Janette Perz

Changes to sexual well-being and intimacy after breast cancer.

Background: Changes to sexual well-being can be one of the most problematic aspects of life after breast cancer, with the impact lasting for many years after treatment, associated with serious physical and emotional adverse effects. However, the primary focus on corporeal changes negates the influence of social and relational constructions of sexuality and illness and the ways in which the meaning of sex is negotiated by individuals and within relationships. Objective: The aim of this study was to examine changes to sexuality and intimate relationships in individuals who have experienced breast cancer, from a material-discursive-intrapsychic perspective, using mixed-method analysis. Methods: An online survey containing 47 quantitative and qualitative items was completed by 1965 Australian individuals with breast cancer. Participants were 98% women, with a mean age of 54 years. Results: Decreases in sexual frequency, response, and satisfaction were attributed to a range of factors, including tiredness and pain, psychological distress and body image, and medically induced menopausal changes such as vaginal dryness, hot flushes, and weight gain. Predominant concerns identified in the qualitative analysis were emotional consequences, physical changes, feeling unattractive or lacking femininity, reconciliation of self to changes, and impact on partner or relationship. Conclusions: These findings support and extend previous research that reports significant changes in sexual well-being after diagnosis and treatment for breast cancer. Implications for Practice: The findings are of significance to clinicians because sexual well-being is central to psychological well-being and quality of life, and sexual intimacy has been found to make the experience of cancer more manageable and to assist in the recovery process.

Sexuality after gynaecological cancer: a review of the material, intrapsychic, and discursive aspects of treatment on women's sexual-wellbeing.

Research in the area of gynaecological cancer has increasingly examined changes to womens sexuality, with the impact of treatment on sexual wellbeing considered particularly important. The objective of this paper is to review research on gynaecological cancer and sexuality from the years 1990 to 2011. Research has documented a range of post-treatment anatomical and physical changes to womens sexual wellbeing, including changes to sexual desire, pleasure, orgasm, vaginal lubrication, genital sensitivity, arousal, and frequency of sex. Womens intrapsychic experiences of changes to sexuality include anxiety, depression, distress, and negative perceptions of sexual identity and body image. Socially constructed discourses surrounding gender and sexuality also shape womens experiences of their sexual wellbeing post-gynaecological cancer and treatment, with many women feeling a loss of womanhood and femininity with the removal of, or changes to, their reproductive organs. Finally, womens relationship context, pattern of couple communication, and partner support are associated with womens ability to cope with changes to sexuality post-gynaecological cancer. Given that sexuality is an important part of quality of life, it is important that health professionals actively communicate information to women and their partner about the effects of treatment on sexual wellbeing, in order to legitimate and normalise sexuality in this context. It is concluded that research in the area of gynaecological cancer and sexuality needs to acknowledge not only the physical/anatomical/material effects of cancer treatments, but also womens intrapsychic experiences of changes to sexuality, her relationship context, and the role of gendered discourses in shaping womens experiences of sexuality post-gynaecological cancer and treatment.

Renegotiating Sexuality and Intimacy in the Context of Cancer: The Experiences of Carers

There is a growing body of evidence to show that cancer can result in dramatic changes in sexuality, sexual functioning, and intimate couple relationships, with significant implications for both quality of life and psychological well-being. However, the experiences of intimate partners are often neglected in research on sexuality and intimacy in the context of cancer. This study used a material-discursive framework and a qualitative methodology to investigate the ways in which intimacy and sexuality are renegotiated in the context of cancer, and what factors are associated with successful or unsuccessful renegotiation, from the perspective of partners caring for a person with cancer. Twenty participants were interviewed, across a range of cancer types, stages, and age groups. Eleven participants reported that they were unable to negotiate other ways of being sexually intimate when penetrative sexual intercourse was no longer physiologically possible or desirable. Nine were able to renegotiate sexual intimacy in the context of cancer to include practices previously positioned as secondary to “real sex,” such as mutual masturbation, self masturbation, manual stimulation, oral sex, massage, the use of vibrators, kissing, and hugging. Grounded theory analysis identified two themes associated with renegotiation: “Alternative” sexual practices-redefining sexual intimacy, and couple communication and relationship context. Difficulties in renegotiation were associated with adherence to the coital imperative, sexual relationship or communication problems which existed prior to cancer, and the positioning of the person with cancer as a child or an asexual sick patient rather than a sexual partner. The implications for health professional intervention to ameliorate changes to sexuality in the context of cancer are discussed.

