported with the quotes below:
“I did not want to tell them[friends] because my mother sells food and if I should tell my friends, maybe my mother’s market will go down”(29y/o, Male, Facility 1
“As for me, I knew I had not gotten any TB so I was not scared…I do not worry because I believe I do not have the illness” (63y/o, Male, Facility 1).
On the other hand, a spiritual coping mechanism was also reported, such as the belief in the existence and power of God in healing diseases. Some patients relied on this spiritual belief to cope with challenges such as deteriorating health, fear of the death, and inability to comply with treatment. For instance, a client pointed out the source of her strength in coping with treatment demands. She stated that “…whatever I ask God that is what he will give to me…I always ask him [God] to strengthen me…I combine house chores with pregnancy and TB treatment. God helped me” (26y/o, Female, Facility 2).