The Journal of Health, Population and Nutrition icddr,b ISSN: 1606-0997 EISSN: 2072-1315 Vol. 28, Num. 2, 2010, pp. 114-123

Journal of Health Population and Nutrition, Vol. 28, No. 2, March-April, 2010, pp. 114-123

Original Paper

Understanding tuberculosis: Perspectives and experiences of the people of Sabah, East Malaysia

Christina Rundi

Public Health Division, Sabah Health Department, Ministry of Health, Malaysia

Correspondence Address:Christina Rundi, Sabah Health Department, Public Health Division, 1st Floor, Federal House, 88814 Kota Kinabalu, Sabah, Malaysia, christinarundi@sbh.moh.gov.my

Code Number: hn10015

Abstract

Malaysia is a country with the intermediate burden of tuberculosis (TB). TB is still a public-health problem in Sabah, one of the two states in East Malaysia. In 2007, the state of Sabah contributed slightly more than 3,000 of 16,129 new and relapse cases reported in the country. It has a notification rate of two and a half times that of the country's. Very few studies on TB have been conducted in Sabah, and there is little docu­mentation on the perceptions of TB patients and the community about TB, healthcare-seeking behaviour, and impact of TB on the people of Sabah. A qualitative study was conducted in 2006 in seven districts in Sabah to assess the knowledge and perceptions of TB patients and the community about TB, also to know the experiences of healthcare services, and to examine the impact of TB on patients and families. Purposive sampling identified 27 TB patients and 20 relatives and community members who were interviewed using a set of questions on knowledge, perceptions about TB, healthcare-seeking behaviour, and impact of TB. A further 11 health staff attended informal discussions and feedback sessions. Most interviews were taped and later translated. Data were analyzed using thematic content analysis. Ninety-six percent of the respondents did not know the cause of TB. Some thought that TB occurred due to a 'tear' in the body or due to hard work or inflammation while others thought that it occurred due to eating contaminated food or due to sharing utensils or breathing space with TB patients. Although the germ theory was not well-known, 98% of the respondents believed that TB was infectious. Some patients did not perceive the symptoms they had as those of TB. The prevailing practice among the respondents was to seek modern medicine for cure. Other forms of treatment, such as traditional medicine, were sought if modern medicine failed to cure the disease. TB was still a stigmatizing disease, and the expression of this was in both perceived and enacted ways. TB also affected the patients in various aspects of their lives, such as psychosocial, physical, financial and life practices. Patients who were farmers complained that they did not recover fully from their disease and were not, thus, able to continue with their previous work. Patients changed their life practices, such as not sharing their utensils, had a separate sleeping area, and practised social distancing. On the other hand, most health workers were unaware of the effects of TB on their patients and that knowledge of their patients on TB was inadequate. There is a need to understand the reasons for the misconceptions about TB and to address the lack of knowledge on TB through health education. Patients need to recognize the symptoms of TB early so that prompt treatment can be initiated, and patients need to be convinced of its curability.

Keywords: Knowledge, attitudes, and practices; Qualitative studies; Perceptions; Tuberculosis; Malaysia

Introduction

Tuberculosis (TB), a disease of ancient time as re-vealed by DNA analysis of tissue samples from mum-mified bodies and skeletal remains of more than 5,000 years ^[1] , is still a public-health problem. It is one of the most important yet neglected interna-tional health priorities ^[2] . In 2007, it was respon-sible for an estimated 1.32 million deaths among HIV-negative people and an additional 456,000 deaths among HIV-positive people ^[3] . Based on surveillance and survey data, the World Health Or-ganization (WHO) estimated that 9.27 million new cases of TB occurred in 2007, a rise of 30,000 from the previous year ^[3] . The sufferings of TB patients, in terms of physical and economic consideration, have been reported, including rejection as a result of the stigma associated with TB ^{[4],[5],[6],[7],[8],[9],[10]} .

