Male carers' perceptions of support for adults with Multiple Sclerosis: findings from a national survey in the UK

Sibley, Andrew, Payne, Sheila and Addington-Hall, Julia (2012) Male carers' perceptions of support for adults with Multiple Sclerosis: findings from a national survey in the UK. BMJ Supportive & Palliative Care, 2 (A23). (doi:10.1136/bmjspcare-2012-000196.67).

Abstract

Background: multiple sclerosis (MS) is more prevalent in women than men. Men are particularly likely to take on the role of carers in MS but this has been rarely researched. The EAPC Carer White Paper notes the paucity of research into carer subgroups' support needs.

Aim: to investigate the perception of support for adults with MS and of men caring for adults severely affected by MS.

Method: questionnaire survey design. Questionnaire developed from initial qualitative interviews. Widely disseminated via UK MS Society.

Findings: 231 men took part (85% online, 15% by post). Most cared for an adult with Secondary Progressive (44.2%) or Primary Progressive MS (37%). Men lived in 45 UK counties, mean age was 60 years, and half reported spending at least 50 h a week caring (52%). A third (34%) had not tried to access advice/information about support/services. Of those that had, most found it ‘very’ (15%) or ‘fairly easy to find’ (54%). Men aged under 55 years reported most difficulty in accessing information (p=0.006). Twenty-five per cent of men had received no support/services in the last year. Of the remainder, 67% reported the support/services had ‘made things easier’. Most men reported the amount of support received ‘was about right’ (68%), and rated professional care staff as ‘completely’ (16%), ‘very’ (37%) or ‘fairly reliable’ (32%). Most men were ‘extremely (8%), ‘very (29%) or ‘fairly satisfied’ (30%) with support from social services. Those still working reported significantly more dissatisfaction than retired men (p=0.05).

Conclusions: men were largely positive, but not effusive, about services/support available to them and the person in their care. Younger men repeatedly differed in their perceptions, suggesting that they either have higher expectations, greater need or both. Health professionals need to consider the specific needs of men carers

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Contributors

Author: Andrew Sibley

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