Objective: 1. To synthesize a series of published and non-published qualitative studies, conducted in Chiang Rai, Thailand between These qualitative studies investigated the socio-cultural factors associated with adherence to TB treatment among HIV-positive TB patients (TB/HIV) 2. To develop educational material based on the research findings in order to promote adherence to TB treatment among TB/HIV patients. Background and setting: Chiang Rai is one of the provinces with some of the highest rate of TB and HIV. AIDS is the leading cause of death in the province (164.4/100,000). TB has re-emerged as a public health problem in the province due to the HIV/AIDS epidemic since Tuberculosis (TB) is a leading cause of morbidity and mortality in people with AIDS (PWA) Despite the availability of TB treatment and directly observed therapy (DOT), adherence to TB treatment is problematic due to serious AIDS stigma and AIDS fatalism

Cambodia Myanmar China Laos Vietnam Bangkok Chiang Rai -Population 1.2 millions (hill tribe 13 %) -93% completed compulsory education -1 regional hospital, 16 district hospitals, -212 health centers, 3 private hospitals -Diagnosis and treatment for TB and HIV are available in community (district) hospitals Chiang Rai, Thailand Major research findings: AIDS related fatalism is common due to high AIDS mortality in Chiang Rai. People in most communities have witnessed that every AIDS patient eventually died. There was no ways to survive if persons are infected by HIV. Health workers and community people also observed the high mortality resulting from TB although TB treatments were given to the patients (see figure of treatment outcome)

New TB rate by HIV status per 100,000 persons in Chiang Rai Province,

Cohort Analysis of TB Treatment Outcome of New AFB-smear- positive Pulmonary TB cases among HIV-positive in Chiang Rai Province (adjusted transfer cases), TB/HIV Research Project (RIT-JATA) 5

Major research findings (continue) High AIDS and TB/HIV mortality negatively influenced the attitude and behavior of patients and community people. They believed TB is not curable if patients are co-infected by HIV. TB/HIV patients and family were discouraging with their HIV infection. They had no motivation to treat TB, especially when patients perceived side-effect from anti- TB medicine. AIDS fatalism and AIDS stigma caused non-adherence to TB treatment among TB/HIV patients. However!!! Patient adherence may be promoted through the following assumptions: 1. Love: patients live with someone who care and concern for patients or patients live with the ones they love. 2. Key health education message: “Taking anti TB medicine is the best way to prevent TB transmission to your loved ones because it kills TB germs” 3. Learning from other patients: Patients and family members see photos and hear stories of previous TB/HIV patients who were successfully cured despite complex health and psycho-social problems

Several TB/HIV patients who knew about HIV positive status at the time of TB diagnosis and could not cope with HIV, tended to be non-adherent to TB treatment. TB/HIV Research Project(RIT-JATA) “… When my husband went back home, he was angry with himself and he was upset about everything. He refused to eat and rejected his medicine. He threw the pills away. He did not take TB medicine at all”. (female TB/HIV patients)

Translating social science research into action! We have developed a booklet aiming to reduce AIDS fatalism and AIDS stigma, with an ultimate aim to improve attitude and adherence to TB treatment. The booklet is composed of two parts: Part I: Essential knowledge about TB/HIV. The most common misperceptions about the TB and HIV from research are discussed. Part II: Patients’ stories and patients’ best practice for high adherence to TB treatment. TB/HIV patients’ photos and their real stories are presented. These patients report how they overcame with various difficulties during TB treatment course. The booklet will be ready by the 2004 International AIDS Conference (July). Impact of the booklet on patient adherence will be evaluated.

I love my mom and dad. Doctor said if I take medicine, I will not spread TB. Therefore, I must take the medicine. I must prevent my parents from getting TB from me. (Photo was taken at the time of completing TB treatment) Patient story: A TB/HIV female patient, age 34, widow. Prior to TB diagnosis, she felt close to death. She was extremely tired and could not eat. Her body weight was decreased to 32 Kgs. At the beginning of starting TB treatment, each day she spent an hour trying to take anti-TB medicine because of difficulty in swallowing medicine. She was suffered by the oral thrush. Whenever she swallowed medicine, she felt vomiting. She received warm support from her parents during taking medicine and could completed TB treatment. Her body weight was 5 Kgs. increased and she could resume to work.

Patient story A 42 years male patient, a rickshaw driver, being single, living with his father and sister. He was diagnosed as TB with HIV infection and was treated for TB. A home health care nurse visited his home and found that after taking anti-TB medicine for a week, he stop taking medicine by reasoning that he could not tolerate with the medicine side effect. He felt very sick, consistently vomited and could not eat any foods. He was discouraging, depressed and accepted to die. His father and sister felt hopeless to cure TB because of co- infection with HIV. The patient was sleeping alone and looked very depressed when the nurse visit his house. The nurse discussed with the patient’s family about the importance of taking anti-TB medicine and the need of psychological support from the family to the patient. Adhering to the nurse’s recommendation, the family cheered up the patient and encouraged the patient to take medicine. After three months of TB treatment, the patient put on his body weight, felt much better and could resume to work.

Photo credit: Amornrat Viriyaprasopchoak From a patient suffering from TB/HIV to be a happy person living with HIV TB/HIV Research Project (RIT-JATA)

Acknowledgement Japanese Foundation for AIDS Prevention (JFAP) and Ministry of Health, Welfare and Labor, Japan supported the study The great contribution of all patients who kindly give permission to release their photos and their valuable experiences in achieving high adherence rate to TB treatment. Maitree Oo-ngern, Utoomporn Thapthimchai, Maleerat Sampantasit, Patcharin Duangkaew, Oranuch Nampaisan, Boonchai Chiyasiriroj, TB/HIV Research Project (RIT-JATA), Chiang Rai, Thailand for their kind assistance in coordinating with the patients and preparing patients’ photos.