Counseling needs of MDR TB patients

By shiva shrestha | 01 May, 2012

Dear members,
I am posting this query on counseling needs of MDR TB patients and request all the members to share their experiences. I understand that there has been some similar discussion on GHD, but I am trying to gather inputs specifically for the following.
1. Are counseling needs of MDR TB patients different during the intensive phase and continuation phase? If yes how are they different?
2. Any literature available on Psychological (depression, low self value, anxiety), social (stigma and discrimination, side effects faced by MDR TB patients
3. How much time should a counselor (health worker) spend (# of hours, # of home visits) with the patients in intensive phase and continuation phase during the home visits? (Although duration will depend on the individual need of the patients, it will be good to understand what is the current experiences on time spent in counseling of patients)
4. Are there any counseling module/s developed for MDR TB patients, care givers, and health care workers?

Warm regards,
Shiva Shrestha



Regina Bhebhe Replied at 9:42 AM, 3 May 2012

Dear Shiva Shrestha

Counselling but on the Tuberculosis community we call it give Awareness/Combating stigma and discrimination associated with tuberculosis. (counselling mean is giving advice and awarenesss have awareness of something) Stigma is harmful both in itself since it can lead to feelings of shame, guilt and isolation of people living with tuberculosis. Negative thoughts often lead individuals to do things or omit to do things that harm others or deny them services or entitlements. Some key sources of stigmatizing behaviour are healthcare providers through their treatment of people living with tuberculosis sometimes denying them health services and employers may terminate a worker’s employment on grounds of his/her actual TB positive status. Or families and communities may reject and ostracize those believed to be living with tuberculosis. As a health-care worker or provider you know that this is happening with TB patients before they are MDR-TB and they need counselling.

Stigma and discrimination are triggered by many forces: lack of understanding of the disease, myths about how tuberculosis is transmitted, lack of access to diagnosis and treatment, the immune response tuberculosis and fears relating to illness and death. Lack of knowledge and misconceptions are deep rooted among the affected and infected. Stigma results in part from misinformation and lack of information.

These are the words from a WHO book when they had seen that there was more required for Tuberculosis patients even before they are MDR-TB because MDR-TB comes after tuberculosis and by not following the correct procedures of DOT. DOT its self before it is applied the patient needs counselling including his/her treatment support and the family. We do have books from WHO these include advocacy, communication and social mobilization for TB control this is a book title, also CDC has information on how you give awareness or knowledge of the disease or how to combat the stigma. I have only mentioned one but it can guide you on how you will do your counselling although it is not specifical for MDR-TB. Counselling should be done when the disease start not when we have created it to be MDR-TB.

Thank you
Regina Bhebhe (PMLSc)
National TB Reference Laboratory

shiva shrestha Replied at 12:30 AM, 10 May 2012

Dear Regina,

Thank you for your valuable suggestions!

I agree that counseling among TB patients is important, if we really want to deal with the root cause of MDR TB in the community. So thank you for highlighting it.

At the same time, I think that counseling among MDR TB patients is more complex and challenging for various reasons. More particularly, due to the long duration of treatment, the serious side effects of medicines and the psychological effects etc.

I request other members to share their opinion and experiences.

Warm regards,


egh Eduardo Gotuzzo Replied at 1:08 AM, 10 May 2012

dear SHIVA
usally we promote the same council because the most important is promote
adherence to treatment
also is very important to training to field worker when vist home because
they need to rceived 2 times a day and usall y the health communty system
is close in the evenig and we use community field workers
other council is promote the prevention in the house with education to use
the air as´" öpen windows during several hours and clean the room of the
also to training to the family about early symoptonms to have a diagnosis
of new case in the house
usally the important is the consist and prgorsive council and permanent and
I wil lassume the social worker need to work with the foeld worker
finally some side effect s specially psiquiatric disorders are common in
the 1 to 4 months and not early as the skin and rash etc
eduardo Gotuzzo

Dr. Eduardo Gotuzzo
Instituto de Medicina Tropical
Alexander von Humboldt

Ramatoulaye Sall Replied at 5:11 AM, 14 May 2012

Dear Shiva,
Your question is very interesting. May be that I can share with you the experience of Senegal. We have adopted the ambulatory treatement but still now the CHW are not allowed to give the DOT; The patient must come everyday to the health center to take his drugs.

We began the counseling of the patient before starting the second line treatment, when the patients is supect of MDR \. We began explainning him the treatment and we make the focus on the causes of the resistance and the infection control for the house contact.He ndeeds to know how resistance developped and how he can protect others. We explain to him also how Mycobatetium tuberculosis growth and why the culture take so much time

We also explain to the patient that he will need the help of a member of his family because there will be some side effects and that at the beginning of the treatment he may feel more ill.These point is expalin to the patient before he start the treatment. And we have seen that for a lot of them it was an accaion to have the support of their family.

