Pre-diagnosis: Patient was symptomatic but had not yet been diagnosed with RR-TB | Pre-treatment: Patient had been diagnosed with RR-TB but had not yet been started on treatment | Treatment: Patient was prescribed and/or taking treatment for his or her RR-TB | Post-treatment: RR-TB treatment was complete but the patient was still managing consequences of having survived RR-TB. | |
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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 |