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31 January 2018

“Genuine Hope” – Experiences of partners of people with MS

A new NEU research paper examines the role and experience of partners of people with MS.

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Social support plays a pivotal role in our experience and management of chronic illness. Partners of people with MS in particular exert a key influence. It is surprising then that there is just a handful of scientific papers on the role and experience of partners of people with MS.

A new paper from our team published in Frontiers in Psychology is adding to this list. The study explores lived experiences of partners of people with MS (PwMS) who have adopted the OMS Recovery Program.

As a partner of a PwMS herself, lead author Dr Sandra Neate was keen to understand partners’ attitudes to, and experiences of, the effect of MS and lifestyle modification on their life, relationship and view of the future held by partners.

The research team interviewed 21 partners of PwMS who had attended an OMS retreat, a residential educational intervention which encourages lifestyle modification. Although many themes were identified for partners, the paper reports on one of the study’s themes, the psychological shift experienced by partners of people with MS.

Partners of PwMS who have changed their lifestyle experienced a broad range of psychological adjustments. Dr Neate explained that:

…some partners expressed somewhat predictable psychological shifts previously described in the literature, such as difficult emotions and a sense of loss and sacrifice, [but] many partners experienced acceptance and adaptation and some partners expressed a body of new and encouraging psychological and philosophical changes.”

Hope and optimism

Previous research describes a fairly bleak view of being a partner of someone with MS. However, the partners in this study were quite a unique group – where the person with MS and, often the partner themselves, were undertaking lifestyle modification.

The psychological shift experienced by partners occurred in this context. Partners reported a sense of hope, optimism, a sense of empowerment and taking control, confidence and personal growth.

Partners in our study frequently expressed that the self-management programme gave them genuine hope…” Dr Neate said.

Isn’t it wonderful that, for a disease in which classically there has really been no hope, the act of PwMS striving to look after themselves and get really healthy isn’t seen by their partners as some kind of hardship? In contrast, it gives them real hope and optimism for the future!

By also keeping the person with the illness well, the OMS Recovery Program is a real win-win solution!

Professor Tracey Weiland and Dr Sandra Neate