**Sexuality and Intimacy in the Context of Cancer**

J. M. Ussher, J. Perz, E. Gilbert,

Y. Hawkins and W. K. T. Wong *University of Western Sydney, Australia* 

### **1. Introduction**

72 Topics in Cancer Survivorship

Xia, W.; Vilaboa, N.; Martin, J. L.; Mestril, R.; Guo, Y. & Voellmy, R. (1999) Modulation of

Yu, B.; Zhao, X.; Lee, L. J. & Lee, R. J. (2009) Targeted delivery systems for oligonucleotide therapeutics. *The AAPS Journal* Vol.11, No.11, (March 2009), pp. 195-203.

Vol.4, No.1, (February 1999), pp. 8-18.

tolerance by mutant heat shcok transcription factors. *Cell Stress and Chaperones*

#### **1.1 The impact of cancer on sexuality and intimacy: A key aspect of quality of life**

In 2006, more than 106,000 new cases of cancer were diagnosed in Australia, with the number of new cases in New South Wales alone expected to grow to 40,116 by 2011 (AIHW et al., 2007, Tracey et al., 2005). It is now widely recognised that cancer and its treatment can have a significant effect on the quality of life of both people with cancer (Stommel et al., 2004) and their family members, in particular their intimate partner (Hodges et al., 2005). Sexuality and intimacy are important aspects of an individual's quality of life (World Health Organisation, 1995), and there is a growing body of evidence to show that cancer can result in dramatic changes to sexuality, sexual functioning, relationships, and sense of self, regardless of cancer type. Indeed, these changes can be experienced as the most significant in the person with cancer's life (Anderson et al., 2000).

For women, treatments for gynaecological, colorectal, or breast cancer can alter patterns of fertility, have a negative impact on arousal and orgasm, reduce vaginal lubrication and elasticity (Jvaskova et al., 2003), precipitate negative changes to body image and sense of self, or precipitate 'sexual dysfunction' (Maughan et al., 2002, Sundquist, 2002, Baider et al., 2000). For men, prostate and testicular cancer can impact on fertility, ejaculatory capacity, and erectile potential (Gurevich et al., 2004), as well as provoking diminished confidence, fear, and embarrassment associated with sexual ability (Bokhour et al., 2001). The fatigue caused by cancer and certain treatments, such as chemotherapy and radiotherapy, is also typically associated with diminished desire (Rolland, 1994).

Changes to sexuality post-cancer have ramifications beyond sex as an activity. It has been argued that when sexual intercourse ceases after illness, touching and other forms of affectionate physical contact also diminish (Kuyper et al., 1998), because of a perception amongst some couples that these forms of affection necessarily lead to sexual intercourse, which is either not possible, or deemed inappropriate (Hughes, 2000). Equally, if all forms of sexual intimacy within the couple relationship disappear, couples facing cancer can feel isolated, anxious, depressed (Germino et al., 1995), inadequate (Anllo, 2000), or emotionally distant from their partner (Rolland, 1994). Conversely, sexual intimacy has also been found to make the experience of cancer more manageable and assist in the recovery process (Schultz et al., 2003), or be central to couple closeness and quality of life in palliative care (Lemieux et al., 2004).

Sexuality and Intimacy in the Context of Cancer 75

conducted by the authors, revealed that successful re-negotiation of intimacy post-cancer was associated with good communication and positive relationship context (Gilbert et al.,

Until recently, research examining the impact of cancer on sexual wellbeing and intimacy has focused on the physical changes (Wilmoth, 2001), using quantitative methods of data collection – primarily surveys. Whilst quantitative methods can provide information on changes in large samples of individuals, they negate the lived experience and negotiation of sexual wellbeing after cancer (Gilbert et al., 2010b). At the same time, research has focused narrowly on ability to engage in satisfying sexual activity, satisfaction with the frequency of that activity (Wilmoth, 2001, Hensen, 2002), and the level of their sexual 'dysfunction' postcancer, where functional sexuality is narrowly conceptualised as penile/vaginal intercourse (Fobair et al., 2006). Recent research has shown, however, that engaging in sexual intercourse may not be the primary focus of sexual concern after a cancer diagnosis, and that engagement in sexual intercourse does not necessary equate to sexual satisfaction (Wilmoth, 2001). Moreover, the primary focus on the physical effects of cancer or cancer treatment on sexual behaviour assumes that the experience of sexuality is limited to its corporeal dimensions, negating the influence of the social and relational construction of sexuality and illness (Meyerowitz et al., 1999), and the ways in which the meaning of sex is negotiated by

