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1.  Study protocol: a phase III randomised, double-blind, parallel arm, stratified, block randomised, placebo-controlled trial investigating the clinical effect and cost-effectiveness of sertraline for the palliative relief of breathlessness in people with chronic breathlessness 
BMJ Open  2016;6(11):e013177.
Breathlessness remains a highly prevalent and distressing symptom for many patients with progressive life-limiting illnesses. Evidence-based interventions for chronic breathlessness are limited, and there is an ongoing need for high-quality research into developing management strategies for optimal palliation of this complex symptom. Previous studies have suggested that selective serotonin reuptake inhibitors such as sertraline may have a role in reducing breathlessness. This paper presents the protocol for a large, adequately powered randomised study evaluating the use of sertraline for chronic breathlessness in people with progressive life-limiting illnesses.
Methods and analysis
A total of 240 participants with modified Medical Research Council Dyspnoea Scale breathlessness of level 2 or higher will be randomised to receive either sertraline or placebo for 28 days in this multisite, double-blind study. The dose will be titrated up every 3 days to a maximum of 100 mg daily. The primary outcome will be to compare the efficacy of sertraline with placebo in relieving the intensity of worst breathlessness as assessed by a 0–100 mm Visual Analogue Scale. A number of other outcome measures and descriptors of breathlessness as well as caregiver assessments will also be recorded to ensure adequate analysis of participant breathlessness and to allow an economic analysis to be performed. Participants will also be given the option of continuing blinded treatment until either study data collection is complete or net benefit ceases. Appropriate statistical analysis of primary and secondary outcomes will be used to describe the wealth of data obtained.
Ethics and dissemination
Ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals and the key findings presented at national and international conferences.
Trial registration number
PMCID: PMC5168508  PMID: 27899400
breathlessness; sertraline; PALLIATIVE CARE; randomised control trial; protocol
2.  Nuclear envelope rupture and repair during cancer cell migration 
Science (New York, N.Y.)  2016;352(6283):353-358.
During cancer metastasis, tumor cells penetrate tissues through tight interstitial spaces, requiring extensive deformation of the cell and its nucleus. Here, we investigated tumor cell migration in confining microenvironments in vitro and in vivo. Nuclear deformation caused localized loss of nuclear envelope (NE) integrity, which led to the uncontrolled exchange of nucleo-cytoplasmic content, herniation of chromatin across the NE, and DNA damage. The incidence of NE rupture increased with cell confinement and with depletion of nuclear lamins, NE proteins that structurally support the nucleus. Cells restored NE integrity using components of the endosomal sorting complexes required for transport-III (ESCRT-III) machinery. Our findings indicate that cell migration incurs substantial physical stress on the NE and its content, requiring efficient NE and DNA damage repair for survival.
PMCID: PMC4833568  PMID: 27013428
3.  Elements of Effective Interventions for Addressing Intimate Partner Violence in Latina Women: A Systematic Review 
PLoS ONE  2016;11(8):e0160518.
Intimate partner violence remains a global problem and is of particular concern in Latina diasporas.
To identify effective elements of interventions to address intimate partner violence in Latina women.
The systematic review was undertaken according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We focused the search on intervention studies assessing intimate partner violence as an outcome measure and on publications in English and Spanish from the last 11 years (2004–2015).
Despite the scope of the problem, from the 1,274 studies screened only four met the search criteria and only a single study included an exclusive Latino population. Of the four interventions, one was only as effective as the control treatment. Heterogeneity of study populations and designs prohibited meta-analytic methods.
Theoretically derived interventions that are gender specific, culturally appropriate, target mutual aid through group dynamics, and that are developed collaboratively with the target population are likely to be most effective.
