Adolescent Qualitative Study


Adolescents’ experiences of multidrug-resistant tuberculosis and of participation in clinical research: a qualitative study.

Adolescents experience a large burden of tuberculosis (TB) disease including multidrug-resistant (MDR)-TB.  However, they are often excluded from research, despite their biological and social characteristics needs for inclusion in research.  The views of adolescents towards participation in research have been poorly described to date, particularly in resource-limited settings. It is critically important to increase their involvement in future TB research.  This qualititative study is a sub-study of a larger study characterizing the pharmacokinetics and safety of the secondline anti-TB drugs in HIV-infected and uninfected children.  The focus is on adolescents (young people between the ages of 10 – 18 years old) who have been diagnosed with MDR-TB, and who also participate our ongoing clinical research.  Pharmacokinetics is the study of what happens to medications in the body, and involves drawing blood to test the amount of the medication in the blood after taking a dose.

After informed consent and assent, individual interviews are conducted with adolescents to gain a better understanding of their experience of having MDR-TB and of participating in clinical research.  The study also includes a “body-mapping” session during which the participant can identify which part of his/her body experienced pain or discomfort affected by MDR-TB.  The recorded interviews are transcribed and analyzed.  This study is targeting 12 adolescents for enrolment and will be completed during 2015.

The results of this study will help to understand adolescents’ views of clinical research and will help to inform important efforts to better involve adolescents in TB research and address their physical and social needs.

Principal Investigator: Sr Klassina Zimri:

Prof Anneke Hesseling: