Experiences of partners of people in the early stages of multiple sclerosis

Abstract

Background

Partners of people with multiple sclerosis are known to experience a heavy physical and psychological burden. However, little research has explored, in detail, the partners’ experience in the first years after diagnosis. The aim of this study was to explore and describe the experiences of partners of people who are in the relatively early stages of multiple sclerosis.

Methods

Fifteen semi-structured telephone interviews were conducted to assess partners’ concerns and difficulties. Data were audio-taped, transcribed, and analysed using an inductive thematic analysis.

Results

Key themes were being unsure of what the future might hold and feeling helpless and out of control. Furthermore, partners reported that other people could not understand and support them, which led to a feeling of social isolation.

Conclusion

The research illustrates the disruptive impact that MS has on partners’ lives and highlights the need for support to focus on partners’ needs even in early stages of the disease.