A Qualitative Exploration of the Socioecological Influences Shaping the Diagnostic Experience and Self-Management Practices Among People Newly Diagnosed With Multiple Sclerosis

Abstract

Background

People newly diagnosed with multiple sclerosis (MS) often pursue ‘health-related’ behaviour changes to feel in control of their diagnosis. However, little is known about the specific factors that may influence behaviour change during this crucial time. Therefore, we conducted an in-depth exploration of the socioecological influences impacting the diagnostic experience and self-management practices following an MS diagnosis.

Methods

We followed a qualitative study design using a phenomenological approach to explore the lived experiences of people newly diagnosed with MS. Analysis was conducted via an iterative process, starting with deductive open coding to map onto the socioecological model, followed by inductive focused coding to extract key themes from participants' reported experiences.

Results

Eight participants diagnosed with MS within the past 12 months were interviewed. Four themes were reported across the MS journey, reflecting the different levels of the socioecological model: (1) taking control of a new diagnosis to retain a sense of personal identity—individual level; (2) grief and acceptance guided by community—social connection, community and social environment; (3) practical management of MS in the wider society—policy and government regulation; and (4) global events that greatly upheave the MS journey—natural disasters and societal conflicts, such as a pandemic. These themes highlighted the complex interrelationship between socioecological factors and self-management abilities in people living with MS.

Conclusions

The diagnostic experience of those with MS is highly complex. Although it varies for each person living with MS, there are shared experiences that often reflect a common cycle of grief. An MS diagnosis provides an opportunity for self-rediscovery, which can both influence and be influenced by socioecological factors. The social and technical nature of self-managing MS strongly shapes the diagnostic experience, underpinning many aspects of daily living, social interaction and physical and psychological well-being.

Patient or Public Contribution

The research team worked closely with an MS-specific consumer panel for the study design. This project was raised with this group, and preliminary results were shared at a national conference for MS during a lived-experience consumer stream to gain additional insights.