Men Living with Long Term Conditions: Exploring Gender and Improving Social Care
Men living with long term conditions: exploring gender and improving social care
Abstract
Disabled men have traditionally been seen as incomplete men or as entirely gender-less. Research which has looked at the intersection of disability and male gender has largely treated disabled men as a homogenous group with little reference to, for example, impairment related differences. The ongoing move towards self-directed, personalised social care in England suggests that support needs relating to gender may be taken more seriously. A qualitative study with 20 men with Duchenne muscular dystrophy (DMD) in England in 2013 explored the men’s experiences of the organisation and delivery of social care as it pertained to their sense of being men. Our main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. More often than not the organisation and delivery of social care people de-gendered or emasculated many of the men who took part in the study. Our paper speaks to the need to explore impairment specific issues for disabled men; to deliver a more person centred approach to social care which recognises the importance of the social and sexual lives of disabled men; and to create ways in which men can support and empower each other to assert essential human rights relating to independence, dignity and liberty.
Key words
Male gender; masculinity; social care; Duchenne muscular dystrophy.
What is known about this topic
- Disabled men are often treated as gender-less
- Disabled men may face barriers in achieving 'classic indicators' of manhood
- The literature about disabled men often treats them as a homogenous group with little or no reference to impairment specific issues.
What this paper adds
- This paper focuses on men with Duchenne muscular dystrophy (DMD)
- There are challenges to the social care system to respond to the whole range of support needs that men with DMD have including sexual ones
- In the absence of a coherent social care workforce, men with DMD (and other groups of disabled men) will also need to find ways to empower themselves and share experiences.
Introduction
Several groups of disabled people with long-term conditions and/or life threatening illnesses are living longer than ever before largely due to advances in medical technology. Whilst research has begun to focus on the broader social needs of this group, it has largely treated them as homogenous in terms of other aspects of personhood including gender. Historically, disabled people have been constructed as gender-less with gender presented as a troubling and troublesome variable (Shakespeare 1999, Wilson 2010, Zitzelberger 2005). The overarching goal of the study reported here was to understand more about the intersection of male gender and long-term conditions; to see how social care practice in this area could be improved; and to improve outcomes for men with long term conditions who, ideally, would be able to get better support with aspects of their gendered lives which they may have found difficult in the past. The study focused on men living with Duchenne muscular dystrophy (DMD) as an example of one long-term and life threatening condition but with generalisable lessons for the wider community of men with long term conditions who use social care services and supports.
Men living with DMD
Duchenne muscular dystrophy is an inherited neuromuscular disease which affects males (in about 1 in every 3500 UK births.) By the age of 13, boys with DMD have generally lost the ability to walk independently and by the mid-teens there are other complications: curvature of the spine, respiratory difficulties and cardiac failure. The mean age of death without specialised treatment was 19 but during the last few years there have been significant improvements in the ways DMD is managed. In particular, teenagers who have been using nocturnal home ventilation to support their breathing can expect to live to around 27 years (Eagle et al. 2007). The mean age of death is continuing to rise as more effective medical interventions impact on the current generation of men who are reaching stages of adulthood that were, at the time of their childhood, largely unexpected and unplanned.
Recent research in the UK and Canada (Abbott & Carpenter 2014, Abbott & Carpenter 2015, Gibson et al. 2007; 2009) suggested that the social and psychological support needs of men with DMD were poorly served, with the privileging of medical needs. Amidst the challenges of planning for an ‘unanticipated’ adult life, men with DMD may well not have been supported to be and become men either. If transition to ‘successful manhood’ (almost always described in gender neutral terms as a transition to adulthood) is equated with paid work, sexual relationships, financial autonomy, physical and psychological separation from parents and so on, then how do men with DMD who face significant challenges in many of these areas, construct their own versions of being a man, which may be similar or different to other non-disabled peers?
Whilst there has been a growth in literature and research about men’s health, little of this work has focused on the experiences of disabled men (Shakespeare 1999). Wilson et al’s (2013) work suggested that many disabled men have been seen as ‘conditionally masculine’ i.e. that the nature of the impaired body or mind means that disabled men will always be less than wholly male or wholly masculine as compared to non-disabled men. The barriers faced by disabled men create a ‘reliant masculinity’ which stresses powerlessness and stigma and which is in stark contrast to a ‘hegemonic masculinity’, Connell’s (1995) seminal term for a privileged, dominant and idealised masculinity predicated on traits such as physical power, autonomy and dominance. Wilson (2013) argued that for disabled men whose masculinity is often seen as diminished, it reflects the inherent inequality of reliance upon care-giving relationships in order to be or perform masculinity.
