Psychosexual issues in advanced cancer

1. Psychosexual issues in advanced cancer Dr Kate Bullen Psychology Department Aberystwyth University Wales, UK

2. Scope • Define the issues • Identify the challenges • Examine patient needs • Consider specific examples: gynaecological and prostate cancers • Explore barriers to communication • Suggest ways of improving clinical practice

3. Learning outcomes • Knowledge • Understanding • Share experience • Opportunity for reflection

4. Defining the issues Cancer/life threatening illnesses impact on all aspects of function

5. Defining the issues • Cancer challenges a sense of “self” – “Who I think I am” • Self concept includes a subjective evaluation relative to: • Body image • Self esteem • Social roles • Reactions of others

6. Defining the issues: psychosexual function • Sexual wellbeing – encompasses sexuality and physical and psychological sexual health matters • Multi-faceted and complex • Interwoven with beliefs, stereotypical thinking, prejudice, assumptions • Social constructions of sexuality influenced by age, gender, cultural beliefs

7. Factors affecting sexuality in cancer

8. Defining the issues: psychosexual function • In acquired/chronic illness psychosexual issues may include: • Low self esteem (loss of control; loss of role) • Inability/reluctance to engage in sexual activity (impaired function; feeling unattractive/unloved; inability to express feelings) • Difficulty with existing relationships, or making new relationships

9. Sexuality in cancer/palliative care context • Variables affecting psychosexual issues • Different issues at different stages of disease trajectory/cancer journey • Dynamic interaction

10. Examining patient needs • Discussing sexual matters difficult for many people • Research supports the importance of the issue (Bullenet al. 2009; Horden & Street 2007; Lemieux et al. 2004). • Patients think sexual function should be considered as part of their care • Will discuss their concerns if given appropriate opportunity • Sexuality expressed in multiple ways – not only about intercourse although may remain important aspect

11. Examining patient needs For many patients/partners sexuality includes: - Connectedness • Intimacy • Belonging • Sharing Being able to maintain sense of being sexual requires: • Dignity • Respect • Opportunity

12. Re-cap • Advanced cancer challenges psychosexual function in, and for, diverse ways and reasons • Not restricted to the physical aspects of function • Complex and challenging aspect of care for practitioners • Considered important aspect of care by patients • Expectation that should be addressed by practitioners • Specific examples illustrate the demands • Possible ways to improve practice

13. Gynaecological Cancers • Lagana et al. (2001) reported themost frequently reported sexual problems include: • Pain • Premature ovarian failure • Changes in vaginal anatomy • Emotional distress • Body image (loss of fertility) • Sexual self-concept • Complex interaction between physical and the psychological leading to potential psychosexual problems

14. Gynaecological Cancers • Rasmusson & Thome (2008) – small scale qualitative study with 11 Swedish women • Reported the most frequently reported sexual problems include: • Women had lack of knowledge about the body • Sought conversations with sexual relevance • Wanted: • Involvement of partners • More in-depth knowledge • Information given by competent/sensitive staff

15. Prostate cancer • Wittman et al. 2009 reported the most frequently reported sexual problems include: • Incontinence • Impotence/erectile dysfunction • Body image (hot flushes; fatigue; bone fragility; weight gain; loss of muscle mass) • Reduced libido • Similarities but distinctive differences to gynaecological cancers • Ties with social construction/stereotype of gender

16. Prostate cancer • Bullen & Chichlowska (in prep) – small scale qualitative study with 8 UK couples (advanced PCa) • Reported the most frequently reported sexual problems include: • Sense of loss & frustration • Body image concerns – weakness; hot flushes • Heightened emotional responses/irritability • Implications for maintenance of intimate relationships and concept of being male/manly • Scoping exercise by UK Prostate Cancer Charity in 2010 identified the importance of psychosexual concerns

17. Barriers to communication Various challenges/barriers to effective communication: • Patient related issues: embarrassment; uncertainty; appropriate language • Environment: physician factors (professionalism; appropriateness; skills; the medical model). Space factors (suitable space for conversation; privacy etc) • Culture: religious/ethnic considerations; societal stereotypes and prejudice (sexual activity and age)

18. Improving clinical practice • Reflexive practice • Overcoming prejudice/preconceived ideas • Development of rapport • Providing opportunities • Development of appropriate skills • Understanding the limits of competence • In the UK the National Institute of Clinical Excellence (2004) recommendations for Palliative Care suggest a graded process from general to specific interventions

21. Maintaining psychological health • Observation • Communication • Building rapport Biopsychosocial perspective

22. Psycho-metric approach How to assess the problem? Clinical skills Listening to patient Providing appropriate venue to allow open discussion Giving permission to speak Acknowledgement of importance of intimacy Non-judgmental attitudes Reflection on own feelings • Questionnaires • Finding the right materials • Various possibilities • Trial and error, or • Systematic review • Advantages and disadvantages

23. Cognitive Behavioural Therapy (CBT) Principles Identification of the concern Generation of strategies Implementation and evaluation

24. Ex-PLISSIT: specific model for addressing psychosexual issues in chronic illness/disability • Originally developed by Annon (1976) • Expanded to include reflection (Taylor & Davis 2007) • Four levels of assessment • Helps healthcare professionals identify their role in assessment/evaluation of individual sexual needs • Based on cognitive behavioural (CBT) principles

25. Extended PLISSIT Model Four levels of intervention Permission (P) Limited Information (LI) Specific Suggestions (SS) Intensive Therapy (IT)

26. Extended PLISSIT Model • Permission giving normalises sexuality at every stage • Not just initially, but throughout the process • Use of open ended questions enable permission giving: “Many people with this condition have concerns about sexuality. Is there is anything you would like to talk about or ask?” “Many people experience impotence as a side effect of this drug. Is that something that you have experienced?”

27. Extended PLISSIT Model • Sexuality is a dynamic concept changing with circumstances • Reviewing and reflection is important for patient and practitioner: “Since we last spoke are there any other things you have thought of” “When we last spoke, you mentioned … and we discussed …. How has it been since then?”

28. Summary • Discussing psychosexual/relationship concerns is challenging - for patients and practitioners • Need to acknowledge own limitations; be responsive to patient verbal and non-verbal communication - expertise is not achieved overnight • Important to reflect within teams and share good practice • Models such as Ex-PLISSIT can help to structure interventions

29. Resources • Comprehensive list of references available via Tove/Kirsten/website • My contact details: Kate Bullen (kab@aber.ac.uk) Thank you. Tak. Diolchynfawr.