Browse this page to learn about MSF projects that have taken action to be inclusive of persons with disabilities. So far, we have one example from Swaziland and are very eager to hear more from you.
When the MSF-project in Swaziland was faced with hearing loss in 40% of its drug resistant tuberculosis (DRTB) patient group as a consequence of the treatment, the project responded by creating an environment that is inclusive to patients with hearing impairments. The long-term benefits of their actions have had a positive impact on the general accessibility to health care for the deaf community in Swaziland.
Although the course of action taken by this project has a more vertical scope than the mainstreaming efforts that we, through this TIC-project, are encouraging you to implement – there are several aspects making their experience highly relevant, which are highlighted in the text below. Continue reading to learn about how this project was developed and what lessons you can bring to your project.
Many patients at the Matsapha Clinic, a comprehensive MSF clinic offering various medical services in Swaziland, suffered from hearing loss due to DRTB-treatment. Patients that had previously been fully able to hear and communicate freely, became partially deaf or completely lost their hearing.
Despite being fully informed about the possible side effects, the patients were not prepared for the sudden hearing loss. Not only did the affected patients isolate themselves socially from their families and communities as a result, but they also found going to a medical clinic problematic, as they could no longer communicate with the nurses and doctors.
Actions taken by the clinic
Recognizing the problems facing the patients, the MSF clinic initiated a training in Swazi sign language, in order to reintegrate the patients into their community and improve communication with both their family and health care workers. The training was targeted at the patients, their families and MSF health care workers in the clinic. To realize the training, MSF reached out to local experts in sign language, and hired two teachers from Swaziland’s Sign Language School with vast experience in supporting deaf people and teaching sign language in the region where the MSF clinic was providing medical services.
With this training, the patients were able to interact and have a conversation with others again. Clinic staff were able to communicate with the patients with ease, and to intervene with confidence based on the patients concerns. As the patients were trained with their relatives, they were also able to interact at home, with the ones they spend most of their time with after completing DRTB treatment. With the acquired skill, they went from having secluded themselves from social life due to their inability to communicate, to being more expressive and open again.
With the switch to new drugs without damaging consequences on hearing, the number of new patients that could benefit from the training quickly decreased.
Core impact on Inclusion
Beyond the positive influence on the quality of life and health care of the initially targeted patients, the impact of the actions taken by MSF Swaziland remains important in terms of accessibility to health care for patients with a hearing impairment in Swaziland.
Unexpectedly, awareness about the staff’s Swazi sign language skills was raised across the deaf community, which led to an increase in the number of deaf patients seeking care at the clinic for services unrelated to DRTB. These patients informed MSF staff that they had had negative experiences of impatient staff members at public health services.
Because of the training, the Matsapha clinic – a comprehensive clinic offering various medical services – had become accessible to deaf patients.
Key lessons learned
• MSF projects are normally overwhelmed by needs and other priorities. The needs of people with disabilities are often not taken into account. MSF projects could zoom in more on people with disabilities as they could be excluded from access to health or social life because of their handicap.
• Learning a new skill takes time and patience, therefore participating staff have to be motivated to take the training. Learning sign language is challenging and requires consistent attendance and practice, not everybody is sufficiently motivated to keep up the effort. (Initially there was a high attendance from the staff, patients and relatives, but with time, the attendance rate slowly decreased.)
• Including health care workers from all departments in the sign language training ensured accessibility to health services for all deaf patients.
• The training would not have been a success without the involvement of the patient’s relatives. The aim of the training was both to enable communication with clinic staff for medical care, but also to reintegrate the patients into their families so that they did not isolate themselves.
This text is based on a report written by: Fundzile Msibi, Psycho Social Coordinator and Kees Keus, Medical Coordinator at the Matsapha Clinic, MSF Swaziland
Drug-resistant forms of tuberculosis (DRTB) are hard to cure, involving ineffective, long, painful, toxic, complex and expensive treatment regimens. Current recommended treatments include drugs (Kanamycin, Amikacin and Capreomycin) given by injection. They can induce irreversible hearing loss in up to 40 % of the patients, in addition to nausea, joint pains, gastro-intestinal problems and psychosis.
MSF is involved in research on two new drugs (Bedaquiline, Delamanid) that are less toxic, and do not give the patients hearing loss. MSF Swaziland is currently applying them - but they are still not implemented as standard treatment for DRTB. MSF is pushing for broader implementation of these drugs.