Jane M. Ussher

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.

Are We Medicalizing Women’s Misery? A Critical Review of Women’s Higher Rates of Reported Depression

Epidemiological research consistently reports that women experience higher rates of depression than men. Competing biomedical, psychological and sociocultural models adopt a realist epistemology and a discourse of medical naturalism to position depression as a naturally occurring pathology within the woman, caused by biology, cognitions or life stress. Feminist critics argue that this medicalizes women’s misery, legitimizes expert intervention, and negates the political, economic and discursive aspects of experience. However, the alternative model of social constructionism may appear to dismiss the ‘real’ of women’s distress, and deny its material and intrapsychic concomitants, as well as negate relevant research findings. A critical review of sociocultural and psychological research on women’s depression is conducted. It is argued that a critical-realist epistemology allows us to acknowledge the material-discursive-intrapsychic concomitants of experiences constructed as depression, without privileging one level of analysis above the other, in order to understand women’s higher rates of reported depression.

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.

The Role of Premenstrual Dysphoric Disorder in the Subjectification of Women

This paper will examine the way in which premenstrual symptomatology has been represented and regulated by psychology and psychiatry. It questions the “truths” about womens premenstrual experiences that circulate in scientific discourse, namely the fictions framed as facts that serve to regulate femininity, reproduction, and what it is to be “woman.” Hegemonic truths that define Premenstrual Dysphoric Disorder (PMDD) and its nosological predecessor Premenstrual Syndrome (PMS) are examined to illustrate how regimes of objectified knowledge and practices of “assemblage” come to regulate individual women through a process of subjectification. Five interconnected “truths” are presented as objects of scrutiny: PMDD is a thing that can be objectively defined and measured; PMDD is a pathology to be eradicated; PMDD is caused and can be treated by one factor; PMDD is a bodily phenomenon; PMDD causes womens problems or symptoms. I examine the way in which these hegemonic truths function in framing the reproductive body as a cause of disorder or distress that leads women to interpret premenstrual experiences within a pathological framework deserving medical or psychological treatment. Finally, I offer an alternative framework drawing on Eastern models of selfhood that provides a more empowering model of womens premenstrual experiences.

Gender differences in the construction and experience of cancer care: the consequences of the gendered positioning of carers.

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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.