1. Psychosexual Care for Women with Gynaecological Cancers Funded by Cancer Australia Workshop 1: Interventions following treatment (incl. bladder and bowel concerns)

2. Introduction Treatment for a gynaecological cancer (GC) can alter a woman’s behaviours, attitudes and feelings towards sexuality and intimacy. Health professionals require knowledge and skills to minimise the risk of these concerns, and to effectively treat them should they occur. The aim of this project was to develop a psychosexual care framework and educational resource to improve health professionals’ skills and confidence in providing effective psychosexual care.

4. Activity: Dispelling common myths about sexuality Sex causes cancer. Older people aren’t interested in having sex. People with cancer don’t want to have sex. Discussing sex isn’t nice. People who want to know about sex will ask. People who are dying are not interested in sex. Sexuality is only about intercourse.

5. Session objectives Identify dimensions of sexuality Identify the common psychosexual effects of diagnosis and treatment for gynaecological cancer Describe principles for communicating about sexuality Outline a model for undertaking a psychosexual assessment List principles for psychosexual care

6. Activity: What is sexuality? How do you define sexuality? Who or what has shaped your definition of sexuality?

7. What is sexuality? The term 'sexuality' has any number of meanings. –It can be linked with loving relationships and intimacy –It can be associated with physical appearance and interpersonal behaviours –It can be associated with sexual activity

8. What is sexuality? a person's behaviours, desires, and attitudes related to sex and physical intimacy with others National Cancer Institute http://www.cancer.gov/dictionary/?CdrID=476620]

9. Factors influencing an Individual’s Sexuality Sexuality can be influenced by a range of social, cultural, psychological and biological factors

10. Defining sexual health and sexual dysfunction Sexual health is a state of physical, emotional, mental and social well-being relating to sexuality. It's not merely the absence of disease, dysfunction or infirmity. Sexual dysfunction is 'the various ways in which an individual is unable to participate in a sexual relationship … he / she would wish'. World Health Organization

11. How common is sexual dysfunction? Experiencing sexual dysfunction is relatively common in the community A survey of Australian women reported that 70% experienced sexual difficulties (including the inability to orgasm and not feeling like sex) in the year before the survey Richters J, Grulich, A.E., Visser, R.O., Smith, A.M., Rissel, C.E. (2003). Australian and New Zealand Journal of Public Health Volume 27, Issue 2, pp. 164-170

12. Gynaecological cancer and sexual dysfunction Sexual dysfunction can occur: in the months preceding a definitive diagnosis, due to: –the onset of disease related symptoms including vaginal bleeding and discharge, pain and fatigue during treatments as a result of: –functional and physiological effects of surgery, radiotherapy, chemotherapy or other treatment, –psychological and social effects of a diagnosis and bodily changes following completion of treatment, due to: –longer term physiological, psychological and social sequelae of the disease and treatments.

13. Causes of sexual dysfunction in gynaecological cancer Anatomical changes to the vagina, resulting in vaginal stenosis, or decreased lubrication Hormonal changes, resulting in menopausal symptoms including dry vagina Alterations to reproductive function, resulting in changes to fertility Altered bowel and bladder function, resulting in concerns about incontinence Functional limitations, resulting from treatment related fatigue, or lymphodoema Psychosocial effects, for example concerns about body image, fear of pain, and altered roles and relationships

14. Case study: Norma Watch the video and consider the following questions: –What are the possible psychosexual effects associated with Norma’s cancer and cancer treatment? –What communication skills should be utilised to approach a discussion about sexuality following her diagnosis and treatment –How would you approach a psychosexual assessment? Norma’s Story part 1 Meet Norma (1:20)

15. Principles for Communicating with People affected by Cancer about Sexuality

16. 1. Prepare for discussions Recognise the difficulty of initiating discussion about sexuality. Take a positive stance, reinforce that sexual problems following cancer treatment are normal and expected, but are usually temporary. Comfort in discussing sexuality improves with practice.

17. 2. Time your discussion Sexual difficulties may arise at different points in the recovery process. Women need to develop rapport and trust with health care professionals before discussing sensitive matters. Ensuring that sexuality is on a checklist of questions gives women permission to discuss concerns.

18. 3. Use good communication skills Convey a non-judgmental value orientation. Ask clear, open-ended questions and allow adequate time for the woman to find words to respond. Check with the woman that she understands what you are asking and seek clarification that you understand. Be alert to non-verbal cues of discomfort or distress.

19. 3. Use good communication skills – Some examples “Now that we’ve talked about how you are managing at home after the treatment, I would like to ask some questions about how things are going with your sexual relationship. Is that OK with you?” “I’m really pleased to hear that the treatment side-effects are settling down. I find for most women at this stage another area of concern may be sexual function. Are there any issues there that you would like to discuss?”

20. 4. Use appropriate language Check the couple’s understanding of sexual/reproductive anatomy and function and correct misunderstandings. Use simple language rather than formal anatomical terms. Check with the woman/couple that your terminology is understandable and try to use the terminology of the woman/couple. Diagrams are often helpful.

21. 5. Normalise and validate Seek permission from the woman to raise these matters and normalise the incidence of post-treatment sexuality changes. Questions about sexual function should be as routinely asked as questions about pain, bladder and bowel function and all other treatment side-effects.

22. 5. Normalise and validate: An example “I always ask how things are going with sexual relationships because it’s really very common to have difficulties after treatment. Is that something you would like to talk about?”