TB is endemic in Malaysia with a notification rate among smear-positive patients of 36 per 100,000 in 2007 ^[11] . Sabah contributes one-third of the total cases in the country and has a notification rate for all cases of 100-200 per 100,000 people for almost a decade now ^[12] . Sabah, one of the 13 states in Malaysia, is located in the Borneo Island. The ma-jor ethnic groups are: Kadazandusuns, Muruts, Bajaus, and Rungus. Although the majority profess to either Islam or Christianity, some still hold on to ancient beliefs and practices.

TB is a social disease, and healthcare-seeking be-haviour among patients is influenced by gender, age, socioeconomic and social status of female, type of illness, access to services, and perceived quality of the service ^[13] , which often interact in a complex web. People can be confused as to the im-plications of TB symptoms, costs of transportation, the social stigma, the high cost of medication, and perceptions of patients about clinic facilities as un-friendly, and all these contribute to the complexity of the disease ^[4] . To tackle the huge problem of TB in Sabah, it is important to address all these issues. Very little is known about healthcare-seeking be-haviour of the people in Sabah with regard to TB. The specific objectives of the study were to assess the knowledge and perceptions of TB patients and the community about TB and the experiences of healthcare services and to examine the impact of TB on patients and their families. The findings pre-sented here are based on a qualitative study, which explored healthcare-seeking behaviour with regard to TB among the people of Sabah and the impact of TB on patients and their families.

Materials and Methods

Study population

Thirty-two indigenous groups comprise the people of Sabah, with over 80 locally-spoken dialects with a wide variation in traditions and cultures. This study was conducted in seven districts: Kota Kinabalu, Penampang, Putatan, Tuaran, Kota Marudu, Kudat, and Keningau. Kota Kinabalu is the state capital with a mixture of all ethnic groups. Penampang is a predominantly Kadazan area where one-third of the population belong to this ethnic group while the neighbouring district of Putatan is a predomi-nantly Malay area (57%) ^[14] . Around 45% of the people in Tuaran are Dusuns, followed by Bajaus (29%). Similarly, around half of the people in Kota Marudu are Dusuns. In contrast, two-thirds of the population of Kudat are Rungus while in the interior district of Keningau, two-thirds are of the Kadazan-Dusun-Murut ethnic groups ^[14] .

The author developed a conceptual framework to facilitate the exploration of healthcare-seeking be-haviour among the respondents. In this framework [Figure - 1], the author has combined the elements from the Health Belief Model ^[15] , Health Care Utiliza-tion Model ^[16] , the four ′As′ [Figure - 1] and the pathway model ^[17] . The perceptions of patients on severity and benefits to therapy-choices help conceptualize healthcare-seeking behaviour. These perceptions are influenced by other factors, such as psychologi-cal, socioeconomic, and gender. The roles of ′sig-nificant others′ and need and enabling factors also provide cues for taking action for treatment. The enabling factors include availability, accessibility, affordability, and acceptability of therapy-choices. Based on this framework, the main areas explored were recognition of symptoms, healthcare-seek-ing behaviour, perceptions about illness, perceptions about care, gender difference in seeking healthcare, effects of TB on patients and family members, and reactions of the community towards those with the disease.

Sampling methods

Purposive sampling was used for looking for infor-mation-rich respondents, and a sampling matrix was created to identify them [Table - 1]. The health staff of the selected districts assisted in identifying respondents from each group.

Conceptual variables

Data collected for the conceptual variables during in-depth interviews were on local terminologies of TB, recognition of symptoms, perception of TB patients and the community about illness, health-care-seeking behaviour, knowledge on TB, percep-tions about care, effect of disease on the patient and family, and the community perceptions about TB. Health staff were asked questions on reasons for seeking treatment by patients and knowledge of patients on TB.

Collection of data

In-depth interviews were performed on 27 TB pa-tients from seven districts and on 20 other respon-dents who were either spouses, relatives, or other people in the same village as the patients. Inter-views were carried out as agreed by the respondents in terms of time and place. Seven respondents were interviewed in the nearest clinics and the remain-ing respondents in the home. Translators were needed for five interviews. The choice of transla-tor was important, and to ensure confidentiality, they were not recruited from the same village as the respondent. Only two translators were needed throughout the study. All interviews, except for the first two, were tape-recorded with verbal permis-sion from the participants. The health staff partici-pated in the discussions and feedback sessions in the clinics during visits to selected districts. These were informal sessions to gather information, such as on reasons for seeking healthcare.

