Date Presented 4/8/2016
This qualitative case study explored identity issues of people with multiple sclerosis fatigue. Occupational performance and identity were closely linked. Findings illuminate the connection between occupation and identity and the unique opportunity for occupational therapists to guide clients in identity development.
Primary Author and Speaker: Katharine Preissner
PURPOSE: The purpose of this study was to explore how fatigue affected identity from the perspectives of people with multiple sclerosis (MS).
RATIONALE: Occupation is the primary way in which individuals express their identities. Occupational therapy (OT) practitioners have the opportunity to assist clients in restoring their identities, especially in the presence of chronic illnesses such as MS. Fatigue is one of the most common and most disabling symptoms of MS, yet it is not known how MS fatigue affects identity.
DESIGN: A qualitative case study was used to obtain a rich, descriptive understanding of identity issues among one group of individuals undergoing a 6-wk fatigue management program.
PARTICIPANTS: Potential participants were recruited through MS support groups and flyers. Criterion sampling was used. Inclusion criteria included (1) MS diagnosis; (2) age 18 or older; (3) residence in Illinois where the group leader was licensed as an occupational therapist; (4) participation in a program and interviews conducted in English; (5) attendance at least five of six sessions of a fatigue management program; (6) MS fatigue that was severe enough to be appropriate for the program as judged by a score of 4 or higher on the Fatigue Severity Scale; and (7) score of 12 or higher on the Blessed Orientation, Memory, and Concentration Test to rule out more than mild cognitive impairment.
Seven respondents participated in this study. Participants ranged in age from 27 to 64 yr, with 5 of the 7 participants being ≥50 yr old. All participants were White women with the exception of 1 African-American man. All of the participants were unemployed or retired.
METHOD: Individuals participated in in-depth individual interviews before and after participation in the fatigue management group, and in at least five of six teleconference group sessions led by an occupational therapist. All interviews and six group sessions were recorded and transcribed.
ANALYSIS: The qualitative management software NVivo Version 9 was used to manage data. The constant comparative method was used to derive themes including using open and axial coding. Methods of trustworthiness used included peer review, triangulation through multiple methods of data collection, adequate engagement in data collection, an audit trail, and thick, rich description for transferability.
RESULTS/CONCLUSION: Participants changed how they performed daily activities, which changed self-perception. They struggled with not seeing themselves as busy and active as they had been prior to diagnosis. Some participants described a mourning process that led to a resolution of a new identity. Discussion in the fatigue management group helped individuals reconceptualize their situations.
DISCUSSION: Perceptions of MS fatigue and identity are closely connected. MS fatigue affected activity performance in a three-step process: (1) Fatigue caused changes in everyday activities, (2) this change affected individuals’ efficacy with their life roles, and (3) alteration in a sense of achievement affected their overall sense of self. Understanding how fatigue affects identity from the perspectives of people with MS can help OT practitioners assist clients in the process of identity restoration.
IMPACT STATEMENT: OT practitioners are concerned with engagement in meaningful occupation, which affords a unique opportunity to guide clients in identity development. This study can have a powerful influence on OT by illuminating the connection between occupation and identity, allowing practitioners to support individuals with chronic illnesses such as MS.
