Minding the Gap: Addressing the Lack of Awareness and Supportive Services for Cancer Patients and Caregivers in Limited-Resource Settings

Abstract

Background: In limited resource settings, physicians, particularly oncologists, are overburdened and there is an enormous health literacy gap between patients, caregivers and their doctors. Additionally, patients and caregivers are often required to travel great distances to unfamiliar cities to access cancer care. As a result, these patients and caregivers who require instruction and education about their illness are often overlooked and left uninformed, frightened and confused about their treatment and future. Aim: To fill gaps in education, navigation and awareness for cancer patients and caregivers during treatment. Provide practical information specific to their disease and treatment, encourage patient compliance with treatment and to equip them with the knowledge and resources that could have a positive impact on the patient's outcome as well as ease burden on the overtaxed hospital staff. Methods: Working in partnership with local and international cancer control experts, health ministries, clinicians, advocates and caregivers to build and introduce a program consisting of 2 components; patient/caregiver information/navigation support, at 5 sites in Colombia and Vietnam in 2018. The information component will comprise of a series of short videos/info-graphics providing culturally and resource appropriate information about cancer, its treatment, risk factors, treatment options, side effects and precautions including advice on hygiene, nutrition/diet. The navigation component engages hospital staff to map and provide local information and resources on affordable lodging, food and transportation services. Both components will be easily adaptable for each location, and accessible to varying levels of literacy via TV/video monitors/kiosks located in key areas of the hospital and via printed materials. If available, we will network to vetted local social media and Web based resources. Results: We will document the project through conference calls and site visits. We will convene stakeholders and beneficiaries to provide feedback on the implementation and effectiveness of the project. In the absence of a specific advocacy body to apply to for certification, we will use our advisory board, comprised of clinical experts in the field to provide feedback, guidance and critique in the development/evaluation of the materials. The feedback, along with analyses of the project outcomes, will be included in a final report, presented at appropriate conferences and published in relevant professional publications. Conclusion: Expected results: Increased patients' and caregivers' knowledge of cancer and cancer treatment Improved patient's and caregiver's levels of perceived support Reduced stress for patients and caregivers Increase compliance to treatment Reduced patient support burden for hospital staff