Development of a Resource for Parents with Advanced Cancer: What do Parents Want?

OBJECTIVE: Parents coping with a diagnosis of advanced cancer experience distress and guilt about the impact of the disease on their children but report that there are few resources specific to advanced disease to guide and support them in discussions with their children. Although some resources have been developed to assist parents with advanced cancer, it appears that these are not widely disseminated. METHODS: To determine the need for a brief resource that could be given to parents at the point of diagnosis of advanced cancer, including its content, in-depth interviews were conducted with eight women with advanced breast cancer. RESULTS: Women confirmed that they had received minimal assistance from health professionals in discussing the diagnosis with their children, and even when professional counselors were accessed they were not always attuned to the specific needs of parents with advanced cancer. Women felt frustrated that information they did access focused on early disease and lacked the details women felt they needed in coping with advanced cancer. Women felt that there was a need for a brief resource that reassured parents about the impact of the cancer on their children, including practical strategies to help them cope and examples of the ways other parents had responded to difficult questions such as about parental death. A draft resource was developed, critically reviewed by the participants, and their comments incorporated into a final version. SIGNIFICANCE OF RESULTS: This article expands on the themes highlighted by women as important to assist parents with advanced cancer, including the final resource that was developed.

Shall we dance? The story of The Radiance Dance Project

Community workers are often described as unsung heroes who work for, with, and alongside others in order to make qualitative differences to the communities they serve. This paper reports on the story of a community based arts educator, Morgan Jai-Morincome, winner of the ACT Adult Learners Week Award for an outstanding program in 2007. This program, referred to as The Radiance Dance Project, is an inclusive performance project open to women with and without disabilities that culminates in a yearly performance. Via an interview with Morgan, observations of a workshop she provided for the women in her 2009 program, and a viewing of a DVD of the 2008 dance performance, this case study provides an illustration of the power of arts based educative processes for breaking down barriers between people with and without disabilities. It draws upon constructs from ethical leadership theory and empowerment theory to interpret her ideas and practices.

Prevalence of upper-body symptoms following breast cancer and its relationship with upper-body function and lymphoedema

This investigation describes the prevalence of upper-body symptoms in a population-based sample of women with breast cancer (BC) and examines their relationships with upper-body function (UBF) and lymphoedema, as two clinically important sequelae. Australian women (n=287) with unilateral BC were assessed at three-monthly intervals, from six to 18 months post-surgery (PS). Participants reported the presence and intensity of upper-body symptoms on the treated side. Objective and self-reported UBF and lymphoedema (bioimpedance spectroscopy) were also assessed. Approximately 50% of women reported at least one moderate-to-extreme symptom at 6- and at 18-months PS. There was a significant relationship between symptoms and function (p<0.01), whereby perceived and objective function declined with increasing number of symptoms present. Those with lymphoedema were more likely to report multiple symptoms and presence of symptoms at baseline increased risk of lymphoedema (ORs>1.3, p=0.02). Although, presence of symptoms explained only 5.5% of the variation in the odds of lymphoedema. Upper-body symptoms are common and persistent following breast cancer and are associated with clinical ramifications, including reduced UBF and increased risk of developing lymphoedema. However, using the presence of symptoms as a diagnostic indicator of lymphoedema is limited.

Caveat Anicula! Beware of the Quiet Little Old Ladies : Demographics, Pharmacotherapy, Survival and Readmissions in a 10 Year Cohort of Heart Failure Patients with Preserved Systolic Function

