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Table 3 Perception and challenges regarding reporting of adverse events related to DR-TB treatment from the health providers’ and patient’s perspective

From: “Side effects--part of the package”: a mixed methods approach to study adverse events among patients being programmatically treated for DR-TB in Gujarat, India

Themes

Sub-theme

Verbatim quotes

Health system related

Provider related

Acceptance and neglect of the AEs

“Side effects, which will be definitely there, as it is MDR TB, I counselled (my) best to the patients to continue the drug as they will be get used to side effects eventually”(Male, STS, Rural)

“There is no other treatment regimen available free of cost, patients have to complete course or have to die with TB.” (Male, DOTS provider, Urban)

Stigma and discrimination towards patients

“They are defaulters, they always complain more and adhere less to prescribed medicines” (Male DOTS provider, Urban)

“When I visited theeye department in district hospital, the nurse asked me to maintain distance from other patients as she realized I am a TB patient.” (Male patient Urban)

“I always ask them to contact medical facility, but defaulters have tendency to no believe in what we say…” (Male DOTS provider)

Health care facility related

Poor capacity and no Standard Operating Procedures

“Whenever, we asked for help regarding side effects, he (DOTS provider) directly refers me to district hospital which is far and not worth attending, they take lots of time and send me from one department to another department.” (Female patient, Urban)

“She (DOTS provider) sent me to ANM then to PHC and lastly to district hospital, why not (send me) directly there, it took me seven days to get proper care” (Male patient, Rural)

“I rarely attend any MDR TB cases, they have such a complicated treatment regimen, I always refer them directly to higher centre or give them some antacids, nothing can be done at PHC.”

(Female MO,PHC Rural)

Lack of coordination between DR-TB centre and hospital

“We know, the patients have to suffer a lot in tertiary care centre for AE management, but we have to send them to concerned department for consultation.” (Male, program manager, Urban)

“With multiple referrals in government hospitals, patient have to come back without being attended many times due to high load of patients. It would be better to have special OPD for them” (Male, program manager, Urban)

Program related

Lack of guideline and training for AE identification and management

“I want to help patients, but I am not sure what I can do at my level for such a disease”(Female DOTS provider-Nurse Urban)

“We could not decide based on symptoms and history alone whether it is really AE or complication of MDR TB.”(Female PHC-MO Rural)

Lack of proper counselling support and empathy

“Medical Officer has scolded me for my repeated complaint of diarrhea and he has asked me to either continue or stop the medicines. Eventually I learned to stop medicines temporarily whenever I do not feel good” (Male patient, Urban)

“Doctor had advised me on the first day of treatment that, being defaulter of TB treatment, I have to bear all side effects of higher dose anti-TB drugs”. (Female patient, Rural)

Patient related

Patient level

Misconceptions

“Side effects are good in a way which promises early cure.” (Female patient Urban)

“Side effects are sign of effectiveness of drug which is killing power of Bacteria.”(Male patient Rural)

“Medicines are free for us, why to complaint for that.” (Female patient Rural)

Previous treatment experience

“I have visited district hospital twice and they took two days for referring me from one department to another for my abdominal pain and lastly, they have given me same tablet which was prescribed by ANM for acidity.” (Female patient Rural)

“I have visited many times, various clinics, which resulted in no relief. Inspite of that, now I stop taking drugs for few days whenever I do not feel good” (Male patient, Urban)

Accessibility and affordability

“I am already not able to work and I could not further afford visiting (the) hospital (Male patient, Rural)”

“I asked for help regarding skin rashes and ANM referred me to district hospital which is far and time consuming, I cannot afford to lose my day” (Male patient, Urban)

“Why to report side effects, doctor will add some more vicious drugs…” (Male patient Urban)

Nature of Adverse Event

I was having tinnitus since so many days but I didn’t bother for that, once I realized my hearing hadreduced, I reported to ASHA the same.

(Female patient, Rural)

  1. DOTS Directly Observed Treatment Short course, ASHA Aaccredited Social Health Activist, STS Senior treatment supervisor, MO-PHC Medical officer, Primary Health Centre, ANM Auxiliary Nursing Midwives