1. Psychosexual Care for Women with Gynaecological Cancers Funded by Cancer Australia Workshop 1:Multi Scenario

3. 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.

4. 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

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

6. 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

7. 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]

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

9. Activity: Factors influencing an Individual’s Sexuality Identify clinical situations where you’ve cared for an individual from a different cultural group to your own. –Reflect on in ways in which culture may have influenced the meaning of sexuality to them –In what ways is this similar and/or different to your own view of sexuality

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. Identifying Sexual Dysfunction DSM-IV identifies the following male and female sexual and gender identity disorders, which can have organic or psychogenic causes: –sexual desire disorders –sexual arousal disorders –orgasmic disorders –sexual pain disorders –gender identity disorder –sexual dysfunction due to a medical condition –sexual dysfunction NOS (not otherwise specified)

13. 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.

14. 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

15. Case Study: Jane 58 year old post-menopausal woman, married to Dave for 6 years Second marriage for both Recent TAHBSO and PLND for stage 2 endometrial cancer Adjuvant vault brachytherapy Jane has a consultation with the Radiation Oncology Nurse about her recovery from treatment.......

16. Case Study: Jane Watch the video and answer the following question: What are the possible psychosexual effects associated with Jane’s cancer and cancer treatment? Jane’s Story part one

17. Jane’s story part 2

18. Case study: Susan 37 year old woman married to Pete, 2 school-aged kids Teacher, working part-time Husband has demanding management job, long hours, frequent trips away Recurrent epithelial ovarian cancer Currently mid-way through chemotherapy with Carboplatin and Caelyx Parents-in-law staying in family home to help with kids

19. Case study: Susan Susan’s story part 1

20. Case Study: Susan During chemotherapy treatment Susan discloses to the nurse that she is concerned about the impact of the diagnosis and treatment on her marital relationship She is referred to the Clinical Psychologist........ Susan’s story part 2

21. Case Study: Joan 65 year old woman married to George, aged 73 Presented to Emergency Department with symptoms of bowel obstruction Underwent emergency laparotomy. Findings: stage 1c ovarian cancer, adherent to bowel resulting in formation of colostomy. Will require adjuvant chemotherapy Joan’s story part 1

22. Case Study: Joan Stomal therapist discusses impact of colostomy on body image and sexual function Joan discloses that George is diabetic, with erectile dysfunction. She is referred to the Social Worker....... Joan’s story part 2

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

24. 1. Prepare for discussions Recognise the difficulty of initiating discussion about sexuality. Acknowledge how hard it is to talk about sensitive matters and reinforce that articulating the problems is the first step towards resolving them. 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.

25. 2. Time your discussion Psychosexual assessment is not a one-off event. If not identified at the initial assessment, raise it later. Sexual difficulties may arise at different points in the recovery process. Women vary in their responses. Women need to develop rapport and trust with health care professionals before discussing sensitive matters. The timeframe for developing this trust is variable. Ensuring that sexuality is on a checklist of questions gives women permission to discuss concerns.

26. 3. Use good communication skills Find words and phrases that sound authentic and 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. Use bridging statements and then move from general to specific questions to facilitate discussion about sexuality.

27. 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?”

28. 4. Use appropriate language Don’t make assumptions about the person’s level of knowledge and understanding. Check their 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.

29. 5. Normalise and validate Sexuality concerns need to be normalised. Questions about sexual function should be as routinely asked as questions about pain, bladder and bowel function and all other treatment side-effects. Acknowledge verbally to the woman that sexuality is a sensitive and private matter that may be difficult to discuss. Seek permission from the woman to raise these matters and normalise the incidence of post-treatment sexuality changes.

30. 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?”

31. 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.

32. 7. Determine preferences for involving partners in the discussion Discuss involvement of the partner, and with whom ongoing sexual assessment and intervention will be arranged. 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.

33. Case Study: Anna Anna is a 48 year old woman, born in a non-English speaking country. Migrated to Australia 25 years ago with husband, Frank. Has two grown up children still living at home. Recent radical hysterectomy and PLND for stage 1a2 cervix cancer. No adjuvant therapy required Seen by Clinical Psychologist for routine psychosexual assessment.........

34. Case Study: Anna Anna identifies multiple concerns: about her diagnosis about her relationship with Frank about her recovery from treatment Identify what these concerns may be Anna’s story part 1

35. Case Study: Norma Norma is aged 78 and has been widowed for 15 years She lives alone and is independent in ADL’s; she enjoys a close relationship with her 4 children and their families Active in her community; church, bowls, senior citizen’s Underwent wide local excision and bilateral groin node dissection for a stage 1 SCC of vulva. No adjuvant therapy required. Norma’s story part 1

36. Case Study: Norma Seen by Social Worker for routine psychosexual assessment......... 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

37. Undertaking a Psychosexual Assessment

38. Comprehensive assessment of psychosexual concerns needs to include an understanding of all intimate behaviours and practices for giving and receiving sexual pleasure/satisfaction. Sexuality is multidimensional, encompassing concepts of body image, self-esteem, intimacy, emotional adjustment, interpersonal communication and a diverse range of sexual behaviours.

39. Ex-PLISSIT Model for Assessment Permission: Give permission for the patient 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?”

40. 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?”

41. 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?”

42. Ex-PLISSIT Model for Assessment Intensive Therapy: Identify further support for the issues you have discussed, and refer them 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?”

43. Interventions to Manage Specific Psychosexual Sequelae

45. 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

46. Managing vaginal dryness The most effective solution for vaginal dryness is to use a product that adds moisture to the vaginal tissue Evidence suggests vaginal moisturisers and lubricants can increase vaginal moisture, vaginal fluid volume, vaginal elasticity and a return to premenopausal pH. There are 3 types of products for improving vaginal moisture Vaginal moisturisers Vaginal lubricants Vaginal oestrogens General suggestions include using unperfumed soaps and wearing cotton underwear

47. Sexuality in Palliative Care (Lemieux et al 2004) Qualitative study to explore what ‘sexuality’ meant to 10 palliative patients and how their illness had affected their sexuality Emotional connection to others was integral component of sexuality and took precedence over physical expressions of sexuality Sexuality continues to be important at the end of life, even in the last weeks and days Lack of privacy, shared rooms, staff intrusion and single beds were considered barriers All felt sexuality should be addressed as an integral component of their care – only raised with one patient

48. Enhancing sexual intimacy at end of life Give couples private time Remove extraneous equipment & make environment less clinical Reassure couple that kissing, stroking, massaging and embracing won’t cause physical harm and may lead to relaxation and decreased pain Fatigue can decrease a person’s ability to maintain personal grooming Mouth care is paramount Maintaining personal dignity is essential when providing intimate care Ensure symptoms are well managed Positioning

49. Case Study: Susan Susan had surgery and adjuvant chemotherapy for stage 3 ovarian cancer diagnosed 3 years ago. She has had multiple recurrences and has now been referred to the community palliative care nursing service.....

50. Case Study: Reintroducing Susan Susan had surgery and adjuvant chemotherapy for stage 3 ovarian cancer diagnosed 3 years ago. Susan has had multiple recurrences and has now been referred to the community palliative care nursing service..... Susan’s story part 4

51. Case Study: Reintroducing Susan Susan’s story part 5

52. 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

53. Find palliative care in the PSGC resource…. Enhancing sexual intimacy at end of life Go to Module 6 (section 6.4.1) for ‘couples in palliative care’ Women with special needs Go to module 2 (section 2.1.6) for ‘understanding the experience’ of palliative care advanced disease Overcoming barriers Go to module 3 (section 3.5.2) for enquiring and responding in the palliative care phase

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

56. 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