Objective--To determine whether heart failure with preserved systolic function (HFPSF) has different natural history from left ventricular systolic dysfunction (LVSD). Design and setting--A retrospective analysis of 10 years of data (for patients admitted between 1 July 1994 and 30 June 2004, and with a study census date of 30 June 2005) routinely collected as part of clinical practice in a large tertiary referral hospital.Main outcome measures-- Sociodemographic characteristics, diagnostic features, comorbid conditions, pharmacotherapies, readmission rates and survival.Results--Of the 2961 patients admitted with chronic heart failure, 753 had echocardiograms available for this analysis. Of these, 189 (25%) had normal left ventricular size and systolic function. In comparison to patients with LVSD, those with HFPSF were more often female (62.4% v 38.5%; P = 0.001), had less social support, and were more likely to live in nursing homes (17.9% v 7.6%; P < 0.001), and had a greater prevalence of renal impairment (86.7% v 6.2%; P = 0.004), anaemia (34.3% v 6.3%; P = 0.013) and atrial fibrillation (51.3% v 47.1%; P = 0.008), but significantly less ischaemic heart disease (53.4% v 81.2%; P = 0.001). Patients with HFPSF were less likely to be prescribed an angiotensin-converting enzyme inhibitor (61.9% v 72.5%; P = 0.008); carvedilol was used more frequently in LVSD (1.5% v 8.8%; P < 0.001). Readmission rates were higher in the HFPSF group (median, 2 v 1.5 admissions; P = 0.032), particularly for malignancy (4.2% v 1.8%; P < 0.001) and anaemia (3.9% v 2.3%; P < 0.001). Both groups had the same poor survival rate (P = 0.912). Conclusions--Patients with HFPSF were predominantly older women with less social support and higher readmission rates for associated comorbid illnesses. We therefore propose that reduced survival in HFPSF may relate more to comorbid conditions than suboptimal cardiac management.

The severity of chorioamnionitis in pregnant sheep is associated with in vivo variation of the surface-exposed multiple-banded antigen/gene of ureaplasma parvum

Ureaplasma species are the bacteria most frequently isolated from human amniotic fluid in asymptomatic pregnancies and placental infections. Ureaplasma parvum serovars 3 and 6 are the most prevalent serovars isolated from men and women. We hypothesized that the effects on the fetus and chorioamnion of chronic ureaplasma infection in amniotic fluid are dependent on the serovar, dose, and variation of the ureaplasma multiple banded antigen (MBA) and mba gene. We injected high- or low dose U. parvum serovar 3, serovar 6, or vehicle intra-amniotically into pregnant ewes at 55 days of gestation (term = 150 days) and examined the chorioamnion, amniotic fluid, and fetal lung tissue of animals delivered by cesarean section at 125 days of gestation. Variation of the multiple banded antigen/mba generated by serovar 3 and serovar 6 ureaplasmas in vivo were compared by PCR assay and Western blot. Ureaplasma inoculums demonstrated only one (serovar 3) or two (serovar 6) MBA variants in vitro, but numerous antigenic variants were generated in vivo: serovar 6 passage 1 amniotic fluid cultures contained more MBA size variants than serovar 3 (P = 0.005),and ureaplasma titers were inversely related to the number of variants (P = 0.025). The severity of chorioamnionitis varied between animals. Low numbers of mba size variants (five or fewer) within amniotic fluid were associated with severe inflammation, whereas the chorioamnion from animals with nine or more mba variants showed little or no inflammation. These differences in chorioamnion inflammation may explain why not all women with in utero Ureaplasma spp. experience adverse pregnancy outcomes.

A sense of control : virtual communities for people with mobility impairments

The purpose of this book is to show why we should be concerned about virtual communities for people with physical, or more particularly mobility, impairments. The well-being model through a virtual community introduced here goes towards advancing the work begun by others, by adding for example a socio-political component. The model presented here provides practical insights into how strategic community investment can support people with disabilities and their families. Virtual communities are about engagement, quality of life and support, not just about information. The role of information technology in building and raising community capacity and social capital in socially and economically disadvantaged communities is also examined. Practical insights are offered into community support for people with chronic illness.

The Australian story : catalysts and inhibitors in the achievement of new women professors

