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Previous research has indicated that healthcare support for sexuality after spinal cord injury appears to be neglected or inadequately provided. The perspectives of people living with spinal cord injuries regarding what is lacking and what support they would like to be provided, and why, has yet to be explored. This paper uses critical theory to explore how societal constructs of sexuality and disability shape how sexuality is supported after a spinal cord injury. To do this, we conducted in-depth semi-structured interviews with 11 people with a spinal cord injury from Australia, the United Kingdom, and the United States. We drew from the works of various critical disability theorists to analyze what discourses underpinned the experiences people with spinal cord injuries had when receiving sexuality support. Analysis suggested that the following discourses were apparent: (1) broken bodies require repair, (2) sex is penetration, ejaculation then reproduction, and (3) sexual autonomy is required. Findings indicated healthcare professionals need to recognize people with spinal cord injuries as sexual beings with a diverse range of desires, lives, relations, and bodies. Provision of individualized comprehensive high-quality sexuality support is therefore warranted. To achieve this, healthcare professionals should aim to be aware of, and mitigate, ableist and normative assumptions. [ABSTRACT FROM AUTHOR]

Qualitative studies on assisted reproductive technology commonly focus on the perspectives of participants living in major metropolises. In doing so, the experiences of those living outside major cities, and the unique way conditions of spatiality shape access to treatment, are elided. In this paper, we examine how location and regionality in Australia impact upon access and experience of reproductive services. We conducted twelve qualitative interviews with participants residing in regional areas across Australia. We asked participants to discuss their experience with assisted reproduction services and the impacts of location on access, service choice, and experience of care, and analysed the data using reflexive thematic analysis, as outlined by Braun and Clarke (2006, 2019). Participants in this study reported that their location impacted the services available to them, required considerable time in travel, and reduced continuity of care. We draw on these responses to examine the ethical implications of uneven distribution of reproductive services in commercial healthcare settings which rely on market-based mechanisms. [ABSTRACT FROM AUTHOR]

Research into nonsuicidal self-injury (NSSI) has primarily focussed on the experience and regulation of emotion. Recently, NSSI-specific cognitions, including self-efficacy to resist self-injury, have been explored to further understand the behaviour. However, within these studies self-efficacy to resist NSSI has been assessed broadly using an adapted measure of self-efficacy to avoid suicide. There is a need for a NSSI-specific measure of self-efficacy, which considers specific contexts that may influence confidence in the ability to resist self-injuring. This paper reports the development of such a measure. An initial item pool (125 items) was generated from interviews with people with lived experience of NSSI and experts in the field of self-injury. These items were then administered to 650 participants aged 18–40 years (M = 21.14, SD = 2.32, 45.69% with a history of NSSI). Analyses revealed a three-factor structure representing: contexts in which it would be difficult to resist NSSI (risk contexts); contexts which make it easier to resist NSSI (protective contexts); and contexts in which people are reminded of self-injury (reminders of NSSI). To reduce the number of items, eight items with the highest loadings on each factor were retained. The final 24 item (three subscales) scale fit the data well and demonstrated invariance across individuals with and without a history of self-injury. Correlations with related but distinct constructs (e.g., self-esteem, locus of control) supported convergent and discriminative validity. This measure could be used to further theoretical understanding of NSSI and may be useful in clinical settings. [ABSTRACT FROM AUTHOR]

The coronavirus disease (COVID-19) pandemic has required health services to rapidly respond to the needs of people diagnosed with the virus. Over 80% of people diagnosed with COVID-19 experience a mild illness and there is a need for community management to support these people in their home. In this paper we present, a telephone based COVID-19 community monitoring service developed in an Australian public health network, and we describe the rapid implementation of the service and the demographic and clinical characteristics of those enrolled. A retrospective mixed methods evaluation of the COVID-19 community monitoring service using the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework. Eight hundred and fifty COVID-19 positive patients were enrolled, 54% female, 45% male, mean age 34 years SD 17. Four hundred and nine (48%) patients were born outside Australia. Among the 850 patients, 305 (36%) were classified as having a high risk of serious illness from COVID-19. The most prevalent risk factors were cardiovascular disease (37%), lung disease (30%) and age over 60 years (26%). The most common reported ongoing symptoms were fatigue (55%), breathing issues (26%) and mental health issues such as low mood (19%). There were no deaths in patients that participated in the service. The process of risk stratification undertaken with telephone triage was effective in determining risk of prolonged illness from COVID-19. Telephone monitoring by trained health professionals has a strong potential in the effective management of patients with a mild COVID-19 illness. [ABSTRACT FROM AUTHOR]

