Living with multiple sclerosis in South Africa: how is multiple sclerosis experienced in the workplace?

Abstract

Purpose

The aim of this qualitative study was to explore how individuals living with multiple sclerosis experience their disorder in the South African working environment. In this paper we present the experiences of office-based workers living with multiple sclerosis, their challenges, and coping mechanisms.

Material and methods

We purposively recruited seven participants who have been diagnosed with multiple sclerosis in the last five years. Participants were interviewed telephonically. Interviews were guided by a semi-structured interview schedule which was supplemented with additional probes. Interviews were analysed thematically using a qualitative software programme.

Results

We identified two superordinate themes: bringing multiple sclerosis into the workplace and adapting to multiple sclerosis in the workplace. The findings demonstrated the diverse manner in which participants chose to disclose their multiple sclerosis and manage co-workers’ perceptions of multiple sclerosis. Participants employed practical strategies, such as making using of mobility aids, taking notes, conserving energy, and adapting responsibilities. Participants also negotiated accommodations, such as changing working hours, to overcome their unique challenges. Participants emphasised the importance of keeping a general positive attitude but showed reluctance to prepare for their future decline.

Conclusion

Our findings indicate that participants manage the disclosure of their diagnosis of multiple sclerosis in order to maintain a favourable relationship with the workplace. Further, despite various physical and psychological limitations, participants were mostly able to adapt to their work environment. Although further research is required, employers and clinicians should consider focusing on the current needs of individuals living with multiple sclerosis to mitigate work-related challenges, rather than planning for future decline.

Implications for Rehabilitation

• For individuals living with multiple sclerosis and in employment in South Africa, disclosure, management of perceptions and providing accommodations are key aspects in the experience of multiple sclerosis in the workplace.

• Finding ways to help those in employment disclose their MS diagnosis to employers and co-workers, is an important avenue and next step for intervention research in this field.

• Early adjustment and adaptation to MS in the workplace is challenging and further negotiation with line-managers regarding accommodations is often required.

• Employers and clinicians should focus on accommodating the needs of those diagnosed with multiple sclerosis as they arise, rather than focusing solely on the accommodations needed in the future.

Keywords:

• Multiple sclerosis
• adjustment
• work
• experience
• thematic analysis
• South Africa

Disclosure statement

No potential conflict of interest was reported by the authors.