Understanding Tuberculosis: Perspectives and Experiences of the People of Sabah, East Malaysia

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.

Understanding pediatric tuberculosis: Perspectives and experiences of the parents in a city of India

“…In study done by Paz-Soldán et al also reported that parents of child were really selective in disclosing the condition of their children and parents who disclosed the child condition to other family member got tremendous love and care that helped lot in completing the treatment of child. [11] In agreement with other studies, [10][11][12] the suffering experienced by these participants was primarily linked to the likelihood of being discriminated against, which made them feel stigmatized. Despite TB being a curable disease, many professionals' different streams such as psychologists, anthropologists, sociologists, and TB analysts have repeatedly indicated that talking about the disease still causes discomfort and unease.…”

Tuberculosis in medical doctors – a study of personal experiences and attitudes

“…[18,20] Patients who were not adequately educated about the cause of TB, and who felt embarrassed about having contracted the disease, combined with negative attitudes on the part of healthcare staff, discouraged them from seeking early treatment. [10] Tests such as chest X-rays and sputum analysis, which are accepted to be part of the standard care of practice in the national healthcare system, [3,11] were not conducted in all participants in our study. It is possible that participants who could not produce sputum were sent for alternative tests.…”

“…[6] The risk of developing TB among HCWs depends on factors such as occupational category, age and use of TB infection control measures in the workplace. [7] While a number of general population studies have been conducted globally on the attitudes and psychological impact of contacting TB, [4,[8][9][10] little or no work has been done among HCWs generally, and particularly among doctors who are at greater risk of exposure than the general population. A qualitative study on the impact of drug-resistant TB on 5 medical doctors in SA found that 4 of them experienced adverse effects owing to medication, which in some continued for several years after treatment was completed.…”

A systematic review of global cultural variations in knowledge, attitudes and health responses to tuberculosis stigma

“…9,10,[25][26][27]30,31,34,35,[37][38][39][40]42,49,55,58,71,[74][75][76][77][78] Patients with TB often consult traditional healers in Gambia, 74 South Africa, 40 Uganda, 10 Thailand, 77 Malaysia 76 and the Philippines. 78 Traditional herbal medicine is used by Samoans in the United States.…”