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

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

Learning outcomes Knowledge Understanding Share experience Opportunity for reflection

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

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

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

Factors affecting sexuality in cancer

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

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

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

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

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

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

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

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

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

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)

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

Maintaining psychological health Biopsychosocial perspective Observation Communication Building rapport

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

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

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

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

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?”

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?”

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

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