This paper uses secondary analysis to understand how COVID-19 shaped people's experiences with psychosocial support services in Australia. Data are drawn from questionnaires (n = 66) and semi-structured interviews (n = 62), conducted for a national service evaluation, with 121 people living with enduring mental health conditions and using psychosocial support services. Data relating to COVID-19 were inductively coded and analysed using constant comparative analysis. Most people's experiences included tele-support. While some people described minimal disruption to their support, many reported reduced engagement. People's wellbeing and engagement were influenced by: their location, living situation and pre-COVID lifestyles; physical health conditions; access to, comfort with, and support worker facilitation of technology; pre-COVID relationships with support workers; and communication from the organisation. The findings can help services prepare for future pandemics, adjust their services for a 'COVID-normal' world, and consider how learnings from COVID-19 could be incorporated into a flexible suite of service delivery options. [ABSTRACT FROM AUTHOR]

Background: In recent years, there has been a large expansion in literature pertaining to the game of Australian football (AF). Furthermore, there have been a number of rule changes that are likely to have changed the demands of the game. Based on these advances and changes, it seemed important to conduct a review assessing the scientific literature surrounding the sport.Objective: The review evaluates the match demands of AF, the qualities required for success, and the impact training and competition have on adaptation, injury and fatigue.Methods: A systematic search of PubMed, CINAHL, SPORTDiscus, Web of Science and Scopus for AF literature was conducted; studies investigating match demands, physical qualities, training practices and injury were included. Weighted means and standard deviations were calculated for match demands and physical and anthropometric profiles across playing standards.Results: A total of 1830 articles were retrieved in the initial search, with 888 removed as duplicates, 626 removed for being non-relevant and a further 152 removed for being AF papers but not relevant to the review. As such, 164 AF papers were included in the review. Due to the intermittent high-intensity nature of match-play, players need a wide range of physical and technical qualities to excel, with speed, aerobic fitness, reactive agility and well-developed lean mass being central to success. Training for AF at the elite level is associated with high workloads, with players engaging in numerous training modalities; even altitude and heat training camps have been utilised by Australian Football League (AFL) teams to further augment fitness improvements. While high chronic workloads can be tolerated and are needed for improving physical qualities, careful planning and monitoring of internal and external workloads is required to minimise sharp spikes in load that are associated with injury.Conclusions: There is a complex interaction between numerous contextual factors that influence the match demands that are discussed in this review. Whilst players must have the physical capacities to cope with the intense physical demands of AF matches, the successful execution of technical skills during match-play is central to success. To develop these skills and attributes, specific and carefully planned and monitored training must be performed over a number of years. [ABSTRACT FROM AUTHOR]

While there has been increasing interest in promoting father engagement in parenting interventions for child wellbeing, both research and practice endeavors have been hindered by a lack of a measure of father engagement practices. This paper reports the development and evaluation of a comprehensive, practitioner-report measure of father engagement practices-—the Father Engagement Questionnaire (FEQ). Practitioners (N = 589; 84.5% females; mean age = 38.56) involved in delivering parenting interventions in Australia completed the FEQ, along with background demographics and questions regarding their own and organization’s practice. A separate sample of 28 practitioners completed the FEQ twice, with a two-week interim, to assess test-retest stability of the measure. Exploratory factor analysis revealed five factors corresponding to the measure’s five intended content areas: Confidence in Working with Fathers, Competence in Using Engagement Strategies, Perceived Effectiveness of Engagement Strategies, Frequency of Strategy Use, and Organizational Practices for Father Engagement. Each of these scales demonstrated adequate internal consistency reliability and test-retest stability. As the five scales appear to be related but distinct, it is recommended that the FEQ is used as a multidimensional measure of father engagement. In terms of predictive validity, higher scores on the Confidence in Working with Fathers, Frequency of Strategy Use, and Organizational Practices for Father Engagement scales were associated with a higher likelihood of practitioner-reported father attendance. The results provide support for adequate psychometric properties of the FEQ as a research and clinical tool for assessing and monitoring father engagement practices. [ABSTRACT FROM AUTHOR]

Purpose: This paper responds to the call for more research to fully understand out of pocket (OOP) costs for cancer patients by providing a detailed discussion of such costs for adult haematology patients from Queensland, Australia.Methods: The descriptive qualitative research was based on in-depth interviews with 45 (n = 45) haematology patients from regional, rural and remote areas.Results: The discussion itemises the OOP costs under four categories including the costs associated with travel and accommodation, the costs associated with family and friends during relocation, the costs associated with diagnosis and treatment, and the costs of parking.Conclusions: The paper provides evidence of the categories of financial burden experienced by haematology patients who have to relocate for specialist treatment by detailing the extensive range of OOP costs. The expectation is that the itemisation of OOP cost variables will contribute to future efforts of quantification. [ABSTRACT FROM AUTHOR]

