Monday 10th September 2012
Macmillan Clinical Psychologist Darja Brandenburg gives advice and tips to help professionals talk about sexuality with their patients.
Sexuality is one of our most sensitive and private topics – one that can make us feel very vulnerable, afraid of being judged or hurt, whether we are the person with a sexual concern or the professional asked to raise the issue.
Research shows that the majority of people with cancer would like more information about how cancer and its treatments can affect sexual function. How many of us can go through our list of patients and agree that we would expect the majority of them to want more information around sexuality? What percentage of your own case load would you guess would like more information?
In the vast majority of situations our guesses will be wrong. Irrespective of age, health, marital status or cultural background, humans are sexual beings throughout life and may require information to help them express their sexuality under changing circumstances.
Even though the majority of people with cancer would like more information about sexual side effects and ways of overcoming them, many say they wouldn’t feel comfortable being the first to bring up the subject. The reasons for this are manifold. Patients say they’re not sure which professional they should speak or what words to use when describing their difficulties. People with cancer also say they fear offending the professional. They are concerned that they may be judged for worrying about something as ‘insignificant’ as sexuality at their age or after having come through a life-threatening illness. They think they may be seen as ungrateful after all the team has done to save their lives.
This state of affairs would seem to put the responsibility of raising the topic of sexual problems firmly and squarely with healthcare providers. We have a responsibility to raise sexual concerns alongside any other known difficulties when discussing the side effects of cancer treatments. Despite the clear rationale that allows us to discuss bowel function and many other highly private bodily functions in the required detail, most professionals still struggle to make the discussion of sexual concerns a routine part of their conversations with patients.
A recent Macmillan report found that only 30% of people with cancer recall a healthcare professional ever having raised the topic during their cancer experience. The main reasons given by professionals are:
- a lack of privacy
- not being sure if this is part of our role
- not knowing what we are supposed to do or say
- not being sure if anything can be done
- lack of training, confidence and support
- worry about offending patients and making of assumptions
- a lack of local facilities to refer on to when problems exceed our expertise.
What we can do
The good news is that we don’t all have to become sex therapists to help our patients move on. While we each have a role in ensuring that any treatment side effects experienced are identified and advice about management is given, honest self-reflection will help us decide how far our own involvement will go and encourage us to map out the professional networks around us.
Annon provides a helpful model to conceptualise four different levels of psychosexual support, ranging from giving permission to raise sexual concerns to the final stage of intensive therapy required for a small number of complex cases.
The majority of patients (70% or more) can be helped by just one or two short sessions giving information and specific suggestions.
Providing a supportive environment
It can be helpful to have posters or patient information materials on display and to include appropriate material in patient information packs. It’s very important to mention the possibility of sexual difficulties when discussing the side effects of proposed treatments and gaining informed consent.
At this early point, the majority of patients won’t be interested in an in-depth discussion of the topic, but having heard sexuality mentioned, the patient is more likely to bring up any concerns as they arise during later stages. It’s helpful to check in with patients occasionally and gently mention the topic again, for example, when enquiring about side effects or doing a holistic needs assessment.
Building local support networks
At the present time, cancer-specific level four sexual rehabilitation (intensive therapy) services aren’t available in the majority of locations. Where this is the case, it’s important to try to develop a local support structure. This may involve exploring existing cancer services to see who is interested in helping patients with sexual difficulties; what good work is already taking place; and how people could work more closely together across disciplines and cancer types.
It’s also important to get to know the more generic services available to help people with sexual problems outside of cancer services, for example, local psychology, urology, gynaecology and sexual health departments. Most locations will also have a Relate centre within reasonable distance.
A small number of local cancer services have an agreement with Relate to fund a specialist service for people with cancer. Otherwise patients will usually be able to contact Relate
on a private basis where they may incur a reasonable fee. Due to the multi-faceted nature of sexuality and sexual problems, it’s important to try to get expertise from a range of specialisms when setting up or developing any professional network.
You may also be interested in joining a relatively new online discussion forum for sexual rehabilitation after cancer at NHS Networks.
1. Macmillan Cancer Support. Super survey of cancer patients. 2008.
We have more information about sexuality and cancer.