The psychosexual needs of lesbian women affected by cancer: A phenomenologically inspired study moving education and practice forward

The past two decades has seen an increased interest in, and awareness of the ways in which cancer and concomitant treatments effects individuals and couples in terms of their expressions of sexuality and sexual health (incorporating psychosexual health) (Sadovsky & Bassoon et al, 2010, Greenwald &McCorkle, 2008, De Vocht, 2011). However, the research studies found focused on the impact on heterosexual individual’s and couples, with a dearth of literature pertaining to the impact on lesbian and bisexual women affected by cancer. Although, the health care needs of individuals from sexual minority groups has begun to be recognised and addressed by practitioners (Stonewall, 2010, Davey, 2012), the lack of available literature to help guide practice in this area means that they often fail to recognise the needs of the lesbian women in their care. The aims of this study were therefore twofold, firstly to explore the sexuality, sexual health (incorporating psychosexual health) and relationship experiences of lesbian and bisexual women who have been diagnosed and received treatment for cancer. Secondly to use the outputs from the first aim, to develop a conceptual framework and model for practitioners working with lesbian and bisexual women in the fields of cancer care in regards to these areas. This study was designed with a research design which enabled the ‘voices’ of both the lesbian and bisexual women, and the cancer practitioners to be heard. The overarching research methodology was descriptive phenomenology, however, it became evident that the traditional approach taken in descriptive phenomenological studies (Giorgi, 1985, 2009, Rutherford & McIntyre et al, 2012) would not yield the breadth and depth of data needed to develop the conceptual framework. Therefore, as suggested by Mayoh & Onwegbuzie (2013) the concept of applying the steps that underpin action research throughout the phenomenologically inspired journey were used. As a starting point for the study, and to assess the readiness and preparation of practitioners in cancer care the views and experiences of both an expert panel and focus groups of specialist practitioners were sought on four occasions. The face to face interactions were supplemented with paper and online questionnaires. A documentary analysis of the United Kingdom (UK) government and healthcare professional organisations documents pertaining to the place of sexuality and sexual health within practice and education was undertaken to explore the actual practice situation. This was followed by review of undergraduate nursing and medical curriculum with a focus on the holistic assessment and management of sexuality and sexual health needs. In addition, the UK governmental and professional body Lesbian, Gay, Bisexual and Transgender (LGBT) specific directives for good patient care practice, together with the LGBT specific content within undergraduate nursing and medical curriculum were systematically analysed. The voices of lesbian and bisexual women affected by cancer – both survivors and partners provided a wealth of in-depth information through the individual interviews and online qualitative questionnaires. This gave new insights into and increased understanding of the issues faced by participants. It highlighted similarities and differences with and from the findings from the heterosexual studies, and provided the baseline from which the conceptual framework and model were developed. It was seen as essential that these had a theoretical basis that practitioners could accept and utilise and that it was incremental to recognise the longevity of the support and guidance sought by participants. When shared with practitioners the conceptual framework and model were well received and only minor refinements were needed. It does enable cancer care practitioners to offer more tailored care to the lesbian and bisexual women in their care. Especially in regards to the women’s sexuality, sexual health (incorporating psychosexual health) and relationships, and has led to links and work with both Macmillan Cancer Support and Relate the UK’s largest provider of relationship support