Exploring the experiences and psychosocial support needs of informal carers of men with breast cancer: a qualitative study

Abstract

Abstract Purpose The provision of practical and emotional support for men who have been diagnosed with breast cancer in the UK falls primarily on their partners, close family members or friends. However, informal carers’ experiences are omitted from the research literature. Therefore, the present study aimed to explore the care-giving experiences of informal carers (ICs) of men with breast cancer in the UK and identify psychosocial support needs and preferences. Methods Semi-structured interviews, conducted on the telephone or via online video calls, explored ICs’ experiences of providing support, the psychosocial issues they faced and the impact of the illness on themselves and their relationship with the patient. They were also asked about any support previously offered to them, in addition to their support preferences. Twelve ICs participated (11 females, 1 male), and 9 were spouses. Interview transcripts were analysed with reflexive thematic analysis using NVIVO software. Results Four key themes were identified: “The impact of caring”, “Lack of awareness”, “Isolated and alone” and “Making a difference”. Conclusions The physical, emotional, financial and social impact of providing emotional and practical care and support for a man diagnosed with breast cancer can be considerable. ICs may experience significant levels of distress and often feel isolated. Greater awareness and more research is needed to better understand the psychosocial impact and support needs for ICs of men with breast cancer. There is an evident necessity to address their information needs and offer sources of support throughout the cancer journey.