Palliative care for the deaf community in Uganda

Categories: Care.

Perhaps every Ugandan adult knows, has interacted with or is related to a deaf person. Therefore, there is no doubt that the deaf are part of Ugandan society. Even so, there are no reliable statistics to estimate the total number of deaf persons in the country. 

The World Federation of the Deaf (WFD) global survey report indicated that in 2008, there were 840,000 deaf persons in Uganda. However, Mr. Ambrose Murangira, the Executive Director of the Uganda National Association for the Deaf (UNAD), estimates that Uganda has 2,000,000 deaf people.

The Palliative Care Association of Uganda‘s (PCAU) vision is: ‘Palliative care for all in need in Uganda’. It is within this mandate that PCAU reached out to the deaf community. Working with the Uganda National Association of the Deaf (UNAD), PCAU organised and held the first ever non health professionals palliative care training for the deaf. The five day training was attended by persons who are graduates working with UNAD. This training was not only an eye opener to the great need for palliative care among the deaf but also a trigger for more innovation and ‘thinking outside the box’ for palliative care practitioners. 

The deaf have intellectual abilities and plenty of potential. However, during the training, they shared how the social structure and the various cultures in Uganda discriminate, exhibit prejudice and isolate them on a daily basis. 

For example, in the Ugandan languages Luganda, Gisu and Lusoga, a deaf person is called “Kasiru,” which is directly translated as: stupid one. In the Iteso language, they are called “Ebang,” meaning: mad person; while in Kinyarwanda, they are called “Ikiragi,” which means thing of no value. All these insulting, disrespectful and diminutive terms, denote idiocy. According to the deaf, such innuendos stretch as far as health care facilities where some medical care workers express shock whenever the deaf presented with antenatal care and other health care needs. 

The deaf use sign language to communicate, but the majority of the health care staff in Uganda are not familiar with sign language. During the training, a story was told of how a deaf person suffering so much pain was referred to Butabika National Referral Hospital for mental rehabilitation just because the medical workers could not understand him. 

“Most doctors do not know how to communicate with us…some of them go ahead to prescribe treatment even when we feel that they have not understood our sicknesses,” one the participants noted. A story was also shared of how distant relatives grabbed property of a deaf landowner who was bedridden because his wife was also deaf.

From the training, PCAU was inspired.  Working with UNAD, a sign language pain assessment and management guide for health workers is currently being developed. The sign language pain assessment guide will be incorporated as a module in a palliative care training manual for health workers. We hope that such an intervention, when well implemented, will ensure the rights and dignity of the deaf with life limiting illnesses.

The 1995 Constitution of Uganda, Article 21 prohibits discrimination against people with disabilities. Uganda is one of the few countries in the world that recognise sign language in their Constitutions. We, at PCAU, believe that we have a duty to respond to the abuse of the fundamental human rights of people with disabilities, such as the deaf. 

The theme of this years’ World Hospice and Palliative Care Day is: Hidden Lives, Hidden Patients. A report containing case studies of other marginalised groups can be found on the Worldwide Hospice Palliative Care Alliance website and will be officially launched on 10 October 2015 as part of the World Hospice and Palliative Care Day celebrations. To find out more or to register an event for the Day, please visit the World Hospice and Palliative Care Day webpage.

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