Improving tuberculosis care in low income countries - a qualitative study of patients' understanding of "patient support" in Nepal

Background: In the new Stop TB Strategy for Tuberculosis (TB) Care, direct observation of treatment has been replaced by "supervision and patient support". However, it is still unclear what patient support means and how it is to be best implemented. The objective of this study was to accurately document patients' support needs during TB treatment from their own perspectives, to inform development of appropriate support and supervision strategies that meet patients' needs. Methods: In-depth individual interviews and focus group discussions were conducted in three districts in Nepal. Analysis took place concurrently with data collection to allow emerging issues to guide selection of subsequent interviewees. In total 23 patients, 15 male and 8 female, were interviewed and six focus group discussions were held. Issues from these interviews were grouped into emergent themes. Results: Respondents reported that the burden of treatment for TB was high, particularly in terms of difficulties with social and psychological aspects of undergoing treatment. They saw three main areas for support during their treatment: relevant information for them and their families about their disease, its treatment, potential side-effects and what they should do if side-effects arise; approachable and supportive healthcare staff with whom patients feel comfortable discussing (often non-medical) problems that arise during treatment; and some flexibility in treatment to allow essential elements of patients' lives (such as income generation, food-growing and childcare) to continue. They were anxious to ensure that family support did not absolve healthcare workers from their own support responsibilities. Conclusion: In order to support people with TB more during their treatment, health policy and practice must appreciate that TB affects all aspects of TB patients' lives. A focus on caring for each patient as an individual should underlie all aspects of treatment. Improved communication between healthcare providers and patients and increased patient knowledge and understanding of the treatment programme would give those receiving treatment a sense of individual empowerment and raise their confidence in treatment.