**1.4 Prevention and intervention for issues of sexuality and intimacy post-cancer**  Recognition of sexual changes and their consequences, and of pathways to difficulty, is only the first step: We then need to use this knowledge to develop, and evaluate, programs of prevention and intervention to ameliorate difficulty and facilitate re-negotiation of sexuality post-cancer. Equally, whilst a range of psycho-social interventions have been developed for both people with cancer and their carers, few interventions include consideration of sexuality and intimacy, and even if they do, sexuality is positioned as merely one aspect of the cancer experience that couples need assistance with (e.g. Helgeson et al., 2006, Wardle et al., 2003). It has thus been argued that there is a need for psycho-education, which focuses specifically on the effects of cancer and its treatments on sexuality and intimacy (Rees et al., 1998). Since 2003, psychosocial guidelines for the care of people with cancer include recognition of the need for support in relation to changes in sexual functioning post-cancer (Initiative, 2003). However, these guidelines do not provide practical strategies for the application of such support in clinical practice, and sexuality is still rarely addressed by

Equally, those psycho-educational interventions that do exist tend to focus on restoring sexual functioning, rather than on examining the quality of intimate physical contact, or renegotiation of sexual relationships through the development of alternative practices (Hordern et al., 2007b). Interventions also focus on 'sexual' cancers, such as prostate (Manne et al., 2004), or breast cancer (Manne et al., 2007, Marcus et al., 1998, Lethborg et al., 2003), with little offered to address the needs and concerns of couples living with other types of cancer, and no analysis of the relative efficacy of interventions across cancer types. This chapter will address this significant gap in the research literature, by outlining the issues that need to be considered in psycho-educational interventions which address issues of

2010a).

individuals (Gilbert et al., 2010a).

health professionals (Hordern et al., 2007b).

intimacy and sexuality with people with cancer and their partners.

### **1.2 The experience of cancer on partners' sexuality**

Whilst the experiences of partners are often neglected in research on sexuality and intimacy post-cancer (Reichers, 2004), there is growing acknowledgement of their unmet needs in this area (De Groot et al., 2005, Perez et al., 2002, Soothill et al., 2003). Reported disruptions, include decreases in their own sex drive; fear of initiating sex with their partner; difficulty regaining a level of 'normality' within the sexual relationship; and feeling unwanted and unattractive because of cessation of sex (Maughan et al., 2002, Harden et al., 2002, Sanders et al., 2006).

Whilst the inclusion of partners in research on sexuality and cancer goes someway to addressing the issue of 'carer blindness' (Parker, 1990), one of the limitations of existing research in this area is the focus on cancers that affect sexual organs, primarily prostate, breast and gynaecological cancer. There is a need for research examining the experiences of partners across a range of cancer types, as cancers that do not involve parts of the body designated as 'sexual' may also impact on sexuality (Reichers, 2004). Equally, the focus of research to date has been on the physiological effects of cancer and its treatment upon the sexuality of partners. However, sexuality is a material-discursive phenomenon (Ussher, 1997a), and thus the dynamics of the care-giving relationship, and social constructions surrounding what constitutes 'appropriate' or 'taboo' sexual conduct post-cancer, may also interfere with a couples' sexual relationship. Partners who provide a great deal of intimate physical care to the person with cancer (such as helping with toileting or feeding) can experience difficulties in continuing to see them as a sexual person (Pope, 1999), repositioning them as a 'patient' (Kelly, 1992) or as asexual (D'Ardenne, 2004).

Broader cultural constructions of normative sexuality may also be influential in determining the ability of couples to renegotiate sexuality and intimacy post-cancer, particularly when sexual intercourse is no longer possible. As Judith Butler (1993) has argued, our understanding of sexual subjectivity is confined within a 'heterosexual matrix', within which masculinity and femininity are performed through engagement in normative sexual practices, described as the "coital imperative" (Gavey et al., 1999), with failure to perform coitus positioned as 'dysfunction', and other practices as not "real sex" (Few, 1997). This provides a theoretical framework for understanding why many heterosexual couples who cannot physiologically engage in sexual intercourse following diagnosis and treatment of cancer cease all expression of sexual intimacy. It also suggests that the dynamics and pressures of the caring role, as well as constructions and beliefs about what is acceptable or appropriate sexually post-cancer, are worthy of investigation across cancer types. This is one of the aims of the present chapter.