23. 6. Sensitively address myths and misconceptions Myths and misconceptions about sexuality are common and may impede resumption of sexual activity, e.g., –Sex causes cancer –Sex will be harmful Validation of concerns and encouragement to communicate with the partner and with health professionals may assist women in dispelling myths.

24. 7. Determine preferences for involving partners in the discussion Conduct initial assessment with the woman alone. Discuss her wishes for involvement of the partner. Not all women will wish to involve their partner in this process, e.g., –If there is a history of violence, infidelity or sexual abuse in the woman’s current or past relationships –If there are cultural or religious taboos around discussing matters of sexuality, the woman may feel more comfortable discussing sexuality issues on her own.

25. Case Study: Norma What potential barriers are there to communicating with Norma about her sexuality? What communication skills does the social worker use to facilitate discussion with Norma about her sexuality? Norma’s Story part 2 Overcoming Barriers (4:18)

26. Undertaking a Psychosexual Assessment

27. Comprehensive assessment of psychosexual concerns needs to include an understanding of all intimate behaviours and practices for giving and receiving sexual pleasure/satisfaction; not just intercourse. Sexuality is multidimensional, encompassing concepts of body image, self-esteem, intimacy, emotional adjustment, interpersonal communication and a diverse range of sexual behaviours.

28. Ex-PLISSIT Model for assessment Permission: Give permission for the woman to have sexual feelings / relationships and normalise this. –“Many women diagnosed with cancer find that it has an impact on their relationships and their interest in sex. Is it ok if we discuss this issue?”

29. Ex-PLISSIT Model for assessment Limited Information: Provide limited information to identify the effect of the cancer / treatment on sexuality. Correct any misconceptions, dispel myths, provide accurate information. –“Treatment side effects often have a big impact on sexual activities. You mentioned that you started having intercourse again but it is still painful after treatment. How is this pain affecting your sex life?”

30. Ex-PLISSIT Model for assessment Specific Suggestions: Make specific suggestions to manage the sexual side effects they have identified. –“There are many ways that couples can adapt their sex lives to adjust to the effect of the cancer and treatment. To address the issue of pain, you could consider which activities you can still enjoy when feeling sore from treatment, and focus on these instead of intercourse until you have recovered fully. How would you and your partner feel about focusing on other types of sexual activity?”

31. Ex-PLISSIT Model for assessment Intensive Therapy: A small number of couples will have sexual function issues that require specialist intervention. Identify further supports for the issues you have discussed, and refer couples if appropriate. – “Some women find it helpful to get more support for the issues we’ve discussed. You mentioned that you are feeling pressure to keep your sex life the way it has always been, and it is making you very distressed, but you can’t talk to your partner about it. Would you like to see a counsellor who is experienced in this area?”

32. Interventions to Manage Psychosexual Dysfunction

34. Principles for intervention Normalise the incidence of post-treatment sexuality changes and facilitate positive communication Treat the underlying cause where possible (physical, psychological, social) Minimise effects of anatomical changes, e.g. use of vaginal dilators Provide symptom relief Provide information and advice on alternative methods for showing intimacy, and for giving and receiving sexual pleasure; involve the partner if appropriate Refer to specialised services where required

36. Case study: Norma Having considered the impact of vulval cancer and its management on Norma, what interventions would you consider to improve her psychosexual function? Norma’s Story part 3 Responding to psychosexual concerns (3:53)

37. Managing bladder and bowel dysfunction Promoting urinary control Empty the bladder just before sex Try having sex in the shower or bath where any urine loss will be unnoticed Try having intercourse in a side-lying or woman-on-top position to help control the depth of thrusting that can stimulate the bladder If vaginal penetration causes bladder spasm or triggers incontinence ‘outercourse’ may be preferred Refer to a physiotherapist or continence specialist if problems are persistent

38. Managing bladder and bowel dysfunction Stoma care – preventing leakage or inflation Avoid food and drinks that cause gas or odour When engaging in sexual activity: –ensure bag is empty and seal is intact –consider using garments to conceal the stoma –using a belt or cummerbund will help stabilise the appliance –consider using a mini bag or an opaque bag cover –consider using alternative sexual positions to reduce discomfort and anxiety. Sexual difficulties in a woman with a stoma is often associated with concerns about body image. In addition to support and education, consider referral for specialist sexual counseling

39. Find these topics in the PSGC online resource…. What is sexuality? Go to Module 1 and complete the module Principles for communicating with people affected by cancer about sexuality Go to Module 3 (section 3.1) and access the Psychosexual communication principles Ex-PLISSIT Model for Assessment Go to Module 3 (section 3.3.2) and access the assessment tools Managing specific psychosexual sequelae Go to Module 6 for specific treatments

40. Search function Use the search function for quick access to relevant topics Located top right hand corner all pages of the resource

42. Acknowledgements Funded by: Cancer Australia Project team: Professor Patsy Yates Kath Nattress Kim Hobbs Ilona Juraskova Kendra Sundquist Project Officer: Lynda Carnew Project Working Group: Dr Margaret Davy (Chairperson) Disciplines represented in Project Working Group & module review : Consumer Gynaecological Oncologist General Practitioner Radiation Oncologist Gynaecological Clinical Nurse Specialist Gynaecological Clinical Nurse Consultant Psychologist Research Psychologist Social Worker Education Services Manager Patient Programs Officer Sexual Health Educator www.cancerlearning.gov.au