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

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.