Women’s perceptions of their lifestyle and quality of life several years after a diagnosis of endometrial cancer

Background Few studies have examined the long-term changes experienced by women treated for endometrial cancer. Objective The objectives of this study were to describe what women perceived important to their lifestyle and quality of life in the years following their diagnosis and to provide new insights that might inform healthcare practice. Methods This was a thematic analysis of 237 open-ended comments from Australian women diagnosed with endometrial cancer 3 to 5 years previously. Results We identified 3 main themes: (1) personal change, in which women spoke about cancer as permanently altering their lives in mostly negative but sometimes positive ways; (2) continuity of former life, which described both the minimal impact of cancer on women's lives and identities and the difficulties negotiating this within the dominant "cancer survivorship" culture; (3) social support, where women wrote about how the quality of their relationships shaped their cancer trajectory. Conclusions While typical "survivorship" issues exist for many women with endometrial cancer (eg, physical, emotional, sexual health changes), a proportion of women will not be focused on their cancer and can be encouraged to form lives and identities that are not situated within the "cancer survivorship" culture. Implications for Practice A network of support, sensitive to women's responses to having cancer, may benefit women's long-term adjustment. Regular standardized assessment of women's needs may facilitate appropriate support for those with concerns, whereas those without concerns could be reassured by health professionals that their experience is normal and shared by other people with cancer. This may encourage women to form lives that are personally meaningful.

Deriving a preference-based utility measure for cancer patients from the European Organisation for the Research and Treatment of Cancer's Quality of Life Questionnaire C30 : a confirmatory versus exploratory approach

Background Multi attribute utility instruments (MAUIs) are preference-based measures that comprise a health state classification system (HSCS) and a scoring algorithm that assigns a utility value to each health state in the HSCS. When developing a MAUI from a health-related quality of life (HRQOL) questionnaire, first a HSCS must be derived. This typically involves selecting a subset of domains and items because HRQOL questionnaires typically have too many items to be amendable to the valuation task required to develop the scoring algorithm for a MAUI. Currently, exploratory factor analysis (EFA) followed by Rasch analysis is recommended for deriving a MAUI from a HRQOL measure. Aim To determine whether confirmatory factor analysis (CFA) is more appropriate and efficient than EFA to derive a HSCS from the European Organisation for the Research and Treatment of Cancer’s core HRQOL questionnaire, Quality of Life Questionnaire (QLQ-C30), given its well-established domain structure. Methods QLQ-C30 (Version 3) data were collected from 356 patients receiving palliative radiotherapy for recurrent/metastatic cancer (various primary sites). The dimensional structure of the QLQ-C30 was tested with EFA and CFA, the latter informed by the established QLQ-C30 structure and views of both patients and clinicians on which are the most relevant items. Dimensions determined by EFA or CFA were then subjected to Rasch analysis. Results CFA results generally supported the proposed QLQ-C30 structure (comparative fit index =0.99, Tucker–Lewis index =0.99, root mean square error of approximation =0.04). EFA revealed fewer factors and some items cross-loaded on multiple factors. Further assessment of dimensionality with Rasch analysis allowed better alignment of the EFA dimensions with those detected by CFA. Conclusion CFA was more appropriate and efficient than EFA in producing clinically interpretable results for the HSCS for a proposed new cancer-specific MAUI. Our findings suggest that CFA should be recommended generally when deriving a preference-based measure from a HRQOL measure that has an established domain structure.

Manuel Aires Mateus : an architecture for the art of life [曼努埃尔·艾利斯·马特乌斯：建筑，为了生活的艺术]

This text is the outcome of a conversation with Manuel Aires Mateus (Aires Mateus Arquitectos) and discusses the importance of architecture and memory in contemporary architectural productions

“You could scream the place down”: Five poems on the experience of aged care

This article presents five poems constructed from interviews with older people adjusting to living in residential aged care. They are part of the “Inside Aged Care” project, on-going longitudinal phenomenological research tracking the lived experience of aged care from the perspective of residents, family members and service providers. Poetry, through the process of poetic transcription, provided an engaging, evocative and almost visceral way to help us appreciate what it might be like to be ageing in aged care. To date, despite a growing body of work documenting the importance and impact of research in the form of poetry, applying a literary lens is rare in gerontological research. At a very practical level, therefore, we hope these poems help older people, their families, students and those working in aged care better understand the unique world and perspective of new aged care residents.