Issues and relevance for adult social care and related social care policy in England
The English Government continues to be committed to improved and personalised services for users of social care services (PMSU 2007, DH 2006; 2010). Local authorities are expected to implement change in order to shift social care for disabled and older people towards:
a more preventative and less crisis-driven mode (DH 2008); a less bureaucratic and more ‘personalised’ form of service ‘which is on the side of the people needing services and their carers’ (DH 2007); a system which should ‘empower citizens to shape their own lives and the services they receive’ (PMSU 2007). Whilst there has been discussion about the personalisation agenda being non-neutral in terms of values and ideology (Taylor-Goobe 2008) and its particular ramifications for certain groups (e.g. Disabled people, mental health users, people from Black and minority ethnic backgrounds), the gendered aspects of personalisation as they pertain to men are rarely discussed.
Although some applied research has considered the intersection of ethnicity, poverty and long term conditions (Salway et al. 2007), it is rare for gender to feature as an important variable when working with people with long term conditions who are also users of social care services. As the European Men’s Health Forum states: ‘…services have been slow to recognise the particular issues affecting men in relation to long-term health conditions.’ For the purposes of this study we took adult social care staff to include social workers, care plan managers, assessors and reviewers (whether from user led organisations or local authorities) and support workers (whether employed directly by the service user through a direct payment/personal budget or other staff employed by the local authority to offer support services). This range of social care staff may or may not: have gender on their ‘radar’, have assumptions about the masculinity and ‘real man’ status of disabled men, consider sexual support needs to be ‘off-limits’; or have physical and spoken interactions which emasculate.
Methodology and analysis
The study reported here was a partnership between the Norah Fry Research Centre at the University of Bristol, Dr Jon Hastie (a researcher, film maker and disability activist living with DMD) and the Duchenne Family Support Group (a charity run by those affected by DMD for people affected by DMD). It was funded by the NIHR School for Social Care Research and ethical approval for the study was obtained from the NIHR Social Care Research Ethics Committee.
Participants with DMD were recruited to the study in 2013 with the support of our partner organisation, the Duchenne Family Support Group via muscular dystrophy related Facebook pages. Potential participants were sent an information sheet about the research and we took the step of sending our semi-structured interview schedule in advance to those who were interested in taking part so that they could make a more informed decision about what the interview would cover. The interview schedule was drawn up in the light of an initial literature review and following discussion between the researchers and our partner organisation. It was piloted with two men with DMD and these pilot interviews were immediately transcribed so that we could review them and consider the changes we wanted to make to the schedule for subsequent interviews. Thereafter we carried out face to face interviews with 20 men with DMD aged over 18. David Abbott at Bristol carried out two thirds of the interviews and Jon Hastie carried out a third. All of the interviews took place in the participants’ homes, they were digitally recorded with consent and then fully transcribed. Interviews lasted between 36 and 106 minutes with the average length being 65 minutes. Participants were given a £20 gift voucher in recognition of their time and contribution.
The participants were from a range of geographical locations across England and were aged between 21-33 years (see Table 1 for more information).
INSERT TABLE 1
We used a thematic analysis to examine the data following established protocols as described by Braun & Clarke (2006). The three researchers exchanged initial coded transcripts to check for consistent approaches, as well as useful differences. We met to discuss emerging themes and sub-themes and to agree the broad headings around which we would organise the different themes. Prior to this we invited a number of national and international experts to comment on emerging themes in a two day analysis meeting. This entailed asking colleagues to look at about half of the transcripts with a particular lens relating to their area of expertise namely: social work and social care; intersections of male gender and disability; and, disabled men's narrative accounts. This part of the analytical process was designed to help us with key messages for policy and practice as well as the plan to develop a theoretical paper about the intersection of disability and masculinity and was not designed to replace or replicate our own analysis about the intersection of disability, male gender and social care (the focus of this paper).
Findings
Our main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. Gendered needs around personal care, social opportunities, empowering interactions with social care organisations and staff, sex and sexuality were almost never addressed in assessments, support planning and reviews or in day to day practice. In addition restrictions on a satisfying social life were linked to a shortage or inflexibility of support arrangements. In the organisation and delivery of social care the men in this study reported being treated as largely gender-less.
