Addressing patient sexuality issues in cancer and palliative care

Altered sexuality due to disease can have long-lasting effects on patient wellbeing, relationships and overall quality of life (Hautamäki-Lamminen et al, 2013; Krouwel et al, 2015). Sexuality is closely associated with a person's individuality and distinctiveness, it can be considered a highly private and intimate topic, and therefore complex for health professionals to address in patient care (Roberts, 2013; Kissane et al, 2017).

Cancer is now recognised as a long-term condition, with survivorship levels continuing to rise. In survivorship, patients may continue to experience both physical and psychological long-term serious side effects. These include sexual changes and relationship issues (Manicom, 2010; Keesing et al, 2015). If patients have appropriate support and ongoing assessment post-treatment, quality of life could be improved at a much earlier stage (Maher and McConnell, 2011).

In palliative care, the impact of disease and living with a life-limiting condition can also have a profound effect on relationships and patient sexuality. Sexuality is an important aspect of palliative care and the earlier it is assessed, the more beneficial it is for the patient's quality of life (Blagbrough, 2010).

Patient assessment and support in sexual issues by health professionals appears to remain a neglected area of clinical practice (Krouwel et al, 2015).

An extended literature review was undertaken for this article. Five electronic databases were accessed (British Nursing Index (which yielded 5 articles), Ovid Medline/Emcare (1), Sage (2), PsycINFO (5) and Science Direct (4)). Two articles were obtained through snowballing and one from the Education Resources Information Centre (ERIC). These, combined with other sources, yielded 20 primary research papers for analysis. The research approach of the articles was:

• Qualitative (n=6)
• Quantitative (n=7)
• Mixed methods (n=5)
• Evaluation reports (n=2).

Barriers to sexuality assessment

There are many challenges to sexuality assessment and the barriers appear to be complex in nature. de Vocht et al (2011) examined the differences between patient expectations and those of health professionals and found they are often diverse. They identified that barriers preventing sexual assessment were numerous. These included staff not seeing patients as sexual persons, making assumptions in relation to their sexuality with regard to age, culture or sexual orientation, and the fear of being intrusive. Lack of confidence in discussing sexual concerns with patients and inadequate or a total lack of training with regards to patient sexuality were also identified. The cultural beliefs and upbringing of healthcare staff were highlighted as other possible barriers. de Vocht et al (2011) emphasised that it is important to recognise that, for some staff, discussing sexuality may be extremely difficult, particularly if they have experienced sexual mistreatment themselves. Therefore, the mental wellbeing of staff must be paramount and clear access to support available if required.

Studies by Ussher et al (2013), Sporn et al (2015) and Williams et al (2017) had similar findings, and identified insufficient time to assess and address sexual concerns, environmental issues such as lack of private space and busy environments as barriers. Over-familiarisation with patients, for example when staff get to know patients over a long period in oncology and palliative settings was also identified as a possible barrier, because embarrassment may occur. However, it could also be considered that consistency and familiarity with patients may make the task of sexual assessment easier for some professionals.

Mansour and Mohamed (2015) identified the societal and possible cultural factors preventing sexuality assessment. Some of the barriers identified were as previously mentioned, such as staff not seeing patients as sexual persons, making assumptions, staff embarrassment and limited time. Additionally, they identified potential patient embarrassment when discussing sexuality. The assumption that other medical problems took priority over sexual concerns was also highlighted. The fear of colleagues' response, a barrier not mentioned in other studies, was an interesting point and possibly highlights the cultural differences within societies. de Vocht et al (2011), Ussher et al (2013), Mansour and Mohamed (2015) and Williams et al (2017) also found a total lack of coherence on exactly ‘whose role it is’; they concluded that the confusion within the multidisciplinary team can be a major factor in poor delivery of care. Differences of opinion on which professional group should perform a sexuality assessment were also clearly shown in Ussher et al's (2013) study, where the nurses believed that the medical team were responsible, while the medical team believed it was the role of a clinical psychologist. There appears to be clear evidence of ‘passing the buck’ in this area of practice. However, all these authors suggested a team approach was needed, with each member having defined roles with clear guidelines and tools to ensure effective communication.

There are clearly numerous barriers. One is patient unease when discussing these issues, but, more significantly, there are problems with insufficient time for staff to discuss these concerns and lack of clarity over whose job remit it actually is. Key staff concerns are listed in Table 1.

