Health

BARRIERS TO ACCESSING HEALTHCARE SERVICES

Introduction

This chapter presents the results of the study regarding the barriers which restricted pulmonary tuberculosis (PTB) patients from accessing healthcare services. This chapter examines why barriers manifested within the community setting and the healthcare system influenced access to healthcare services. Several barriers were identified which included fear of infection, influence of poverty on accessing healthcare services, health-seeking behaviour of PTB patients and delay in seeking treatment, finally health beliefs and their influences on accessing health services. The results for each sub-theme are presented below along with a discussion in the light of the literature

FEAR OF INFECTION

The majority of Akure South community members interviewed described PTB as contagious, infectious and associated with HIV/AIDS. Many people do not want to associate with PTB patients because of the disease,as indicated in the following extracts: Our community members perceived PTBas a very scary disease mainly because it is {highly} transmittable and often associated with HIV/AIDS and work of evil spirits. The fact that their community members did not have a clear idea about PTB infection led them to avoid socializing with PTB patients regardless of their treatment history. (Community-Nominated Leader 2: interview)

I had somebody who was being warned about moving closer to another man who is infected that the disease might affect him. So, people believe it can affect them. (Church pastor: Interview) If the infection is seen to be very serious, such person can be told to sit outside. Such individual will even be told to pack his mat so as not to spread the infection. We always pray that any illness that will be terrible should not befall us. When such infected person gets better he can come back. (Muslim community leader: Interview) Yes, the type of society where we are is no orientation or awareness of what TB is. People might decide to exclude that person from the society to the extent that the person will stay in a place where people will not come near him or her so they will not get infected too. (Receptionist 1: interview) As soon as the diagnosis is made, they don’t want the patient to sleep on the ward again. They will immediately transfer the patient to CDU (Communicable Diseases Unit); even as late as 5:00 p.m., you will see them bringing the patient from Ward A to CDU; they won’t allow the patient to stay there for the night just because of fear of infecting others. (Community Doctor 1: interview) The fear of infection is driven by the lack of PTB awareness and knowledgethat the disease is incurable therefore people assume that the disease will kill them which lead to delay in seeking medical help.They do not know that it can be effectively treated. Due to fear of infection and the disease having similar symptoms as HIV/AIDS, this result to the PTB patients be isolated themselves and refuse to seek medical help for their PTB disease at the onset of their illness and causes delay in accessing to the diagnosis and treatment.

Several PTB patients reported fear and denial of their diagnosis; some patients had difficulty accepting their diagnosis often wanting to hide their disease not only because of stigmatisation but the fear of negative consequences of irregular treatment and long period of treatment adherences. … I did not inform anyone because I know how people talk; before you are aware, everybody will isolate themselves from you. Somy fear was be isolate from my people (PTB patient3: interview) …people have different opinions about TB, so I did not tell anyone. But they noticed that I was sick and had loss a lot of weight. Anytime they ask me, I just tell them that I am sick and go to the hospital for treatment. I did not inform anyone that I have PTB; I deny that I am having PTB or know anything about the disease. (PTB patient5: interview) I was shocked and doubted the results at that time, so I tried to find out if it was not a mistake from the laboratory; I was very confused, I went home and came back the following week to confirm if it was truly the result was mine. When I finally accept the treatment, I was scary of the duration of the treatment and how I will cope (PTB patient3: interview) The above evidence demonstrated the fear patients encountered during their PTB illness. In the evidence the patients experiences three layers of fears. The first two quotes was about denial of the disease due to fear of isolation, the third quote was the patient relation to fear of long duration of treatment. The dimension of patients fear is driven from the social context of illness as stated by Lienhardit, et al (2003, p195-291) in the study of patient adherence to tuberculosis treatment “Patient choice in taking treatment is framed by the physiological and psychological impacts of the disease and also by the social and cultural structures in which the person is immersed” Therefore there is a need for the patient motivation and willingness, for support during the ill process.

