Kim Hobbs

Breast cancer survivors’ supportive care needs 2–10 years after diagnosis

Goals of the workA significant proportion of breast cancer patients experience psychosocial morbidity after treatment, although their longer-term outcomes and supportive care service needs have not been comprehensively documented. The aim of this study was to identify longer-term outcomes and supportive care needs in disease-free breast cancer survivors.Materials and methodsOne hundred seventeen patients who had been diagnosed with breast cancer 2–10 years earlier completed questionnaires to assess psychosocial outcomes including supportive care needs, psychological distress, and quality of life (QoL).Main resultsQoL and depression scores were consistent with community rates although anxiety scores were higher. Approximately two thirds of survivors reported at least one unmet need, most frequently concerning existential survivorship issues, thereby highlighting the unique needs of survivors. Years since diagnosis was not correlated with need levels. Survivors classified as clinically anxious reported over three times as many unmet needs and survivors classified as depressed reported over two and a half times as many unmet needs. Positive outcomes were frequently reported.ConclusionsThe findings have direct clinical relevance: irrespective of years since diagnosis, comprehensive and extended supportive care services are required to identify breast cancer survivors in need of supportive care interventions and remediate high levels of anxiety.

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.

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.

Men's experiences of sexuality after cancer: a material discursive intra-psychic approach

Men can experience significant changes to their sexuality following the onset of cancer. However, research on mens 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 mens 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, mens 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. Mens relationship status and context played a key role managing the changes to their sexuality. We conclude by discussing the implications for clinical practice.

Who helps the leaders? Difficulties experienced by cancer support group leaders

Goals of workCancer 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.Patients and methodsTwenty-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.Main resultsDifficulties 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.ConclusionsDifficulties 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.

Social Work Intervention Research With Adult Cancer Patients: A Literature Review and Reflection on Knowledge-Building for Practice.

The results of a literature review of social work intervention research with adult cancer patients found only a small number of studies conducted by social work researchers. The findings of the review are presented followed by a reflective discussion on the nature of knowledge-building and research knowledge for practice. Knowledge building is considered as a continuous, negotiated process within communities of practice focused on psychosocial perspectives that draw on a range of knowledge sources. Epistemology, worldviews and research orientations are considered along with the values and stance of social work, all of which create the domain of the practice-researcher.

The perils of a vanishing cohort: A study of social comparisons by women with advanced ovarian cancer

Objective: 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.

The characteristics of oncology social work in Australia: Implications for workforce planning in integrated cancer care

To describe the demographics, professional characteristics, self‐reported professional development needs and research involvement of oncology social workers in Australia and to describe perceived barriers to provision of quality psychosocial care.

Beyond evidence: reappraising use of CA-125 as post-therapy surveillance for ovarian cancer

The Medical Journal of Australia ISSN: 0025729X 16 April 2012 196 7 440-441 ©The Medical Journal of Australia 2012 www.mja.com.au Perspective ovarian cancer in clinical complete remission and with a normal CA-125 following initial therapy. It found that using CA-125 surveillance every 3 months as the basis for recommencing treatment did not improve survival or quality of life. Importantly, it also found that women who received delayed treatment following the onset of symptoms reported a higher quality of life than those treated earlier.4 This study has been the subject of extensive analysis, Reconsidering the place of disease monitoring after treatment

Describing oncology social work and practice in Australia

The current study aimed to improve the ecological validity of objective cognitive assessment in two ways: (1) by testing prospective memory, a type of cognition that involves remembering to carry out an action when there are distracting ongoing tasks, and (2) by using a virtual reality environment that is more similar to participants’ everyday cognitive challenges than standard neuropsychological tests. The study examined whether prospective memory (PM) performance among breast cancer survivors (BCS) exposed to chemotherapy differed from that seen in a demographically matched control group. Twenty-six female survivors of breast cancer who received chemotherapy that finished 0.5-5 years prior to the time of testing were compared with 25 age- and education-matched women with no history of cancer. Participants completed event-, time- and activity-based PM measures; standardized neuropsychological tests assessing attention and concentration, executive function and verbal memory; and self-report measures of cognitive dysfunction and PM failures. The BCS group showed significantly slower speed of processing on the test of attention and concentration as well as trends towards slower dual task performance. The BCS group reported significantly more cognitive complaints and PM failures than the control group on five of six self-report measures. The groups did not differ on other prospective memory or neuropsychological measures. PM tasks correlated significantly with both standard neuropsychological tasks and with self-reported cognitive function in everyday life. The results provide some evidence for correspondence between more ecologically valid objective measures and self-reported cognitive impairment following chemotherapy treatment. Further research into PM performance in this clinical group appears warranted.