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Male carers’ perceptions of support for themselves: findings from a national survey

Male carers’ perceptions of support for themselves: findings from a national survey
Male carers’ perceptions of support for themselves: findings from a national survey
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
2045-435X
Sibley, Andrew
afe7cc9d-614e-4cb1-b080-8ca7df54ae40
Payne, Sheila
d7c97f41-ec69-4157-9339-ca07c521fbcc
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8
Sibley, Andrew
afe7cc9d-614e-4cb1-b080-8ca7df54ae40
Payne, Sheila
d7c97f41-ec69-4157-9339-ca07c521fbcc
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8

Sibley, Andrew, Payne, Sheila and Addington-Hall, Julia (2012) Male carers’ perceptions of support for themselves: findings from a national survey. BMJ Supportive & Palliative Care, 2 (A39). (doi:10.1136/bmjspcare-2012-000196.114).

Record type: Article

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 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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More information

Published date: March 2012
Venue - Dates: 9th Palliative Care Conference, 2012-03-01
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 342855
URI: http://eprints.soton.ac.uk/id/eprint/342855
ISSN: 2045-435X
PURE UUID: 0e4fb453-ece1-4403-87a3-0dbc4ccae3e3
ORCID for Andrew Sibley: ORCID iD orcid.org/0000-0002-2503-5432

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Date deposited: 19 Sep 2012 08:42
Last modified: 14 Mar 2024 11:55

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Author: Andrew Sibley ORCID iD
Author: Sheila Payne

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