#### **1.3 Pathways to difficulty or re-negotiation of sexuality post-cancer**

Much of the existing research in this area simply documents changes in sexuality and intimacy post-cancer, however, there have been some attempts to examine pathways to difficulty or re-negotiation, primarily within a uni-linear model, with each study focusing on one specific construct. Qualitative research has reported associations between cessation of sexuality and intimacy post-cancer and difficulties in couple communication about sexual matters (Arrington, 2003, Foy et al., 2001, Holmberg et al., 2001), often for fear of creating feelings of guilt in the person with cancer (Kuyper et al., 1998), and one quantitative study reported an association between communication, relationship satisfaction, and sexuality (Hannah et al., 1992). Equally, interviews with partners of a person with cancer, recently

Whilst the experiences of partners are often neglected in research on sexuality and intimacy post-cancer (Reichers, 2004), there is growing acknowledgement of their unmet needs in this area (De Groot et al., 2005, Perez et al., 2002, Soothill et al., 2003). Reported disruptions, include decreases in their own sex drive; fear of initiating sex with their partner; difficulty regaining a level of 'normality' within the sexual relationship; and feeling unwanted and unattractive because of cessation of sex (Maughan et al., 2002, Harden et al., 2002, Sanders et

Whilst the inclusion of partners in research on sexuality and cancer goes someway to addressing the issue of 'carer blindness' (Parker, 1990), one of the limitations of existing research in this area is the focus on cancers that affect sexual organs, primarily prostate, breast and gynaecological cancer. There is a need for research examining the experiences of partners across a range of cancer types, as cancers that do not involve parts of the body designated as 'sexual' may also impact on sexuality (Reichers, 2004). Equally, the focus of research to date has been on the physiological effects of cancer and its treatment upon the sexuality of partners. However, sexuality is a material-discursive phenomenon (Ussher, 1997a), and thus the dynamics of the care-giving relationship, and social constructions surrounding what constitutes 'appropriate' or 'taboo' sexual conduct post-cancer, may also interfere with a couples' sexual relationship. Partners who provide a great deal of intimate physical care to the person with cancer (such as helping with toileting or feeding) can experience difficulties in continuing to see them as a sexual person (Pope, 1999),

repositioning them as a 'patient' (Kelly, 1992) or as asexual (D'Ardenne, 2004).

**1.3 Pathways to difficulty or re-negotiation of sexuality post-cancer** 

Broader cultural constructions of normative sexuality may also be influential in determining the ability of couples to renegotiate sexuality and intimacy post-cancer, particularly when sexual intercourse is no longer possible. As Judith Butler (1993) has argued, our understanding of sexual subjectivity is confined within a 'heterosexual matrix', within which masculinity and femininity are performed through engagement in normative sexual practices, described as the "coital imperative" (Gavey et al., 1999), with failure to perform coitus positioned as 'dysfunction', and other practices as not "real sex" (Few, 1997). This provides a theoretical framework for understanding why many heterosexual couples who cannot physiologically engage in sexual intercourse following diagnosis and treatment of cancer cease all expression of sexual intimacy. It also suggests that the dynamics and pressures of the caring role, as well as constructions and beliefs about what is acceptable or appropriate sexually post-cancer, are worthy of investigation across cancer types. This is one

Much of the existing research in this area simply documents changes in sexuality and intimacy post-cancer, however, there have been some attempts to examine pathways to difficulty or re-negotiation, primarily within a uni-linear model, with each study focusing on one specific construct. Qualitative research has reported associations between cessation of sexuality and intimacy post-cancer and difficulties in couple communication about sexual matters (Arrington, 2003, Foy et al., 2001, Holmberg et al., 2001), often for fear of creating feelings of guilt in the person with cancer (Kuyper et al., 1998), and one quantitative study reported an association between communication, relationship satisfaction, and sexuality (Hannah et al., 1992). Equally, interviews with partners of a person with cancer, recently

**1.2 The experience of cancer on partners' sexuality** 

al., 2006).

of the aims of the present chapter.

conducted by the authors, revealed that successful re-negotiation of intimacy post-cancer was associated with good communication and positive relationship context (Gilbert et al., 2010a).

Until recently, research examining the impact of cancer on sexual wellbeing and intimacy has focused on the physical changes (Wilmoth, 2001), using quantitative methods of data collection – primarily surveys. Whilst quantitative methods can provide information on changes in large samples of individuals, they negate the lived experience and negotiation of sexual wellbeing after cancer (Gilbert et al., 2010b). At the same time, research has focused narrowly on ability to engage in satisfying sexual activity, satisfaction with the frequency of that activity (Wilmoth, 2001, Hensen, 2002), and the level of their sexual 'dysfunction' postcancer, where functional sexuality is narrowly conceptualised as penile/vaginal intercourse (Fobair et al., 2006). Recent research has shown, however, that engaging in sexual intercourse may not be the primary focus of sexual concern after a cancer diagnosis, and that engagement in sexual intercourse does not necessary equate to sexual satisfaction (Wilmoth, 2001). Moreover, the primary focus on the physical effects of cancer or cancer treatment on sexual behaviour assumes that the experience of sexuality is limited to its corporeal dimensions, negating the influence of the social and relational construction of sexuality and illness (Meyerowitz et al., 1999), and the ways in which the meaning of sex is negotiated by individuals (Gilbert et al., 2010a).