Men’s gendered identity
Men with DMD in the study described a strong sense of male identity typified by phrases like, “I think of myself as a normal bloke”. They also talked about constructions and perceptions of being a man which arguably challenged stereotypes in a positive way. For example: believing that maturity and self-awareness might matter more than having a ‘traditional’ male body; muscles; emotional strength and maturity developed by facing some of the trials and challenges associated with living with DMD; and understanding that being a man with DMD necessitates care and support and that acceptance of this demonstrated strength rather than weakness.
Because I'm disabled and I'm a man, I think you're more of a man if you accept that you need help. That's strength. It's not a weakness. I need to accept care. I think that men use tools and stuff. Carers are like the tools to help you in your life, really.
Participants offered accounts of their similarities and differences from stereotypes of ‘ordinary’ (usually non-disabled) men. Areas of similarity included: being and wanting to be sexually active; cultivating self-esteem through academic achievement, work and rewarding activity; hobbies and interests such as sports, drinking, computer games, technology, art and design; being a father (as one participant was); living independently and/or owning a home. Areas of difference included: difficulties in attracting sexual/intimate partners; barriers to obtaining paid work; concerns about moving out of the family home relating to care, support and loneliness; restrictions on a social life linked to shortage or inflexibility of support arrangements; physical appearance and muscularity.
I can't compete against the average man in terms of the way I look. I'm not a completely normal shape to everybody else and it's more about what the ladies think.
Organising and delivering social care support
We found little or no reference to discussion in assessment, planning, review, practice or on-going interactions with the range of social care staff about things such as: intimate and sexual relationships and the physical and emotional associated challenges; the gender preferences of staff/carers; psychological needs in relation to body image, physical decline, loss of hand function, use of steroids. Also missing was discussion about how restrictions on funding and availability of support staff to facilitate a social life and community participation heavily restricted men's sense of agency and emerging manhood. As one man said:
They seem to be completely gender – it's not even gender neutral, because gender's not even in there. I think the actual impact of social care can be incredibly emasculating, if it is set up in such a way that it takes away your independence and your autonomy.
Most (though not all) men said they would be open about discussing the range of needs they had as men in assessment and support planning forums. None could remember ever having been asked:
No, they don't ask those kind of questions. Open, yeah. I would have been very open. But they might feel embarrassed. But me, I'm kind of an open guy, so it's just natural, really.
There were examples of patronising interactions between staff and men including men being given soft toys and called 'love' by older, female carers in public and in private, as in this example:
A lot of the [agency] people work with children. So this one lady, she...because I was in bed, and I was ready to get up, and I was just lying there, she said, 'You look like a turtle, sitting there.' She got me this stuffed turtle for my birthday! It's like, really? She was sort of like, 'Turtle, turtle.' I think that's a bit...it's alright if you work with children, but...
One man said he felt carers were sometimes over-anxious about his body and that he felt that he was treated as something 'breakable'. He felt that the carers who got him up in the morning projected some of this anxiety and were not always comfortable providing with him intimate care. He felt 'mothered' by some of the carers and said that he found it hard to say anything about this to anyone. He was animated in his view that when he felt in control of his support then he felt more in control of his life:
They think I'm a bit more fragile than I am. Making decisions about the support I get is really important. It gives me more power and makes me feel...yeah. But I am in control, it is my – I mean it's my life, so.
We noticed a strong correlation between feeling like a man and the degree of choice and control participants had over their everyday support. Some men felt that living independently with personal assistants maximised their sense of choice and control and boosted their sense of being a man:
I think my sense of being a confident, successful man has only really come about to a real extent since I've moved out and had the 24 hour care package, which has allowed me to be completely independent.
It is tempting to assume that an optimum kind choice and control would be personalised, self-directed support in an independent living situation, but this was not always the case. For others, achieving independence could happen in other ways. One man who lived in his parental home and had a particularly strong bond with his mother had little interest in moving out (neither was leaving home before marriage the cultural norm in his family). He said he had achieved states of independence in his mind and mind-set by cultivating self-confidence and achieving goals. The least positive scenarios were generally where care/support was unreliable, not considered to be adequate, or with an overwhelmingly medical focus. This is not surprising and may seem un-noteworthy but the gendered consequences of this are rarely considered. For the men who said that they did not have enough hours of support, this usually meant that their opportunities to go out were limited. How does confident adult male identity emerge in the absence of opportunity to be outside, take mental and physical risks, avoid parental scrutiny, develop interactions with sexual connotations? In instances where support workers or agency staff could not drive for example, then the men would be unlikely to be able to go out at all.