A community leader reported how in the past PTB patients were banished from the community because of fear of infection: Before the arrival of the foreigner (British doctors), any PTB patients always banished from the community and regard them as an abomination in the traditional society as a result to fear of infection (Community-Nominated Leader 1: interview) The community members explained the traditional culture on how PTB patients were being treated before the arrival of orthodox medicine. These patients were regarded as an abomination, and they were banished from society so that other people in the community would not be infected. It was reportedby the community doctor that some nurse’s negative behaviours towards PTB patients were due to fear of infection and lack of protective material for the nurses to use while they are on duty. However, due to low shortage of staff and salary not be paid regularly which will be discuss more on health system gap, many patients were not be attended to in time these result to delay in treatment. The majority of the HCWs, particularly those working outside the PTB clinic, expressed their fear of the disease when interacting with PTB patients. This fear usually intensified due to lack of materials to protect them: The general attitude of health care workers to patients in the country is not satisfactory for me, you empathize with the patient; you give time, counsel, help, and pay attention to them. Most health care workers don’t even have all these (community doctor3: interview). There is nothing to work with no glove for staff and sometimes our salary was not being paid for 5 months and still we need to come to work. How then can we protect ourselves and control infection? (Nurse 2: interview) In terms of the ratio of personnel to patients, the ratio is very low in Nigeria, and this definitely causes delay too as the person wouldn’t be able to attend to large numbers of the patients at the appropriate time. (Doctor3: interview) Most of the HCWs, particularly working at the PTB units, indicated that equipment required for them to do their work was not usuallyprovided. They pointed out that because the health management gives less priority to the needs of the PTB programme and services, logistics they need for day-to-day running of the units were not provided, resulting in lack of basic material and equipment. However,Menzies et al., (1998) stated that the major risk of infection with PTB is when someone spends prolonged periods with the smear-positive patients. Similarly (Menzies et al., 1998; Meredith et al., 1996; Kilinc et al., 2002) indicatedthat the problem is poorly recognised in the developing world. Further researchstudies indicated that health professionals in resource-poor countries are also at a higher risk of acquiring PTB in the course of their work Schwartzman et al., (1996); Seidler et al., (2005). Curran and Ahmed, (2000) Argue that, some of the healthcare workers were been immunized before their appointments but due to lack of fund, not all the staff were protected from the risk.This can be argue that some of the nurses were fearful of getting infected, they treat PTB patients not very well, so they distance themselves from the patients because they were frighten, of be infected by the disease. When patients do get to their clinic they don’t treat them very well. This means that the patients do not necessarily get a good quality care which they should have had because the nurses were frightened of getting the infection.

THE INFLUENCE OF POVERTY IN ACCESSING HEALTH CARESERVICES

The influence of poverty in accessing health care services was reported by several community members and healthcare workers that poverty was one of the problems of PTB sufferers, although the drug is free but other treatment may require to be paid for by the patients, especially when the disease iscoupled with other diseases that may need more testing or further investigation. Some of the effects of PTB described by the patients were related to financial difficulties they faced.PTB patients indicated that they had to stop selling, especially food items, when they developed the disease. They pointed out that although they did so to enable them to concentrate on treatment, if they had decided to continue selling and taking PTB treatment at the same time, when the community members get to know they have PTB, no one would come to buy from them. Other determinants of health such as food, transport to the healthcare centre and accommodation are some of the barriers preventing them from accessing services.

Below are the responses from church FGPon financial difficult faced by the PTB patients in accessing health services: Participant7: The lack of money and accessibility are the main problems, fear of people having been afraid of the disease if people should know that there are PTB patients, how are they going to take it. Fear of stigmatisation. Another barrier is depression, people are depressed they will not know what to do or come forward for treatment. (Church FGP Participant7: interview) Participant 4: Poverty level in this part of the world cannot be over look because when you are so poor the cost of the treatment and travel to the health centre can easily chase you away, even you would want to go there and ask. (Church FGP participant4: interview) Participant1Food is barrier, in that the government provide free drugs to the patients but is one thing for the drug to come to the body is another thing for the drug for the body to be able to take the drug due to lack of body components, and the body building for the drug to work. [] in one-word poverty is a major barrier. (Church FGP participant 1: interview) Lack of money could be another barrier, in terms of transportation for the patients to access health centre. (Pham doctor interview) Most of the community members reported that the major problems of PTB sufferers were poverty related. poverty result to the patients not be able to buy food, lack of money for transport and without food the body may lack the body component that require for the medication to function well. They may not be able to pay for transport to the centre for treatment. In addition, fear of stigmatisation may not allow them to seek help and led to depression.

