“I cry every day”: experiences of patients co-infected with HIV and multidrug-resistant tuberculosis. A qualitative study Petros Isaakidis1, Sheela Rangan2, Anagha Pradhan3, Joanna Ladomirska1, Tony Reid4, Karina Kielmann5 3
1Médecins Sans Frontières, Mumbai, India, 2 The Maharashtra Association of Anthropological Sciences – Centre for Health Research and Development (MAAS-CHRD), Pune, India Independent researcher, 4 Médecins Sans Frontières, Operational Research Unit, Luxemburg, 5 Institute of International Health & Development, Queen Margaret University, Edinburgh, UK
Introduction & Aim To understand patients’ challenges in adhering to treatment for MDR-TB/HIV co-infection within the context of their life circumstances and access to care and support.
Findings (continued)
Themes/Quotes Accessing Treatment: ‘the last chance’
Family caregivers were found to be crucial to the mental and physical health of patients, but were often exhausted.
“There is no other treatment and no way out. This is the end. There are no treatments after this, this is the last chance” (P6)
Being on Treatment ‘Worse than the illness itself´: side effects
Method Qualitative study using in-depth interviews with 12 HIV/MDR-TB co-infected patients 5 lay-caregivers and
MSF-providers recognized that the barriers to patient adherence were fundamentally social, rather than medical, yet were limited in their ability to support patients and their families.
9 health professionals
I have to take them daily. And I cry every day. Every day I cry for an hour....the place where they give the injection becomes stone hard. When I take the injection, I can‘t lift my legs, my legs hurt a lot and I am unable to walk. (P5) ‘Stay separately or stay far away’: stigma and loss of support I was dealing with it all by myself. I used to cry quietly. My mother in law was also very sad when she found out. (...) I only told her [my sister] and no one else. She also said she would not tell anyone as it was not something one can tell easily. (LCP1)
3 key informants The data were thematically analyzed along three dimensions of patient’s experience of being and staying on treatment: physiological, psychosocial, and structural.
‘I stopped going to work and stayed home’: the burden of care “I take care of him all day and I even stopped Going to work and stayed home for 3 months” (LCP4)
Discussion/ Conclusion Findings
Staying on Treatment: ”...so he gave me the pills to take at home”
By the time patients initiate treatment for coinfection, their family financial and emotional resources were often depleted.
“The doctor has helped by giving me the pills to take home and to take them later otherwise I get dizzy. Otherwise they say the pills have to be taken at the doctors place itself. ‘They helped me find courage’: the role of organisational and family support
Two-year daily Directly Observed Treatment (DOT) for MDR-TB along with anti-retroviral therapy seemed unrealistically demanding.
R [nurse] said if ever I did not feel well, or felt that I needed to talk, I was to give her a missed call [on her mobile phone] and then she would call back. (…) They have cared for me – more than my blood relatives. (P6)
The treatment adverse-events were severe and debilitating.
“When someone gets MDR [TB], why doesn’t anyone come?: the challenges of retention in care
Patients expressed frustration, anxiety and desperation regarding the burden of care and stigma on the social and financial viability of the household.
In our society, if someone gets malaria, ten people will help him, take him to hospital. Here nobody comes.... (MSF MD)
Illustrations by George Butler
Despite free care, counselling, and psychosocial support to patients and their caregivers, retention-incare and adherence to treatment for co-infected patients were problematic. New, safe, low pill-burden, and significantly shorter treatment regimens are urgently required, and alternative to DOT strategies should be developed. Specific interventions are needed to support families and caregivers. Current treatment regimens and case-holding strategies are resource-intensive and demanding, suggesting that scale-up of diagnosis and treatment for drug-resistant tuberculosis and HIV will remain challenging.