Analysis of data

All in-depth interviews took 60-90 minutes. Tran- scription of interviews was performed immedi-ately and in the language in which the interview was conducted. Each transcription took 4-6 hours. These were then translated to Bahasa Malaysia (national language). Analysis of data was done in several stages throughout the study in the nation-al language, using thematic content analysis. The first stage was to find common themes, such as symptoms, causes, healthcare-seeking behaviour, and perceptions about care. The second stage was a more rigorous process of analyzing the content for the emergence of new categories and sub-cate-gories. This was particularly important in identify-ing the various categories of the effects of TB and stigma. The third stage involved synthesizing the findings to look for relationship between the vari-ous themes to create a clearer understanding of TB as seen from the patients and the community per-spective.

Collection and analysis of data were performed by the author.

Ethical issues, such as autonomy, confidentiality, and anonymity, were observed throughout the study. The ethical approval for the study was ob-tained from the Ministry of Health, Malaysia.

Results

Characteristics of participants

In total, 27 patients and 20 non-patients, such as spouses, relatives, villagers, and traditional heal-ers, were interviewed in the seven districts. Eleven members of health staff were involved in the dis-cussion and feedback sessions. [Table - 2] shows the characteristics of all respondents.

The community perspective of TB

TB was relatively unknown in Sabah in the 1960s and was often described by its symptoms (chronic cough, coughing out blood or being very thin) as batuk kering (dry cough) or mengurus (becom-ing thin). TB was not regarded as ′the works of the evil spirit′, and, thus, the role of spiritualist was minimized. The two traditional healers who were in their 50s said that they were not taught on how to treat TB. According to them, such a disease did not exist when they started their training at the tender age of 10 years. Instead, they believed that TB was due to hard labour and contaminated food and could be treated through traditional rituals, such as sacrificing pigs. Traditional medicinal plants were also used by the local inhabitants for generations to relieve symptoms of many diseases and cure various infections. This knowledge was important for their survival, especially among those who live in the interior. The two traditional healers had also used medicinal plants for treat-ing their patients with chronic cough and loss of weight.

When asked as to the cause of TB, the prevailing notion was that there was a ′tear′ inside the body which eventually became ′rotten′ making it pos-sible for ′something′ to enter the ′tear′ and caused TB. The ′tear′ could be due to several reasons; the main among these was hard work or inflammation of the stomach-lining (gastritis) (Box 1).

Some patients believed that they got the disease due to work and exposure to rain and sweat. Others believed that TB was caused by eating or drinking contaminated food; food that have been exposed to dirt, dust, or even the saliva of TB patients. There were some who agreed that TB was caused by germs but according to them, that did not explain how one got the disease. One patient thought that TB was hereditary because all his family members had TB, except for him and his sister. He was not surprised when he was told that he had TB. A 25-year-old clerk believed that she was weakened by TB, which made it easier for her to be ′charmed′ (Box 2).

Another TB patient believed that a ′charm′ has masked his disease, which was not detected despite repeated sputum and chest X-ray examinations. Af-ter his mother-in-law had sought the help of an ex-perienced healer, a visit to the clinic revealed a posi-tive sputum examination, and the X-ray revealed damage to the right side of his lungs.

Ninety-eight percent of the respondents agreed that TB was infectious and can spread through sharing of eating utensils and through face-to-face interaction. Among some cultures in Sabah, many social gatherings involved drinking local rice wine often served in a jar and sipped through bamboo straws. Many people of this culture opined that sharing cups and plates and also sharing the bam-boo straws were routes for the transmission of TB. Due to this belief, TB patients did not share utensils or meals with family members and others.

