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ABSTRACT: Men can experience significant changes to their sexuality following the onset of cancer. However, research on men's sexuality post-cancer has focused almost exclusively on those with prostate and testicular cancer, despite evidence that the diagnosis and treatment for most cancers can impact on men's sexuality. This Australian qualitative study explores the experiences of changes to sexuality for 21 men across a range of cancer types and stages, sexual orientations and relationship contexts. Semi-structured interviews were analysed with theoretical thematic analysis guided by a material discursive intra-psychic approach, recognising the materiality of sexual changes, men's intrapsychic experience of such changes within a relational context and the influence of the discursive construction of masculine sexuality. Material changes included erectile difficulty, decreased desire, and difficulty with orgasm. The use of medical aids to minimise the impact of erectile difficulties was shaped by discursive constructions of 'normal' masculine sexuality. The majority of men reported accepting the changes to their sexuality post-cancer and normalised them as part of the natural ageing process. Men's relationship status and context played a key role managing the changes to their sexuality. We conclude by discussing the implications for clinical practice.
Culture Health & Sexuality 05/2013; · 1.55 Impact Factor
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ABSTRACT: 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.
Cancer nursing 11/2012; · 1.88 Impact Factor
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The Medical journal of Australia 04/2012; 196(7):440-1. · 2.81 Impact Factor
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ABSTRACT: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients.
We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory.
Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of 'normal' others, for normalising information and information that facilitated upward identifications.
We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis-in particular, their status as a member of a 'vanishing cohort'-and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. Practice implications: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease.
Psycho-Oncology 02/2011; 21(4):382-91. · 3.34 Impact Factor
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Rachel D Zordan,
Phyllis N Butow,
Laura Kirsten,
Ilona Juraskova,
Amanda O'Reilly,
John Friedsam,
Nataly Bovopolous,
Paul Heinrich,
Margaret Charles, Kim Hobbs,
David Kissane
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ABSTRACT: The literature on cancer support groups supports the provision of ongoing education and training for cancer support group leaders, with evidence suggesting that more skilled and experienced leaders create better outcomes for group members. To address support and training needs reported by leaders, three novel interventions were developed and pilot-tested. These included a leaders' website and discussion forum, DVD and manual, and a 2-day training workshop.
The interventions were developed using a combination of literature review, expert consensus, and consumer feedback. A convenience sample of ten leaders pilot-tested the Website and discussion forum. Using a mixed-method approach, evaluation of the workshop and the DVD and manual was conducted with 35 leaders.
Overall, satisfaction with all aspects of the Website and discussion forum was high. Analysis of the quantitative data revealed extremely high satisfaction with the workshop and DVD and manual. The qualitative responses of workshop participants further supported the quantitative findings with enhanced knowledge, understanding, and confidence reported by leaders.
All three interventions exhibited a high degree of user acceptance, regardless of the skill or experience of the cancer support group leader. The overall positive findings from the evaluation of the leader Website and discussion forum, the DVD and manual, and the workshop for cancer support group leaders provides evidence to support more rigorous evaluation of these resources in a randomized controlled trial.
Supportive Care in Cancer 01/2011; 20(3):445-54. · 2.09 Impact Factor
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ABSTRACT: Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the "medical gaze", and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test's subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that--once it has relapsed--will certainly kill them in the near future.
Social Science [?] Medicine 11/2010; 71(9):1548-56. · 2.70 Impact Factor
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ABSTRACT: Cancer support groups are an important source of support for cancer patients, yet little is known about the challenges and training needs of both professionally trained and untrained leaders. The aim of this study was to discover the difficulties experienced and training desired by cancer support group leaders.
Twenty-seven leaders of 34 cancer support groups participated in focus groups or individual interviews. Groups were purposively selected as representative of 173 support groups identified in New South Wales which were for adults with cancer and/or their adult carers and were not therapeutic or education-only groups.
Difficulties identified included dealing with people's different communication styles and needs; dealing with recurrence, metastases and death; practical issues, including resources, setting the programme and funding security; maintaining personal balance and preventing burn out; establishing group credibility; dealing with group cycles; and leading groups in rural areas. Leaders also identified benefits and rewards from group leadership such as contributing to others' well-being, self-development and insight into others' lives. Non-professionally trained leaders experienced more difficulties, particularly in dealing with group process and practical issues.
Difficulties identified were related both to working with a cancer population specifically and to working with groups in general. While some issues were common to both health professionals and non-health professionals, non-health professionals reported greater supportive needs. Clear guidelines, targeted training and development of better methods of support to reduce the stress and burn out experienced by group leaders are needed.
Supportive Care Cancer 08/2006; 14(7):770-8. · 2.60 Impact Factor
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ABSTRACT: Cancer support groups are an important source of support for cancer patients, yet little is known about the characteristics of, and barriers to, effective leadership, and the training needs of both professionally trained and untrained leaders. This study explored the views of 179 leaders of 184 cancer support groups in NSW, Australia, regarding these issues. Four hundred and sixteen members of 50 groups selected from the larger cohort completed questionnaires eliciting the importance of group processes, including leader qualities, and satisfaction with group leadership. Finally, members of nine groups participated in focus groups regarding effective group processes. The importance of the leader(s) was emphasized in all stages of the research. Fifty-nine percent of group leaders were currently experiencing a difficulty, primarily related to infrastructure or group process. Three characteristics of effective leaders were identified: educational qualities, facilitation skills, and personal qualities. There is clearly a need to develop and evaluate effective interventions to maintain leaders in these roles, if the proven benefits for cancer patients are to be protected.
Social Work in Health Care 02/2005; 42(2):39-55. · 0.62 Impact Factor
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ABSTRACT: Empathic and informative interactions with health professionals are important for the well-being of people with cancer. However, there is a dearth of research examining the construction and experience of interactions with health professionals from the perspective of informal cancer carers.
The aim of this study was to explore how cancer carers subjectively position their experiences of interactions with health professionals, in particular, their construction of experiences as positive or negative, and the perceived consequences of such interactions. Positioning theory is used to examine how the sociomedical construction of health professionals shapes carers' experiences of interactions with them.
Semistructured interviews were carried out with 53 informal cancer carers across a range of cancer types and stages, analyzed using thematic decomposition.
Carers positioned positive interactions as those involving health professionals who were warm and genuine, accessible and approachable, and who made carers feel accepted and comfortable. In the case of allied health professionals, the provision of a space for carers' cathartic release was also constructed positively. Negative interactions were positioned as those involving poor communication and a lack of empathy, poor or absent information provision, and absence of guidance about additional support.
Positive experiences with health professionals were positioned by carers as leading to feelings of empowerment, value, and recognition, and negative interactions as leading to distress, anger, frustration, and feelings of isolation.
It is important for health professionals to be supportive of carers' needs, to communicate in an empathic manner, to be approachable and accessible, and to recognize carers needs and concerns.
Cancer nursing 33(6):E1-9. · 1.88 Impact Factor
