Gendered caring? Designing a study to explore what it is like to care for someone with cancer

By Jenny Young

My PhD study explores what it is like to be a man and care for a partner due to their cancer diagnosis. However, it took some twists and turns through the literature before I decided to focus solely on the male perspective. Informal carers (commonly referred to as ‘carers’) have a pivotal role in providing care and support. In the United Kingdom approximately one million people provide unpaid care to someone due to their cancer diagnosis. Informal care is therefore a significant health and social care policy issue but surprisingly one that has been overlooked in the literature.

Caring can be a challenging and demanding role which many will embrace, in often difficult circumstances and without feeling they have any choice. Difficulties and challenges may arise relating to managing daily life, emotional problems and adjusting to a new social identity. Carers who have unmet needs or a high burden level will not function effectively which can have a detrimental impact on the patient due to the key role they have in the patients’ recovery and management of their illness. However, individuals can also experience well-being under difficult circumstances. A growing field of research has found that carers are able to articulate meaningful and rewarding accounts of the caring experience.

Subsequently, the experience of caring can differ according to characteristics of the carer, available support, circumstances of the person cared for and the social and cultural influences and expectations within the caring relationship. Caring is complex and contextually dependent. Yet, within the literature these contextual factors are often underreported or not explored. For example, the relationship between gender and the caring experience is commonly cited but gender is not usually analysed beyond its association with a series of outcomes. Also, most research compares numerical data between males and females with little research exploring caring from the perspective of solely males or females. This is not to discount the valued contribution of these studies but they do not answer questions about the social construction of gender and the subsequent association with carer identity- an area I am keen to explore.

Less is known about the male carer experience. Reflecting the prevalence of female carers (estimated at about 64% in the UK) there is usually a higher representation of female participants within research. Research predominately suggests that female carers have higher levels of burden and distress than men. Explanations for any differences have usually been underpinned by social constructivist theories. These theories suggest that carer gender roles are due to normative constructions of masculinity and femininity that operate in a particular culture and at a particular time. If the cultural positioning of caring as an activity that is expected of women, the suggestion is that this provides an explanation for why women take on a wide range of caring tasks and responsibilities regardless of costs to the self.

Therefore, when caring is positioned as a feminine practice does that cause men to experience a threat to their identity? Research has identified that men can enact a gender- specific style of caregiving, characterised by features such as strength, machoism, rationality and courage. For some this may lead to feelings of well- being. For others, this representation of masculinity can lead to feelings of helplessness and bewilderment.

However, these findings may not be generalisable. My sense is that they paint a narrow picture as masculinity (and femininity) is not a fixed entity. It is a fluid and flexible concept that may differ depending on the particular social setting. 

 It is with all this in mind that I embarked upon my study to explore what it is like to be a male and care for a partner with a diagnosis of cancer. Using narrative research I will conduct multiple interviews over the course of a year to explore the interactions between masculinity, caring and time. Given the underrepresentation of male carers within the literature this study provides an opportunity for male carers to articulate their experiences. I do not think it is helpful to suggest that females may be ‘more distressed’ that males. Consequently, my hope with this research is to recognise that caring is a gendered phenomenon. From that angle of understanding we (researchers and practitioners) can explore how gendered caring is related to psychological well-being and requirements for supportive interventions.

Jenny Young is a PhD candidate and Research Fellow at Edinburgh Napier University.

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