Psychosocial support for MDR-TB patients
Started by Christian Auer on 08 May 2009
Last edited by Sophie Beauvais on 23 Nov 2009
Hello Ms. Cat Oettinger and DR TB Community Members,
I am posting the message below on behalf of Dr. Ruben Encarnacion, clinical psychologist, which he submitted in response to a discussion Cat Oettinger posted in the community last month:
http://www.ghdonline.org/drtb/discussion/psychosocial-support-for-patients-patients-familie/
From Dr. Encarnacion:
Greetings from Manila. I am cutting & pasting material I wrote about the Group Discussions (GDs) that we have been doing at Tropical Disease Foundation (TDF) Philippines:
In an effort to promote treatment adherence and decrease the default rate, TDF instituted psychosocial interventions in late-2005 by hiring a Consultant Clinical Psychologist who introduced and facilitated group discussions (GDs) among MDR-TB patients. Initial sessions focus on the patients’ thoughts and feelings about their MDR-TB diagnosis; perceptions of stigma by family, friends, and co-workers; and factors that affect their adherence to MDR-TB treatment. Additional sessions discuss self-awareness, communication, and problem-solving. The group sessions are intended to provide a basis for patient-to-patient support and a sense of belonging to a community of patients who can understand the issues they face related to their disease and its impact on their role at home and in the workplace.
The clinical psychologist trained eight social workers from three outpatient treatment centers, MMC, LCP, and Kasaka (Kabalikat sa Kalusugan) in Quezon City, from February to June 2008. In July 2008, group discussions were formally implemented as part of the routine programmatic management of drug-resistant TB (PMDT) at the three centers. A standardized three-month program of group discussions was prepared in January 2009. The clinical psychologist trained 17 more health care workers, so that by March 2009, the standard 3-month program was implemented not only in these 3 centers but in two other treatment centers that opened in 2008 (Tala and Tayuman).All MDR-TB patients are eligible and encouraged to attend group discussions throughout the course of their MDR-TB treatment. Each session averages 45 minutes in duration, and sessions are offered once weekly. Patients can attend all four sessions offered each month. Attendance is recorded for each GD session.
I am currently in the data gathering phase of a research studying "The Effectiveness of
group discussions improving treatment adherence among MDR-TB patients." Hopefully, results can show that the GDs do make a difference in treatment management.
Best regards,
Ruben
Attached resource: Keywords: Advocacy
Rivet Amico
This sounds like an exciting and innovative approach-- will the evaluation be pre/post or is there be a control arm involved? Looking forward to reading your outcomes! As a psychologist, I can't help but believe that providing social support and an opportunity for individuals to learn from one another--- particularly in conditions that are isolating and met with stigma--- will have a positive result. I wonder more about where the effect will be-- psychological health, adherence, treatment outcomes, or a combination of these. Also--is the program guided by a particular model of health behavior or of counseling for behavior change?
Looking forward to learning more from your work.
5:35 AM, 9 May 2009 | Permalink
Nida Khan
Dr. Encarnacion,
As a clinical psychologist in training, (I have completed my Masters in Clin. Psych, and am enrolled in a DClinPsych. Program which will start in the fall), I really enjoyed reading your article.
I am currently working with the Indus Hospital Research Center on their DOTS-Plus program, in the capacity of providing psych. support to the patients. I have tried to adopt a behavior change focus in the interventions, including targeting anxiety and anger issues, mostly on a one-on-one level. I have been planning and working on starting up a formal support group set-up, to make the sessions more interactive, and as you've mentioned, to foster that feeling of belonging to a community of similarly afflicted people. The methodology of actually implementing support groups is what I seem to be struggling with however, as it's difficult to gather the patients at the same time to organize the group, as they come to the first come first serve clinic at their own time. Also, there are 2 physicians seeing patients, and a dietitian who records weight and height for every patient. As a result, there is a constant flow of patients from the waiting room to the consultant room.
Hence, I was wondering if I could get some more info about the methodology you have had such success with - whether the patients are seen on the same day as their follow-up, or separately, or even if this was done with in-patients or out-patients. And how many patients on average made up a GD, and were their family members involved in the discussion too?
The structure I'm trying to set-up is still very new, and thus, and input and guidelines you could provide would be of immense help. Thank you again for a very generous and valuable contribution of information, and I look forward to the progress of your research on effectiveness of GDs, I'm sure the results will be promising.
Nida Khan,
Counselor for DOTS-Plus Program,
Indus Hospital,
Karachi, Pakistan.