PMCID: PMC4978383  PMID: 27504833
4.  Design of a microfluidic device to quantify dynamic intra-nuclear deformation during cell migration through confining environments 
The ability of cells to migrate through tissues and interstitial space is an essential factor during development and tissue homeostasis, immune cell mobility, and in various human diseases. Deformation of the nucleus and its associated lamina during 3-D migration is gathering increasing interest in the context of cancer metastasis, with the underlying hypothesis that a softer nucleus, resulting from reduced levels of lamin A/C, may aid tumour spreading. However, current methods to study the migration of cells in confining three dimensional (3-D) environments are limited by their imprecise control over the confinement, physiological relevance, and/or compatibility with high resolution imaging techniques. We describe the design of a polydimethylsiloxane (PDMS) microfluidic device composed of channels with precisely-defined constrictions mimicking physiological environments that enable high resolution imaging of live and fixed cells. The device promotes easy cell loading and rapid, yet long-lasting (>24 hours) chemotactic gradient formation without the need for continuous perfusion. Using this device, we obtained detailed, quantitative measurements of dynamic nuclear deformation as cells migrate through tight spaces, revealing distinct phases of nuclear translocation through the constriction, buckling of the nuclear lamina, and severe intranuclear strain. Furthermore, we found that lamin A/C-deficient cells exhibited increased and more plastic nuclear deformations compared to wild-type cells but only minimal changes in nuclear volume, implying that low lamin A/C levels facilitate migration through constrictions by increasing nuclear deformability rather than compressibility. The integration of our migration devices with high resolution time-lapse imaging provides a powerful new approach to study intracellular mechanics and dynamics in a variety of physiologically-relevant applications, ranging from cancer cell invasion to immune cell recruitment.
PMCID: PMC4666765  PMID: 26549481
5.  Rating and Ranking the Role of Bibliometrics and Webometrics in Nursing and Midwifery 
The Scientific World Journal  2014;2014:135812.
Background. Bibliometrics are an essential aspect of measuring academic and organizational performance. Aim. This review seeks to describe methods for measuring bibliometrics, identify the strengths and limitations of methodologies, outline strategies for interpretation, summarise evaluation of nursing and midwifery performance, identify implications for metric of evaluation, and specify the implications for nursing and midwifery and implications of social networking for bibliometrics and measures of individual performance. Method. A review of electronic databases CINAHL, Medline, and Scopus was undertaken using search terms such as bibliometrics, nursing, and midwifery. The reference lists of retrieved articles and Internet sources and social media platforms were also examined. Results. A number of well-established, formal ways of assessment have been identified, including h- and c-indices. Changes in publication practices and the use of the Internet have challenged traditional metrics of influence. Moreover, measuring impact beyond citation metrics is an increasing focus, with social media representing newer ways of establishing performance and impact. Conclusions. Even though a number of measures exist, no single bibliometric measure is perfect. Therefore, multiple approaches to evaluation are recommended. However, bibliometric approaches should not be the only measures upon which academic and scholarly performance are evaluated.
PMCID: PMC3914409  PMID: 24550691
6.  Palliative care needs in patients hospitalized with heart failure (PCHF) study: rationale and design 
Esc Heart Failure  2015;2(1):25-36.
The primary aim of this study is to provide data to inform the design of a randomized controlled clinical trial (RCT) of a palliative care (PC) intervention in heart failure (HF). We will identify an appropriate study population with a high prevalence of PC needs defined using quantifiable measures. We will also identify which components a specific and targeted PC intervention in HF should include and attempt to define the most relevant trial outcomes.
An unselected, prospective, near‐consecutive, cohort of patients admitted to hospital with acute decompensated HF will be enrolled over a 2‐year period. All potential participants will be screened using B‐type natriuretic peptide and echocardiography, and all those enrolled will be extensively characterized in terms of their HF status, comorbidity, and PC needs. Quantitative assessment of PC needs will include evaluation of general and disease‐specific quality of life, mood, symptom burden, caregiver burden, and end of life care. Inpatient assessments will be performed and after discharge outpatient assessments will be carried out every 4 months for up to 2.5 years. Participants will be followed up for a minimum of 1 year for hospital admissions, and place and cause of death. Methods for identifying patients with HF with PC needs will be evaluated, and estimates of healthcare utilisation performed.
