Listening to those on the frontline: lessons for community-based tuberculosis programmes from a qualitative study in Swaziland.

This study explored the experience of people involved in a new community-based tuberculosis (TB) programme in rural Swaziland. Patients have their treatment observed in the community after choosing a treatment supporter (either community health worker or family member) in dialogue with the TB nurse. Interviews were conducted with TB patients, treatment supporters, clinic nurses, nurses working in the hospital-based TB team and medical staff. The study generated two main themes: (1) issues relating to the TB programme and (2) wider societal issues. Both are important, however this paper reports only the issues directly related to the TB programme. The study found that community-based care is preferred to hospital care, which should be retained only for the very ill patients. The importance of selecting suitable patients and ensuring individualised and flexible arrangements was highlighted. Although treatment outcomes are known to have improved since introducing the new TB programme a number of issues require further attention. Communication between different levels of the health service needs to be improved and consultation communication skills, taught prior to introducing the programme, need to be refreshed. All relevant staff must be trained on the TB programme and patient education (on TB, HIV and treatment adherence) needs to be reinforced throughout TB treatment. Health education of the wider community is also needed. Ongoing support of treatment supporters must recognise that their role is not simply treatment observation. In this context, where the large majority of TB patients are HIV positive, better co-ordination with the HIV/AIDS services is required, including treatment of other HIV-related infections and home-based care for TB patients who deteriorate. Although the findings and recommendations of this study are context specific they are likely to be of relevance to other programmes.