Social care services must do more to address the gender-specific needs of disabled men, says a research study which found that service users felt ‘degendered’ by the support they received.
Gendered needs around personal care, social opportunities and sexuality were almost never addressed in assessments, support plans and reviews, found the Bristol University study.
Researchers interviewed 20 men aged 21-37 with Duchenne muscular dystrophy, an inherited, life-limiting neuromuscular disease affecting boys that causes muscle weakness, meaning that by the age of 13 most sufferers have lost the ability to walk independently. The disease also causes curvature of the spine, respiratory problems and cardiac failure.
The men interviewed had a strong sense of male identity, which was linked to wanting to be sexually active, living independently, having hobbies and interests such as sport, drinking or computer games and cultivating self-esteem through work or rewarding activity.
But they were also aware of the barriers they faced in achieving these goals including difficulties in attracting sexual partners, barriers to obtaining work, concerns about moving out of the family home and restrictions on social life.
However, despite this, they found little or no discussion during assessment, support planning, review or in ongoing interaction with social care staff about these issues.
KEY MESSAGES FROM THE RESEARCH
- Social care staff need to be able to initiate discussion on sensitive topics, including those to do with sexuality, with men with long-term conditions so that these service users see these topics as legitimate and important.
- Men with long-term conditions may need to self-organise to teach social care staff about the importance of their identities as men.
- Men with Duchenne muscular dystrophy are not representative of all men with long-term conditions but what may be generalisable is the experience of living with a medical label first, as a person with a wider range of needs second and, possibly, as a man third, or as a genderless person.
Most participants were not sexually active and, because of loss of hand function, many could not masturbate. However, just one recalled a social care professional talking to them about sex, even though most of the participants would welcome such conversations. Two-thirds of the participants said they were using or considering using sex workers, though this would mostly require the active co-operation of carers or paid staff.
The men reported patronising interactions with staff , including assumptions by social care professionals that they would not be interested in fatherhood or marriage, and said they would appreciate cues and opportunities to broach sensitive topics with staff.
The study also found a lack of discussion by social care staff on how restrictions in funding and availability of support restricted people’s ability to have a social life and participate in the community. One participant said:
It’s [an] asexual, basically, approach to social care, in my experience. I think the actual impact of social care can be incredibly emasculating, if it is set up in a way that it takes away your independence and autonomy…”
There was also a strong correlation between feeling like a man and the degree of choice and control participants had over their day-to-day support. However, the study also uncovered attitudes that were more challenging of traditional ideas of masculinity, with some participants seeing strength in accepting that you needed support and dealing with the challenges of their condition.
A short film based on the research findings has been produced, made with filmmaker Shawn Sobers and others.
The study took place between October 2012 and April 2014 and was carried out by the Norah Fry Research Centre at Bristol University. It was commissioned by government-funded research consortium the National Institute for Health Research (NIHR) School for Social Care Research (SSCR).
Twenty men with Duchenne muscular dystrophy, aged 21 to 37, were recruited to the study in 2013 with the support of the Duchenne Family Support Group and relevant Facebook pages.
One of the participants was married, one identified as a gay man and one had a label of intellectual disabilities; 11 lived in the home of their parents, seven lived independently and two lived in residential care; seven had direct payments or personal budgets and employed personal assistants; six were in receipt of continuing healthcare, three had agency staff organised by their local authority and two received care exclusively from family members.
Face-to-face interviews were carried out with the men and analysed using thematic and conversation analysis.
For more information on the study email Professor David Abbot.
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men who have got mental health do not get any help at all from any support company or from the NHS as they would like to look are always hate people with a mental health problems.
Fantastic article highlighting a hugely neglected area.