For instance, a study by Zhang, et al (2005) on perceptions of tuberculosis and health seeking behaviour in rural Inner Mongolia, China. This study identified that socio-economic factors influence the tendency of accessing diagnosis and health care on TB. Similarly, Tang, and Squire (2005). Stated that the most vital factor was income, which was also considered to be a barrier to health care in other areas, Furthermore, Wang, et al (2002) study on anationwide income on TB patients, indicated that poverty limited TB patients’ access to and affordability of health care, because of high treatment costs and opportunity costs. When patients decided to seek care, they had to resort to low value providers who charged lower prices. Why the patients are shopping around this result to delay in diagnosis and treatment, in which it can increase the spread of infection among the community members. Despite the evidences in the cases of the issues of the PTB patient’s poverty relating to accessing health care services nothing has not be done by the government to assess the patients with this problem.

Several patients described the challenges they faced in accessing healthcare services due to lack of financial issues as indicated below: Only from God and from the drug the government provides. I was a trader before my sickness and was traveling around the country selling but because of the sickness, my business has collapsed. I have no money I have exhaust all my savings to access treatment. (PTB patient1: Interview) Yes, lack of funds for transportation may impair access to treatment. (PTB Patient 3: interview) Funds for transport and support are the challenges encountered by PTB sufferers from accessing treatment and cure. ((PTB Patient 4: interview) No other aids are provided as pertaining to money or food. (PTB Patient 5: interview) The patients reported that they often exhaust their savings to access treatment from health facilities. Since it is difficult for them to make money during the time of their illness, PTB patients are forced to expend their savings on their needs as stated above. However, because the disease is often experienced by the poor, their savings are not always enough to sustain them throughout the lengthy treatment period.Afundamental issue reported by the patients on accessing treatment was poverty. As demonstrated by Jackson et al. (2006, p1104–1110) in a study of socio-economic factors affecting the success of tuberculosis treatment in six counties of Shandong Province, China, ‘poverty is both a determinant and a devastating outcome of PTB; it is closely associated with the socioeconomic status of the population, and a chief contributor to the vicious circle of poverty and disease among rural residents’. Similarly, Dubos (1987, p. 25) stated that ‘the TB burden falls among populations with high levels of chronic poverty and malnutrition’.

It was reportedby both community doctor and Pharmacistthat several PTB patients complained about the problem they faced in relation to transportation from home to the clinic and other material due to funds. However, this fear of lack of money to travel to the healthcare centre results in a delay of most of the patients in seeking help from the appropriate healthcare centers. Even though [health care] facilities are close to the people, the people still have problems coming to the health care centers, probably due to the absence of funds to transport the patient to the healthcare center. (Community Doctor 2: interview) Although most participants said that though TB-drugs were free, treatment cost was still a major concern, especially in rural areas where the poverty was low. The cost included travel from homes to health facilities or hospitals, daily food in hospital, tonic drugs, etc. Therefore, patients and their families had to spend much more money on necessities than usual; lack of money could be another barrier, in terms of transportation. (Pharmacist Director: interview) The quote above indicated that poverty was one of the key reasons why some of the patients were not seeking medical help from the onset of their PTB illness. Although some PTB patients clearly agreed that treatments are free, but the perceived high treatment costs especially the traveling cost to hospital and other necessary material they may require why visiting hospital can be a problematic if there were no money this can lead to delay in accessing health care services and result to delay in diagnosis and treatment.The fact thatpharm staffs that have directly contact with PTB patients identified that financial barrieris a major issue among PTB patients that result to delay in accessing health care services. In support of my finding a study by Brundney and Dobkin (1991) on tuberculosis and poverty that examine whether the historical link between tuberculosis and poverty still exists.Poverty and social deprivation are thought to have played a part in the rise of the incidence of tuberculosis. It was stated that Poverty results in poor nutrition, which is likely to render the immune system more vulnerable to invading organisms, in addition, overcrowded living conditions can cause by poverty which increases the risk of disease transmission Leitch (1992).