Educational approaches and teaching methods to address sexuality in oncology patients

The research clearly highlights the importance of education and knowledge of sexual issues to enable health professionals to provide holistic patient care. However, gaps in this knowledge are also evident, specifically within the nursing profession (De Vocht et al, 2011; Williams et al, 2017; Ussher et al, 2013; Mansour and Mohamed, 2015; Saunamäki et al, 2010).

Sung et al (2016) identified this chasm in practice and developed an educational programme to address this gap. To do this, Sung et al (2016) devised a study comprising two phases. Phase one involved two focus groups of 16 nurses in total. The participants were randomly allocated and interviewed using open-ended questions to determine their attitudes and training requirements in relation to sexuality. A sexual healthcare training programme was then created, based on these findings.

In the second stage of the study, 117 nurses were randomly selected from a hospital in Taiwan, 59 in the experimental group and 58 in the control group. The experimental group received 16 hours of sexual healthcare training over a 4-week period; the control group did not receive training. The training provided included a range of teaching strategies and methods. The experimental group provided self-reported feedback data four times over the training period, on the benefits of the education provided. The improvement in staff attitude, confidence and knowledge was evident in the experimental group, at a significant level (P<0.05).

The authors suggested ongoing education programmes in sexuality should be provided to ensure continuous effectiveness in this area of practice. They also stressed that, within sexuality training, the attitudes and beliefs of staff must be addressed to change and improve practice. This is an important point and contradicts other authors such as De Vocht et al (2011), who suggested that changing staff attitudes may not always be possible.

Jonsdottir et al (2016) described the altered practice of oncology health professionals following a 2-year training programme in sexuality. The education provided included an initial 5-hour workshop, followed by another 5-hour workshop a year later. Educational sessions were also held after each workshop in each clinical area for 20-30 minutes, facilitated by the role models for that clinical area. A variety of teaching methods were used in the workshops, including lectures, group discussions and case scenarios, allowing staff to practise discussing sexuality in pairs. The aim of the study was to improve sexuality communication with more than 50% of patients. Although the findings demonstrated some improvement in sexuality discussion by professionals; it was nowhere near the prevalence the researchers hoped for. The authors suggested ongoing education is required to improve this percentage.

Lee et al (2012) demonstrated some positive findings following a 1-day training session for healthcare staff. The study day included didactic sessions, open discussion, role play and advice on services available to address patients' sexuality concerns. Participants were also signposted to the Macmillan Cancer Support charity website, where sexual relationship and intimacy study days, as well as materials related to patient sexuality, are available for staff to access free of charge (Macmillan Cancer Support, 2013). The authors were confident in the success of the training day. One participant demonstrated the importance of sexuality in cancer by saying: ‘It is like talking about dying, difficult, but necessary.’

Smith and Baron (2015) also examined a short training programme, looking at the impact of a 1-hour workshop on sexuality issues in breast cancer. Five 1-hour sessions were delivered, the teaching methods varied from didactic to open discussion and some role play. The authors reported favourable results from the questionnaires on completion, with participant confidence levels rising.

Kim and Shin (2014) explored the benefits of an online education programme on patient sexuality for oncology nurses. The e-learning involved eight tutorial sessions over 8 weeks. The online teaching methods varied from the use of scenarios for discussion, the use of quizzes and educational videos. The study findings revealed a significantly higher level of knowledge; however, no real change in attitude was noted. There is a divide between education, where the importance of sexuality is recognised, and actual clinical practice, where it can be neglected (Kim and Shin, 2014).

E-learning as an educational method is well-established in health education in the UK; however, using several different strategies and teaching methods is important, as not all professionals have the time or inclination to access e-learning resources. This point is supported by McVeigh (2009) who suggests that e-learning is not the only solution in healthcare education and student inclination and opinion with regards to technology must be taken into consideration. However, different learning styles and abilities must also be accounted for. Using e-learning as a teaching tool for sexuality training may be appropriate in some instances, particularly as a follow-up from short training days.

