Information needs of Arab cancer survivors and caregivers: A mixed methods study

Abstract

BackgroundArab cancer survivors and their caregivers often have high levels of unmet information needs. However, whether these information needs are the same for cancer survivors living in Arab speaking countries compared to Arab migrants is not clear. ObjectiveTo identify the information needs and information sources among Arab cancer survivors and their caregivers. MethodsArab cancer survivors (n=143) in Jordan and Australia were surveyed to explore their information needs and information sources. Interviews with cancer survivors and their caregivers, and focus groups with health care providers were conducted in both countries. FindingsWhile lack of information about cancer, its treatment and side effects were common to both groups, Arab Australian cancer survivors expressed greater need for information about managing their illness (P=.027), receiving explanations about tests (P=.016) and the benefits and side-effects of treatments before making choices (P=.041) than Jordanian cancer survivors. Qualitative findings revealed preferences for spoken rather than written information, and the provision of diagrams and drawings. Although information provided by doctors was a trusted source, almost half the participants indicated they used the Internet for information. Despite the use of interpreters, Australian health care providers expressed concern at whether the information they provided had been delivered and understood. ConclusionArab cancer survivors and their caregivers have unmet cancer information needs resulting in them seeking information from potentially unreliable sources such as the Internet. Arab migrants may need additional assistance to ensure they receive information relevant to their disease and are linked with the most trusted source of information.