title: Redefining self: patients' decision making about treatment for multiple sclerosis.
abstract: The treatment of multiple sclerosis (MS) has become possible with the advent of disease-modifying therapies, but little is known about patients' experiences when faced with a complex array of treatment options. The purpose of this phenomenological study was to explore the lived experience of making a first decision about treatment with disease-modifying therapies for relapsing-remitting MS. Nine participants shared their perspectives on negotiating the decision to accept, refuse, or delay treatment. All individuals described a core theme in which decision making about treatment was part of a process of coming to a "redefined self." This core theme included reflections about self-image, quality of life, goals, and being a person with MS. Six common themes supporting this core theme were (a) weighing and deciding what's important, (b) acknowledging the illness as part of oneself, (c) playing the mental game, (d) seeking credible resources, (e) evaluating symptoms and fit with quality of life, and (f) managing the roles and involvement of family. The findings of this study provide a greater understanding about the experience of making a therapeutic choice for those with MS and offer insights for nurses when supporting patients faced with options about treatment.
authors.affiliation: Questions or comments about this article may be directed to Diane Elaine Lowden, MSc(A)N at diane.lowden@mcgill.ca. She is a Clinical Nurse Specialist at McGill University Health Centre, Montreal Neurological Hospital Montreal, Quebec Canada. Virginia Lee, PhD, is a FRQS Chercheur-Boursier Clinician at McGill University Health Centre, Department of Nursing Research, and a Nurse Scientist, at Cancer Care Mission, Montreal, Quebec, Canada. Judith A. Ritchie, PhD, is an Associate Director for Nursing Research (Retired) and Professor Emerita at Ingram School of Nursing, McGill University, Montreal, Quebec, Canada.
authors.forename: Diane
authors.initials: D
authors.lastname: Lowden
authors.forename: Virginia
authors.initials: V
authors.lastname: Lee
authors.forename: Judith A
authors.initials: JA
authors.lastname: Ritchie
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D003657:Decision Making; D004185:Disability Evaluation; D005260:Female; D006040:Goals; D006801:Humans; D008297:Male; D008875:Middle Aged; D020529:Multiple Sclerosis, Relapsing-Remitting / Q000451:nursing* / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology; D012649:Self Concept; D012803:Sick Role