FEMALE SEXUAL HEALTH AFTER A CANCER DIAGNOSIS

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1 Art & science The holistic acute synthesis care of art and science is lived by the nurse in the nursing act JOSEPHINE G PATERSON FEMALE SEXUAL HEALTH AFTER A CANCER DIAGNOSIS Lynn Holmes and colleagues offer a competency framework to help nurses address psychosexual problems in patients with gynaecological cancers Correspondence lynn.holmes@hey.nhs.uk Lynn Holmes is gynae-oncology clinical nurse specialist (CNS), Castle Hill Hospital, Hull and East Yorkshire Hospitals NHS Trust Tracie Miles is gynae-oncology CNS, Royal United Hospitals Bath NHS Foundation Trust Isabel White is clinical research fellow in psychosexual practice, Royal Marsden NHS Foundation Trust Date of submission March Date of acceptance June Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines journals.rcni.com/r/ cnp-author-guidelines Abstract Sexual problems are common after any cancer treatment, but particularly for gynaecological cancers. Sexuality is often a missed component of holistic assessment and continuing care after a cancer diagnosis. Sexual difficulties can have a negative effect on quality of life and patients are often not prepared for possible changes, nor do they receive appropriate support to manage problems. One reason for this is nurses or other healthcare professionals lack of confidence and knowledge to approach the subject. The National Forum of Gynaecological Oncology Nurses recognised the need to develop a competency framework to support MACMILLAN CANCER Support identified that there are more than two million people living with, or beyond, cancer in the UK. This number is increasing by 3.2% every year and, if this rate continues, four million people could be living with the disease by 2030 (Maddams et al 2012). A report from the National Cancer Survivorship Initiative (NCSI) (2013) estimated that as many as 500,000 people living with, and beyond, cancer may experience one or more physical or psychosocial consequences of their disease, or its treatment, which will affect their lives on a long-term basis. Nurses are responsible for delivering care that meets the needs of patients and to be competent in delivering that care (Macmillan Cancer Support 2014a, Nursing and Midwifery Council 2015). The recovery package (Macmillan Cancer Support healthcare workers to address the needs of women with psychosexual issues after diagnosis and treatment of gynaecological cancer. This article offers an overview of the competencies and a framework of the knowledge, skills and experience needed to achieve them. Although it is aimed at gynae-oncology nurses, the principles can be transferred to any healthcare professional in any specialty. Keywords Competency framework, consequences of treatment, gynae-oncology, holistic needs assessment, sexuality, survivorship 2014b) offers a structure that is designed to deliver an overall pathway of care for cancer patients; sexual needs should be inherent in that pathway. The specific components relevant to secondary care providers include: A holistic needs assessment completed at diagnosis and end of treatment. An end of treatment summary, including possible treatment toxicities and/or consequences of treatment and an ongoing management plan. The effect of treatments on a woman s psychosexual function is recognised in the literature, although the level of the problem varies significantly with between 1.2% and 88% of women having some difficulty with their sex life as a result of gynaecological cancer, as a transient and a long-term problem (Lancaster 2004, Carter et al 2005, Lindau 16

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3 Art & science acute holistic care 18 et al 2007, Hill et al 2011, Lammerink et al 2012). Although the range is vast, it indicates that cancer of sexual organs will have an effect on sexual function; whether that is a problem or not depends on how the woman experiences it and if she is given the opportunity to discuss it. The reluctance of healthcare professionals to approach the subject of sex in patients with cancer, or for women to bring up the topic, is documented in the literature (Park et al 2007, Hill et al 2011, White et al 2011). Discussing potential and actual consequences of treatment on sexual function has been shown to have a positive effect on how women cope with changes to their sex life (Park et al 2007, Brotto et al 2008, Levin et al 2010, Hill et al 2011). Addressing the barriers that stop this beneficial component of care being addressed can help support nurses and improve patient experience. Background Members of the National Forum of Gynaecological Oncology Nurses (NFGON) repeatedly highlight