Christine Mulligan1 and Sinéad McGilloway2&3
1 PhD scholar, Centre for Mental Health and Community Research, Maynooth University Department of Psychology and Social Sciences Institute
2 Professor and Founder Director, Centre for Mental Health and Community Research, Maynooth University Department of Psychology and Social Sciences Institute
Last year marked the 70th anniversary of the well-known Kinsey reports – two ground-breaking pieces of research which, for the first time, brought human sexuality within the scientific and public domains. Despite the passage of time, we may still struggle today to openly discuss the topic of sex and not least within our health services. For example, an emerging body of literature points to the benefits of discussing intimacy and sexuality with oncology patients. Lindau1 report that addressing potential sexual difficulties with individuals living with cancer can help to increase feelings of psychological well-being, reduce stress, and has the potential to assist patients and partners achieve sexual contentment.
Indeed, within palliative care more broadly, the growth of survivorship recognises the importance of addressing sexual health beyond a cancer diagnosis as a key component of the human experience incorporating “… sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction(2)”.
Maynooth University Research
A research project carried out by the Centre for Mental Health and Community Research (CMHCR) at Maynooth University, assessed the perceived impact of an advanced communication skills training (ACST) programme on confidence levels reported by senior healthcare professionals (HCPs) when discussing a range of topics with patients living with a life-threatening illness. The Wilkinson ACST programme3 is an evidence-based programme incorporating strategies for dealing with challenging conversations including patient assessment, responding to strong emotions, recognising collusion, dealing with denial and breaking bad news within a palliative care setting. Topics raised during training are participant-led therefore the impact of a cancer diagnosis on an individual’s sexuality is not automatically addressed.
Our research was conducted to assess the longer term post-training impact of the Wilkinson ACST on HCPs’ perceived confidence to communicate on a range of challenging topics. An online survey was administered to two groups of senior healthcare professionals (HCPs) in the north (N=480) and south of Ireland (N=80). Survey questions included ‘how confident do you feel discussing (the topic) with a person living with a life-limiting illness’ using a 5-point Likert scale ranging from ‘very confident’ to ‘not confident at all’. The levels of confidence with which health professionals discussed ‘sex’ were compared with other topics such as changes in ‘body image’, ‘death and dying’ or ‘psychological challenges’ due to a life-limiting illness.
The average response rate across both surveys was 33% with respondents typically employed in ‘specialist palliative care’, ‘acute hospital’ and ‘oncology’ settings as ‘nurses’, ‘medics’ and ‘allied professionals’.
The highest confidence levels reported by HCPs on average across both jurisdictions related to discussing ‘psychological issues’ (87%) with patients followed jointly, by ‘communicating with distressed junior health professionals’ or ‘providing information to other HCPs’ (85%). Perceived confidence to discuss ‘death and dying with relatives’ (83%), or directly with ‘patients’ (81%), stood in stark contrast to the reduced confidence when the topic related to ‘sex’ (43%).
Despite an increased focus on ACST for senior HCPs working in oncology settings4, little is understood about why experienced professionals struggle to discuss their patients’ sexuality, particularly given its importance for quality of life (QoL). One early explanation offered by Jaffe5 suggests that palliative patients are viewed as dying rather than living, thereby suggesting that the topic of sex may be seen as threatening for HCPs. Research also points to a fear of causing embarrassment or feeling embarrassed, as well as perceived inadequate knowledge or skill, all of which may play a role in lower levels of confidence when discussing the topic. In addition, since 2001, the onus of responsibility for assessing the sexuality of critically ill patients has fallen on social workers6. However, as Cagle and Bolte6 point out, the:
NASW’s [National Association of Social Workers] (2003) current Standards for Social Work Practices in Palliative and End of Life Care do not mention sexuality, sex, or intimacy; and although the NHPCO [National Hospital and Palliative Care organisation] social work competencies identify sexuality as a core component of assessment, there are no discussions, explanations, or examples of how to do this.
Nevertheless, competency frameworks for HCPs in palliative care settings emphasise the importance of communication skills because ineffective communication can negatively impact upon patient wellbeing, reduce adherence to treatment while simultaneously, increasing staff stress levels and reducing job satisfaction. Research also indicates that communication skills do not necessarily improve naturally, or with the passage of time, but can improve with training(4).
Why discuss sex?
A patient’s sexuality is a fundamental component of QoL and improvements in sexual functioning can, therefore, improve well-being, even in the context of a life-limiting illness. We also know that raising the topic may facilitate solutions to sexual disruption related to illness or the effects of oncology treatment(7). A discussion of this often difficult topic may also help to reduce self-blame for the patient and minimise inter-relational problems resulting from sexual disruption following an illness. Despite the extent of our knowledge about sexuality, little is understood about how HCPs can better initiate and manage this topic in palliative care settings(6).
Modern society, 70 years on from Kinsey’s work, arguably requires a lifespan, holistic approach to improving QoL for individuals living with life-limiting illnesses, especially in view of the increasing survivorship rates. Caring for patients experiencing an illness in contemporary society may also require a broader working definition of sexuality beyond the traditional male-female partnerships. In considering the training requirements for healthcare professionals working in specific areas, it may now be necessary to address the potential for stereotypes such as ageist approaches or attitudes within all disciplines, where sex is viewed for the younger generation or the healthy(8). Given the consistently low confidence scores when discussing sex compared with other topics, it would seem timely and appropriate to alert health professionals to the importance of including this topic in their conversations with patients, whilst also ensuring that it is explicitly addressed in all ACST programmes in the future.
This research was supported (non-financially) by Milford Care Centre and we also acknowledge, with thanks, the help and support provided by Dr Susie Wilkinson and Macmillan cancer support© Northern Ireland.
1. Lindau ST, Gavrilova N, Anderson D. Sexual morbidity in very long term survivors of vaginal and cervical cancer: A comparison to national norms. Gynecologic Oncology. 2007;106(2):413-8.
2. WHO. Developing sexual health programmes: a framework for action. Geneva: World Health Organization; 2010. p.4
3. Wilkinson S, Perry R, Blanchard K, Linsell L. Effectiveness of a three-day communication skills course in changing nurses’ communication skills with cancer/palliative care patients: a randomised controlled trial. Palliative Medicine. 2008;22(4):365-75.
4. Moore PM, Rivera Mercado S, Grez Artigues M, Lawrie TA. Communication skills training for healthcare professionals working with people who have cancer. The Cochrane database of systematic reviews. 2013;3(3):CD003751.
5. Jaffe L. The terminally ill. The sexually oppressed. New York: Association Press; 1977. p. 277–92.
6. Cagle JG, Bolte S. Sexuality and Life-Threatening Illness: Implications for Social Work and Palliative Care. Health & Social Work. 2009;34(3):223-33.
7. Stead ML, Brown JM, Fallowfield L, Selby P. Lack of communication between healthcare professionals and women with ovarian cancer about sexual issues. British Journal of Cancer. 2003;88(5):666-71.
8. Morrissey Stahl KA, Bower KL, Seponski DM, Lewis DC, Farnham AL, Cava-Tadik Y. A Practitioner’s Guide to End-of-Life Intimacy: Suggestions for Conceptualization and Intervention in Palliative Care. Omega Journal Article. 2018;77(1):15.