Once the resistance is confirmed, the Health worker and the social worker together make a second counseling to the patient. They give him a letter of consent and explain to him all the important points of the treatment (bacteriological and biological controls, the duration of the intensive phase which is corelled to the conversion, ....) During the intensive phase there is a daily questionnary which focus on the side effects . We have observed that during the 3 first month when the patient is not well informed about the side effects it can be a source of default.We do our best so the patient can autocontrol himself. it is also during this phase that we prepare the patient to his adherence to the second phase. He must undestand that his sputums are going to be negative but he will still need to be compliant because an ultraresistancy can accure. A plan of social integration must be discussed with the patinent before he starts his second phase.

For the continuation phase we put the focus on the adherence. The patient is feeling better, their is no more injections, and he often wants to return to his work. During this phase it is very important to reexplain to him that he is not cured.

It is very important to have a patient centred approch. A good relationship with the patient and his family is important for the success of the treatment.


Ramatoulaye Sall Replied at 5:13 AM, 14 May 2012

so as you can see the counseling is permanent....

Alexandru Buga Replied at 8:30 AM, 14 May 2012

Dear Ramatoulaye Sall,
How long in Senegal is ambulatory treatment? It is better than hospital based model - I mean the percentage of default rate, treatment outcomes? How TB patients come to health center to receive drugs, I mean they live near to health centers?
Thank you.

Ramatoulaye Sall Replied at 10:09 AM, 14 May 2012

Dear Alexandru Buga

The ambulatory treatment is during all the treatment. Patients who are not from the area where the MDR care is available have to move.But the NTP is providing some amount for location and nutrional kit. We just started in 2010 and by now we putted 41 patients under treatment (all ambulatory) ,6 are already cured ,4 death and we had no defaulter.
N.B: Still Now the MDR-center is not ready....

Annika Sweetland Replied at 6:24 PM, 15 May 2012

Dear Dr. Shrestha,

Below pls find some anecdotal responses to your questions based on our experience providing psychosocial support to MDR-TB patients in Peru, in addition to a number of resources you might find useful.

1. Are counseling needs of MDR TB patients different during the intensive phase and continuation phase? If yes how are they different?

In our experience, though the needs of patients vary considerably by individual, we observed in the initial phase of treatment that some of the more common issues faced by patients were:
- feelings of hopelessness associated with having already been told that there was no treatment left for them (before MDR-TB treatment became available)
- suicidal ideation related to a combination of the hopelessness and profound social rejection/isolation due to stigma/discrimination.
- Depression/hopelessness having experienced/witnessed multiple household cases of MDR-TB (and deaths) (due to unavoidable contagion before treatment became available) and low expectations to be cured.
- Low motivation to tolerate side-effects in the face of such hopelessness

During the latter stages of treatment, concerns of patients seemed to center more around:
- continued toleration of significant, disabling and sometimes irreversible side effects
- frustrations about the temporary inability to work/study/perform social responsibilities like caregiving due to limitations imposed by treatment, side-effects, and/or symptoms.
- concerns about "life after treatment" and whether they'll ever be able to return to a "normal" life
- (often irrational) guilt/shame about being sick all the things they might have done differently to avoid getting sick in the first place (e.g. having gone to fewer parties, working fewer hours, eating better, taking better care of themselves, etc)

2. Any literature available on Psychological (depression, low self value, anxiety), social (stigma and discrimination, side effects faced by MDR TB patients
Yes - see below

3. How much time should a counselor (health worker) spend (# of hours, # of home visits) with the patients in intensive phase and continuation phase during the home visits? (Although duration will depend on the individual need of the patients, it will be good to understand what is the current experiences on time spent in counseling of patients)

This is really difficult to say. In our experience, group support was especially useful to combat the emotional consequences of stigma/discrimination since patients had the unique experience of sharing their difficulties with others who understood what they were going through and had similar experiences. Individual counseling was variable depending on the needs of patients. Also, infectiousness is a consideration - until patients have at least 2 negative cultures then it's inadvisable to have CHWs spend extended time with patients unless some biohazard protections are in place - same goes for group participation

4. Are there any counseling module/s developed for MDR TB patients, care givers, and health care workers?
Yes - see below

The following are a few resources you might find useful:

1) A five year retrospective report of psychosocial support groups with patients with MDR-TB in Peru (attached):
Acha, J., Sweetland, A. , Guerra, D., Chalco, K., Castillo, H., Palacios, E. (2007). Psychosocial support groups for patients with MDR-TB: Five years of experience, Global Public Health, 2(4):404-417.

2) slides from a related presentation delivered at a scientific conference in Cape Town, South Africa (attached)
Palacios, E & Acha, J. Socio--Economic and Psycho--Emotional Support for MDR--TB management:identifying needs and monitoring support in Peru

3) An earlier report about the same intervention (attached):
Sweetland, A. Acha, J., & Guerra, D. (2002). Enhancing adherence: The role of group psychotherapy in the treatment of MDR-TB in urban Peru. In Cohen, A., Kleinman, A., & Saraceno, B. (Editors.) World Mental Health Casebook: Mental Health and Social Services in Low-Income Countries, pp. 51-79, New York: Kluwer Academic/Plenum Publishers.