the need for more support in addressing the sexual needs of women in their care. A psychosexual subgroup was set up to identify what members needed to do to help these women. A brief scoping exercise in approaching sex was conducted to assess the experience of new-to-role clinical nurse specialists compared with those who had been in post for several years. The exercise highlighted the importance of learning tools to develop practice. This work was presented at the European Society of Gynaecological Oncology conference in 2013 with the plan of producing a competency framework for national use. However, due to ever-increasing service demands, sharing the framework did not take place. After the launch of A Competence Framework for Nurses: Caring for Patients Living with and Beyond Cancer (Macmillan Cancer Support 2014a), the authors were spurred on to revisit the existing work and develop it further. They used the levels of practice in the framework and linked them to the levels of intervention in the PLISSIT model (Annon 1976) to suggest stages of competency when addressing the psychosexual needs of women with gynaecological cancer (Table 1). Discussion The competency framework suggests levels at which nurses should be working and how they gain the knowledge and skills to work competently at the appropriate level. The authors acknowledge that there are nurses with varying experience, particularly with evolving nursing roles and skill mix in teams; therefore the levels identified are not prescriptive or linked to level of employment. The competency framework is a tool to be used by nurses and other healthcare professionals to support their learning and developmental needs. Although written with gynae-oncology nurses in mind, it can be used and adapted by any healthcare professional addressing the needs of any patient living with cancer. There are external factors that could influence sexual problems and may be embedded in psychosexual difficulties. These include: Menopause and loss of fertility, which have a physiological and psychological effect on sexual function. Pre-existing sexual difficulties, dual sexual difficulties or relationship problems. Sexual differences and diversity when referring to the woman it is the birth gender we refer to and recognise that patients may present in a different gender and should be treated affirmatively in the gender they present. The authors identified and reviewed existing resources that offer excellent learning material to be used in conjunction with the competency framework (Table 2, page 18). These are: Macmillan LearnZone for generic education toolkits sexual relationships and cancer, and body image and cancer (Macmillan Cancer Support 2015). The National Centre for Gynaecological Cancers in Australia offers six online modules to assist all healthcare professionals to develop the knowledge and skills to support women and their partners experiencing psychosexual concerns after gynaecological cancer. The psychosexual care of women affected by gynaecological cancers was reviewed by the NFGON subgroup, which thought it was an invaluable resource (Cancer Australia 2010). The competency framework complements the guidance published by Macmillan Cancer Support (2014c) on managing consequences of treatment after gynaecological cancer and was peer reviewed by the NCSI team and Jo s Cervical Cancer Trust, who both gave positive feedback. The framework is to be disseminated to members on the NFGON website, inviting and encouraging feedback. It will also be presented at a multidisciplinary survivorship conference on October 15to address and raise awareness of the need for such a framework.

4 Table 1 Stages of competency when addressing the psychosexual needs of women with gynaecological cancer Stage PLISSIT level Intervention Criteria Essential 1. Permission To be able to discuss sexual concerns/ difficulties 2. Limited information Advising on the effect of treatment on sexual function and assisting women to make informed choices about their proposed treatment Acknowledging that sexual issues are an appropriate topic for discussion is the minimum intervention acceptable. This gives the woman permission to have, or not to have, sexual feelings/concerns. To enable this the nurse will: Recognise own limitations and identify personal barriers and blocks to addressing sexual concerns with women Have a foundation knowledge of the possible sexual concerns of women diagnosed with gynaecological cancer Have appropriate communication skills to enable screening for treatment-induced sexual concerns and/or difficulties as part of holistic needs assessment Establish and maintain a safe relationship with the woman to allow them to discuss issues