Psychosocial aspects of the lived experience of multiple sclerosis: personal perspectives

Abstract

Purpose: To explore participants’ personal perspectives: on psychosocial aspects of living with multiple sclerosis (MS) following inpatient rehabilitation; and on experiences of the rehabilitation hospital stay and discharge to home.

Methods: One-on-one, semi-structured in-depth interviews, were conducted with 15 people with various forms of MS, post discharge from a rehabilitation hospital. Thematic analysis of the data was undertaken.

Results: The emergent themes were: Fatigue, Independence and Dependence, Loss, Provision of Care, and Perceptions of Care. The first three themes shared a focus on the lived experience of MS and are the subject of this paper. Each of the two remaining themes were essentially independent of the other themes, with one being centred on experiences of the rehabilitation hospital stay, and the other on aspects of general medical care.

Conclusions: Personal perspectives on living with MS following inpatient rehabilitation focussed on: the negative impacts of physical and mental fatigue; the desire to maximise independence in activities of daily living and to minimise reliance on others; and perceptions of loss. These findings shed new light on psychosocial aspects of the lived experience of MS and, as such, have potential applications in rehabilitation for those with MS.

Implications for Rehabilitation

• Physical and mental fatigue is central to the lived experience of multiple sclerosis, as it has an all pervading negative influence on most aspects of life, and can be considerably debilitating.

• The severe and debilitating effects of multiple sclerosis-related fatigue mandate an explicit focus, of rehabilitation, on fatigue, and, in particular, on the fostering of the development of strategies that serve to minimise the multitude of negative impacts of fatigue.

• For those with multiple sclerosis, considerable importance is placed on maintaining or regaining independence in activities of daily living, and in daily personal care activities, in particular, partly because a need to rely on an intimate partner or other family member for support with such activities can be problematic.

• The high importance of independence in activities of daily living, and in daily personal care activities in particular, is indicative of the need for multiple sclerosis rehabilitation to have an explicit focus on this domain, in terms of interventions that aim to maximise independence in such activities.

Keywords:

• Multiple sclerosis
• psychosocial perspectives
• rehabilitation
• lived experience

Acknowledgements

We extend our heartfelt thanks to the participants who shared their personal experiences of living with MS; their courage and determination was truly inspirational.

Disclosure statement

No potential conflict of interest was reported by the authors.