By assessing the prevalence of these needs, describing how these needs change over time, and evaluating how best PC needs can be identified, we will provide the foundation for designing an RCT of a PC intervention in HF.
PMCID: PMC4864752  PMID: 27347426
Heart failure; Palliative care
7.  Patterns of Technology Use in Patients Attending a Cardiopulmonary Outpatient Clinic: A Self-Report Survey 
Self-management education for cardiopulmonary diseases is primarily provided through time-limited, face-to-face programs, with access limited to a small percentage of patients. Telecommunication tools will increasingly be an important component of future health care delivery.
The purpose of this study was to describe the patterns of technology use in patients attending a cardiopulmonary clinic in an academic medical center.
A prevalence survey was developed to collect data on participant demographics (age in years, sex, and socioeconomic status); access to computers, Internet, and mobile phones; and use of current online health support sites or programs. Surveys were offered by reception staff to all patients attending the outpatient clinic.
A total of 123 surveys were collected between March and April 2014. Technological devices were a pervasive part of everyday life with respondents engaged in regular computer (102/123, 82.9%), mobile telephone (115/117, 98.3%), and Internet (104/121, 86.0%) use. Emailing (101/121, 83.4%), researching and reading news articles (93/121, 76.9%), social media (71/121, 58.7%), and day-to-day activities (65/121, 53.7%) were the most common telecommunication activities. The majority of respondents reported that access to health support programs and assistance through the Internet (82/111, 73.9%) would be of use, with benefits reported as better understanding of health information (16/111, 22.5%), avoidance of difficult travel requirements and time-consuming face-to-face appointments (13/111, 18.3%), convenient and easily accessible help and information (12/111, 16.9%), and access to peer support and sharing (9/111, 12.7%). The majority of patients did not have concerns over participating in the online environment (87/111, 78.4%); the few concerns noted related to privacy and security (10/15), information accuracy (2/15), and computer literacy and access (2/15).
Chronic disease burden and long-term self-management tasks provide a compelling argument for accessible and convenient avenues to obtaining ongoing treatment and peer support. Online access to health support programs and assistance was reported as useful and perceived as providing convenient, timely, and easily accessible health support and information. Distance from the health care facility and a lack of information provision through traditional health sources were both barriers and enablers to telehealth. This is particularly important in the context of a cardiopulmonary clinic that attracts patients from a large geographical area, and in patients who are most likely to have high health care utilization needs in the future. Telecommunication interfaces will be an increasingly important adjunct to traditional forms of health care delivery.
PMCID: PMC4376160  PMID: 25798814
chronic obstructive pulmonary disease; chronic disease; self-management; self-care; telemedicine, eHealth; mHealth
8.  Education and practice gaps on atrial fibrillation and anticoagulation: a survey of cardiovascular nurses 
Patients’ knowledge of their atrial fibrillation (AF) and anticoagulation therapy are determinants of the efficacy of thromboprophylaxis. Nurses may be well placed to provide counselling and education to patients on all aspects of anticoagulation, including self-management. It is important that nurses are well informed to provide optimal education to patients. Current practice and knowledge of cardiovascular nurses on AF and anticoagulation in the Australian and New Zealand (ANZ) context is not well reported.
This study aimed to; 1) Explore the nurse’s role in clinical decision making in anticoagulation in the setting of AF; 2) Describe perceived barriers and enablers to anticoagulation in AF; 3) Investigate practice patterns in the management of anticoagulation in the ANZ setting; 4) Assess cardiovascular nurses’ knowledge of anticoagulation.
