Expectations and challenges of cancer patients and their caregivers

Abstract

Cancer is a major public health problem and a common cause of morbidity and mortality, especially in low and middle-income countries where patients often present with advanced disease (Elizabeth Ward, PhD,2011). Both the patients as well as their caregivers often face challenges that include lack of access to proper treatment, stigma, inadequate or total lack of access to palliative care services, and hence not being able to be relieved of pain. The aim of the study was to investigate the expectations and challenges of cancer patients and those of their caregivers at the Uganda Cancer Institute. The study used a cross-sectional mixed design that combined both the quantitative and qualitative methods (University of Nebraska,2015). The study used quantitative and qualitative methods of data collection. The study used questionnaires for patients and an interview guide for the cancer survivors for the focus group discussions while interviewing caregivers. A total of 60 cancer patients responded to the questionnaires. According to responses the median age of participants was 46 (range 18–75) years. There were more women (73.6%) than men (26.4%). The majority of the patients (93.1%) had attained formal education. The most effective and patient-relevant source of information about the disease and treatment options was access to services such as pharmacy and laboratory (100%). When asked to suggest areas for improvement, most of them suggested that patients should be involved in decision-making and that the medical team not take too long to make decisions for a patient to start on treatment. Cancer patients had several expectations and faced challenges that ranged from physical expression to emotional and practical needs. They expected to receive free cancer medicines, limited waiting hours, good pain management, and for both caregivers and patients to be involved in health decision-making. There are several expectations as well as challenges that are an important aspect to the lives of cancer patients and should be part of holistic care to ensure an improved quality of life for cancer patients and their families. Cancer patients and their caregivers need to be helped at all levels so as to accept the disease they are suffering from, with meaningful interventions such as communication, pain control and pain management, and providing room for respect, dignity and privacy. Health professionals and caregivers should also be involved in the health issues of their patients so as to increase their knowledge, skills, and information on how patients are attended too.