Author: Iffat Elbarazi
Elbarazi, Iffat, 2015 Exploring knowledge and information needs among cancer patients in the United Arab Emirates during their cancer treatment journey, Flinders University, School of Medicine
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Summary
Cancer education is one of the foundations of oncology patient-centred care. Research has shown that to enable a successful management plan, patients need education about their condition, their treatment plan and about the management of long term and short term possible complications, as well as the prognosis for their disease. During the cancer journey, patients and their families need information related to their disease; and that might be specific to each stage of the cancer continuum.
However, cancer patients’ knowledge and education needs might differ from one patient to another. Furthermore, their educational needs and the level of knowledge required might change and vary depending on their physical condition, psycho-social status, personality type, available psycho-social support and their cultural and religious background. Providing patients with education and support has been shown to help patients and their families deal and cope better with the stress and fear associated with their diagnosis and treatment. Patients who receive information and education during their cancer journey are usually more satisfied and have better survival and health outcomes.
Researchers around the world have identified different information needs for cancer patients with different types and stages of cancer, during the cancer journey. Cancer patients in the United Arab Emirates (UAE) do not differ from other cancer patients around the world except for some cultural and social influences that are particular to this country and to the surrounding region in general. Little is known about the experience of patients in the UAE health system. There are no studies about cancer patients' information needs within health services or in the community. This is the first qualitative study that has explored cancer patients’ information needs in the UAE and in the Arab world throughout the stages of the cancer journey: diagnosis, treatment and recovery/follow up.
This study aimed to identify cancer patients’ knowledge and information needs as they move throughout the cancer journey. The study has investigated ways to improve cancer literacy for cancer patients in the UAE by understanding their knowledge transition and their information needs.
This study employed a qualitative approach to explore patients’ views, ideas and perceptions about their information needs and the potential for improving patients’ education experiences. A longitudinal research method was used in order to record the knowledge and information transition of these patients during the cancer journey that includes the diagnosis, treatment and follow up or recovery stages. Twenty eight cancer patients attending Tawam hospital, in Al-Ain city in Abu Dhabi the capital city of UAE, were interviewed for three times over a period of eight months during their cancer journey. Every patient was interviewed once at each stage of the cancer journey (diagnosis, treatment and recovery follow up stage).
Patients reported high information needs at the baseline (diagnosis stage). Their information needs fluctuated during the treatment stage, increasing and remaining high during the follow up/ recovery stage. Patients reported having unorganised and patchy education that was challenged by lack of resources and mistrusted and limited sources of information.
The findings of this study suggest that cancer patients in the UAE are in need of continuous education and that patients have high information needs over the course of their cancer journey. A well planned interdisciplinary education program that uses qualified health literate professionals and/or survivors may help improve cancer patients’ literacy in the UAE. These measures may improve patients’ ability to cope with their disease by providing them with the evidence-based information they need at the appropriate time.
Keywords: Cancer education, patient education, information needs, knowledge of cancer patients, cancer treatment journey
Subject: Public Health thesis
Thesis type: Professional Doctorate
Completed: 2015
School: School of Medicine
Supervisor: Prof.John Coveney