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Table 2 Challenges and Supporting Factors which Emerged in the Four Phases of RR-TB Treatment

From: “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa

 Pre-diagnosis: Patient was symptomatic but had not yet been diagnosed with RR-TBPre-treatment: Patient had been diagnosed with RR-TB but had not yet been started on treatmentTreatment: Patient was prescribed and/or taking treatment for his or her RR-TBPost-treatment: RR-TB treatment was complete but the patient was still managing consequences of having survived RR-TB.
Challenges
  A very confusing and difficult time. Multiple challenges to negotiate  
Physical challengesPhysical 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 challengesLong waiting times and long queues at all health facilities. 
Health system complicated and challenging to negotiateMultiple care providers at different facilities: Co-ordination and communication between them sub-optimalAfter 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 diagnosisAccessing RR-TB services necessitates long distance travel. RR-TB patients stigmatised, so that travel is discriminatory and frighteningShorter regimen preferable, but longer regimen preferable if chance of cure increased and pill burden decreased 
Economic challengesLoss of income from not working. Additional expenditure of the cost of transport to health facilitiesDue 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 diagnosisLoss of identitySense 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 challengesUnable to continue with household responsibilities eg. child-minding, cleaningDisclosure – implications and fear of stigma and discriminationHospitalisation – someone else needed to take over family and household responsibilitiesInadequate community awareness and understanding of TB and its transmission
 Stigma affected whole family, including at workSocial isolation during hospitalisation due to transport costs for family to visit patient 
 Some sources of support rejected the patient on hearing their diagnosisContinued 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-TBImportance of nurses: Main providers of information, care and supportNurses identified as the most important source of support and information both in hospital and after dischargeNeed 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