Talking about sex after cancer: A discourse analytic study of health care professional accounts of sexual communication with patients

There is consistent evidence that health care professionals (hcps) are not addressing the sexual information and support needs of people with cancer. Thirty-eight Australian hcps across a range of professions working in cancer care were interviewed, to examine constructions of sexuality post-cancer, the subject positions adopted in relation to sexual communication, and the ways in which discourses and subject positions shape information provision and communication about sexuality. Participants constructed sexual changes post-cancer in physical, psychological and relational terms, and positioned such changes as having the potential to significantly impact on patient and partner well-being. This was associated with widespread adoption of a discourse of psychosocial support, which legitimated discussion of sexual changes within a clinical consultation, to alleviate distress, dispel myths and facilitate renegotiation of sexual practices. However, this did not necessarily translate into patient-centred practice outcomes, with the majority of participants positioning personal, patient-centred and situational factors as barriers to the discussion of sex within many clinical consultations. This included: absence of knowledge, confidence and comfort; positioning sex as irrelevant or inappropriate for some people; and limitations of the clinical context. In contrast, those who did routinely discuss sexuality adopted a subject position of agency, responsibility and confidence.

Information needs associated with changes to sexual well-being after breast cancer

AIMS This article is the report of a study of sexual information needs, experiences of obtaining such information, and patient communication about sexuality with health professionals, after breast cancer. BACKGROUND Changes to sexuality after breast cancer can significantly affect quality of life. However, information needs associated with such changes are little understood, resulting in the absence of a knowledge base to guide information provision aimed at preventing or ameliorating distress. DESIGN This study employs a mixed method analysis, integrating qualitative and quantitative responses to an online survey. METHOD Participants were 1965 individuals with breast cancer (98·8% female) drawn from the membership of a national Australian breast cancer organization. The data were collected over 2 weeks in December 2010. RESULTS Eighty-five per cent of participants reported changes to sexual well-being after breast cancer, with 68% wanting information on such changes, primarily in a written form. Information on physical changes, sexual response, relationship issues, psychological consequences, and body image or identity, were rated as very important by a substantial proportion of participants. Only 41% had obtained such information; however, 65% had spoken about sexual changes, to partner (76%), G.P. (49%), friend/relative (47%), oncologist (39%), or breast-care nurse (21%). Ratings of satisfaction with the discussion were highest for breast-care nurses (60%) and lowest for oncologists (34%). CONCLUSION These findings provide clinicians and cancer organizations with specific suggestions about sexual information needs after breast cancer and the modalities which are preferred, to prevent and ameliorate distress.

Strength through adversity: Bereaved cancer carers' accounts of rewards and personal growth from caring

OBJECTIVE Many studies have identified negative and distressing consequences experienced by informal cancer carers, but less attention has been given to positive and beneficial aspects of caring. This qualitative study examined the positive aspects of caring as subjectively constructed by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. METHOD Twenty-three bereaved informal cancer carers were interviewed, and their accounts were analyzed using a thematic analytical approach from a phenomenological perspective. RESULTS The participants were able to identify positive and beneficial aspects of caring. These included the discovery of personal strength, through adversity, acceptance, and necessity; the deepening of their relationship with the person for whom they cared; and personal growth through altered relationships with others and altered perspectives on living. Many participants gave accounts of focusing on these positive benefits when they reflected on their caring experiences. SIGNIFICANCE OF RESULTS We concluded that benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world. This has implications for the development of interventions for informal cancer carers and for those who are bereaved following caring.

Feeling well and talking about sex: psycho-social predictors of sexual functioning after cancer

