Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Abstract

Background: People with multiple sclerosis (MS) require complex care throughout life. Canadians with MS are high users of health-care services, yet still report unmet health-care needs and low satisfaction with services received. Objective: This study aimed to investigate the health-care access experiences of Ontarians with MS as they manage their condition. Design and Participants: Interpretive description guided data collection and analysis. Forty-eight people living across seven communities participated. Thirty-eight participated in one of five focus groups; the remaining 10 participated in an individual semi-structured interview. Results: Participants described the experience of accessing care as a decisional process, guided by a form of cost-benefit analysis. The process determined whether seeking conventional health-care services ‘is worth it’. Most participants felt that the energy and resources required to access the health-care system outweighed their expected outcomes, based on past experiences. Participants who did not see the benefit of care seeking turned to self-treatment, use of complementary and alternative services, and engaged in patterns of health-care avoidance until a crisis arose. Discussion and Conclusion: Findings suggest that a renewed effort to promote patient-centred care and a biopsychosocial approach may improve the health-care access experiences of persons with MS and reduce service avoidance.