Women are substantially under-represented in the professoriate in Australia with a ratio of one female professor to every three male professors. This gender imbalance has been an ongoing concern with various affirmative action programs implemented in universities but to limited effect. Hence, there is a need to investigate the catalysts for and inhibitors to women’s ascent to the professoriate. This investigation focussed on women appointed to the professoriate between 2005, when a research quality assessment was first proposed, and 2008. Henceforth, these women are referred to as “New Women Professors”. The catalysts and inhibitors in these women’s careers were investigated through an electronic survey and focus group interviews. The survey was administered to new women professors (n=255) and new men professors (n=240) to enable a comparison of responses. However, only women participated in focus group discussions (n=21). An analysis of the survey and interview data revealed that the most critical catalysts for women’s advancement to the professoriate were equal employment opportunities and mentoring. Equal opportunity initiatives provided women with access to traditionally male-dominated forums. Mentoring gave women an insider perspective on the complexity of academia and the politics of the academy. The key inhibitors to women’s career advancement were negative discrimination, the culture of the boys’ club, the tension between personal and professional life, and isolation. Negative discrimination and the boys’ club are problematic because they favour men and marginalise women. The tension between personal and professional life is a particular concern for women who bear children and typically assume the major role in a family for child rearing. Isolation was a concern for both women and men with isolation appearing to increase after ascent to the professoriate. Knowledge of the significant catalysts and inhibitors provides a pragmatic way to orient universities towards redressing the gender balance in the professoriate.

An examination of the relationships between lifestyle factors and mental health among Australian midlife and older women

Background It is well known that lifestyle factors including overweight/obesity, physical inactivity, smoking and alcohol use are largely related with morbidity and mortality of chronic diseases including diabetes and cardiovascular diseases. The effect of lifestyle factors on people’s mental health who have a chronic disease is less defined in the research. The World Health Organisation has defined health as “a state of complete physical, mental and social well-being”. It is important, therefore to develop an understanding of the relationships between lifestyle and mental health as this may have implications for maximising the efficacy of health promotion in people with chronic diseases. Objectives The overall aim of the research was to examine the relationships between lifestyle factors and mental health among Australian midlife and older women. Methodology The current research measured four lifestyle factors including weight status, physical activity, smoking and alcohol use. Three interconnecting studies were undertaken to develop a comprehensive understanding of the relationships between lifestyle factors and mental health. Study 1 investigated the longitudinal effect of lifestyle factors on mental health by using midlife and older women randomly selected from the community. Study 2 adopted a cross-sectional design, and compared the effect of lifestyle factors on mental health between midlife and older women with and without diabetes. Study 3 examined the mediating effect of self-efficacy in the relationships between lifestyle factors and mental health among midlife and older women with diabetes. A questionnaire survey was chosen as the means to gather information, and multiple linear regression analysis was conducted as the primary statistical approach. Results The research showed that the four lifestyle factors including weight status, physical activity, smoking and alcohol use did impact on mental health among Australian midlife and older women. First, women with a higher BMI had lower levels of mental health than women with normal weight, but as women age, the mental health of women who were overweight and obese becomes better than that of women with normal weight. Second, women who were physically active had higher levels of mental health than those who were not. Third, smoking adversely impacted on women’s mental health. Finally, those who were past-drinkers had less anxiety symptoms than women who were non-drinkers as they age. Women with diabetes appeared to have lower levels of mental health compared to women without. However, the disparities of mental health between two groups were confounded by low levels of physical activity and co-morbidities. This finding underlines the effect of physical activity on women’s mental health, and highlights the potential of reducing the gap of mental health by promoting physical activity. In addition, self-efficacy was shown to be the mediator of the relationships between BMI, physical activity and depression, suggesting that enhancing people’s self-efficacy may be useful for mental health improvement. Conclusions In conclusion, Australian midlife and older women who live with a healthier lifestyle have higher levels of mental health. It is suggested that strategies aiming to improve people’s mental health may be more effective if they focus on enhancing people’s self-efficacy levels. This study has implications to both health education and policy development. It indicates that health professionals may need to consider clients’ mental health as an integrated part of lifestyle changing process. Furthermore, given that lifestyle factors impact on both physical and mental health, lifestyle modification should continue to be the focus of policy development.

An exercise intervention for women undergoing chemotherapy for ovarian cancer : feasibility and preliminary outcomes

