Healthcare access experiences and concerns of Canadians with multiple sclerosis

Abstract

Canadians with multiple sclerosis (MS) are high users of healthcare services yet report multiple unmet needs. The reasons for this situation have not been explored, however international literature suggests that issues in gaining equitable access to appropriate healthcare may be the culprit. The overall purpose of this dissertation was to investigate access to healthcare, in the Canadian context, from the perspective of persons with multiple sclerosis (PwMS). Access was examined through the lens of the Candidacy Framework, which defines access to healthcare as a multidimensional process including an individual’s path to care seeking, their entry into healthcare, and their use of services. A multiphase mixed-method design was used to address the dissertation aims. First, a qualitative study using focus groups and individual interviews was conducted to understand the experiences of PwMS as they access healthcare services to manage their condition. Next, the qualitative data from study 1 were re-evaluated to explore the alignment between the experiences of access described by PwMS and the stages of the Candidacy Framework. Finally, a cross-sectional survey was conducted to determine the most pressing access concerns of Canadians with MS. The qualitative work identified a lack of patient-centered care, low availability of neurologists and healthcare providers with MS-related knowledge, as well as a lack of affordable allied and complementary care as major causes of reported unmet needs. In fact, many PwMS felt that care seeking was not worth it until a crisis arose, due to poor past experiences through which needs remained unmet. Together this evidence provided important theoretical insights to the field of access by demonstrating the importance of including help-seeking behaviour to examinations of access to care. Survey findings indicated that PwMS prioritized low availability to healthcare providers with MS-related knowledge and affordability to services aiming to promote and maintain wellness as their top access concerns. The dissertation findings provide solid foundational evidence regarding the healthcare access experiences of Canadians with MS, which can be used to drive research and advocacy planning that better meet the access needs of this population.