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 (Bullen et 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 the most 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 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
Biopsychosocial perspective
Observation
Communication
Building rapport

22. How to assess the problem?
Clinical skills
Psycho-metric approach
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
Thank you. Tak. Diolch yn fawr.