An acute cough-specific quality of life questionnaire for children: Development and validation

Background Patient-relevant outcome measures are essential for high-quality clinical research, and quality-of-life (QoL) tools are the current standard. Currently, there is no validated children's acute cough-specific QoL questionnaire. Objective The objective of this study was to develop and validate the Parent-proxy Children's Acute Cough-specific QoL Questionnaire (PAC-QoL). Methods Using focus groups, a 48-item PAC-QoL questionnaire was developed and later reduced to 16 items by using the clinical impact method. Parents of children with a current acute cough (<2 weeks) at enrollment completed 2 validated cough score measures, the preliminary 48-item PAC-QoL, and 3 other questionnaires (the State Trait Anxiety Inventory [STAI], the Short-Form 8-item 24-hour recall Health Survey [SF-8], and the Depression, Anxiety, and Stress 21-item Scale [DASS21]). All measures were repeated on days 3 and 14. Results The median age of the 155 children enrolled was 2.3 years (interquartile range, 1.3-4.6). Median cough duration at enrollment was 3 days (interquartile range, 2-5). The reduced 16-item scale had high internal consistency (Cronbach α = 0.95). Evidence for repeatability and criterion validity was shown by significant correlations between the domains and total PAC-QoL scores and the SF-8 (r = −0.36 and −0.51), STAI (r = −0.27 and −0.39), and DASS21 (r = −0.32 and −0.41) scales on days 0 and 3, respectively. The final PAC-QoL questionnaire was sensitive to change over time, with changes significantly relating to changes in cough score measures (P < .001). Conclusion The 16-item PAC-QoL is a reliable and valid outcome measure that assesses QoL related to childhood acute cough at a given time point and reflects changes in acute cough-specific QoL over time.

Voluntary palliated starvation : A lawful and ethical way to die?

Increasingly, individuals want control over their own destiny. This includes the way in which they die and the timing of their death. The desire for self-determination at the end of life is one of the drivers for the ever-increasing number of jurisdictions overseas that are legalising voluntary euthanasia and/or assisted suicide, and for the continuous attempts to reform state and territory law in Australia. Despite public support for law reform in this field, legislative change in Australia is unlikely in the near future given the current political landscape. We argue that there may be another solution which provides competent adults with control over their death and to have any pain and symptoms managed by doctors, but which is currently lawful and consistent with prevailing ethical principles. ‘Voluntary palliated starvation’ refers to the process which occurs when a competent individual chooses to stop eating and drinking, and receives palliative care to address pain, suffering and symptoms that may be experienced by the individual as he or she approaches death. In this article, we argue that, at least in some circumstances, such a death would be lawful for the individual and doctors involved, and consistent with principles of medical ethics.

Feature article coverage of Australian out-of-home care : portrayals and policy reform

Mandatory reporting is a key aspect of Australia’s approach to protecting children and is incorporated into all jurisdictions’ legislation, albeit in a variety of forms. In this article we examine all major newspaper’s coverage of mandatory reporting during an 18-month period in 2008-2009, when high-profile tragedies and inquiries occurred and significant policy and reform agendas were being debated. Mass media utilise a variety of lenses to inform and shape public responses and attitudes to reported events. We use frame analysis to identify the ways in which stories were composed and presented, and how language portrayed this contested area of policy. The results indicate that within an overall portrayal of system failure and the need for reform, the coverage placed major responsibility on child protection agencies for the over-reporting, under-reporting, and overburdened system identified, along with the failure of mandatory reporting to reduce risk. The implications for ongoing reform are explored along with the need for robust research to inform debate about the merits of mandatory reporting.

Models of survivorship care provision in adult patients with haematological cancer : an integrative literature review

Purpose: Increasing numbers of haematology cancer survivors warrants identification of the most effective model of survivorship care to survivors from a diverse range of haematological cancers with aggressive treatment regimens. This review aimed to identify models of survivorship care to support the needs of haematology cancer survivors. Methods: An integrative literature review method utilised a search of electronic databases (CINAHL, Medline, PsycInfo, PubMed, EMBASE, PsycArticles, Cochrane Library) for eligible articles (up to July 2014). Articles were included if they proposed or reported the use of a model of care for haematology cancer survivors. Results: Fourteen articles were included in this review. Eight articles proposed and described models of care and six reported the use of a range of survivorship models of care in haematology cancer survivors. No randomised controlled trials or literature reviews were found to have been undertaken specifically with this cohort of cancer survivors. There was variation in the models described and who provided the survivorship care. Conclusion: Due to the lack of studies evaluating the effectiveness of models of care, it is difficult to determine the best model of care for haematology cancer survivors. Many different models of care are being put into practice before robust research is conducted. Therefore well-designed high quality pragmatic randomised controlled trials are required to inform clinical practice.

The concept of collaboration : a critical exploration of the care continuum

This thesis critically explored the concept of collaboration through an analysis of the experiences of midwives, child health nurses and women in the process of transition from hospital to community care and related policy documents. The research concluded that the concept serves an important social function in obscuring the complexity of social relations in healthcare. Rather than adopt an unquestioning attitude to what is represented as collaboration this thesis argues for a more critical examination of what is occurring, what is potentially hidden and how specific interests are served through its use.

The quality of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam

This three phase study aimed to describe dementia carer's quality of life (QoL) and perceived burden, and explore the associations between family carer characteristics, burden and perceived QoL in Vietnam. Dementia carers in the capital, Hanoi, in Phase 1 (N= 153) and from Hanoi, Hai Phong and Bac Ninh in Phase 2 (N=347) completed questionnaires. Survey results showed dementia carers reported low QoL, predicted by high perceived burden. Other carer characteristics including age, gender, family income and perceived experience were significantly associated with QoL. Filial piety contributed to only a single domain of QoL. Phase 3 employed qualitative methods to explore the specific issues faced by daughter carers. Findings suggested that filial gratitude and positive aspects of the role may influence the caring experience of daughter carers. Further investigation of the specific support needs of general dementia carers, and daughter carers in particular, in Vietnam is warranted.

