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 identify the perceptions of support for themselves 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 completed the questionnaire. The majority cared for an adult with secondary progressive MS (44.2%) or primary progressive MS (36.8%). Men lived in 45 UK counties and the mean age was 60 years. Most men stated it was ‘quite easy’ (45.8%) to access support for their own needs but a quarter said it was ‘quite difficult’ (26.0%). Older (p=0.05) and retired (p=0.012) men had significantly less difficulty. Many reported ‘no need’ (67.5%) but a quarter ‘would like’ (25.5%) some training. Men still working (p=0.05) and from Southern England (p=0.004) reported a greater desire for training. Half the men had to initiate contact with ‘most’ of the services (50.0%) they needed and a quarter with ‘some’ (25.5%). Few received pro-active support from ‘some’ (15.5%) or ‘most’ (9.5%) of the services they needed. Men still working had significantly less pro-active support (p=0.05). Men were divided having ‘no encouragement’ (38.1%), ‘some encouragement’ (34.1%), and ‘have encouragement’ (27.9%) respectively. Most men (69.3%) had not taken a break from caring, for more than 24hrs, in the last year but many that did were ‘very satisfied’ (50.0%) or ‘extremely satisfied’ (19.2%).
Conclusions Many men appear isolated and unable to take a break. Younger men still working had more difficulties and needs. Interventions are required to support health professionals pro-actively engage with male carers' needs.
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