Men are perceived as having a more privileged social status than women, leading to inequalities in pay, social and workplace roles, and access to opportunities. Attention has therefore rightly focused on gender inequalities to improve opportunities across a spectrum of issues for women. However, in some contexts, the gender positions are reversed.
An example of this can be seen in lymphoedema services. Although the UK population has an almost equal split between men and women (49% to 51%), men represent 20% per cent of lymphoedema service caseloads (Cooper and Bagnall, 2016) and there is little focus on the specific needs men who have lymphoedema.
Health literacy
Lymphoedema is a long-term condition that results in oedema being present in any part of the body, due to multiple causes, and at present it is incurable. It is managed through an array of methods, such as compression therapy and low-level light therapy (Lymphoedema Framework, 2006).
It is worth taking a gender-focused look at how being male impacts on living with a long-term condition. A number of research papers have considered this issue and examined the differences between the genders (Clouston et al, 2017; Protheroe, 2017).
Within this context, some research has explored the subject of health literacy, which depends on an individual's characteristics, their access to social resources, and their ability to engage with, appraise and understand information to aid decision-making about their health.
Men who have lower health literacy levels are associated with fewer support networks, more likely to live alone and are less able, or willing, to engage with the management of their own health and services (Clouston et al, 2017; Panagioti et al, 2018). This is not representative of all age groups but, when we consider that the main populations affected by long-term conditions comprise individuals over the age of 65 years, who account for 70% of health and care spending and 50% of GP appointments (NHS England, 2018), health literacy should be considered an important issue.
Research by Moffatt et al (2017) has suggested that the risk of lymphoedema increases with age. Extrapolating from available government data (Office for National Statistics, 2018) indicates that the number of people in England who could potentially be affected may be about 315 000, with men representing around 65 000 of these.
‘If we are to consider the male perspective, we need to take into account the notion of masculinity, and how this forms part of our patients' identity’
Research limitations
Qualitative research focusing on men diagnosed with lymphoedema has suggested that living with this long-term condition will have a detrimental affect on their emotional state, appearance and even overall socialisation, although this will vary between individuals (McGarvey, 2014; Nixon, 2018). Another research study (Michael, 2019) whose primary focus was on lymphoedema but also looked at the effects of prostate cancer, identified that men with lymphoedema experience changes in their self-perception, with some using expressions such as that they feel ‘half the man’ they once were to describe the experience, alongside having to manage the general disruption to their lives.
All three research studies (McGarvey, 2014; Nixon, 2018; Michael, 2019) focused on patients with lymphoedema following treatment for head and neck and prostate cancers. Other research has studied patients' experience of living with lymphoedema due to other causes, such as non-cancer-related lymphoedema, although this has taken an integrated approach, with the male and female perspectives combined into a single narrative. Since women make up 80% of patients with lymphoedema this is understandable, as study samples are likely to include only a few men or none (Watts and Davies, 2016).
Integrating these stories and voices into one, however, has limitations, in that it does not address the nuances that exist between men and women. If we are to consider the male perspective, we also need to take into account the notion of masculinity, and how this forms part of our male patients' identity, culture and even behaviour. This can be challenging: much as the ongoing debates within feminism, there are a number of debates surrounding masculinity.
Topical discussion
The challenges this presents should not prevent us engaging in discussions that surround men living with lymphoedema. Masculinity can take many forms: there is no single concept of what it is to be a man that can be applied to all.
Nursing as a profession is yet to represent wider society in terms of gender balance. In an effort to rectify this, recruitment campaigns have sought to address this (NHSE, 2019). This also requires an effort to provide alternative male role models that are quite different from the currently predominant one.
The notions of gender differences between men and women can be a major hindrance, perpetuated as they are by stereotypes in popular books such as Women are from Venus, Men Are From Mars, by relationship counsellor John Gray (Martinsen, 2012). However, despite the potential challenges of engaging with the concept of masculinity, each health professional can develop their own emotional and gender intelligence within the care they deliver.
This does not negate our responsibility to begin discussions about men, and how commissioned services can support them further. This is set against the current model of personalised care, which centres on the notion of viewing and collaborating with those engaging with services. How we engage men is a challenge for many, and the use of leaflets designed for and aimed at men or male-only support groups can offer an alternative for this often hard-to-reach group.
If we do not consider gender within this approach, how can we deliver personalised, patient-centred care that is embracing and encompassing to every individual who accesses and uses our health services?