There is a growing appetite for large complex databases that integrate a range of personal, socio-demographic, health, genetic and financial information on individuals. It has been argued that 'Big Data' will provide the necessary catalyst to advance both biomedical research and health economics and outcomes research. However, it is important that we do not succumb to being data rich but information poor. This paper discusses the benefits and challenges of building Big Data, analysing Big Data and making appropriate inferences in order to advance cancer care, using Cancer 2015 (a prospective, longitudinal, genomic cohort study in Victoria, Australia) as a case study. Cancer 2015 has been linked to State and Commonwealth reimbursement databases that have known limitations. This partly reflects the funding arrangements in Australia, a country with both public and private provision, including public funding of private healthcare, and partly the legislative frameworks that govern data linkage. Additionally, linkage is not without time delays and, as such, achieving a contemporaneous database is challenging. Despite these limitations, there is clear value in using linked data and creating Big Data. This paper describes the linked Cancer 2015 dataset, discusses estimation issues given the nature of the data and presents panel regression results that allow us to make possible inferences regarding which patient, disease, genomic and treatment characteristics explain variation in health expenditure. [ABSTRACT FROM AUTHOR]

Parents of gender variant children currently receive conflicting information concerning how to respond to their child's gender variance. This conflict arises from divisions within the academic literature between what are referred to as either reparative or affirmative approaches to working with gender variant children. The current paper reports on a scoping study designed to understand the support experiences of Australian parents of gender variant children, together with their attitudes towards gender variance. The study was mixed methods in design, including both quantitative and qualitative information gained from 61 parents of gender variant children. The major findings of the project indicate that a formal diagnosis of gender variance appears to facilitate support towards gender variant children and their parents. The study also found conflicting experiences of contact with healthcare professionals, with some participants reporting positive and supportive experiences and others reporting negative interactions with professionals. Finally, the study found that there were gender differences in relation to parental responses, namely that fathers were less supportive of their child's gender variance. As such, the paper indicates room for improvement in relation to healthcare professionals working with gender variant children and their families, together with insight into the experiences of parents for this group of young people. [ABSTRACT FROM AUTHOR]

Background: The Pediatric Quality of Life Inventory™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL) and the Child Health Utility-9 Dimensions (CHU9D) are two generic instruments designed to measure health-related quality of life in children and adolescents in the general population and paediatric patient groups living with specific health conditions. Although the PedsQL is widely used among paediatric patient populations, presently it is not possible to directly use the scores from the instrument to calculate quality-adjusted life-years (QALYs) for application in economic evaluation because it produces summary scores which are not preference-based.Objective: This paper examines different econometric mapping techniques for estimating CHU9D utility scores from the PedsQL for the purpose of calculating QALYs for cost-utility analysis.Methods: The PedsQL and the CHU9D were completed by a community sample of 755 Australian adolescents aged 15-17 years. Seven regression models were estimated: ordinary least squares estimator, generalised linear model, robust MM estimator, multivariate factorial polynomial estimator, beta-binomial estimator, finite mixture model and multinomial logistic model. The mean absolute error (MAE) and the mean squared error (MSE) were used to assess predictive ability of the models.Results: The MM estimator with stepwise-selected PedsQL dimension scores as explanatory variables had the best predictive accuracy using MAE and the equivalent beta-binomial model had the best predictive accuracy using MSE.Conclusions: Our mapping algorithm facilitates the estimation of health-state utilities for use within economic evaluations where only PedsQL data is available and is suitable for use in community-based adolescents aged 15-17 years. Applicability of the algorithm in younger populations should be assessed in further research. [ABSTRACT FROM AUTHOR]

Peer support groups have been an increasingly popular way of limiting the adverse effects of life with a chronic illness for adolescents although few groups have been rigorously evaluated. This paper reports the findings of a realistic evaluation of a hospital based peer support program Chronic Illness Peer Support (ChIPS), in Sydney, Australia. We collected qualitative interview and focus group data from four participant groups; new ChIPS members, their parents, older members who had been in ChIPS for two or more years, and ChIPS co-ordinators past and present. Results of qualitative data have been aggregated and organised into three categories; program attendance: getting in and staying in; program outcomes for young people: personal growth and development; and social connection. Questionnaires were also administered to fourteen new ChIPS members but no significant changes in distress or self-esteem were recorded between the beginning and the end of the short study period. The ChIPS Introductory Program fulfilled its aim, entering young people with chronic illness into the peer support program. There was evidence of initial personal growth and development in those young people, with potential for enhanced social connection from ongoing participation in ChIPS activities. [ABSTRACT FROM AUTHOR]

