Findings and analysis of qualitative user study of tuberculosis patients in rural

Assam, IndiaHimanshu Seth and Keyur SorathiaIndian Institute of Technology (IIT) Guwahati

Introduction – TB (World, India and Assam)

• As per the WHO Global TB Report 2011, there were an estimated 8.8 million incident cases of TB globally in 2010, 1.1 million deaths among HIV-negative cases of TB and an additional 0.35 million among people who were HIV positive [1]

• In 2009, out of the estimated global annual incidence of 9.4 million TB cases, 2 million were estimated to have occurred in India, thus contributing to a fifth of the global burden of TB [1].

[1] TB INDIA 2012, Revised National TB Control Programme, Annual Status Report

Introduction – TB (World, India and Assam)

*1 :: RNTCP Case Finding and Treatment Outcome Performance, 1999–2010*2 :: RNTCP Case Finding and Treatment Outcome Performance, 1999–2010

Populationcovered by

RNTCP

No. ofsuspectsexamined

Rate ofchange insuspectsexamined

per s+ case

diagnosed(compared

toprevious

year)

Totalpatients

registeredfor

treatment

Annualnew extrapulmonary

case notification

rate

Assam*1 302 lakh 147642 -1% 39788 18

Kamrup district*2

29,00,000 16116 8% 4016 19

Tuberculosis treatment

Tuberculosis treatment

Tuberculosis treatment

TB medication box (retained by DOTS provider)

TB medicine blisters (given to the patient)

Aim of the study

• Investigate problems faced by TB patients

• Understand existing situation of incoherence of DOTS

• Access to diagnosis and treatment

• Social and family dynamics, technology usage and literacy among the TB patients

The overall aim is to gain insights in order to propose design of ICT interventions to

overcome current problems

Methodology

Contextual inquiry – one-to-one interviews• 10 tuberculosis patients• 2 ASHA workers • 3 health technicians

Methodology

1. Bishnuram Medhi Community Health Center, Haju, Kamrup

2. North Guwahati P.H.C, Guwahati

3. Guwahati Medical College, Guwahati

4. Amingaon Sub Center

Findings, Insights and Analysis

Non-adherence to TB therapy

Patients discontinue medication at their own will and do not follow a proper treatment schedule.

Following reasons were surfaced for in adherence: (a) Patients think that they have completely recovered when the

medicines start showing effect

(b) They are demotivated to ingest medicines (the side effects of the medicines acts as a deterrent for adhering to the medication)

(c) Some patients have to take a day off from work to visit the health center. Long distance of DOTS provider from home demotivates the patients to adhere to directly observed treatment

Lack of basic knowledge

Almost all of the patients interviewed, lacked basic knowledge about the disease including their medical situation, information about tests etc.

None of the health centers or sub center was equipped with information mediums like information boards, leaflets, cards etc. at their disposal through which the patients could gain knowledge about the disease.

Lack of basic knowledge

Provided medical card is in English, creating a barrier for users to refer it for health checkup history

Majority of the patients and their family members generally consult healthcare technicians to gain any kind of knowledge about the disease

Most of the patients and family members (guardians) in particular lacked the interest to learn about the current state of the patient and gain knowledge about the same

Local pharmacist are trusted more

Patients deter and shy away from approaching the doctors with initial symptoms and approach the local pharmacist instead.

They mistake their symptoms for regular cough and approach local pharmacists, who due to lack of expertise is unable to identify the disease at the initial phase. The patients then are advised to go to a doctor in the health centers when their condition deteriorates. This leads to a significant delay in disease identification and hence the treatment, increasing its severity.

Insufficient time with ASHA for direct observation

ASHA workers do not have enough time to supervise medications for each and every patient, so they leave the medicines behind with the patient and hence the therapy is not directly observed.

ASHA workers collect the empty blisters from the patients as a proof of ingestion of medicine. However, it does not confirm the consumption of the medicine by the patient according to prescribed schedule.

Idle waiting time at health centre

Patients, while taking medicines at health centers, sit idle for an average time of 20 minutes, without no-to-negligible interaction with the health care workers. This is repeated thrice a week, every time they visit the DOTS provider to ingest medication.

Social dynamics

Most of the patients agreed to have received information / suggestions about the disease from the peers in the village

ASHA workers hold a respectable position in the village

There is no-to-less social stigma concerning the disease in the regions of Kamrup district

Family members of all the patients interviewed were very supportive and ready to take care of the patient

Technology literacy

Mobile phone is used as a shared resource between family members, and sometimes between neighbors

In most of the cases however, the technological know how is limited to making and receiving calls

When given a choice, patients prefer to have face-to-face conversation (for asking queries etc.) with the health care workers rather than choosing an opportunity to use a technology (like mobile phones) for the same.

Overall, unawareness of tuberculosis among the people suffering from tuberculosis, leads to hesitation in medication and sometimes

discontinuation of the treatment in between, which results in a changes in their treatment

category and duration.

We believe that,Increased awareness and TB education among users will motivate, hence users will continue their medication, and ensure their presence during medication

Opportunities for ICT interventions

1. Idle waiting period of patients at the DOTS center, during their medication

Opportunities for ICT interventions

1. Idle waiting period of patients at the DOTS center, during their medication

2. Active involvement of peer and other community members in medication and awareness

Opportunities for ICT interventions

1. Idle waiting period of patients at the DOTS center, during their medication

2. Active involvement of peer and other community members in medication and awareness

3. Use of health workers (especially ASHA members), virtually, to initiate TB education and awareness among users

Opportunities for ICT interventions

1. Idle waiting period of patients at the DOTS center, during their medication

2. Active involvement of peer and other community members in medication and awareness

3. Use of health workers (especially ASHA members), virtually, to initiate TB education and awareness among users

4. Face to face interactions are preferred medium than mobile phone

Thank you