Abstract and Introduction
Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.
It is now widely recognized that cancer and its treatment can have a significant effect on the quality of life of both people with cancer and family members providing informal care, particularly their intimate partner. Sexuality and intimacy are important aspects of quality of life, 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. These changes can be experienced as the most significant in the life of a person with cancer and can lead to emotional distance between couples, as well as feelings of isolation, anxiety, depression, or inadequacy.
Whereas the experiences of partners are often neglected in research on sexuality and intimacy after cancer, there is growing acknowledgment of their unmet needs in this area. 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. It has also been argued that when sexual intercourse ceases in the context of illness, touching and other forms of affectionate physical contact also diminish because of a perception among some couples that these forms of affection necessarily lead to sexual intercourse, which is either not possible or deemed inappropriate.
One of the limitations of research in this area is the focus on experiences of sexuality after cancer that affects the reproductive organs. 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" or "reproductive" may also impact on sexuality. A further related limitation is the focus on the physiological effects of cancer and its treatment upon the sexuality of partners. However, the dynamics of the caregiving relationship and social constructions surrounding what constitutes appropriate sexual conduct after cancer may also interfere with a couples' sexual relationship. For example, 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 and reposition them as a "patient" or as asexual. Broader cultural constructions of normative sexuality may also be influential in determining the ability of couples to renegotiate sexuality and intimacy after cancer, particularly when sexual intercourse is no longer possible. As Judith Butler 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," with failure to perform coitus positioned as "dysfunction" and other practices referred to as not "real sex." This provides a theoretical framework for understanding why many heterosexual couples who cannot physiologically engage in sexual intercourse after 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 after cancer, are worthy of investigation.
The aim of the present study was to examine the subjective experience of sexuality and intimacy after the diagnosis and treatment of cancer for partners of a person with cancer across a range of cancer types using qualitative methods within a critical realist epistemological standpoint. Advocated as the way forward for research examining health in a sociocultural context, critical realism recognizes the materiality of the body and other aspects of experience (such as cancer, cancer treatments, the caring role) but conceptualizes this materiality as always mediated by culture, language, and subjectivity. A variety of methodological approaches, both qualitative and quantitative, are valued equally within a critical realist approach, and there is acceptance of the legitimacy of subjective experience, often marginalized in mainstream health psychology research.