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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-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.

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