MS Society-Funded Study Investigates Experiences Of Partners Of People With MS

Main Category: Multiple Sclerosis
Article Date: 13 Jul 2009 - 3:00 PDT

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An MS Society-funded study has highlighted the impact that MS has on partners' lives and demonstrates the need for support and services for partners of people with MS.

A study recently published in the journal Multiple Sclerosis has concluded that partners of people in the early stages of MS report feeling isolated and helpless. The study involved conducting telephone interviews with 15 people whose partners were recently diagnosed with MS and asking them a series of broad open-ended questions such as "Can you start by telling me all about what you thought and felt when your partner was first diagnosed with MS?" The interviews covered aspects of participants' lives that ranged from feelings when their partner was first diagnosed to the impact of MS on various aspects of their lives and also with how they cope with these challenges.

Partners of people in the early stages of MS reported a range of emotions from confusion and anxiousness before diagnosis to shock and helplessness after the initial diagnosis was made. Lifestyle changes included job and career changes, social implications, and financial issues caused by MS. Furthermore, participants reported lack of support and understanding surrounding the condition and changes to their relationship with their partner. Social isolation was a key theme along with loss of control and constant worry.

This was one of the first studies to investigate the impact of MS on a partner that is not providing care and suggests that MS can have a negative impact on a relationship during the early stages of the condition. The results also indicate that the financial difficulties were common among partners of people with MS. Interestingly, the study concluded that the impact of MS on partners' lives was the same, whether they were caregivers or not.

Lead author of the study, Angeliki Bogosian, said: "We know little about how illness affects a family member in the earlier stages of a disease. The use of in-depth interviews in our study allowed us to explore further partners' experiences. We were surprised to find that partners in a non-caring role reported such a negative impact of MS on their lives, especially on their social life."

Ed Holloway, Research Manager at the MS Society said, "This study underlines the importance of offering support, not only to people with MS, but also to their partners. The MS Society is interested in investing further in similar research to determine the best way of providing that support. That's why we are currently funding over £1 million into research to develop and evaluate new services to support people affected by MS."

The MS Society is currently funding Miss Bogosian's PhD looking at psychosocial adjustment of teenagers with a parent with MS.

Source
MS Society

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