Perceptions of Research Bronchoscopy in Malawian Adults with Pulmonary Tuberculosis: A Cross-Sectional Study

Abstract

Bronchoscopy is an established research tool in Malawi, enabling collection of pulmonary samples for immunological, pharmacological, and microbiological studies. It is, however, an invasive clinical procedure that offers no direct benefit to volunteering participants when used in a research capacity alone, and thus informed consent is essential. This study aimed to explore TB patients’ understanding of research bronchoscopy, what would motivate them to participate in research bronchoscopy, and their concerns, in order to inform consenting processes for future clinical studies. We used a qualitative research design. Two focus group discussions were conducted with community members and TB patients to understand their perceptions of bronchoscopy. Transcripts were coded by multiple co-authors and thematic content analysis was used to analyse main findings. We found that Malawian patients with pulmonary TB were willing to participate in a study using research bronchoscopy for health assessment and access to improved healthcare. We identified information of value to potential participants when consenting to that may lessen some of the anxieties expressed by participants. Patient and public involvement is essential to improve informed consent and institutional trust.

A Malawi guideline for research study participant remuneration

“…Appropriate payment was related to the basic minimum wage ($3.50 per day) and to the amount a person might earn in the market selling goods ($80-300) 16 . In a study of prospective participants in research bronchoscopy in Malawi, focus group discussion confirmed that remuneration for travel, food and lost earnings would be sufficient 33 and follow-up with these authors confirms that focus group discussion participants did in fact attend for multiple bronchoscopies…”

“…There is a long tradition of both community- and hospital-based research in Malawi, and remuneration has been used in each of the three categories discussed above. As in other regions, financial remuneration is not the key motivational factor underpinning research participants involvement decisions in Malawi 14 and Kenya 23 — participant considerations of gaining access to otherwise inaccessible health care, examination and medical tests are equally if not more important 33 .…”

“…Travel expenses on difficult journeys with food and accommodation costs are often paid to research subjects in Malawi 14 . Where transport is difficult, involving multiple stages, crowded vehicles and long waits a private vehicle is sometimes provided as an alternative and is appreciated 33 . In addition, young people and frail adults are usually accompanied on public transport.…”

Perceptions about and reasons for participation in research bronchoscopy in Uganda: A qualitative analysis

“…The use of bronchoscopy as a research tool has mainly been limited to patients with clinical lung disease [1]. However, recent studies of healthy individuals exposed to patients with TB have begun to examine human protective immune responses against TB [2,3]. Little is known about the reasons that motivate otherwise healthy individuals to undergo or decline research bronchoscopy.…”

“…Previous exploration of reasons for participation in research bronchoscopy studies among volunteers in Africa [2]. Europe and the United States revealed personal benefit, including health assessment, perceived future access to health care when ill, and remuneration as factors influencing willingness to undergo bronchoscopy.…”