| Challenges |
| | | A very confusing and difficult time. Multiple challenges to negotiate | | |
| Physical challenges | Physical symptoms disrupted normal activities of daily living | | Adverse events experienced by all patients. These varied from those that impacted significantly on patients’ lives to being tolerable. | Permanent disability due to treatment |
| Additional health challenges eg. pregnancy and co-morbidities | | Pill burden difficult to tolerate | |
| | | Patients weak and inadequate physical support from hospital staff to bath etc. | |
| | | Adverse events not always addressed in a timely fashion | |
| Health system challenges | Long waiting times and long queues at all health facilities. | |
| Health system complicated and challenging to negotiate | Multiple care providers at different facilities: Co-ordination and communication between them sub-optimal | After discharge from hospital, due to poor communication there was inadequate care at outpatient facilities. | Inadequate information on adverse events and possible permanent disabilities |
| Multiple visits prior to diagnosis | Accessing RR-TB services necessitates long distance travel. RR-TB patients stigmatised, so that travel is discriminatory and frightening | Shorter regimen preferable, but longer regimen preferable if chance of cure increased and pill burden decreased | |
| Economic challenges | Loss of income from not working. Additional expenditure of the cost of transport to health facilities | Due to permanent disability unable to continue working - severe economic impact on the household |
| | | | Confusion regarding access to disability grants during treatment. | |
| Emotional and psychological challenges | | Receiving news of diagnosis and the implications of this diagnosis | Loss of identity | Sense of loss and anger with permanent disability. No longer the same person |
| | Anxiety and concern about infecting others | | Anxious about becoming ill with RR-TB again |
| Social challenges | Unable to continue with household responsibilities eg. child-minding, cleaning | Disclosure – implications and fear of stigma and discrimination | Hospitalisation – someone else needed to take over family and household responsibilities | Inadequate community awareness and understanding of TB and its transmission |
| | Stigma affected whole family, including at work | Social isolation during hospitalisation due to transport costs for family to visit patient | |
| | Some sources of support rejected the patient on hearing their diagnosis | Continued stigma and discrimination | |
| | Disruption of family relationships | | |
| | Masks – a visual sign of stigma and discrimination | | |
| Supporting factors | | | | |
| | A previous experience of a family member who had had RR-TB | Importance of nurses: Main providers of information, care and support | Nurses identified as the most important source of support and information both in hospital and after discharge | Need for support continued after treatment completion |
| | Relocation back to family for support | | Religious faith and the support of religious leaders important for some patients. | |
| | Physical support with activities of daily living difficult (ADL) | | | |
| | Support with household responsibilities eg. child-minding as visiting facilities took time | | | |
| | Emotional support and encouragement by family member to keep going to health facilities | | | |