relating to sexuality, sexual function and body image after treatment for gynaecological cancer Continue to convey willingness to discuss sexuality and provide specific factual information to clarify concerns and misconceptions and eliminate myths Have sufficient knowledge of the treatments for gynaecological cancer and their possible effects on sexual functioning to be able to offer limited information Have knowledge and understanding of how to assess and manage specific problems; for example, dilator therapy, vaginal moisturisers and lubrication Identify when higher-level intervention is needed and be aware of local resource to refer to as appropriate Specialist 3. Specific suggestion Involve provision of specific suggestions to continue satisfying sexual activity. Requires sexual history Achievement of essential criteria, plus the nurse will have knowledge and understanding of the following criteria used for specialist practice and service development in own area: Normal sexual function and phases of sexual response from a biopsychosocial perspective The effect of gynaecological cancer on sexual functioning that may cause difficulties The effect of gynaecological cancer treatments; for example, surgery, radiotherapy and chemotherapy on sexual functioning The effect of gynaecological cancer on psychological and emotional wellbeing and sexuality Specialist knowledge and expertise to conduct a specialist sexual health assessment, assess sexual function, analyse information to offer specific suggestions and, if necessary, interventions to address sexual dysfunction Specific suggestions include strategies for enhancing sexual expression and satisfaction: hormone replacement therapy (topical/systemic), sexual position advice, sensate focus, brief cognitive behavioural therapy, mindfulness, couple counselling. The practitioner may offer some of this advice directly and/or be able to offer appropriate referral pathways/access to services in the locality and nationally Specific suggestions take into account the woman s values and attitudes towards sex and, if appropriate, her partner s, and the effectiveness of specific suggestions should be evaluated. Identify when level 4 interventions are required. The difference between levels 1-3 and 4 includes the need for couple counselling, in-depth specialist assessments, assessment of pre-existing problems and psychological vulnerability before diagnosis and when there are dual sexual dysfunction problems in the relationship Leadership 4. Intensive therapy Requires referral when adequate progress is not being made at the other levels and more in-depth counselling is needed. Also, if pre-existing sexual problems, dual dysfunctions or relationship distress Achievement of specialist, plus has undertaken specialist training as a psychosexual therapist/medical sexologist, they will: Act as an expert resource for other healthcare professionals when dealing with complex symptoms Use specialist knowledge and expertise to conduct a multidimensional specialist assessment of sexual expression and function for the individual/couple, reach a formulation of the sexual and/or relationship difficulty and negotiate/agree on the most appropriate intervention(s). Interventions typically address the three dimensions of psychosexual difficulties, namely: physical contributors, psychological contributors and relational/interpersonal contributors Interventions will also identify and address any predisposing, precipitating and/or maintaining factors related to the sexual and/or relationship concern(s) Sexual difficulties/concerns most typically requiring referral to a sex therapist: - Desire/arousal difficulties - Orgasmic difficulties - Sexual pain - Non-responsive to biomedical strategies - Sexual fear/avoidance - Couple difficulties - High levels of distress 19

5 Art & science acute holistic care Table 2 Competency framework to to address the the needs needs of women of women after gynaecological after gynaecological cancer cancer Topic Level Knowledge and experience Communication 1. Ability to identify barriers to offering support, including own values, experiences and beliefs Communication skills and use of normalising language Ability to consider the possibility of a sexual problem Ability to take a basic sexual history Awareness and ability to recognise hidden sexual problems by observing the patient s non-verbal clues such as body language, demeanour, and verbal clues such as angry, aggressive or distressed comments Ability to initiates or review investigations to exclude a physical cause for the sexual problem Awareness of the interactions and feelings between the nurse and the woman Ability to identify barriers to offering support: