This Men’s Health Week, we want to take a moment to acknowledge a group whose voices are underrepresented in both the hospital environment and research: the fathers, stepfathers, grandfathers and male caregivers of children with brain tumours. We are lucky to work with some incredible male caregivers, and we want to give their experiences their own space, recognition and support.
Expectations of men
Caring for a seriously ill child brings immense emotional and practical challenges, regardless of gender. But for many male caregivers, this experience is also shaped by societal expectations of ‘masculinity’ and what it means to be a ‘man’ in a situation such as this. Not all, but many men find these norms of masculinity unhelpful. These norms vary by culture but can typically position men in the role of strong and stoic provider. These expectations can influence how fathers interact with the healthcare system, how emotions are processed and expressed, and how they experience and access support.
Research into the experiences of fathers of children with a life limiting condition has shown that fathers often take on the role of protector and supporter, working hard to be ‘the rock’ for their families, even as they face overwhelming emotions like fear, grief and helplessness (Postavaru, Swaby & Swaby, 2021). In another study into fathers of children with cancer, many described hiding their distress, not wanting to be a ‘burden’ on their family. Interestingly however, when these same fathers were asked what advice, they would give to a father whose child had been recently diagnosed with cancer, 75% said they would encourage asking for support and talking to others (Davies et al., 2023).
Barriers to involvement
Research into men’s experiences of fatherhood in the context of a child with a life limiting condition has also highlighted the impact of practical barriers. A systematic review (a type of research which brings together the findings of multiple studies to identify shared themes across different studies), identified that work commitments and financial pressures could make it hard to attend appointments which can lead to a sense of disconnection from a child’s care (Fisher, Fraser, & Taylor, 2023). Many fathers in the studies included in this systematic review expressed a desire to be more involved in their child’s care but felt ‘excluded’ or on the periphery in medical settings. Being involved in medical discussions and receiving first-hand information helped fathers to feel more in control and part of the ‘team’ around their child as opposed to an ‘observer’ (Gower et al., 2017). While the rise of remote and flexible working since the pandemic has helped some to attend appointments, this isn’t available to everyone, which may contribute an ‘uneven playing field’, where some fathers can be more involved, and others are left feeling side-lined.
When barriers to accessing appointments are successfully navigated, healthcare settings themselves can present further challenges. Fathers have reported feeling like secondary figures in their child’s care, feeling overlooked by professionals or treated as less informed than mothers (Postavaru, Swaby & Swaby, 2021). A systematic review highlights the importance of actively including male caregivers in conversations and decision making around their unwell child, helping them to cope with the diagnosis and feel more central to the care of their child (Fisher, Fraser, & Taylor, 2023). It is also important their emotional experiences are acknowledged, and their expertise of their own child is valued.
How healthcare settings can help
Individual experiences of male caregivers’ experiences of the healthcare system vary widely and both positive and negative experiences of this are represented in the literature. Both offer some helpful insights into the practical ways that healthcare settings can better support male caregivers:
-Assuming that fathers are equally involved in their child’s care and that they are positioned as central figures in their child’s life and care, not just as supporters.
-Welcoming fathers to appointments and into conversations about treatment.
-Offering emotional support that recognises men’s experiences.
-Creating opportunities for peer support tailored to male caregivers.
-Making the healthcare environment inclusive: using pictures of fathers and children on leaflets and artwork as well as mothers and considering practical factors such as provision of changing tables in gender neutral bathrooms.
This week, and every week, we want to recognise the vital contribution of the male caregivers of children and young people we work with. There are barriers shaped by societal and cultural norms of masculinity which continue to exist in healthcare, and we want to continue to ensure men feel valued, supported and included.
A piece written by Dr Emily Townsend, our Tom’s Trust clinical psychologist at Oxford Children’s Hospital.
Get support today
If you have been affected by the topics in this article there is support available. If you have access to one, please reach out to your Tom’s Trust clinical psychologist for support. If your life is in immediate danger, please do call 999.
You can also reach out to:
Movember – a charity changing the face of men’s health.
Campaign against living miserably – the suicide prevention charity.
Samaritans – who have their 24/7 support line – call 116 123 for free.
References:
Davies, J., O’Connor, M., Halkett, G. K., Kelada, L., & Gottardo, N. G. (2023). Fathers’ experiences of childhood cancer: A phenomenological qualitative study. Journal of Family Nursing, 29(2), 155-165.
Fisher, V., Fraser, L., & Taylor, J. (2023). Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis. BMJ Supportive & Palliative Care, 13(1), 15-26.
Postavaru, G. I., Swaby, H., & Swaby, R. (2021). A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness. Palliative Medicine, 35(2), 261-279.
Gower, C., Higgins, A., Doherty, N., & McCormack, D. (2017). Understanding the experiences of fathers of children with congenital heart disease: An interpretative phenomenological analysis. Journal of health psychology, 22(11), 1447-1457.