Healthcare-seeking behaviour

Cough was the commonest symptom, followed by loss of weight. The other respiratory symptoms ex-perienced were haemoptysis (coughing out blood), shortness of breath, and chest pain. Loss of weight was the commonest constitutional symptom, fol-lowed by fever. Other constitutional symptoms in-cluded loss of appetite, difficulty in sleeping, and lethargy. Some patients knew that they had TB be-cause they have heard of it or have experienced it in their family. Other patients thought that they were suffering from other diseases but had no idea about what these were. Others thought that they had diseases, such as diabetes, asthma, gastritis, breast cancer, and common cold. Among the non-patient respondents, cough and/or coughing out blood and loss of weight were identifiable with TB. The large majority (74%) of the patients sought treatment due to worsening of symptoms. If cough did not get worse, such as by becoming productive and persistent, this symptom would be ignored for a long time. However, if cough was accompanied with blood or difficulty in breathing or lethargy, treatment was sought promptly.

In most instances, patients rely on modern medi-cines for cure. Other options were also considered when modern medicines failed to cure the disease completely. One patient had sought treatment from a traditional healer before getting treatment from a government clinic because her family thought that she had been poisoned (Box 3).

Some people may not admit that they sought treat-ment from traditional healers as this was consid-ered a pagan practice. Most (81%) patients decided on their own as to when and where to seek treat-ment, although this was often influenced by family members and relatives. In the past, village headmen were consulted regarding treatment of diseases but such was no longer the case.

All the TB patients in the study eventually com-pleted their treatment. However, many, particularly men, felt that, as a result of TB, they often felt weak and never fully recover to their pre-illness physical state. Patients who were farmers find it difficult to continue farming due to residual weakness (Box 4).

Ninety-six percent of the patients told their fami-ly members about their disease, and some also in-formed church members, their superiors, and close colleagues at workplace. The reasons for not tell-ing other people outside the family-circle included worry over their reaction. Some felt that others did not need to be told and considered it embarrassing to be infected with TB. One respondent was wor-ried that people might equate TB with AIDS and, thus, distanced themselves from him.

All the patients initiated changes in their everyday living as a result of TB. These include separation of utensils, new sleeping arrangement, and reduced social contacts and activities. New sleeping arrange-ment could cause problems between husband and wife as revealed by a 45-year old housewife (Box 5).

In two rather extreme cases, the patients moved out of the house temporarily during the treatment period against the wishes of their families. One patient rented another flat not far from his family during his treatment period for fear of infecting his baby son. Another patient moved to a small barn which also served as a store for rice-stock for the family. Instead of being left on his own, his chil-dren, grandchildren, and relatives would sit and eat together with him and play in the barn to give him company. One patient was asked by his family to live in their farm-house and looked after their farm. He sold the farm-produce for money, and when there was none to sell, he begged for money from friends and the public.

Due to the stigma of the disease, TB patients who are single faced a poor prospect of marriage. This was revealed in an interview with a village head-man who was not a TB patient. In the local con-text, a village headman has considerable influence on the cultural aspects of the community (Box 6).

A couple with TB, who operated a small grocery stall in the village, had experienced stigma from the local community. As a result, they had to travel to another clinic, rather than the one in their vil-lage, to get their medicine, and in the early stage of their disease, their business was also affected as the villagers did not frequent their stall (Box 7).

It seemed that stigma did not disappear after cure. An elderly patient blamed a relative, who had TB, for her disease. Although that relative had com-pleted treatment, she was not sure whether he was completely cured. Stigma (perceived and enacted) might be deeply rooted within all the communi-ties but there are some evidence that stigma might have lessened over the years as observed by a pa-tient (Box 8).

Perception of TB care

Perceptions of the patients and relatives about care provided by the government and private clinics were generally fair. Most (91%) respondents stated that the care was good or that they did not encoun-ter any problems during their consultations with doctors. However, two did not wish to comment, and another two were frustrated with the doctors who could not diagnose their disease early.

The patients received good support from their families in various forms. Some family members supervised their medications, accompanied them for treatment, or volunteered to get their medicines for them. Some even took over the responsibilities of patients, such as tending the farm and cooking for the family. Despite such support, some patients often felt that they were not able to discuss aspects of their disease openly. They were often pre-occu-pied with what others thought of them, and this pre-occupation affected them emotionally and psy-chologically. Women tend to be more affected emo-tionally while men tend to worry over financial and physical aspects. The majority (67%) male patients (n=15) found it difficult to work as they need to go to the clinic regularly for treatment and, therefore, became dependent on others. Sometimes, they had to borrow money from relatives and friends for bus-fares. Other times, they defaulted as they have to earn the money for the bus-fares. Their spouses also felt the same burden (Box 9).

