Transcript Slide 1

An interactive training module for health professionals:
Addressing the psychosexual care
of women affected by gynaecological cancers
Workshop 2: Applying Principles for Psychosexual Care:
Multi scenario focus
P. Yates, K. Nattress, K. Hobbs, I. Juraskova, K. Sundquist, L. Carnew.
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.
Module development process
Phase 1
Scoping
- Literature review
- Web based review
Phase 2
Development
Phase 3
Piloting
- Piloting within test
- Framework
sites ensures
- Module outlines
usability of materials
- Case study and
module development
- Review of materials by
health professionals
- Web and content
editors ensure a
succinct and usable
structure
Phase 4
Implementing
- Implementation of the
final resource after
addressing pilot
feedback
Project team and project working group
guide development of the modules
The Project Team, a group of specialists developing the modules include:
Patsy Yates
Kath Nattress
Ilona Juraskova
Kim Hobbs
Palliative care
research and
education
Registered nurse,
and post-graduate
educator
Lecturer in Health
Psychology at The
University of Sydney,
and a clinical
psychologist
Social Worker,
Westmead Hospital,
Department of
Gynaecological
Oncology.
Kendra Sundquist
Educator, expertise
in sexual and
reproductive health,
sexuality, and
psychosocial care in
cancer
The Project Working Group provides feedback and comment on developed resources at each stage of
the process.
Phase 1: Scoping Method
• All studies which explored, described and/or explained
the psychosexual issues experienced by women affected
by GC and their partners were included.
• The search strategy was limited to the years 1999 to mid
October 2010.
• Databases searched included: CINAHL, PubMed,
PsycINFO, and Medline
Phase 1: Scoping Results
The literature searches identified 116 papers addressing:
• psychosexual sequelae,
• supportive care and quality of life
• health professional practices (including interventions)
These topics were analysed to:
• identify competencies relevant to health professionals in
various practice settings
• guide the development of the framework and educational
resource
Phase 2: Developing the framework
Caring for women affected by gynaecological cancers
All women with
gynaecological
cancer
Some women
with
gynaecological
cancer
A few women
with
gynaecological
cancer
Universal
Appropriate for all health professionals who interact with
women affected by gynaecological cancers.
Universal
Specialist
Extended
Extended
Specialist
Universal
Phase 2: Developing the framework
Caring for women affected by gynaecological cancers
All women with
gynaecological
cancer
Some women
with
gynaecological
cancer
A few women
with
gynaecological
cancer
Extended
Appropriate for health professionals who are
involved with the treatment and care of women
affected by gynaecological cancers.
Universal
Specialist
Extended
Extended
Specialist
Universal
Phase 2: Developing the framework
Caring for women affected by gynaecological cancers
All women with
gynaecological
cancer
Some women
with
gynaecological
cancer
A few women
with
gynaecological
cancer
Universal
Specialist
Extended
Extended
Specialist
Universal
Specialist
Discussion of topics which will aid health professionals’ care for women with gynaecological cancer
who are exhibiting severe distress. Due to the highly specialised and often sensitive nature of required
care at this level, identification of cases and appropriate referral techniques are required, as well as
strategies to resolve problems.
Reviewing modules 1,2 &3; successful completion of
modules 4,5& 6 at an in depth level, accessing
additional readings, activities, & supporting
resources will develop specialist capabilities,
confidence and skill, including identification of cases
and appropriate referral techniques
Reviewing modules 1, 2 and 3 and
successful completion of modules 4, 5 and
6 will achieve an extended level of
capability, knowledge, confidence and skill.
Successful completion of
modules 1, 2 and 3 will
provide a broad level of
capabilities and knowledge.
Phase 2: Developing the modules
1.
2.
3.
4.
5.
6.
A total of six modules have been developed
to fit within the framework.
Understanding sexuality
Understanding the experience of the psychosexual effect of a
gynaecological cancer
Enquiring and responding to the psychosexual sequalae of
gynaecological cancers
Understanding psychosexual sequalae: pathophysiological,
psychosocial and cultural aspects
Undertaking a comprehensive sexual health assessment
Evidence based approaches to the treatment of
psychosexual sequelae of gynaecological cancers
Each module comprises…
Multiple Choice Q’s
Key Concepts
Thinking Points
Case Studies
Short Answer Q’s
Phase 3: Pilot testing
• Many health professionals expressed the need for a
resource to guide/improve their ability to deal with
psychosexual issues in gynaecological cancer
• Health professionals reported improved confidence and
knowledge following the workshop
• The range of issues addressed in the modules, coupled
with case studies and learning activities, provided an
interactive environment beneficial for learning
Phase 4: Implementation
www.cancerlearning.gov.au
What are we doing at the moment?
Principles and Practices for
Psychosexual Care of Women
with Gynaecological Cancers
Funded by Cancer Australia
Workshop 2: Applying principles of care / Multi scenario focus
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
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
Activity: What is sexuality?
