Leading and promoting sexual health for men living with prostate cancer and their partners
Prostate cancer and its treatments are associated with high levels of sexual health challenges, in particular, erectile dysfunction and reduced sexual desire. Such problems are life changing as they are almost certain to lead to anxiety, low self-esteem and reduced quality of life for men. Relationships between men and their partners are also affected.
Through my research programme, which I lead at Ulster University, I am aware of the limited psychosexual services available for men living with prostate cancer who reside in Northern Ireland and how this lack of support has negatively impacted on the men’s quality of life. Also, I have gained insight into the ‘uncomfortableness’ and lack of preparation many health care professionals identified when supporting men with their sexual health post prostate cancer. Through this Florence Nightingale Travel Award, I got the opportunity to identify and visit world leading psychosexual services in both the USA and the UK.
The visits to the various sites demonstrated both the complexities and commonalities of sexual health challenges for men following treatment for prostate cancer. Within my visit to University of Michigan, I was able to experience world leading services and research. The visit to Prostate Cancer UK provided me with an overview of service development initiatives within the UK and how this charity supports men, partners and healthcare professionals through information, education and support. Spending time at the Royal Marsden Hospital, London allowed me to witness a high quality service where evidence based services are firmly established. Finally, my visits to Ninewells’ Hospital, Dundee and University of Glasgow demonstrated the challenges many local health boards experience in attempting to provide support to men and reflecting fragmented psychosexual services currently being delivered in Northern Ireland. Throughout the visits I became increasingly aware of the role and potential of on-line support as a possible delivery mode for future interventions. There is a need for the development of clinical and training interventions that will support health professionals in their response to the increasing number of men and couples with sexual rehabilitation.
From the learning gained through the visits, three resources have been planned which will support health professionals (HPs) to overcome many of the problems and provide men with the necessary information and strategies to empower them to deal with their psychosexual issues. These interventions will have the flexibility to address individual needs (person-centred, including sexual orientation and cultural diversity). They will ideally begin prior to, and continue, after active treatment.
I propose to:
1) develop an online training module, (foundation level) for HPs to acquire the skills and knowledge to offer appropriate care to address the psycho-sexual needs of men and their partners.
2) develop an ‘Engagement, Assessment & Signposting Instrument (EASI) that can potentially change the way HPs currently practice. This instrument, if successfully implemented, can provide the structure, content and guidance for HPs to routinely and consistently engage with the men and together, in partnership, start to address the psychosexual issues that men with prostate cancer and their partners face.
3) explore the feasibility of adapting (for a UK population) the USA Web-based Sexual Recovery Programme (a web-based resource which men and their partners can access in order to understand and manage the psychosexual problems they may experience).
I developed a research proposal and submitted it to The Movember Foundation (Men’s health charity) to fund a three year research programme: ‘Developing and testing support resources to maximise sexual wellbeing for men following a diagnosis of prostate cancer and their partners’. This proposal was successful and will be starting in January 2017.
This Florence Nightingale Travel Fellowship enabled me to meet with and work alongside experts in the field of sexual health, both in the USA and the UK. Through these visits I enhanced my strategic leadership, knowledge and skills in the area of sexual health. This learning has informed the development of psychosexual interventions which will be developed and evaluated. Meaningful peer relationships were formed and future research and clinical collaborations were planned.
Reflections
The Florence Nightingale Travel Scholarship provided me with an ideal opportunity to develop my knowledge, skills and expertise (from a world leading base) within the area of sexual care of men living with prostate cancer. My visits have aided with the building of a sound knowledge base and enabled me to make meaningful links with clinical, educational and research experts in sexual health. I was able learn from expert service and also become aware of the similar challenges many of my colleague’s experience. The psychosexual care for men with prostate cancer is fragmented and varied throughout both the USA and the UK.
I also can envisage the knowledge and skills that I acquired through this travel grant will be utilised within other clinical areas such as people with chronic illness or older people.
Recommendations
Currently, the majority of men with prostate cancer and their partners do not have access to sexual health services. If successfully implemented, the three support resources (detailed above) have a real potential to bring about a major change in the way HPs address the psychosexual needs of men following a diagnosis of prostate cancer. Additionally, the adapted USA Sexual Recovery Programme (for a UK population) will provide the men and their partners access to much needed information and strategies to empower them to manage and address their sexual wellbeing needs and concerns.
These support resources can be adapted and applied (scalable) to other, similar, settings, locally, nationally and globally. It is expected that they will not greatly increase the time that health professional spend with patients but result in a better and more efficient way to meet their patients’ needs. The cost to the NHS is likely to be minimal. Therefore, it is anticipated that this enhanced service will be economically sustainable.
Conclusion
The literature shows that sexual health is an area of considerable distress for men with prostate cancer and their partners. It is a symptom that has specific complexities such as: reluctance of men to share intimate sexual activity details with anyone (HPs, partners, peers) due to personal embarrassment and cultural norms. HPs have limited expertise in providing psychosexual support and in some cases are reluctant to do so.
The visits to the various sites demonstrated both the complexities and commonalities of sexual health challenges for men following treatment for prostate cancer. Within my visit to UoM, I was able to experience world leading services and research. Prostate Cancer UK visit provided me with an overview of service development initiatives within the UK and how this charity supports men, partners and healthcare professionals through information, education and support. The visits to the Royal Marsden Hospital demonstrated a quality service where evidence based services were established. Finally, my visits to Dundee and Glasgow demonstrated the challenges many local health boards experience, reflecting fragmented services currently being delivered in Northern Ireland. Throughout the visits I became increasingly aware of the role and potential of on-line support as a possible delivery mode for future interventions.
This Florence Nightingale Travel Fellowship enabled me to meet with and work alongside experts in the field of sexual health, both in the USA and the UK. Through these visits I enhanced my strategic leadership, knowledge and skills in the area of sexual health. This learning has informed the development of psychosexual interventions which will be developed and evaluated. Meaningful peer relationships were formed and future research and clinical collaborations was planned.