Whatever the training style, it needs to be successful, cost effective, deliverable and realistic in the current climate of austerity within the UK healthcare environment. Different teaching strategies must be considered and evaluated; learning styles differ and this must be accounted for. The literature search indicated that shorter programmes in sexuality training can be as effective as longer courses. The requirement for continuous patient sexual care education is evident, and therefore short training programmes may be the sustainable option. Getting the correct balance in educational requirements for staff is key to effective patient care. Additionally, considering accrediting these sexuality courses may encourage staff attendance. For examples of the various types of educational programmes available see Table 2.

The use of assessment tools and other methods in patient sexuality assessment

The benefit of using sexuality assessment tools by health professionals was highlighted by Saunamäki et al (2010)de Vocht et al (2011), Lee et al (2012), Sporn et al (2015) and Smith and Baron (2015). There are different tools available for professionals to use to assess patient sexuality problems and concerns. The most commonly known tool is the Permission, Limited Information, Specific Suggestions, Intensive Therapy (PLISSIT) sexuality tool. This was developed in the 1970s and updated by Taylor and Davis (2006).

Perz et al (2015) explored the use of the PLISSIT tool and clearly demonstrated the effectiveness of using it to give patients permission to discuss sexual concerns, enabling effective support. For patients and their partners this included offering the practical advice required for each individual couple. McMullen et al (2017) examined the use of communication tools in oncology and found little evidence of their use in practice; they also revealed profound gaps in communication between oncology patients and professionals. Neither the patients nor the professionals had ever used a communication tool before the study. There appears to be a clear rift between what patients and professionals considered important, sexuality being among the most neglected areas. Following the examination of the tools, patients expressed a keen interest in their use and felt they could improve communication with the healthcare team.

Using assessment tools may not only address the issue of sexual concerns, but may also encourage professionals to access information and education before patient assessments. The importance of giving patients and partners the permission and opportunity to discuss sexual concerns appears to be a key point raised in the literature (Lee et al, 2012; McMullen et al, 2017).

Referring patients to specialist services related to sexuality is another important point repeatedly mentioned in the literature examined. Increasing staff knowledge in relation to what is available is key. For example, patients with body image issues could be informed about the UK charity Look Good, Feel Better (2021). This charity provides an excellent service, helping male, female and young adult cancer patients address altered body appearance, with online workshops covering skin care, make-up, grooming, hair loss, hair care and wig advice, and nail care. It is important for professionals to be aware of this type of support in order to signpost patients before and after assessment.

Wang et al (2015) explored the impact of a short training programme addressing female sexual concerns in oncology, lasting 35-40 minutes. The sessions involved mixed teaching methods, including didactic approaches and role play. It also included the introduction of a sexuality assessment tool developed by one of the authors, called ‘Did you CARD her’? (where CARD stands for Cancer, Ask, Resources/referral and Document). Feedback showed an increase in confidence levels in addressing sexuality from pre-test to post-test in all the responses from the multidisciplinary team involved, and the use of the assessment tool was also well evaluated. The use of prompt cards for staff to access, perhaps keeping them in their pocket or clinic desk, is certainly a valuable technique to consider.

Tracy et al (2016) highlighted the impact of providing a nurse-led sexual health clinic in oncology. Following a cancer diagnosis, 21 patients were seen in the clinic and given support, advice and education in relation to sexual concerns. Two months following this, they were interviewed using semi-structured questions. Sixteen patients reported significant changes in their sexual life following diagnosis and treatment. Patients highlighted the importance of professionals initiating the conversation and the need for consistency, therefore seeing the same professional. Feedback following attendance at the clinic was highly positive, the main benefit for patients was knowing where to go for help. It also enabled patients to communicate with partners more effectively.

Tracy et al (2016) suggested that nurse managers must ensure staff are adequately trained in sexual health issues. The suggestion of an online call centre that patients could access, the provision of information brochures and literature addressing sexuality problems were also identified as appropriate resources. Tracy et al (2016) highlighted the importance of taking a multidisciplinary approach to address sexual health concerns in oncology. De Vocht et al (2011) also emphasised this and indicated the necessity of a team approach, with clearly defined roles, to address sexual concerns. They highlighted that not all professionals can or want to be experts in sexuality assessment, therefore they suggest a ‘stepped skills model’. When team members identify sexuality problems, instant referrals should be made to their skilled colleagues who have specialist training and further education in sexuality. This is another innovation that could be considered within oncology and palliative care teams in the UK.