It was reported by the HCWs that PTB patients stated that it was very difficult for them to work and come to the hospital for their medication due to lack of money for transport. They also referred to the difficulty they face due to the PTB disease. Thesevere cough while they are in the public and lose of weights which were embarrassing; therefore it was very difficult for them to earn money to maintaining themselves during their illness. The PTB patients complain that it affects their lives. One, when you have severe complications of TB, you can’t go to work, a frequent cough in society, in gatherings, they keep coughing, everybody feels embarrassing. If you lose weight and you don’t have enough strength, you cannot work too. (Community Doctor 1: interview) Before they come for treatment every day because they complained of a shortage of funds for transport they were advised to come once in a month for treatment as this will help reduce their costs of accessing treatment.” (Nurse 1: interview) The majority of the PTB patients received good quality care from the HCWs when they visited the hospital for their medication. However, they reported that some complained about the cost oftransport to travel to the clinic on a regular basis to receive their medication was a problem. To accommodate this issue one of the nurse reported that patients were advised to attend monthly as opposed to daily to receive their medication In most cases, the doctors ordered the nurses to give patients about four weeks’ medication to take home until they were able to come back for more drugs. From analysing the findings there was a consensus expressed by the HCWs that poverty and especially the cost of transport to attend the healthcare centre were the common reasons for patients to delay in accessing treatment. Community members reported that access to the healthcare centerfor PTB patients is challenging due to the location of the healthcare centers: The challenge is the accessibility to the treatment center. The location of the DOTs, I can tell you are very far to the patients and you know these things are persistence because of that they just keep away and stay with themselves. (Church focus group5: interview) Lack of money and accessibility are the main problem (Muslim women focus group7: interview) The challenges faced by the PTB patients in term of accessibility to the healthcare services has been pointed out by the community members and this result to some delay in the diagnoses and treatment.

health-seeking behaviour of PTB patients and delay in seeking treatment

Information gathered from the PTB patients, carers and HCWs revealed that most people seek different vendors before coming to the hospital. In most cases hospital was their last option as patients preferred spiritual and traditional treatments: I just used a mixture of lime juice, honey, and ‘Epa Ijebu’ (native medicine). I was also eating bitter kola and licking Tom-tom (menthol sweet). When all this did not work I went to the chemist where I was given drugs. The symptoms subsided at this point but then later came back. (PTB patient1: interview) …when it [a cough] became excessive was when I came to the hospital here for diagnosis and treatment. (PTB Patient 4: interview) I managed to sustain myself through the night. When the day broke, I came to the General hospital [for diagnosis and treatment].(PTB Patient 3 interview) Some the patients’ perceptions on PTB disease show that they have a clear understanding of the disease from a biomedical point of view. They seek help at the onset of their PTB disease. While patients (N=6) adopted a different approach to seeking healthcare without delay to sought medical help immediately when experiencing symptoms: I decided to come to the hospital immediately after experiencing coughing. (PTB patient 6: interviews) The above quotes indicated that some of the patients do sought medical help when they experience symptom at the onset of their PTB disease, this may be due to knowledge or having had the disease before.

The quote below demonstrated cultural morns that influence how PTB patients seek help from their onset of their illness. Many still visited traditional healers or medical vendors first until there is not cure they then sought healthcare help as their last option after they have no result from different medical vendors or traditional healers. These often delayed in diagnosis and treatment as indicated in the quotes below: There are still people that visit patient’s medicine vendors, traditional healers, mission houses, deliverance homes manned by religious bodies to seek assistance in a way. There are people that still believe PTB is a curse, either from their ancestors or a punishment from gods. (Doctor 1: interview) Some even say the disease is always inherited, but because it keeps re-occurring in their family, they go to traditional healers looking for cure, until the disease gets to a very bad stage, and then they come to hospital that is one of the barriers. (Nurse2: interview) Some people prefer going to the traditional healers when they are sick where they are given herbs. These may persist until they find someone to direct them to the hospital for treatment (PTB patient1: interview) Some Christians believe you don’t have to use drugs before they are healed. Even when they are advised to go to the hospital they prefer to pray and expect healing while their condition worsens. (University FGP1: interview) This is what I said initial, our people the local people belief in traditional healers which is not western medicine for any of their illness. (Community nominated leader1)

