Patients’ understanding of telemedicine terms required for informed consent when translated into Kiswahili

Rachael Odhiambo, Maurice Mars

In Africa, where access to specialist medical services is often limited, telemedicine, the use of information and communication technologies for the provision of healthcare at a distance, can contribute towards enhancing access to healthcare. Informed consent is considered the cornerstone of ethical practice, especially when technology and techniques are considered new and or unproven. It is advised that informed consent should be gained in the patient's mother tongue. However, many African languages have not kept pace with technology and lack the words and terms needed to describe computing and technical terms. Additionally, even when present, patients may not understand these words and terms. This affects the validity of informed consent given. Forty relevant computer terms and words used when explaining telemedicine during the consent process were selected and translated into Kiswahili. Patients at the outpatient department of the Kilifi County Hospital in Kenya participated. The study consisted of two phases. In the first, 50 people were asked whether they understood the translated words and terms and were able to explain their meaning. In the second (n = 42) they were asked to explain the meaning of the translated word, the original English word, and those words that could not be translated. Of the 40 terms, 14 could not be translated (35%). A total of 92 people attending the Kilifi County Hospital participated. Their average age was 31.2 ± 10.6 y, 70.7% were female and 55.4% were from rural areas. More than half of the respondents did not understand videoconference, store and forward, digital photograph, wireless, World Wide Web, antivirus or email in either language. No-one understood the words telemedicine, firewall, encryption, decryption and tele-diagnosis. Currently it is unlikely that valid informed consent can be obtained for a telemedicine encounter in Kiswahili. Innovative solutions are required to overcome the barrier of languages failing to keep pace with technology and their effect on consent.