TB patients had little support from others, except support from their family members. In Sabah, a non-governmental organization-Sabah Anti-Tu-berculosis Association (SABATA)-renders finan-cial assistance and reimburses travelling costs. This needs to be done through the assistance of health staff who are responsible for the treatment of TB patients in their respective clinics.

Views of health staff about TB patients

Many health staff did not realize the impact of TB on the lives of their patients as there was limited discussion between the health staff and the patients regarding these impacts. The perceptions of the pa-tients and the community about TB were quite dif-ferent from those of the healthcare providers. The health staff thought that over 95% of the patients understood the germ theory which was often men-tioned during the health-education sessions. 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. It is not clear from this study the extent to which the health staff contributed to the perpetuation of stigma. During one visit to a clinic, one health staff was overheard advising a patient to use separate utensil. Whether such advice was given by other health staff could not be ascertained.

Discussion

It was apparent from the study that the germ the-ory was not well-known. The large majority (75%) of the respondents associated TB with a ′tear′ inside the body or due to hard work, eating contaminated food, or exposure to extreme conditions. Some pa-tients still believed in ′charms′ which made them vulnerable to TB. Most (89%) respondents believed that TB spread through means in which droplets or saliva or breathing space was shared, and one respondent thought that TB was hereditary.

There is a similarity in the belief that hard work causes TB between the Sabahans and other com-munities, such as the Vietnamese ^[18] , Mexican ^[4] , Achenese ^[19] , and Filippino ^[20] . Ninety-eight percent of the respondents believed that TB was in-fectious despite the poor understanding about its cause. This could be due to telling them the infec-tivity of TB by health staff and the need to isolate TB patients in special wards. In the past, TB patients were warded for the entire treatment period which could be as short as six months or as long as a year. However, this practice has changed. In some hospi-tals in Sabah, TB patients were warded during the intensive phase of treatment (2 months) or if they have none to look after them or when they could not comply with treatment for whatever rea-son. Such belief on the infectiousness of TB is in contrast to the belief among Vietnamese: if TB was due to hard work (lao luc), it is considered not contagious ^[18] .

Most (81%) patients did not attribute their symp-toms to TB. This is not surprising as the symptoms are not specific to TB and can wax and wane. This finding is not different from the study done in West Malaysia in which only 1.5% of the respon-dents attributed their symptoms to TB ^[21] . As TB was not due to the evil spirit, the natural course of action was to seek modern medicines. Even the few patients who sought treatment from the tradi-tional healers later sought modern medicines when they did not get better, perhaps after re-interpreting their symptoms. Traditional medicinal plants have been used by the traditional healers who were in-terviewed to treat chronic cough. The stem barks of Caesalpinia sappan of the Leguminosae family have been known to be used for TB treatment by the lo-cal inhabitants ^[22] .

Some reasons for the inadequate knowledge on TB among TB patients could be due to the unavailabi-lity of information and insufficient publicity sur-rounding TB. Another reason could be due to illit-eracy in Sabah which is still high. In 2000, 21% of the population aged six years and above never at-tended schools, and these ranged from 7% among the Chinese to 21% among the Bajaus ^[23] . As most health-education materials are in the form of pam-phlets and posters, the messages could not be ac-cessed by those who are illiterate. The use of other channels of communication, such as television and radio, might be just as ineffective. The electricity coverage for households, especially in rural Sabah, was reported to be 65% before 2004 ^[24] . Proper counselling sessions to TB patients were often not offered by the healthcare provider due to lack of resources and training.

Knowledge on TB which includes the correct un-derstanding of how it can be cured was found to be an important contributor to the completion of treatment ^[25],[26] . However, the extent to which knowledge on TB contributed to the completion of treatment was not explored in this study. Sub-sequent follow-up on all the TB patients who were interviewed revealed that they had completed their treatment.