As the above quotes indicated that many patients still delay in seeking medical help why some approach HCWs at the early onset of their symptoms. Some still influencesby cultural norms and beliefs surrounded the PTB disease, which made them to visit other vendors.The majority of the HCWs interviewed and community members stated that most of the PTB patients, when experienced symptoms of tuberculosistheir first approachedwas traditional healers, church or private doctor while seeking help for their PTB illness. This view was also supported by Schroder (1985).Which stated” TB patients had visited a traditional doctor or faith healer as their first step of treatment. SimilarlyIngstad, (1989), indicated that patients may claim that“Illness may be caused by God, or spirits of ancestors, by witchcraft or by pollution”.This finding showsan association between visiting a traditional or faith healer at the onsetof their symptoms rather than visiting healthcare services. The delaying in shopping around influenced by the beliefs which people held as to what caused PTB disease.

health beliefs and their INFLUENCE ON accessing Health services

T Community perceptionsof PTBvaried,often due to a lack of information or awareness about the cause of disease. The Muslim community stated that PTB infection is predestined for sufferers from the disease.They beliefs that lack of food malnutrition can as well cause it. Whilethe church focus group stated that the community members stillbeliefs that the disease is caused by punishment from the gods for their wrong doings andtherefore only the gods can heal or cure it. This traditional way of seeking help before theadvent of Orthodox medicinestill have a great influence in their decision on treatment options: PTB happens to only to those who are predestined to suffer from it. (Muslim FGP Participant1: interview) I don’t know the causes of PTB. Some say if you don’t eat well. I know a man in Lagos that takes tea and little bread and then goes in search of daily work. He later came down with the illness and died as a result (Muslim Community Leader: interview) Actually, before the advent of Orthodox medicine, when someone has the disease in the community they will contact the elders the traditional healers, they will consulted the gods at that time, they said it was the result of punishment from gods they will appealed to the god and said o.k. and asked them to bring things to sacrificed and bring so on. After that, they will give herb Concoction (Church FGP1: interview) Due to the little knowledge of the disease and a lot of misinformation that has been disseminated around the communities about PTB overtime, patients and/or their carers/relatives choose the kind of treatment they want to undergo. While they are doing this it may result to the delay in accessing healthcare services for diagnosis and treatment to stop the spread of the disease. It was reported that majority of the patients are not aware of the early symptoms and sign of the disease, they have no knowledge of the causes, therefore they attributed it to many things such as punishment from gods and cultural beliefs due to lack of information. Most people are not aware of the early signs of tuberculosis. They are not aware of the fact that it is caused by a microorganism. They attribute it not fulfilling religious rites or tenets. They are not aware of where drugs are and how they can access them. They don’t know where to go to. Many people don’t go to the correct places. So, lack of information and cultural orientation are major barriers to treatment of TB.(Community Doctor 1: interview) …people attach so many things to cough [PTB], they either think it’s a punishment for one’s offense to the gods or the person is a witch or wizard that the gods want to expose. (Community Doctor 2: interview) As stated above,people are likely to be of the mind-set that the disease is a curse, results from being bewitched or punishment from gods. The cultural orientation of people can determine their lifestyle and set of beliefs. As earlier stated that some people believe that PTB infection is a spiritual attack, culturally sensitive or an inherited disease and it is difficult for individuals to break free of such mental conditioning in which various beliefs about PTB were identified. These actions result in delaying in seeking medical help at the early stage of the symptom. Instead of coming to the hospital for free treatment, some were of the opinion that coughing manifests as a result of being bewitched. Community members stigmatize infected individuals because they are regarded as unfortunate. As evident discussed in previous chapter on traditional healers, where they admitted that they are the only ones that can provide a remedy for successful PTB treatment which make many of the patients seek their help. Almost all the participants mentioned that accessibility to DOTS centre was one of the major problems for the PTB sufferers. The location of the DOTs centres may be far or near to their houses and they may not want to expose their disease to others neighbour or friends. Despite the fact, that facilities are close to the people, the people still have problems coming to the health care centres, probably due to the absence of funds to transport the patient to the healthcare centre (Doctor2: interview). Well if am to talk about the state right now, presently there are active cases around, but the challenge is the accessibility to the treatment centre. The location of the DOTs I can tell you is very far to the patients and you know these things are persistent because of that they just keep away and stay with themselves. I think the major challenge is the accessibility to the treatment centre. (female focus group interview) That another barrier is transport, people travelling to the centre for treatment is a challenge. (community focus group interview) but the challenge is the accessibility to the treatment centre and the healthcare workers attitude toward PTB patients. The location of the DOTs I can tell you is very far to the patients and you know these things are persistence because of that they just keep away and stay with themselves. I think the major challenge is the accessibility to the treatment. (church focus group interview) The evidence above demonstrated that PTB patients were faced by lack of financial problems during their illness. These financial issues result to most of them not to access health care services because they could not afford or no help from anywhere to assist them. Several other authors had look at the impart of health determinant on PTB patients stated that individuals with TB symptoms such as constant cough, mostly face substantial social and economic barriers that delay their contact with health systems in seeking treatment and diagnosis to be made and result to difficulties in transport to health facilities,Van, et al (2004). Furthermore, Somma, et al (2008)Argue that lack of social support to seek care when they fall sick is very fatal. It is very important to address these factors in the daily living conditions of PTB patients and their communities that might influence PTB disease.