Jonsdottir et al (2016) reported the benefits of a specialist sexuality counsellor to enable staff to make referrals. The availability of a staff database and pocket books with key points around sexual assessment were also identified with positive feedback from professionals. Smith and Baron (2015) also advised giving participants laminated pocket cards with information regarding sexual assessment.

There are various resources available to health professionals in patient sexuality assessment, including sexuality assessment tools and prompt cards. Additionally, the development of nurse-led sexuality clinics, sexuality ambassadors and multidisciplinary working is key. Having knowledge of available charities and other resources in supporting patients with their sexuality should is also important. These resources appear to be beneficial and may enable staff to address patient sexuality concerns with confidence. Box 1 gives examples of resources available or that can be created.

Box 1.Assessment tools and other resources recommended

• PLISSIT tool
• Sexuality assessment prompt cards
• Nurse-led sexual health clinics
• Sexuality champions/experts
• Stepped skills model
• Staff database of useful information for staff and patients
• Cancer support charities for patient referral and staff information
• Patient online call centre
• Literature: patient leaflets on key topics

Conclusion

The attitudes and beliefs of professionals, often influenced by their ethnicity and cultural background, clearly affects sexuality assessment. The need to address this in any form of sexuality training to ensure staff are aware of their beliefs and behaviours is paramount. However, changing staff attitudes may not always be possible in relation to beliefs about sexuality, despite education.

Numerous barriers to sexuality assessment are evident, including lack of confidence, limited time, poor environment preventing confidentiality and professionals making assumptions about a patient's sexuality requirements. Although both patients and professionals clearly acknowledged the importance of discussing sexuality, both parties identified a reluctance to do so, waiting for the other to open the discussion, clearly showing a dichotomy in practice. This demonstrates the importance of staff having the skills and confidence to initiate these discussions. A consistent barrier noted was the lack of education and staff knowledge in relation to assessing and addressing sexuality concerns in cancer and palliative care.

The confusion and uncertainty of role responsibility within the multidisciplinary team was also an issue identified. It is evident from the research that this has been an issue for many years and the ‘passing-the-buck’ culture must be addressed by a team approach.

Different methods of sexuality training are available, ranging from short programmes to longer training events. While both appear to have some benefit, the need for realism in the current economic climate is important. Therefore, short training sessions may the best approach because student feedback on the shorter training programmes appeared positive (Lee et al, 2012; Blair et al, 2013; Smith and Baron, 2015; Sporn et al, 2015). Ensuring training is geared towards organisational requirements, is productive, cost effective and sustainable may be the key to success.

The use of sexuality assessment tools that are available for staff to access, such as the PLISSIT and CARD tools, is key. Despite their availability for many years, it appears their use is limited in clinical practice. Future research to determine the cause of this and to ascertain why professionals are reluctant to use them may be beneficial. It is important to give professionals the skills and confidence to address patient sexuality and while these tools are clearly beneficial, other methods must be considered.

The use of sexuality prompt cards that staff can carry in their pocket or have easy access to may be helpful. Additionally, the availability of sexuality information on hospital intranets and other resources for staff to easily access may improve confidence levels. Nurse-led sexuality clinics also demonstrated effective patient outcomes. Training key staff as sexuality experts and enabling staff with the appropriate knowledge to ensure onward referral to specialist services should be considered.

The serious impact of cancer and its treatment on patient sexuality must be recognised. This includes those in survivorship and those receiving palliative care. The specialties of cancer and palliative care pride themselves on total holistic patient care; however, until this identified gap in clinical practice is addressed, true patient-centred holistic care may not be achievable.

KEY POINTS

• Training and education in sexuality assessment is required for all healthcare staff working in oncology and palliative care
• Education must be productive, cost effective and sustainable
• A multidisciplinary approach with clear role definition in sexuality assessment is required
• The use of specialist trained sexuality champions and nurse-led clinics can be helpful
• The use of assessment tools and prompt cards can assist in discussions of sexuality with patients

CPD reflective questions

• Think about why patient sexuality assessment training is important in oncology/palliative care. How is this approached in your clinical area?
• What training and educational methods could be considered in your area?
• How could the use of assessment tools and prompt cards improve practice?
• What other methods could be used to enhance staff knowledge and confidence?