4) A report of the frequency of psychiatric side effects associated with MDR-TB treatment and their management (attached):
Vega, P., Sweetland, A., Acha, J., Castillo, H., Guerra, D., Smith Fawzi, M.C. Shin, S. (2004) Psychiatric issues in the management of MDR-TB. International Journal of Tuberculosis and Lung Disease, 8(6): 749-759.

5) Finally, we wrote a manual for psychosocial support groups for patients with MDR-TB, but it's only available in Spanish ( Much of this guide was adapted and incorporated, however, into a similar guide for use with HIV patients through the WHO - there is a great deal of overlap for these two population groups.(
Another related guide that may be of interest:

6) Though not MDR-TB specific, ample experience suggests that community/lay health workers can be trained to deliver interpersonal therapy (IPT) for depression in settings like Uganda and there are several guides and training materials available that may be of use (see Bolton et al 2003 and Verdeli et al 2003, both attached)

I hope this is helpful!
Annika Sweetland

Attached resources:

shiva shrestha Replied at 2:45 AM, 16 May 2012

Dear Dr. Eduardo,

Thank you for your valuable inputs!

You comment on psychiatric disorder are common among MDR TB patients in the first 1-4 months and not early as the skin and rash etc is interesting. Can you please elaborate on this a little more as in, do you mean that psychiatric disorder are more seen during the intensive phase? Sorry if I misunderstood.

Dear Dr. Rama,

Thanks for sharing your experience from Senegal.

You have answered many of my doubts and particularly highlighted the need of counseling from the time the patient is suspect of MDR. You have also highlighted the need to give appropriate information to patients at the right time and not bombarding with too much of information at once.

May I ask where is the project implemented, is it rural, urban or semi urban setup?

You also mentioned about social integration before the patient starts his/her treatment on second phase. Any reason to do this in second phase only? What social integration activities do you carry out in you project?

Can you also share your email address if it's alright to write to you for further queries?

Warm regards,

Gini Williams Replied at 5:43 AM, 16 May 2012

Dear Shiva et al

There is no easy answer to your question as all patients have different needs based on their previous experience, their level of understanding about the disease, who they believe, who they trust and so on. It is essential for people with any form of TB (resistant or not) to be properly assessed with regard to their knowledge, beliefs and attitudes and to be counselled accordingly. As health care workers, fully sensitive TB feels quite straightforward to treat when compared to MDR-TB, and we can forget that for a patient a TB diagnosis can be devastating whether resistant or not.

Effective counselling and support is essential for all forms of TB in order to give the best possible chance of successful treatment. This is sometimes seen as a luxury when it should be seen as a routine part of care. It may feel like it takes too much time to assess each patient thoroughly and respond to their emotional and psychological needs from the beginning of treatment, but it saves much more time in the long run by reducing default, and preventing both treatment failure and drug resistance. The Union's "Best Practice for the Care of Patients with TB - A Guide for Low-income Countries" (2007), downloadable from the Unions website, gives practical guidance on all aspects of care from a patient's presentation with symptoms to the completion of treatment. The patient's physical, emotional and psychological needs are taken into account at every stage of their journey through treatment as they do change over time.The Guide is based on existing best practice in low and middle income countries and it has been very well-evaluated by nurses as well as doctors who care for people affected by TB as well as MDR-TB. We will be updating it this year to include more information on MDR-TB but the principles are the same.

Attached resource:

shiva shrestha Replied at 2:21 AM, 18 May 2012

Dear Ms. Annika,

Thank you so much for your inputs and all these resources!
I read some of them and found it very useful.

Thank you once again,

Warm regards,


Hanan Ahmed Replied at 11:55 PM, 19 Jul 2012

Dear Shiva Shrestha,

Thanks for the discussion. You raised one of the most difficult component of MDR-TB management in our set up,Ethiopia. Our patients have baseline psychosocial problems, nutritional deficiencies like Vit B12...,HIV and stigma from the society. These factors predispose them more for drug induced psychiatric abnormalities usually from cycloserine and quinolones. These drugs unlike Efavirez which has early onset side effects, they are dose dependent and hence occur later during the course of treatment. Most of our patients develop them after 6-7 months of treatment. But by then they don't usually have their TB symptoms so they blame the drugs, their families will also be less supportive.On top of that after they are admitted for their side effects, they will really disturb the newly started patients in the ward.

What is best is to have a good baseline psychiatric assessment to identify not only those who have clinical symptoms but also those with masked ones which are more likely to develop them in the future.This means we always need psychosocial support it doesn't matter whether intensive or continuation. The advice and interventions may differ based on the cause.

Just as a guide we spend one hour every 2 weeks on counseling and education.

The IMAI module with the 5As-Assess,Advise,Agree,Assist,Arrange also helped us a lot.

Best regards