Exercise interventions during adjuvant cancer treatment have been shown to increase functional capacity, relieve fatigue and distress and in one recent study, assist chemotherapy completion. These studies have been limited to breast, prostate or mixed cancer groups and it is not yet known if a similar intervention is even feasible among women diagnosed with ovarian cancer. Women undergoing treatment for ovarian cancer commonly have extensive pelvic surgery followed by high intensity chemotherapy. It is hypothesized that women with ovarian cancer may benefit most from a customised exercise intervention during chemotherapy treatment. This could reduce the number and severity of chemotherapy-related side-effects and optimize treatment adherence. Hence, the aim of the research was to assess feasibility and acceptability of a walking intervention in women with ovarian cancer whilst undergoing chemotherapy, as well as pre-post intervention changes in a range of physical and psychological outcomes. Newly diagnosed women with ovarian cancer were recruited from the Royal Brisbane and Women’s Hospital (RBWH), to participate in a walking program throughout chemotherapy. The study used a one group pre- post-intervention test design. Baseline (conducted following surgery but prior to the first or second chemotherapy cycles) and follow-up (conducted three weeks after the last chemotherapy dose was received) assessments were performed. To accommodate changes in side-effects associated with treatment, specific weekly walking targets with respect to frequency, intensity and duration, were individualised for each participant. To assess feasibility, adherence and compliance with prescribed walking sessions, withdrawals and adverse events were recorded. Physical and psychological outcomes assessed included functional capacity, body composition, anxiety and depression, symptoms experienced during treatment and quality of life. Chemotherapy completion data was also documented and self-reported program helpfulness was assessed using a questionnaire post intervention. Forty-two women were invited to participate. Nine women were recruited, all of whom completed the program. There were no adverse events associated with participating in the intervention and all women reported that the walking program was helpful during their neo-adjuvant or adjuvant chemotherapy treatment. Adherence and compliance to the walking prescription was high. On average, women achieved at least two of their three individual weekly prescription targets 83% of the time (range 42% to 94%). Positive changes were found in functional capacity and quality of life, in addition to reductions in the number and intensity of treatment-associated symptoms over the course of the intervention period. Functional capacity increased for all nine women from baseline to follow-up assessment, with improvements ranging from 10% to 51%. Quality of life improvements were also noted, especially in the physical well-being scale (baseline: median 18; follow-up: median 23). Treatment symptoms reduced in presence and severity, specifically, in constipation, pain and fatigue, post intervention. These positive yet preliminary results suggest that a walking intervention for women receiving chemotherapy for ovarian cancer is safe, feasible and acceptable. Importantly, women perceived the program to be helpful and rewarding, despite being conducted during a time typically associated with elevated distress and treatment symptoms that are often severe enough to alter or cease chemotherapy prescription.

Australian story : catalysts and inhibitors in the achievement of new women professors

Women are substantially under-represented in the professoriate in Australia with a ratio of one female professor to every three male professors. This gender imbalance has been an ongoing concern with various affirmative action programs implemented in universities but to limited effect. Hence, there is a need to investigate the catalysts for and inhibitors to women’s ascent to the professoriate. This investigation focussed on women appointed to the professoriate between 2005, when a research quality assessment was first proposed, and 2008. Henceforth, these women are referred to as “New Women Professors”. The catalysts and inhibitors in these women’s careers were investigated through an electronic survey and focus group interviews. The survey was administered to new women professors (n=255) and new men professors (n=240) to enable a comparison of responses. However, only women participated in focus group discussions (n=21). An analysis of the survey and interview data revealed that the most critical catalysts for women’s advancement to the professoriate were equal employment opportunities and mentoring. Equal opportunity initiatives provided women with access to traditionally male-dominated forums. Mentoring gave women an insider perspective on the complexity of academia and the politics of the academy. The key inhibitors to women’s career advancement were negative discrimination, the culture of the boys’ club, the tension between personal and professional life, and isolation. Negative discrimination and the boys’ club are problematic because they favour men and marginalise women. The tension between personal and professional life is a particular concern for women who bear children and typically assume the major role in a family for child rearing. Isolation was a concern for both women and men with isolation appearing to increase after ascent to the professoriate. Knowledge of the significant catalysts and inhibitors provides a pragmatic way to orient universities towards redressing the gender balance in the professoriate.