Being diagnosed with TB can create the fear of iso-lation and discrimination. There was evidence of perceived and enacted stigma towards TB patients as expressed through certain acts, such as the use of separate utensils and reduced social contacts. Results of studies in other countries also revealed similar patterns, such as the use of separate utensils among TB patients in Amazon Peruvian commu-nity ^[27] , Zambia ^[10] , Kenya (28), and Thailand ^[29] . This could have subsequently contributed to the psychosocial effects on TB patients which re-sulted in low self-esteem and withdrawal from so-ciety, thereby creating a vicious cycle. Studies have shown that social marginalization may influence adherence of patients to treatment ^[26] but this was not explored in depth in this study. In this study, a couple who had TB was willing to visit another cli-nic to get their medicine despites being stigmatized by their community.

There was also suggestion that discrimination of TB patients persisted even after cure, which could be due to inadequate knowledge on the curability of TB. The persistence of stigma after the comple-tion of treatment observed in this study was also described among South Indian patients ^[30] . This might explain the reason why some people did not want to marry those persons who had TB. Discrimi-nation may persist because some TB patients did not recover fully to their pre-illness physical state and, thus, considered permanently weakened or deformed. For unmarried patients in Sabah, TB may affect their prospect of marriage similar to find-ings in Pakistan ^[31] and Zambia ^[10] . In a study in Pakistan, stigma was perpetuated by health staff who recommended ′voluntary social isolation′, to cover their mouth when coughing and to use separate eating-utensils ^[31] . In Kenya, stigma was perpetuated by health staff by isolating TB patients and the use of special measures, such as doormats being impregnated with chemical and the use of gloves before entering TB ward ^[28] . Whether cer-tain advice or activities by healthcare provider con-tributed towards stigmatization of TB patients was not explored in the present study.

This study contributed considerably to the un-derstanding of many aspects of TB, particularly the knowledge and healthcare-seeking behaviour among TB patients and the community in Sabah. It documented first-hand information on own expe-riences of patients and from other members of the community. It also covered the opinions expressed by different ethnic groups in seven districts. The findings could not be generalized to the whole population of Sabah in view of its multi-ethnic composition.

Assessing the internal validity of the findings was difficult as the truth is often subjective. There was some bias because the interviewer was health per-sonnel. Perhaps patients may not reveal their true healthcare-seeking behaviour for various reasons despite the assurance of confidentiality and ano-nymity. However, information from spouses, rela-tives and the community helped improve the va-lidity of the findings. The findings were considered reliable as all interviews used the same set of ques-tions and, where feedbacks and discussions were concerned, a predetermined guideline was used throughout.

Future research can explore healthcare-seeking behaviours among other ethnic groups and also among immigrant population. In addition, in-depth analysis of stigma would assist in reducing its effect on healthcare-seeking behaviour and on the lives of TB patients.

Although the WHO has provided very generic means in reducing the incidence of TB, such as to increase detection of cases and ensure high cure rate, lack of understanding on the community per-spectives, cultural practices and attitudes towards TB may be a reason why TB remains a threat. The findings of this study suggest that there is a need to understand the reasons behind the misconceptions about TB and address the lack of knowledge on TB. Patients need to recognize the symptoms of TB early so that treatment can be initiated promptly. A rein-forcement of the message-"cough of two weeks or more-think TB unless proven otherwise"-need to be conveyed to the community. The curability of the disease must also remain the key point. The messages should be ′sold′ as a package since frag-mentary information will allow the public to cre-ate their own understanding to replace the missing pieces. This information package will then have to be channeled through various and appropriate means to cater to the different needs of the popu-lation. More support from various groups, such as non-governmental organizations, private compa-nies, and government agencies, need to be garnered to help those affected by TB, especially those who are unemployed or self-employed. By taking such an action, facts about TB will be made open so that the stigma surrounding it will soon fade.

Acknowledgements

The author thanks the Ministry of Health, Malay-sia, particularly the officers and health staff of the Sabah Health Department, for their assistance dur-ing this study and also all the study participants for their invaluable contribution.

References

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