We conducted a qualitative research study using semi-structured interviews and focus-group discussions in August and September 2011. We examined patients’ opinions, views and experiences of home-based treatment and care for MDR-TB versus their assertions of care in hospital. We also identified how these views compared with those of their families and other stakeholders involved with TB. These methods were chosen due to the exploratory nature of the research question, with interviews allowing an in-depth view to the opinions and experiences of respondents, and focus-group discussions showing group dynamics and general consensus versus anomalies regarding this topic. The principal investigator did not occupy the dual role of clinician and researcher, and therefore maintained a level of independence to reduce study bias.
Participants were identified and selected purposively following a stakeholder analysis, whereby all actors with a relationship to the topic (home-based treatment and care or MDR-TB) were mapped, and their likely view towards home-based treatment was rated from 1 to 5, with 1 being strongly negative view and 5 being strongly positive view. This mapping exercise also considered their likely influence, interest in the issue and any assumptions made. A range of different actors were then invited for interview through routine programme activities in order to explore the diversity of opinions on this topic. The principal investigator approached all identified participants outlining the study and requesting voluntary interview/focus-group discussion participation. Interviews and focus group discussions were audio-recorded and lasted around 60 and 90 minutes, respectively. Sample size was determined by data saturation being reached within each identified homogenous category of respondents: health-care receiving, health-care providing and key informants [19].
Interviews were based on the use of interview guides with prompts, allowing a participant-led and flexible approach to data collection. Interviews were structured around a core set of topics, including introductions, patient or family members’ experience of MDR-TB, as well as diagnosis and treatment; and their views on recommendations for future treatment provision. Conversation around these topics was participant-led and naturally flowed. Prompts and probes allowed particular topics to be explored in more depth, for example on asking patients if they spoke about having MDR-TB openly, it was then possible to explore their response to ascertain whether there was a fear of negative response or stigma. This approach allows for exploration of particular topics whilst still being participant-led and not risking asking leading questions. Topics used in health care provider and key informant interviews were slightly different, including an examination of the current system of treatment and care, acceptability of home-based care, adherence and stigma. An interpreter was used to translate questions and responses from Luo to English and vice versa in several interviews and discussions. A separate independent interpreter was used to re-translate interview recordings where possible to ensure validity of interpretations. Data were analysed throughout the entire course of the research, in that from the moment data were being generated the “thinking and theorising” began [20]. This iterative process of data collection and analysis enabled adaptation of topic guides and testing of emerging themes. For example, following analysis of initial patient interviews a code around patient adherence to MDR-TB treatment emerged, which led to this being added as a specific topic within interview guides in order for this to be explored further. Data were managed initially through verbatim transcription of all recorded conversational interviews. Systematic analysis of transcripts was conducted to identify codes, relevant themes, patterns and concepts compatible to a deductive grounded theory approach. A framework analysis was used to subdivide the data as well as assign categories to ascertain the most significant themes and patterns, with relationships between constructs, as well as deviant cases, being identified [20,21].
Formal ethics approval was gained from the London School of Hygiene and Tropical Medicine, MSF Ethics Review Board and Ugandan Ethics Review Board prior to the study commencing. Prior to interview commencement and recording all participants voluntarily gave their informed written consent. Confidentiality of respondents was ensured through the use of pseudonyms and data storage protection procedures. Feedback mechanisms were used to ensure participants were aware of the findings of the study and could choose to opt out.