BackgroundChanges to sexual wellbeing are acknowledged to be a long-term negative consequence of cancer and cancer treatment. These changes can have a negative effect on psychological well-being, quality of life and couple relationships. Whilst previous conclusions are based on univariate analysis, multivariate research can facilitate examination of the complex interaction between sexual function and psycho-social variables such as psychological wellbeing, quality of life, and relationship satisfaction and communication in the context of cancer, the aim of the present study.MethodSix hundred and fifty seven people with cancer (535 women, 122 men) and 148 partners (87 women, 61 men), across a range of sexual and non-sexual cancers, completed a survey consisting of standardized measures of sexual functioning, depression and anxiety, quality of life, relationship satisfaction, dyadic sexual communication, and self-silencing, as well as ratings of the importance of sex to life and relationships.ResultsMen and women participants, reported reductions in sexual functioning after cancer across cancer type, for both people with cancer and partners. Multiple regression analysis examined psycho-social predictors of sexual functioning. Physical quality of life was a predictor for men and women with cancer, and for male partners. Dyadic sexual communication was a predictor for women with cancer, and for men and women partners. Mental quality of life and depression were also predictors for women with cancer, and the lower self-sacrifice subscale of self-silencing a predictor for men with cancer.ConclusionThese results suggest that information and supportive interventions developed to alleviate sexual difficulties and facilitate sexual renegotiation should be offered to men and women with both sexual and non-sexual cancers, rather than primarily focused on individuals with sexual and reproductive cancers, as is the case currently. It is also important to include partners in supportive interventions. Interventions aimed at improving sexual functioning should include elements aimed at improving physical quality of life and sexual communication, with a focus on psychological wellbeing also being important for women with cancer.

Renegotiating Sex and Intimacy After Cancer Resisting the Coital Imperative

Background: Previous research on sex and intimacy in the context of cancer has focused on documenting sexual changes and difficulties, primarily focusing on heterosexual individuals who have sexual or reproductive cancers. Analyses of sexual renegotiation and the social construction of sex are largely absent from the research agenda. Objective: The objective of this study was to explore renegotiation of sex in individuals with cancer, and in partners, across a broad range of cancer types and relational contexts. Methods: Semistructured interviews were conducted with 44 people with cancer (23 women, 21 men) and 35 partners (18 women, 17 men), 86% of whom identified as heterosexual. The data were analyzed with theoretical thematic analysis, from a material-discursive-intrapsychic perspective. Results: Renegotiation of sex or intimacy was reported by 70% of participants, reflected in 3 themes: “resisting the coital imperative: redefining ‘sex,’” “resisting the coital imperative: embracing intimacy,” and “adopting the coital imperative: refiguring the body through techno-medicine.” The importance of relational context was reflected in the theme “the inter-subjective nature of sexual re-negotiation: relationship context and communication.” Conclusions: Whereas previous research has focused on embodied changes associated with sexuality after cancer, or their psychological consequences, the findings of the present study suggest that hegemonic constructions of “sex,” in particular the coital imperative, are central to the experience and negotiation of sex and intimacy after cancer. Implications for Practice: Resistance of the coital imperative should be a fundamental aspect of information and support provided by health professionals who seek to reduce distress associated with sexual changes after cancer.

A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement.

Constructions of sex and intimacy after cancer: Q methodology study of people with cancer, their partners, and health professionals

BackgroundThe increasing number of individuals living with cancer has led to a focus on the quality of life of survivors, and their families. Sexual wellbeing is a central component of quality of life, with a growing body of research demonstrating the association between cancer and changes to sexuality and intimacy. However, little is known about patient and professional understanding of cancer and sexuality post-cancer. This study was designed to explore the complex perspectives that people with personal and professional experience with cancer hold about sexuality in the context of cancer.MethodsAn interview study using Q methodology was conducted with 44 people with cancer, 35 partners of a person with cancer and 37 health professionals working in oncology. Participants were asked to rank-order 56 statements about sexuality and intimacy after cancer and asked to comment on their rankings in a subsequent semi-structured interview. A by-person factor analysis was performed with factors extracted according to the centroid method with a varimax rotation.ResultsA three-factor solution provided the best conceptual fit for the perspectives regarding intimacy and sexuality post-cancer. Factor 1, entitled “communication – dispelling myths about sex and intimacy” positions communication as central to the acceptance of a range of satisfying sexual and intimate practices post-cancer. Factor 2, “valuing sexuality across the cancer journey,” centres on the theme of normalizing the experience of sex after cancer through the renegotiation of sex and intimacy: the development of alternative sexual practices. Factor 3, “intimacy beyond sex,” presents the view that even though sex may not be wanted, desired, or even possible following cancer, quality of life and relationship satisfaction are achieved through communication and non-genital intimacy.ConclusionsThis study has demonstrated the complexity of perspectives about sexuality and intimacy post cancer, which has practical implications for those working in cancer care and survivorship. Therapists and other health professionals can play an important role in ameliorating concerns surrounding sexual wellbeing after cancer, by opening and facilitating discussion of sexuality and intimacy amongst couples affected by cancer, as well as providing information that normalizes a range of sexual and intimate practices.