1:39 AM, 12 May 2009 | Permalink
Ruben Encarnacion
Hi Nida,
Thank you for your email.
Since you appear to be working alone for now, my suggestion is for you to just set any good time just to get the support group started. When we started with an in-house patient facility in 2005, it was 9am on a Monday, since some of the patients would have visitors over the weekend and they might have some material to share and process with the group. That worked fine for a while. After 3 months, though, we moved it to 9am Wednesdays. Some patients had a home day off on Sunday and were not back for the Monday morning sessions. Because you're targeting outpatients as well in your start-up phase, you might want to add an afternoon session as well, welcoming all who happen to be there at the time of your group discussions. I suggest you have one or 2
regular sessions a week (or more, if you have the time). Announce it beforehand and let it be available to all patients who care to attend. Your individual counseling sessions will continue, with the added benefit that you will be able to identify from the group sessions which individuals need individual processing.
The idea is to get the Psychosocial Program started, generating interest and emotional healing among the patients, and support from and results for the rest of your clinic staff and especially your superiors. Soon enough, your Psychosocial Program will grow and you will
have a social worker or two to train, to help you in facilitating your group discussions.
Here in Manila, we have grow from 3 treatment centers in 2005 to 5 just last year. From 2005 to 2008, I concentrated on Quezon City every other week and would visit the 2 other centers once a month each, to conduct a group discussion then.
As a Consultant Clinical Psychologist, my time commitment was 4 sessions or 10 hours a month. As the program was growing, I trained 6 social workers (2 from each center) so that they could facilitate the discussions that I designed and previously ran. A full-time Senior Psychologist was hired by May 2008 (Rod Lopiga). Earlier this year, we trained the 16 clinic staff of Makati Medical Center, plus two more social workers in the 2 more treatment centers that opened last year, bringing our total of treatment centers in the Philippines to 5, and trained social workers and clinic staff up to 24. Rod tells me that TDF-Philippines is geared up to open 7 more treatment centers in southern Phils. between 2009 and 2010, to accommodate the growing number of MDR-TB patients and to keep pace with the WHO Global Fund's targets for service delivery.
I did not have any training manuals then. I did the
discussions inductively, from where the patients were. That meant intuiting and asking what their psychoemotional needs were. The clinic staff were also helpful in identifying the patients' needs. After every session, I would type & email process notes. After 2 years, I was able to compile a manual of 40 GDs. And then for research purposes and for portability (so that the trained social workers and clinic staff would have greater ease and guidance in running these GDs on their own), I prepared a standard 3-month program consisting of 10 GDs. This would be run in any treatment center for 3 months, and then run again. By then, many of the current patients would have gone into continuation phase and some new patients would be enrolled.
The standard 3-month program is awaiting editing and will be ready for publication soon. I have no problems with sharing it with colleagues who can benefit from it,
and thus, their patients. I am eager to do so, in fact. However, my superiors have warned me and informed me of precedents wherein TDF Phils proprietary material was used without permission and even copyrigthed by someone else. I hope you understand.
Meanwhile, it would be a good exercise for you to come up with your own GD designs, suited to Pakistani patients. The following is the resource manual that was helpful to me:
The
Encyclopedia of Group Activities
(ed. Pfeiffer, San Diego, CA:
University Associates, 1989).
Have fun! It's so important to enjoy conducting these group discussions with our patients. Now that we in TDF Phils have reached what can be called a "mass production" phase of facilitating these GDs (hopefully not), our groups have increased in size from 12 to 24 (except at Makati Medical Center where the entire clinic staff is trained in facilitating the 3-month program and each has a group of 5-8 patients). With bigger groups, there is less intimacy and sensitivity, less "therapeutic moments." But the outpatients keep coming. It seems that some of them have timed their visits with our current 10AM Wednesdays schedule. That is enough encouragement, that they are actually benefitting from what we are doing!
Dr. Ruben Encarnacion
9:33 AM, 13 May 2009 | Permalink
Nida Khan
Dr. Encarnacion,
Thank you so much, not only for the guidance and information, but for the promptness with which you replied as well. You've given me a lot to work with.
I completely understand issues with disseminating material, and of course, I'd only be interested in reading it for guidance after it gets published.
Nida Khan,
Counselor, Karachi DOTS Plus Program,
Indus Hospital,
Karachi.
1:55 AM, 15 May 2009 | Permalink
Ruben Encarnacion
Hi Rivet,
It is an experimental control cluster design. The exptal group is those patients who attended group discussions from May 2009 to July 2010. The control group is those who did not have GDs from July 2005 to Oct 2006. The dependent variable is treatment adherence.