transference and counter transference Ability to work with couples on communication issues, including conflict resolution, negotiation Dimensions of sexual assessment 3-4 Knowledge of female sexual disorder and oncology-specific assessment instruments, including physical, hormonal, pharmacological and psychological instruments 4 Understanding of partner difficulties and relationships Understanding of predisposing, precipitating and maintaining factors Implications of gynaecological cancer on sexual function Normal sexual function Sexual dysfunction 1-4 Ability to recognise gynaecological cancers by site, namely cervix, ovary, uterus, vagina and vulva Understanding that: Cancer may cause pain as well as abnormal bleeding, including post-coital, and vaginal discharge that may be offensive. Tumour size can cause discomfort and pain during intercourse, and cause an obstacle to vaginal penetration. Meanwhile, treatment for cancers may affect sexual functioning and that support may be needed Surgery can cause disfigurement and changes to external and internal sexual organs. For example, radical vulvectomy involves removal of the clitoris, the remaining tissues may be tight and devoid of fat, and the women who undergo this surgery may develop vaginal stenosis. Radical hysterectomy shortens the vagina. Pelvic exenteration involves removal of the vagina and stomas. Oophorectomy ensures menopausal state Surgery can cause infertility. Lymphadenectomy increases the risk of lymphoedema Radiotherapy can damage vagina with changes including vaginal shortening, necrosis, adhesions, fibrosis and damage to local blood vessels. Radiotherapy can also cause ovarian failure and ensure menopausal state, damage the bowel and bladder, and lead to the development of fistulas Chemotherapy can cause temporary alopecia as well as ovarian failure and peripheral neuropathy, which affects sexual sensation and touch perception Chemotherapy and radiotherapy can lead to chronic fatigue, nausea and diarrhoea 3-4 Knowledge of: Normal sexual functioning including biological, psychological, physical, interpersonal and behavioural phenomena Phases of normal female sexual function including desire and willingness, excitement and arousal, plateau, orgasm, and resolution and sexual satisfaction 4 Knowledge of male sexual functioning and couple interaction 3-4 Knowledge of all of the above to address sexual dysfunctions such as lack of desire or willingness, ihibited sexual desire, loss of interest in sex, negative attitudes towards sex, anxiety about sex, avoidance of sexual situations, scarce or absent motivational reasons or incentives to become sexually aroused, and disparate levels of sexual desire in couples, lack of excitement or arousal, ihibited subjective and/or objective sexual arousal, Knowledge to address issues such as impaired vaginal lubrication or engorgement, vaginal muscle spasm, pain with intercourse, inhibited female orgasm, aorgasmia, delayed orgasm, and reduced orgasmic sensation or intensity Psychosexual therapy (intensive therapy) 4 Knowledge about: Desire disorders and the role of sensate focus and the sexual growth programme Aousal difficulties and the role of sensate focus, use of fantasy, erotica, lubricants and vibrator therapy Sexual pain and the role of lubricants, relaxation, anxiety management, pelvic floor exercises, dilator therapy, vibrator therapy and mindfulness Orgasmic difficulties and the role of sensate focus, use of fantasy, erotica and vibrator therapy Reduced sexual satisfaction and the role of sensate focus, use of fantasy and couple communication 20

6 Skills and experience Education format Competency achieved, Ability to: Raise sexual issues and be comfortable with the topic Create an atmosphere in which women can raise problems of a sexual nature Demonstrate non-judgemental attitudes about sexual identity, sexual orientation and range of sexual behaviours, and use affirming language Demonstrate non-judgemental attitudes to women regardless of their age, ethnicity and disability Empathise with patients who have problems of a sexual nature Iidentify and respond appropriately to emotions that emerge in consultations Demonstrate respect for diversity of religious and cultural beliefs in relation to sexuality Knowledge of sexual problems and dysfunctions to inform practice Ability to apply knowledge to assessments of sexual difficulties Self-exploration and reflective practice Reading Advanced communication skills training recognised by UK Council for Psychotherapy/British Association for Counselling and Psychotherapy/College of Sexual and Relationship Therapists (UKCP/BACP/COSRT) or partially or not achieved. Comments, date and signature Ability to address sexual