• How do you define sexuality?
• Who or what has shaped your definition of
sexuality?
What is sexuality?
• The term 'sexuality' has any number of
meanings.
– It be linked with loving relationships and
intimacy
– It can be associated with physical appearance
and interpersonal behaviours
– It can be associated with sexual activity
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]
Factors influencing an Individual’s Sexuality
• Sexuality can be influenced by a range of social,
cultural, psychological and biological factors
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 ways in which culture may have
influenced the meaning of sexuality for them
– In what ways is this similar and/or different to
your own view of sexuality?
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
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
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)
Gynaecological cancer & 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
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 lymphoedema
• Psychosocial effects, for example concerns about body
image, fear of pain, and altered roles and relationships
Norma’s story part 1
Case Study: Norma
• What is the impact of Norma’s disease and treatment on
her sexuality and body image
• What potential barriers are there to communicating with
Norma about her sexuality?
Case Study: Norma
Watch the video and consider.....
What communication skills does the social worker use to
facilitate discussion with Norma about her sexuality?
Norma’s story part 2
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.......
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
Jane’s story part 2
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
• During chemotherapy treatment Susan discloses to the
nurse that she is concerned about the impact of the
diagnosis and treatment on her marital relationship…
Case Study: Susan
Watch the video and answer the following questions:
• What are the possible psychosexual effects
associated with Susan’s cancer and cancer treatment?
• How might this impact on her roles & relationships?
Susan’s story part 1
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: ovarian
cancer, adherent to bowel resulting in formation of
colostomy. Will require adjuvant chemotherapy
Case Study: Joan
Watch the video and answer the following question:
What are the possible psychosexual effects associated
with Joan’s cancer and cancer treatment?
Joan’s story part 1
Case Study: Joan
The Stoma therapist discusses impact of colostomy on
body image and sexual function
Joan’s story part 2
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
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
BREAK
Principles for Communicating with People
affected by Cancer about Sexuality
Case Study: Anna
• Watch the video and consider which communication
skills the Health Professional uses to facilitate discussion
with Anna about her sexuality?
Anna’s story part 1
Anna’s story part 2
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
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.
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.
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?”
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
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.
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?”
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.
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
Undertaking a Psychosexual
Assessment
Undertaking a Psychosexual Assessment
• 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.
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?”
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?”
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?”
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?”
Re-introducing Joan
• Joan and George are referred to the social worker
• Watch the video and consider: What communication
skills are utilised to undertake a discussion about
psychosexual issues?
Joan’s story part 3
Interventions to Manage Specific
Psychosexual Sequelae
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
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
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
Role Play
• In groups of three consider the following scenarios
• Each scenario requires a patient, a health professional and
an observer
• Rotate the roles for each of the three scenarios
• After all three scenarios have been considered be able to
provide brief feedback to the larger group
Case Study: Maria
Maria presents to her GP with intermenstrual bleeding. The
GP discusses with Maria why she has never had a pap test
Role play by participants
• In groups of three, act out a subsequent scenario with a health
professional; the patient and the observer
• Act out the role play in your groups and then come back together for
discussion and feedback only (you are not being asked to do role
play and act out in front of the whole group)
• Bring your observations and discuss how you felt/ what you
discovered from the scenario
Maria’s story part 2
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.
• Seen by Social Worker for routine psychosocial
assessment....
Case Study: Norma
Watch the video and consider.....
What potential barriers are there to communicating
with Norma about her sexuality?
Norma’s story part 1
Role play by participants
• In groups of three, act out a subsequent scenario with a health
professional; the patient and the observer
• Act out the role play in your groups and then come back together for
discussion and feedback only (you are not being asked to do role
play and act out in front of the whole group)
• Bring your observations and discuss how you felt/ what you
discovered from the scenario
Case Study: Norma
Watch the video and consider.....
What communication skills does the social worker use to
facilitate discussion with Norma about her sexuality?
Norma’s story part 2
Case Study: Reintroducing Susan
• Susan has had multiple recurrences and has now been
referred to the community palliative care nursing
service.....
Susan’s story part 4
Role play by participants
• In groups of three, act out a subsequent scenario with a health
professional; the patient and the observer
• Act out the role play in your groups and then come back together for
discussion and feedback only (you are not being asked to do role
play and act out in front of the whole group)
• Bring your observations and discuss how you felt/ what you
discovered from the scenario
Case Study: Reintroducing Susan
Susan’s story part 5
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
Find these topics on the PSGC 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
• Case based resources – Jane; Joan; Anna; Norma; Susan – real
life scenarios
Go to ‘video’ on the navigation bar of the home page
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
Search function
• Use the search function for quick access to relevant topics
• Located top right hand corner all pages of the resource
Acknowledgements
Funded by:
Disciplines represented in Project
Working Group & module review :
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)
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