Perspectives of Ontarians with Multiple Sclerosis on Accessing Healthcare Services for Managing their Condition

Abstract

Multiple sclerosis (MS) requires complex care throughout life. Current Canadian literature demonstrates that persons with MS are high users of healthcare services, yet still have multiple unmet health care needs and low satisfaction with healthcare services received. This study investigated access to healthcare from the perspective of Ontarians with MS, using interpretive description methodology. Participants were 48 Persons with MS living across seven communities in Ontario recruited primarily through the MS Society of Canada. Data collection involved five focus groups plus ten individual semi-structured telephone interviews. Participants described access to healthcare services as a process of cost-benefit analysis that involved weighing out the likelihood of getting useful assistance against the range of expected barriers. Expected barriers were based on past experience and included a lack of patient-centered care, limited MS-related knowledge of generalists, and lack of affordability of preferred source of care. Ongoing experiences with these barriers led participants to believe that seeking care was not worth it. The result was that participants tended to avoid seeking healthcare services until they felt threatened by their health state, which then led to use of emergency services. Many participants also described completely disengaging from traditional healthcare services in favour of alternative treatments. Ontarians with MS report negative experiences with traditional healthcare services that fail to meet their complex care needs. Findings suggest that a patient-centered approach could reduce healthcare avoidance which may, in turn, reduce secondary complications and avoidable hospitalizations. (MS) requires complex care throughout life. Current Canadian literature demonstrates that persons with MS are high users of healthcare services, yet still have multiple unmet health care needs and low satisfaction with healthcare services received. This study investigated access to healthcare from the perspective of Ontarians with MS, using interpretive description methodology. Participants were 48 Persons with MS living across seven communities in Ontario recruited primarily through the MS Society of Canada. Data collection involved five focus groups plus ten individual semi-structured telephone interviews. Participants described access to healthcare services as a process of cost-benefit analysis that involved weighing out the likelihood of getting useful assistance against the range of expected barriers. Expected barriers were based on past experience and included a lack of patient-centered care, limited MS-related knowledge of generalists, and lack of affordability of preferred source of care. Ongoing experiences with these barriers led participants to believe that seeking care was not worth it. The result was that participants tended to avoid seeking healthcare services until they felt threatened by their health state, which then led to use of emergency services. Many participants also described completely disengaging from traditional healthcare services in favour of alternative treatments. Ontarians with MS report negative experiences with traditional healthcare services that fail to meet their complex care needs. Findings suggest that a patient-centered approach could reduce healthcare avoidance which may, in turn, reduce secondary complications and avoidable hospitalizations.