Psychometric properties and health correlates of the Geriatric Anxiety Inventory in Australian community-residing older women

Abstract OBJECTIVE: To assess the psychometric properties and health correlates of the Geriatric Anxiety Inventory (GAI) in a cohort of Australian community-residing older women. METHOD: Cross-sectional study of a population-based cohort of women aged 60 years and over (N = 286). RESULTS: The GAI exhibited sound internal consistency and demonstrated good concurrent validity against the state half of the Spielberger State Trait Anxiety Inventory and the neuroticism domain of the NEO five-factor inventory. GAI score was significantly associated with self-reported sleep difficulties and perceived memory impairment, but not with age or cognitive function. Women with current DSM-IV Generalized Anxiety Disorder (GAD) had significantly higher GAI scores than women without such a history. In this cohort, the optimal cut-point to detect current GAD was 8/9. Although the GAI was designed to have few somatic items, women with a greater number of general medical problems or who rated their general health as worse had higher GAI scores. CONCLUSION: The GAI is a new scale designed specifically to measure anxiety in older people. In this Australian cohort of older women, the instrument had sound psychometric properties.

Safety, feasibility and effects of an individualised walking intervention for women undergoing chemotherapy for ovarian cancer : a pilot study

Background: Exercise interventions during adjuvant cancer therapy have been shown to increase functional capacity, relieve fatigue and distress and may assist rates of chemotherapy completion. These studies have been limited to breast, gastric and mixed cancer groups and it is not yet known if a similar intervention is even feasible among women with ovarian cancer. We aimed to assess safety, feasibility and potential effect of a walking intervention in women undergoing chemotherapy for ovarian cancer. Methods: Women newly diagnosed with ovarian cancer were recruited to participate in an individualised walking intervention throughout chemotherapy and were assessed pre-and post-intervention. Feasibility measures included session adherence, compliance with exercise physiologist prescribed walking targets and self-reported program acceptability. Changes in objective physical functioning (6 minute walk test), self-reported distress (Hospital Anxiety and Depression Scale), symptoms (Memorial Symptom Assessment Scale - Physical) and quality of life (Functional Assessment of Cancer Therapy - Ovarian) were calculated, and chemotherapy completion and adverse intervention effects recorded. Results: Seventeen women were enrolled (63% recruitment rate). Mean age was 60 years (SD = 8 years), 88% were diagnosed with FIGO stage III or IV disease, 14 women underwent adjuvant and three neo-adjuvant chemotherapy. On average, women adhered to > 80% of their intervention sessions and complied with 76% of their walking targets, with the majority walking four days a week at moderate intensity for 30 minutes per session. Meaningful improvements were found in physical functioning, physical symptoms, physical well-being and ovarian cancerspecific quality of life. Most women (76%) completed ≥85% of their planned chemotherapy dose. There were no withdrawals or serious adverse events and all women reported the program as being helpful. Conclusions: These positive preliminary results suggest that this walking intervention for women receiving chemotherapy for ovarian cancer is safe, feasible and acceptable and could be used in development of future work. Trial registration: ACTRN12609000252213

Timing of births and endometrial cancer risk in Swedish women

While a protective long-term effect of parity on endometrial cancer risk is well established, the impact of timing of births is not fully understood. We examined the relationship between endometrial cancer risk and reproductive characteristics in a population-based cohort of 2,674,465 Swedish women, 20–72 years of age. During follow-up from 1973 through 2004, 7,386 endometrial cancers were observed. Compared to uniparous women, nulliparous women had a significantly elevated endometrial cancer risk (hazard ratio [HR] = 1.32, 95% confidence interval [CI], 1.22–1.42). Endometrial cancer risk decreased with increasing parity; compared to uniparous women, women with ≥4 births had a HR=0.66 (95% CI, 0.59–0.74); p-trend < 0.001. Among multiparous women, we observed no relationship of risk with age at first birth after adjustment for other reproductive factors. While we initially observed a decreased risk with later ages at last birth, this appeared to reflect a stronger relationship with time since last birth, with women with shorter times being at lowest risk. In models for multiparous women that included number of births, age at first and last birth, and time since last birth, age at last birth was not associated with endometrial cancer risk, while shorter time since last birth and increased parity were associated with statistically significantly reduced endometrial cancer risks. The HR was 3.95 (95%CI; 2.17–7.20; p-trend=<0.0001) for women with ≥25 years since a last birth compared to women having given birth within 4 years. Our findings support that clearance of initiated cells during delivery may be important in endometrial carcinogenesis. Keywords: endometrial carcinoma, parity, registry, reproductive factors