A call for better care: the impact of postnatal contact services on women’s parenting confidence and experiences of postpartum care in Queensland, Australia

Background Universal postnatal contact services are provided in several Australian states, but their impact on women’s postnatal care experience has not been evaluated. Furthermore, there is lack of evidence or consensus about the optimal type and amount of postpartum care after hospital discharge for maternal outcomes. This study aimed to assess the impact of providing Universal Postnatal Contact Service (UPNCS) funding to public birthing facilities in Queensland, Australia on women’s postnatal care experiences, and associations between amount and type (telephone or home visits) of contact on parenting confidence, and perceived sufficiency and quality of postnatal care. Methods Data collected via retrospective survey of postnatal women (N = 3,724) were used to compare women who birthed in UPNCS-funded and non-UPNCS-funded facilities on parenting confidence, sufficiency of postnatal care, and perceived quality of postnatal care. Associations between receiving telephone and home visits and the same outcomes, regardless of UPNCS funding, were also assessed. Results Women who birthed in an UPNCS-funded facility were more likely to receive postnatal contact, but UPNCS funding was not associated with parenting confidence, or perceived sufficiency or perceived quality of care. Telephone contact was not associated with parenting confidence but had a positive dose–response association with perceived sufficiency and quality. Home visits were negatively associated with parenting confidence when 3 or more were received, had a positive dose–response association with perceived sufficiency and were positively associated with perceived quality when at least 6 were received. Conclusions Funding for UPNCS is unlikely to improve population levels of maternal parenting confidence, perceived sufficiency or quality of postpartum care. Where only minimal contact can be provided, telephone may be more effective than home visits for improving women’s perceived sufficiency and quality of care. Additional service initiatives may be needed to improve women’s parenting confidence.

The role of affect in consumer evaluation of health care services

Health care services are typically consumed out of necessity, typically to recover from illness. While the consumption of health care services can be emotional given that consumers experience fear, hope, relief, and joy, surprisingly, there is little research on the role of consumer affect in health care consumption. We propose that consumer affect is a heuristic cue that drives evaluation of health care services. Drawing from cognitive appraisal theory and affect-as-information theory, this article tests a research model (N = 492) that investigates consumer affect resulting from service performance on subsequent service outcomes.

The contribution of ISO 14067 to the evolution of global greenhouse gas standards—A review

Due to the increasing recognition of global climate change, the building and construction industry is under pressure to reduce carbon emissions. A central issue in striving towards reduced carbon emissions is the need for a practicable and meaningful yardstick for assessing and communicating greenhouse gas (GHG) results. ISO 14067 was published by the International Organization for Standardization in May 2013. By providing specific requirements in the life cycle assessment (LCA) approach, the standard clarifies the GHG assessment in the aspects of choosing system boundaries and simulating use and end-of-life phases when quantifying carbon footprint of products (CFPs). More importantly, the standard, for the first time, provides step-to-step guidance and standardized template for communicating CFPs in the form of CFP external communication report, CFP performance tracking report, CFP declaration and CFP label. ISO 14067 therefore makes a valuable contribution to GHG quantification and transparent communication and comparison of CFPs. In addition, as cradle-to-grave should be used as the system boundary if use and end-of-life phases can be simulated, ISO 14067 will hopefully promote the development and implementation of simulation technologies, with Building Information Modelling (BIM) in particular, in the building and construction industry.

Health-related quality of life of individuals with transfemoral amputation fitted with the Transcutaneous Bone Anchoring Prosthesis following the OGAAP

The benefits and safety transcutaneous bone anchored prosthesis relying on a screw fixation are well reported. However, most of the studies on press-fit implants and joint replacement technology have focused on surgical techniques. One European centre using this technique has reported on health-related quality of life (HRQOL) for a group of individuals with transfemoral amputation (TFA). Data from other centres are needed to assess the effectiveness of the technique in different settings. The aim of this study is to report HRQOL data at baseline and up to 2-year follow-up for a group of TFAs treated by Osseointegration Group of Australia who followed the Osseointegration Group of Australia Accelerated Protocol (OGAAP), in Sydney between 08/12/2011 and 09/04/2014.

Reframe Workshops 2014 End of Year Report

Reframe: QUT's Evaluation Framework has repositioned the evaluations model away from a single survey instrument to a richer, customisable model that enables and supports QUT's academics in implementing teaching strategies and also provides holistic strategic capability. The Framework has established an approach to evaluation wherein the central role is that of individual academics strategising evaluation to support students as learners, enabled and supported by faculty and learning and teaching specialists. QUT has sought to refocus academic centrality and planning while also ensuring anticipated external reporting obligations to agencies such as TEQSA are achieved. 2014 is the year for embedding the Framework as core business within the University, with the the following providing a detailed report of the staff workshops that have been designed and delivered to support academic and professional staff in engaging with and using the Framework.