Multiple sclerosis and identity: a mixed-methods systematic review

Abstract

Purpose This systematic review addressed the following topics: (1) psychometric measures used to evaluate the identity/self in MS patients; (2) impact of MS on the identity/self of patients; (3) relationships between the identity/self and the adjustment to MS. Method Five electronic databases were searched for all peer-reviewed empirical studies published up to April 2024 (PROSPERO CRD42023485972). Studies were eligible if they included MS patients and examined identity/self through quantitative, qualitative, or mixed-method study design. MMAT (Mixed Method Appraisal Tool) checklist was used to assess the quality of included studies. After conducting narrative synthesis (quantitative studies) and thematic synthesis (qualitative studies), an integration was undertaken following a convergent segregated approach. Results Forty-three studies were included (13 quantitative, 26 qualitative, and four mixed methods). Studies used measures of “self” to refer to specific domains, and of “identity” to highlight the individual’s uniqueness and continuity of experience over time. MS causes a loss of various aspects of self (physical, working, family, and social self) and identity discontinuity. Maintaining a positive self-concept and integrating MS into one’s identity are associated with better adjustment to MS. Conclusion Clinicians should consider the centrality of identity redefinition for the promotion of MS patients’ adjustment to the illness.