Introduction

Many people with long-term conditions are living longer, healthier lives due in large part to advances in medical technology. Research tells us however that people’s broader social needs are not always so well supported – things like help to find work, get good quality support, have help to maintain a good social or cultural life, or pursue intimate relationship.

Men who live with Duchenne muscular dystrophy (DMD), a life threatening, long-term condition are one such group. DMD is an inherited neuromuscular disease which affects males (in about 1 in every 3,500 UK births.) By the age of 13, boys with DMD have generally lost the ability to walk independently. By the mid-teens there are other complications: curvature of the spine, respiratory difficulties and cardiac failure. For young people with DMD, the years between 15 and 20 are likely to mean further spinal surgery and decisions about the use of assisted ventilation for respiratory management. The mean age of death without specialised treatment was 19 but during the last few years there have been significant improvements in the way 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. 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.

Previous research suggests that once this group of men have finished at school, college or higher education, many have no meaningful day time activity and report high levels of social isolation.

Objectives

This study focused on this group of men as an example of just one group living with long-term conditions for whom good quality social care is important, and spoke to 20 men with DMD and find out more about their experiences of being a man with a long-term condition and about whether the support they receive takes any account of their gender.

Methods

The study took place between October 2012 and April 2014. Twenty men aged 18+ with DMD were recruited to the study in 2013 with the support of the Duchenne Family Support Group and via muscular dystrophy related Facebook pages from a range of geographical locations across England including both urban and rural settings. They ranged in age from 21 to 33; 17 were white British; 1 participant was married with children; 1 identified as a gay man; 1 had a label of intellectual disabilities.

Other variables the project team sought to purposefully sample for were living situation and primary source of care and support. 11 participants lived in the home of their parents, 7 lived independently and 2 lived in residential settings.

In terms of support and care, 7 had direct payments or personal budgets and employed personal assistants, 6 were in receipt of continuing health care funding, 3 had agency staff organised by their local authority, 2 received their support from the staff in their residential setting, and 2 received their care exclusively from family members.

Face-to-face interviews were carried out with the men and analysed using thematic and conversation analysis.

Findings

  • Social care in its broadest sense did little to support a positive sense of masculinity or male gender (with a very small number of exceptions) for men with Duchenne Muscular Dystrophy (DMD) who took part in this study. More often than not the organisation and delivery of social care de-gendered many of them. 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-today practice.
  • Participants 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 general male stereotypes in a positive way. For example: maturity and self-awareness mattering more than muscles; understanding that being a man with DMD necessitates care and support; achieving states of independence (physical or mental) which may not necessarily involve moving out of the family home; emotional strength and maturity developed by facing some of the trials and challenges associated with living with DMD.
  • Participants offered accounts of their similarities to, 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 (for some linked to a concern about not being able to ‘protect’ current or potential female partners).

One of the most commonly discussed aspects of manhood related to intimate relationships, including sexual ones.

Men living with long-term conditions: exploring gender and improving social care
( https://www.sscr.nihr.ac.uk/wp-content/uploads/SSCR-research-findings_RF048.pdf )
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