Purpose: Different health state utility (HSU) instruments produce different utilities for the same individuals, thereby compromising the intended comparability of economic evaluations of health care interventions. When developing crosswalks, previous studies have indicated nonlinear relationships. This paper inquires into the degree of nonlinearity across the four most widely used HSU-instruments and proposes exchange rates that differ depending on the severity levels of the health state utility scale.Methods: Overall, 7933 respondents from six countries, 1760 in a non-diagnosed healthy group and 6173 in seven disease groups, reported their health states using four different instruments: EQ-5D-5L, SF-6D, HUI-3 and 15D. Quantile regressions investigate the degree of nonlinear relationships between these instruments. To compare the instruments across different disease severities, we split the health state utility scale into utility intervals with 0.2 successive decrements in utility starting from perfect health at 1.00. Exchange rates (ERs) are calculated as the mean utility difference between two utility intervals on one HSU-instrument divided by the difference in mean utility on another HSU-instrument.Results: Quantile regressions reveal significant nonlinear relationships across all four HSU-instruments. The degrees of nonlinearities differ, with a maximum degree of difference in the coefficients along the health state utility scale of 3.34 when SF-6D is regressed on EQ-5D. At the lower end of the health state utility scale, the exchange rate from SF-6D to EQ-5D is 2.11, whilst at the upper end it is 0.38.Conclusion: Comparisons at different utility levels illustrate the fallacy of using linear functions as crosswalks between HSU-instruments. The existence of nonlinear relationships between different HSU-instruments suggests that level-specific exchange rates should be used when converting a change in utility on the instrument used, onto a corresponding utility change had another instrument been used. Accounting for nonlinearities will increase the validity of the comparison for decision makers when faced with a choice between interventions whose calculations of QALY gains have been based on different HSU-instruments. [ABSTRACT FROM AUTHOR]

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant's values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants. [ABSTRACT FROM AUTHOR]

This paper reports on a study of Australian early childhood teachers' pedagogical practices with young children experiencing parental separation and divorce. Twenty-one semi-structured interviews and a focus group were conducted to explore the actions of teachers to support young children experiencing parental separation and divorce. A grounded theory approach was used to analyse data. Teachers reported actions that were focussed on constructing emotional, behavioural, and academic support for young children, as well as forming partnerships with parents, school personnel, and community members to assist. Results are discussed in terms of the implications for professional practice. [ABSTRACT FROM AUTHOR]

Study design:Literature review/semi-structured interviews.Objective:To develop a spinal cord injury (SCI) research strategy for Australia and New Zealand.Setting:Australia.Methods:The National Trauma Research Institute Forum approach of structured evidence review and stakeholder consultation was employed. This involved gathering from published literature and stakeholder consultation the information necessary to properly consider the challenge, and synthesising this into a briefing document.Results:A research strategy 'roadmap' was developed to define the major steps and key planning questions to consider; next, evidence from published SCI research strategy initiatives was synthesised with information from four one-on-one semi-structured interviews with key SCI research stakeholders to create a research strategy framework, articulating six key themes and associated activities for consideration. These resources, combined with a review of SCI prioritisation literature, were used to generate a list of draft principles for discussion in a structured stakeholder dialogue meeting.Conclusion:The research strategy roadmap and framework informed discussion at a structured stakeholder dialogue meeting of 23 participants representing key SCI research constituencies, results of which are published in a companion paper. These resources could also be of value in other research strategy or planning exercises.Sponsorship:This project was funded by the Victorian Transport Accident Commission and the Australian and New Zealand Spinal Cord Injury Network. [ABSTRACT FROM AUTHOR]

The birth of an extremely premature baby is a tragedy, and it is only natural that the parents will rely on the spiritual and religious beliefs that guide the rest of their lives. At this difficult time, parents with strong religious beliefs will hope for divine intervention and pray for a miracle. This paper outlines the difficulties experienced by neonatal nurses when caring for an extremely premature baby whose parents hold on to hope and their belief in divine intervention and a miracle. Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in NSW, Australia. A qualitative approach was used to analyse the data. The theme of 'hoping for a miracle' was captured by two sub-themes 'praying for a miracle' and 'oscillating between hope and despair'. For some families, the hope of divine intervention seemed all consuming, and the nurses were witness to the desperation and disappointment of families when a miracle was not forthcoming. [ABSTRACT FROM AUTHOR]