Relapsing-remitting multiple sclerosis: an interpretative phenomenological analysis of dyadic dynamics

Abstract

Background

Multiple sclerosis, a chronic degenerative disease, impacts persons with the disease and their caregivers, usually the spouse. Few studies have considered the dyadic adjustment to the disease, and even fewer have considered the type of multiple sclerosis. This study aimed to explore the experiences and strategies of couples in which one spouse had relapsing-remitting multiple sclerosis using dyadic interpretative phenomenological analysis.

Methods

Six couples agreed to participate in the study. Semi-structured interviews were conducted with both spouses together to observe their interactions.

Results

Three higher-order themes emerged from the analyses. First, “each is stuck in its own bubble” represents a situation in which each spouse fights on his or her own side to avoid the disease or to avoid the suffering associated with it. Second, “the breakdown of communication” highlights disconnected emotional communication that protects each person but weakens the couple. Third, “the alienated couple” indicates that the two spouses are both emotionally distant and physically united, which prevents them from talking about difficult things.

Conclusion

These results demonstrate the importance of supporting the couple before avoidance strategies for fighting the disease are put in place and become entrenched.

Implications for rehabilitation

1. The persons with relapsing-remitting multiple sclerosis and their partner struggle with the disease in their own anti-depressive bubble using avoidance individual strategies, and leading to a breakdown in the emotional communication between the two partners.

2. Individual intervention centered on acceptance would allow each of the partners to experience psychological events and to limit strategies of avoidance.

3. Dyadic support would allow the two partners to maintain emotional communication to preserve their relationship.

4. These two complementary interventions could be provided as early as possible for the couples before the avoidance strategies and the distance between the two partners become entrenched.

Keywords:

• Multiple sclerosis
• couple
• qualitative study
• adjustment
• avoidance
• strategies
• communication

Disclosure statement

The authors declare that there is no conflict of interest.

Acknowledgment

The study was supported by the Labex (laboratory of excellence) DISTALZ (Development of Innovative Strategies for a Transdisciplinary approach to Alzheimer disease). We would like to thank Bruno Lenne and Rekha Barthelemy from the neurology service of the University Hospital Saint-Philibert (GHICL-France) for their help in this study. We want to express our gratitude to the couples who shared their experiences with us. We also thank anonymous reviewers whose comments allow us to improve this article.