problem and evaluate effectiveness Awareness of need to refer on for intensive therapy for full psychosexual assessment and treatment planning as appropriate Ability to: Apply knowledge of sexual function, sexual dysfunction and effects of cancer and its treatment Discuss with woman possible implications of treatment Identify specific problems that may be encountered as a result of each of the cancers on sexual function Assess and evaluate interventions Address common problems and make suggestions about non-medical interventions involving, for example, dilators, lubricants, vaginal moisturisers Address common problems and make suggestions about surgical, hormonal and psycho-educational interventions Refer for intensive therapy, including cognitive behavioural therapy, mindfulness and couple counselling Formal study Ability to apply knowledge to inform assessment of sexual difficulties Ability to: Apply knowledge of sexual problems and dysfunctions to inform practice Apply knowledge to perform assessment of sexual difficulties Address sexual problem and evaluate effectiveness Demonstrate awareness of need to refer on for intensive therapy for full psychosexual assessment and treatment planning as appropriate Formal study 21

7 Art & science holistic care Conclusion The aim of the competency framework is to support and guide nurses and other healthcare professionals to develop the knowledge, skills and experience to address the needs of women after gynaecological cancer. The principles are transferable to other types of cancer when combined with existing knowledge of site-specific disease, treatments and their potential consequences. By indicating to patients that discussing sexual problems is acceptable at any point in their cancer journey, barriers may potentially be removed and patient experience improved. Using the framework will support staff in identifying their level of competence and ability to deliver this component of care. Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared References Annon J (1976) The PLISSIT model: a proposed conceptual scheme for the behavioural treatment of sexual problems. Journal of Sex Education and Therapy. 2, 1, Brotto L, Heiman K, Goff B et al (2008) A psychoeducational intervention for sexual dysfunction in women with gynecologic cancer. Archives of Sexual Behavior. 37, 2, Cancer Australia (2010) The Psychosexual Care of Women Affected by Gynaecological Cancers. tinyurl.com/nkz8wue (Last accessed: August ) Carter J, Rowland K, Chi D et al (2005) Gynecologic cancer treatment and the impact of cancer-related infertility. Gynecologic Oncology. 97, 1, Hill E, Sandbo S, Abramsohn E et al (2011) Assessing gynecologic and breast cancer survivors sexual health care needs. Cancer. 117, 12, Lammerink E, de Bock G, Pras E et al (2012) Sexual functioning of cervical cancer survivors: a review with a female perspective. Maturitas. 72, 4, Lancaster L (2004) Preventing vaginal stenosis after brachytherapy for gynaecological cancer: an overview of Australian practices. European Journal of Oncology Nursing. 8, 1, Levin A, Carpenter K, Fowler J et al (2010) Sexual morbidity associated with poorer psychological adjustment among gynecological cancer survivors. International Journal of Gynecological Cancer. 20, 3, Lindau S, Gavrilova N, Anderson D (2007) Sexual morbidity in very long-term survivors of vaginal and cervical cancer: a comparison to national norms. Gynecologic Oncology. 106, 2, Macmillan Cancer Support (2014a) A Competence Framework for Nurses: Caring for Patients Living With and Beyond Cancer. Macmillan Cancer Support, London. Macmillan Cancer Support (2014b) The Recovery Package. Macmillan Cancer Support, London. Macmillan Cancer Support (2014c) Guidance on Long Term Consequences of Treatment for Gynaecological Cancer. Part 1 Pelvic Radiotherapy. Macmillan Cancer Support, London. Macmillan Cancer Support (2015) LearnZone. tinyurl.com/ojwpzed (Last accessed: August ) Maddams J, Utley M, Møller H (2012) Projections of cancer prevalence in the United Kingdom, British Journal of Cancer. 107, 7, National Cancer Survivorship Initiative (2013) Living With and Beyond Cancer: Taking Action to Improve Outcomes. DH, London. Nursing and Midwifery Council (2015) The Code: Professional Standards of Practice and Behaviour for Nurses and Midwives. NMC, London. Park S, Bae D, Nam J et al (2007) Quality of life and sexual problems in disease-free survivors of cervical cancer compared with the general population. Cancer. 110, 12, White I, Allan H, Faithfull S (2011) Assessment of treatment-induced female sexual morbidity in oncology: is this a part of routine medical follow-up after radical pelvic radiotherapy? British Journal of Cancer. 105, 7,