#### **1.4 Prevention and intervention for issues of sexuality and intimacy post-cancer**

Recognition of sexual changes and their consequences, and of pathways to difficulty, is only the first step: We then need to use this knowledge to develop, and evaluate, programs of prevention and intervention to ameliorate difficulty and facilitate re-negotiation of sexuality post-cancer. Equally, whilst a range of psycho-social interventions have been developed for both people with cancer and their carers, few interventions include consideration of sexuality and intimacy, and even if they do, sexuality is positioned as merely one aspect of the cancer experience that couples need assistance with (e.g. Helgeson et al., 2006, Wardle et al., 2003). It has thus been argued that there is a need for psycho-education, which focuses specifically on the effects of cancer and its treatments on sexuality and intimacy (Rees et al., 1998). Since 2003, psychosocial guidelines for the care of people with cancer include recognition of the need for support in relation to changes in sexual functioning post-cancer (Initiative, 2003). However, these guidelines do not provide practical strategies for the application of such support in clinical practice, and sexuality is still rarely addressed by health professionals (Hordern et al., 2007b).

Equally, those psycho-educational interventions that do exist tend to focus on restoring sexual functioning, rather than on examining the quality of intimate physical contact, or renegotiation of sexual relationships through the development of alternative practices (Hordern et al., 2007b). Interventions also focus on 'sexual' cancers, such as prostate (Manne et al., 2004), or breast cancer (Manne et al., 2007, Marcus et al., 1998, Lethborg et al., 2003), with little offered to address the needs and concerns of couples living with other types of cancer, and no analysis of the relative efficacy of interventions across cancer types. This chapter will address this significant gap in the research literature, by outlining the issues that need to be considered in psycho-educational interventions which address issues of intimacy and sexuality with people with cancer and their partners.

Sexuality and Intimacy in the Context of Cancer 77

The Hospital Anxiety and Depression Scale (HADS) (Zigmond et al., 1983), was used to provide a brief measure of the presence of anxiety and depression. The HADS has very well established psychometric properties and is a reliable and valid instrument, with Cronbach alphas at .80 to .93 for the anxiety and .81 to .90 for the depression subscales (Herrmann,

The Caregiver Reaction Assessment Scale (CRA) (Nijboer, 1999) was used to examine caregiver burden. Subscales include: Disrupted Schedule, Financial Problems, Lack of Family Support, Health Problems, and Self-Esteem. As an assessment of both positive and negative reactions to care-giving by partners of patients with cancer, the CRA has been described as a reliable and valid instrument, with Cronbach alpha coefficients ranging from .62 to .83 for the separate subscales (Nijoboer, 1999). A higher score indicates a stronger

Questions on sexuality were also developed for the study, in consultation with the study's steering advisory committee, which comprised of two carer representatives from an independent advocacy organisation (Cancer Voices New South Wales), professionals providing support services to cancer patients and their carers, an oncologist, and researchers working in the field of psycho-oncology, sexuality, health, and gender. Three dichotomous questions (no, yes), asked participants: if they were in a sexual relationship with the patient; have there been changes to the sexual relationship post-cancer; and if so, have issues about

Cronbach alpha coefficients were calculated to assess the internal consistency of HADS and CRA subscales. Cronbach alpha values above .80 were considered estimates of good reliability, while scores above .60 were considered adequate*.* A multivariate logistic regression with backward selection was conducted to determine the relationship between CRA subscales and impact on the sexual relationship to test the research question of the impact of burden of care on changes to the sexual relationship post-cancer. Univariate linear regressions with impact on the sexual relationship as a predictor and HADS Anxiety and Depression subscales as outcome variables, were conducted to assess the association between changes to the sexual relationship and psychological well-being. This analysis excluded data from the 26 bereaved participants, given that the HADS measures psychological well-being over last 7 days. To examine the potential moderating influence of participant gender, age, hours of provided direct care, and cancer type (dichotomised as non-sexual or sexual type), a series of multiple regressions were conducted where interactions with these variables were examined in addition to the main effect of impact on the sexual relationship. Cancer stage was not examined, due to the small cell size in early stage cancer. Equations with continuous predictor variables were centred as suggested by

Two open-ended questionnaire items concerning changes in sexuality post-cancer were: please describe the changes to your sexual relationship; and, if your role as carer has made

1997, Janda et al., 2008). Higher scores indicate higher psychological disturbances.

**2.2 Quantitative methods and analyses** 

sexuality been discussed with a health care provider?

Howell (2002). An alpha level of .05 was used for all analyses.

**2.3 Qualitative methods and analysis** 

**2.3.1 Measures** 

**2.2.1 Measures** 

impact of the attribute.

**2.2.2 Statistical analyses** 