The framework is cognitive behavioral.
Thanks for your interest.
Dr Ruben
8:53 AM, 16 May 2009 | Permalink
Philipp Du Cros
Dear Colleagues,
We are currently looking at the possibility of starting facilitated group discussions in one of our MDR TB program. I am wondering if you would be able to share some information onthe following:
1. How do you deal with infection control in group sessions (as patients will have different resistance patterns and potentially there may be infectious and non (less) infectious patients in hospital)?
2. Do you have group discussions also with patient supporters (who are often expected to carry a large burden when caring for ill patients)?
Thanks for any information
Best regards
Philipp du Cros
Medecins Sans Frontieres
3:21 AM, 25 Jun 2009 | Permalink
Rivet Amico
Dr. Ruben,
So you will have quite a bit of data to share in the end! I look forward to learning more.
Sincerely,
Rivet
3:54 AM, 25 Jun 2009 | Permalink
Rivet Amico
Group strategies could be really helpful in giving patients support and certainly support for care givers would be well positioned to provide a focus on and resource to a frequently overlooked group (who often are the front line implementers of infection control behaviors for TB patients and visitors).
Questions regarding the patient groups-- Would all group members in the patient groups have TB, MDR TB, or some combination? What, specifically, would the behavioral goals be for low-infectivity vs high-infectivity patients (more, how would they differ)?
Sincerely,
Rivet Amico
__________________________________________________
K. Rivet Amico, Ph.D.
Assistant Research Professor
Center for Health, Intervention & Prevention
University of Connecticut
3:56 AM, 25 Jun 2009 | Permalink
cheryl mcdermid
Dear Philipp
In Khayelitsha we have approximately 70 DR TB patients attending support groups, which meet weekly and are facilitated by MSF's DR TB adherence counsellors and peer educators. MSF employs 2 peer educators for 3 months chosen from the support groups. When their 3 months are up, we choose 2 new peer educators.
The support groups are now wanting activities to do, one group is starting a garden, another group will be learning computer skills (previous DR TB patient who was one of our peer educators has a computer training centre) and others are doing beading and other craft works.
Most of the time the weather here allows for the meetings to take place outside. However in the winter months when it is raining, the meetings are held inside in well ventilated rooms and all patients attending wear N95 respirators when indoors.
We do not have group discussions with care givers, but this is something to consider.
In Khayelitsha, when patients are diagnosed with DR TB, they receive 2 counselling sessions from the DR TB adherence counsellors, one at the clinic and the second is a home visit. During the home visit, family members are also educated about DR TB and IC, all contacts are identified and symptom screened. Symptomatic contacts are referred to their clinics for further assessment and sputum for culture and DST. All under 5's are screened with a mantoux and chest x-ray and seen in our monthly pediatric outreach clinic. If TB is ruled out, then the under 5's are given prophylaxis.
Here is a link to our most recent report on "the decentralized patient centred care for DR TB
http://www.msf.org.za/Docs/Khayelitsha/MSF_DR_TB_Report_March_2009.pdf
Hope this helps.
Cheryl
Dr. Cheryl McDermid
MSF Khayelitsha
1:37 PM, 28 Jun 2009 | Permalink
Julio Acha
In relation to the question posted regarding infection control measurements in group sessions, Socios En Salud (PIH Peru), began conducting psychosocial support groups with MDR TB patients in 1999 in the community. Our inclusion criteria is to have at least two negative sputum cultures. We exclude patients who still have positive sputum cultures, psychosis and severe personality disorders (anti-social personality disorder). In addition to regular group sessions, we offer recreational acitivities like picnic trips, birthday celebrations and celebrations for patients who are finishing treatment.
For those patients who have positive sputum and are not able to attend group sessions, we provide individual psychiatric treatment and counselor support.
3:15 PM, 3 Jul 2009 | Permalink
Julio Acha
Dear Nida -
In regards to your question on methodology, we at SES use an eclectic model for our psychological support groups. We encourage patients to accept their illness and support them through the different stages such as denial, guilt, anger, depression to acceptance and hope.
We find that the most important part is to move on from guilt that is what we call "TB of the soul".
In addition we address managing social stigma and focus on incorporating family involvemnt as source of support.
Lets not forget that the first group therapist in the world was Dr. Joseph Pratt in Boston with TB patients.
3:29 PM, 3 Jul 2009 | Permalink