“It is not easy”: experiences of people living with HIV and tuberculosis on Tuberculosis treatment in Uganda

Ruth Nabisere-Arinaitwe*, Lydia Namatende-Sakwa, Josephine Bayiga, Juliet Nampala, Lucy Alinaitwe, Florence Aber, Brian Otaalo, Joseph Musaazi, Rachel King, Mike Kesby, Derek J. Sloan, Christine Sekaggya-Wiltshire

*Corresponding author for this work

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Completion of tuberculosis (TB) treatment presents several challenges to patients, including long treatment duration, medication adverse-effects and heavy pill burden. WHO emphasize the need for patient-centered TB care, but such approaches require understanding of patient experiences and perceptions.

In 2020, we nested a qualitative study within a clinical trial that recruited 128 HIV-TB co-infected adults in Kampala receiving rifampicin-based TB treatment, alongside anti-retroviral therapy. A purposively selected sub-sample of 46 trial participants contributed to nine gender segregated focus group discussions. Of these, 12 also participated in in-depth interviews. Sessions were recorded, transcribed verbatim and translated from local languages into English. Thematic analysis focused on drug adverse-effects, use of self-prescribed medications and barriers to treatment adherence.

Patients seemed more concerned about adverse effects that clinicians sometimes overlook such as change in urine color. Those who remembered pre-treatment counselling advice were disinclined to manage adverse-effects by self-prescription. Difficulty in accessing a medical practitioner was reported as a reason for self-medication. Obstacles to adherence included stigma (especially from visible adverse-effects like “red urine”), difficulties with pill size and number, discomfort with formulation and medication adverse effects.

Tailored pre-treatment counselling, improved access to clinical services, and simpler drug administration will deliver more patient-centered care.
Original languageEnglish
Article number100385
Number of pages6
JournalJournal of Clinical Tuberculosis and Other Mycobacterial Diseases
Early online date29 Jun 2023
Publication statusPublished - 1 Dec 2023


  • Tuberculosis treatment
  • Adherence
  • Experiences
  • Side effects


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