Summary

The ethnographic approach used in this study yielded insight on fear of infection, poverty, and stigmatization in relation tobarriers inaccessing healthcare services by the PTB patients.Having identified the individual perspectives of the various groups’ responses, the findings indicated that there are similarities on both parties’ responses. Theparticipants in the community groups (i.e. community-nominated leaders, chiefs, church leaders, Muslim leaders and focus groups with community members) all believed that fear of infection, poverty, and stigmatization were the major issues that prevented PTB patients from accessing the healthcare services provided for them. The majority of the patients and community members still believed that the PTB disease was caused by an evil spirit, and therefore the natural course of action was to seek any medicines that can cure the disease. This belief resulted in some PTB patients seeking help elsewhereas a result of this member of Akure south society, PTB patients were seen to possess attribute(s) that threaten the survival of the society which make people not to associated with them. However, even the few patients who sought treatment from traditional healers later sought modern medicines when they did not get better, traditional medicinal plants have been used by traditional healers who claimed that they can treat a chronic cough. Another reason that emerged from the study was inadequate knowledge on PTB among patients and community members. This could be caused by the unavailability of information and insufficient publicity surrounding PTB issues as mentioned. The major fear identified by the community groups was the stigma associated with the disease. When the result of the PTB diagnosis is revealed to patients, it creates a fear of isolation and discrimination created by the local beliefs of community members. Sometimes this discrimination of PTB patients persists even after they are cured. Poverty was reported in the study as an issue related to treatment and transport to the clinic center. The majority of the patients were jobless, and they worried about how they would support the family during their illness. In the HCW group, the doctors’ and nurses’ responses were similar. They believed that fear of infection and stigma were not the major issues because in most cases, the patients were ignorant and had little trust in healthcare treatment. They preferred to visit local healers before coming to the healthcare clinic. By the time some of them visited the hospital, their condition had deteriorated, and some died during the process. The study observation revealed that most of the health staff did not realize the impact of PTB on the lives of their patients, as there was a limited discussion between the health staff and the patients regarding the problems the patients were facing. The perceptions of the patients and the community about PTB were quite different from those of the healthcare providers. The HCW group thought that the majority of the patients understood or had knowledge of the disease. They did not realize that the knowledge of the patients and the community was poor and that the effects of the disease were considerable. Some were not aware that the patients were embarrassed at being diagnosed or that negative attitudes of health staff may deter patients from seeking treatment early. The only health talk, while I was in the hospital, was when the nurses spoke to the patients on how they should avoid sharing household items with PTB patients. The nurses did not mention the extent to which the health staff contributed to the perpetuation of the stigma by not educating patients about the disease.