Added on 28 Mar 2011
Last updated on 14 Jun 2011
Authors: By Neir Eshel; Reviewed by Sophie Beauvais and Annika Sweetland
Caring for patients with multidrug-resistant tuberculosis (MDR-TB) is a multifaceted enterprise, requiring effective planning for screening and diagnosis, complex drug management, individually supervised treatment, and extensive monitoring and evaluation. As organizations in resource-limited settings have scaled up their MDR-TB services, one challenge has been to provide adequate psychosocial support to patients and their families. Psychosocial support is a crucial component of treatment for MDR-TB in order to ensure completion of complicated treatment regimens and enable psychosocial rehabilitation after treatment (Acha J. et al).
- One of the main advantages to using a group modality (i.e. group sessions) is the peer support and mutual encouragement among patients to endure and complete treatment. Groups also help to address social isolation that patients often experience as a result of social stigma or fear of infecting others. For many patients, the group may be their only social outlet and place where they can truly be themselves and feel understood. Patients commonly blame themselves for their illness and harbor feelings of guilt; the group sessions help patients to accept their illness and complete treatment. Whenever possible, participation of cured patients is also advantageous as they serve as models of life beyond treatment.
Example of format: 45 minutes, weekly, led by a clinical psychologist or other trained health care worker such as lay providers (for example in Uganda see Bolton et al 2003)., including anywhere from 5 to 24 patients and caregivers. The concern with lay providers conducting such therapy with MDR-TB patients would be management of more complicated psychiatric symptoms that can be induced by treatment (Vega et al 2004), along with the spread of misinformation about TB transmission if not properly trained.
Discussion topics: Interpersonal relationships (this is a major issue for patients due to contagion and the inability to fulfill social roles), trauma and grief (it is not uncommon for patients to have lost loved ones to MDR-TB before treatment became available, which contributes to feelings of hopelessness), diagnosis, stigma, factors affecting treatment adherence (jobs, etc.), problem-solving, and transmission control. Other activities: computer lessons, crafts, picnics, and birthday parties. Events that enhance social capital and connections with others have been shown to increase adherence.
Infection control: if weather permits, have the meetings outside. Otherwise, use well-ventilated rooms. Some members say that patients in these groups should wear N95 respirators, others, on the contrary, note that they have never used masks in these groups because they contribute to the feelings of alienation that patients already feel in the community and instead only include patients who are non-contagious (two negative cultures). Please visit the TB Infection Control community for more information on respirators/masks and strategies to prevent transmission. Possible exclusion criteria: Patients with positive sputum cultures, psychosis, or severe personality disorders. Provide these patients with individual psychiatric treatment and counselor support if possible.
Set-up: To generate interest, begin with 1 or 2 regular weekly sessions for inpatients. Advertise the time widely. A good starting size is 12 patients. Include at least 1 session in the afternoon so that outpatients who happen to be in the clinic can participate. Assess interest among outpatients, and build up to outpatient-centered groups. Many patients will schedule their clinic visits to attend sessions.
- Post-diagnosis counseling: One home-visit as soon as possible after the diagnosis; another home visit later in the treatment process. Counselor and peer educator provide concurrent support. If both are former DR-TB patients, they can speak with firsthand experience. For example, a member shared experience from the patient-centered care of Médecins Sans Frontières project in Khayelitsha, South Africa.
- With MDR-TB patients hospitalized because of poor adherence, substance abuse disorder, or personality disorders, individual therapy in the therapeutic milieu such as TB wards can reduce physical violence, isolation, frustration, and foster behavioral changes needed to complete therapy. It is often administered by physicians, mental health specialists when available, nurses, and trained social workers or lay providers working as a team. Frequent staff meetings should be organized to debrief.
- Treatment “accompaniment” of patients by treatment supporters has also been proven to facilitate the prevention and management of side effects and, when accompaniers are trained, help with psychosocial support.
- Paul Bolton, Theresa Betancourt, Richard Neugebauer, Liesbeth Speelman. Treatment for Depression Symptoms in Ugandan Adolescent Survivors of War and Displacement. JAMA. 2007;298(18):2138. doi:10.1001/jama.298.18.2138-b (Full text)
- Vega P.; Sweetland A.; Acha J.; Castillo H.; Guerra D.; Smith Fawzi M.C.; Shin S. Psychiatric issues in the management of patients with multidrug-resistant tuberculosis. The International Journal of Tuberculosis and Lung Disease, Volume 8, Number 6, June 2004 , pp. 749-759(11) (Full text)
- Chemtob D, Levy A. Treatment: Therapeutic Milieu Rationale and Staff Evaluation of Using a "Therapeutic Milieu" for Substance Users Within a Tuberculosis Ward. Subst Use Misuse. 2009;44(5):672-83. (Full text)
- Acha J, Sweetland A, Guerra D, Chalco K, Castillo H, Palacios E. Psychosocial support groups for patients with multidrug-resistant tuberculosis: five years of experience. Glob Public Health. 2007;2(4):404-17. (Abstract)
- Chalco K, Wu DY, Mestanza L, Muñoz M, Llaro K, Guerra D, Palacios E, Furin J, Shin S, Sapag R. Nurses as providers of emotional support to patients with MDR-TB. Int Nurs Rev. 2006 Dec;53(4):253-60. (Abstract)
- Mitnick. et al. Comprehensive Treatment of Extensively Drug-Resistant Tuberculosis. N Engl J Med 2008; 359:563-574. (Full text)
- Van Winghem et al. Implementation of a comprehensive program including psychosocial and treatment literacy activities to improve adherence to HIV care and treatment for a pediatric population in Kenya. BMC Pediatrics 2008, 8:52 doi:10.1186/1471-2431-8-52 (Full text)
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