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Men are from Mars: building a group for male relatives of people with MS

Lisa Black, MS specialist nurse
Jo Johnson, consultant neuropsychologist
West Sussex Primary Care Trust

Way Ahead 2009;13(1):10-11
a line of people

The following article describes how an MS specialist nurse and neuropsychologist set up a men's group for people living with a partner who has a confirmed diagnosis of MS. The group began as a one off information evening and is now a well-established bi-monthly group that is attended by a significant number of men. The project was also presented to the MS Trust's annual conference as a poster presentation and was awarded first prize.

Introduction

While the complex care needs of people with MS mean that they often receive support from a range of health and social care professionals, it became increasingly apparent that the needs of their partners were often overlooked. This is the case with many conditions but is particularly relevant to MS as many people with the condition are diagnosed in the third or fourth decade, an age at which many people are starting families, establishing careers and have ambitions for a happy future. Thus, it can prove challenging for both the individual diagnosed with the condition and their family members to adjust to the changes that the diagnosis can represent.

Evidence suggests that women are often better at sharing their problems and gaining support than men. Generally, men do not seek to develop support systems in the same way as women. They often rely on their partners for emotional support as well as to maintain friendships and family contacts that make up most of their support systems. Thus, when a woman is diagnosed with a long term condition, the emotional support previously available to the family is sometimes lost.

Men often find themselves sacrificing a degree of their own independence and leisure time in caring for their partner. Male carers are vulnerable to missing out on career opportunities and financial security may be affected. Research has indicated that carers of people with MS are very vulnerable to stress and feelings of depression1. In male partners these feelings often manifest as anger sometimes lead to the adoption of negative coping strategies such as alcohol or substance misuse.

Many females with MS had reported that their male partners were not coping despite outward appearances, and it emerged that many of these men had stopped seeing friends, were seeking solace by drinking excessive alcohol or overworking. These women felt that their partner's distress was having a negative impact on their own ability to cope as well as making family life less enjoyable. However, many partners are out working when professionals conduct home visits to the individual with MS. As a result of these reports an MS nurse together with a neuropsychologist set out to explore the possibility of setting up a group for men living with somebody with MS.

Initial meeting

A list of contacts was requested from various health professionals known to have clinical contact with people with MS. Letters were then sent out to men inviting them to an information evening at a local hotel. A hotel was thought to be a good environment to hold such an evening as it was a neutral setting where men could openly come without feeling stigmatised. It also felt appropriate to hold the event in the evening so working men could easily attend without notifying their employer. The invite emphasised a one off evening to provide an opportunity to meet other people in the same position, to share and solve problems and to ask questions without fear of hurting a partners' feelings.

Open male discussion

The first meeting started with introductions and small group discussion around the impact of MS on partners. The men were very open in admitting that their partner's condition had made a significant impact on their lives. They were very honest about their struggles to juggle work with supporting their partner and many were also doing a lot for their children too. The group members had a lot in common, and the feedback from the attendees was very positive, with one individual even suggesting that the gathering felt like a 'men's night out'.

At the end of the first meeting, a short questionnaire was distributed to the men in order to seek their views on the session and invite suggestions for what they might find useful or supportive in future sessions. The feedback on the questionnaires suggested that all of the men who attended had enjoyed the session despite much anxiety beforehand about what it might be like. All who attended expressed a desire to meet again and it was agreed that bi-monthly meetings would be convenient and sustainable.

Developing the service

Six meetings have now taken place. The first two meetings involved a short presentation on a relevant topic such as cognition or fatigue. This was followed by a less formal time of discussion. At two further sessions a local consultant in rehabilitation medicine has attended to answer questions on diagnosis, treatment and prognosis. This has proved to be very useful, generated lots of discussion and increased knowledge amongst the group.

At Christmas a social evening was organised and several couples explained that socialising was an experience they had not enjoyed for some time. Many explained how they are often left out of social occasions due to problems with access to venues or a lack of understanding from work colleagues as to coping with physical disability.

Female partners also reported that, since the start of the group, their male partners had become increasingly more relaxed. A number also suggested that their partners' increased knowledge had benefited them, even if somewhat indirectly.

The January meeting was used to review the group's journey so far and plan for the coming year. There was much positive feedback and a programme for the coming twelve months was drawn up. The format includes a mixture of formal events when speakers will be invited but also evenings for unstructured discussion. There was a general consensus amongst the group that the sessions had been useful and there was a desire to continue and welcome more men in the same position.

Evaluating the service

A trainee clinical psychologist is currently in the process of formally evaluating the group. It is hoped that her analysis will provide information as to why the group seems to be working so well and also in what direction the group needs to take in the future.

In answer to the question, 'What has been most helpful about this evening?' the following comments were amongst the responses given:

Listening to other people's problems

Meeting other people in the same position

Just that it has happened - more please!

Sharing problems, talking about it

Conclusion

Purely on the basis of such consistent and ever increasing attendance at these meetings, the team feel that this is an unmet need which could be operating on a much broader level. Similar services could usefully be explored within other health service areas.

References

  1. Forbes A, While A, Mathes L.
    Informal carer activities, carer burden and health status in multiple sclerosis.
    Clin Rehabil 2007; 21(6): 563-575.