A paper-based survey on current practices and knowledge of AF and anticoagulation was distributed during the Australian Cardiovascular Nursing College (ACNC) Annual Scientific Meeting, February 2014. This survey was also emailed to Cardiovascular Trials Nurses throughout New South Wales, Australia and nursing members of the Cardiac Society of Australia and New Zealand (CSANZ).
There were 41/73 (56 %) respondents to the paper-based survey. A further 14 surveys were completed online via nurse members of the CSANZ, and via an investigator developed NSW cardiovascular trials nurse email distribution list. A total of 55 surveys were completed and included in analyses. Prior education levels on AF, stroke risk, anticoagulation and health behaviour modification were mixed. The CHA2DS2VASc and HAS-BLED risk stratification tools were reported to be underused by this group of clinicians. Reported key barriers to anticoagulation included; fears of patients falling, fears of poor adherence to medication taking and routine monitoring. Patient self-monitoring and self-management were reported as underutilised. ANZ cardiovascular nurses reported their key role to be counselling and advising patients on therapy regimens. Anticoagulant-drug interaction knowledge was generally poor.
This study identified poor knowledge and practice in the areas of AF and anticoagulation. There is scope for improvement for cardiovascular nurses in ANZ in relation to AF and anticoagulation knowledge and practice.
PMCID: PMC4709951  PMID: 26758627
Clinical practice; Anticoagulant knowledge; Anticoagulation; Atrial fibrillation; Education; Survey methods; Patient education; Self-management
9.  Acute hospital-based services used by adults during the last year of life in New South Wales, Australia: a population-based retrospective cohort study 
There is limited information about health care utilisation at the end of life for people in Australia. We describe acute hospital-based services utilisation during the last year of life for all adults (aged 18+ years) who died in a 12-month period in Australia’s most populous state, New South Wales (NSW).
Linked administrative health data were analysed for all adults who died in NSW in 2007 (the most recent year for which cause of death information was available for linkage for this study). The data comprised linked death records (2007), hospital admissions and emergency department (ED) presentations (2006–2007) and cancer registrations (1994–2007). Measures of hospital-based service utilisation during the last year of life included: number and length of hospital episodes, ED presentations, admission to an intensive care unit (ICU), palliative-related admissions and place of death. Factors associated with these measures were examined using multivariable logistic regression.
Of the 45,749 adult decedents, 82 % were admitted to hospital during their last year of life: 24 % had >3 care episodes (median 2); 35 % stayed a total of >30 days in hospital (median 17); 42 % were admitted to 2 or more different hospitals. Twelve percent of decedents spent time in an ICU with median 3 days. In the metropolitan area, 80 % of decedents presented to an ED and 18 % had >3 presentations. Overall 55 % died in a hospital or inpatient hospice. Although we could not quantify the extent and type of palliative care, 24 % had mention of “palliative care” in their records. The very elderly and those dying from diseases of the circulatory system or living in the least disadvantaged areas generally had lower hospital service use.
These population-wide health data collections give a highly informative description of NSWhospital-based end-of-life service utilisation. Use of hospital-based services during the last year of life was common, with substantial variation across sociodemographic groups, especially defined by age, cause of death and socioeconomic classification of the decedents’ place of residence. Further research is now needed to identify the contributors to these findings. Gaps in data collection were identified - particularly for palliative care and patient-reported outcomes. Addressing these gaps should facilitate improved monitoring and assessment of service use and care.
PMCID: PMC4669596  PMID: 26637373
End-of-life care; Terminal care; Palliative care; Hospitalisation; Emergency department presentations; Resource utilisation; Linked administrative health data
10.  Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol 
BMC Palliative Care  2015;14:63.
Care for people with advanced dementia requires a palliative approach targeted to the illness trajectory and tailored to individual needs. However, care in nursing homes is often compromised by poor communication and limited staff expertise. This paper reports the protocol for the IDEAL Project, which aims to: 1) compare the efficacy of a facilitated approach to family case conferencing with usual care; 2) provide insights into nursing home- and staff-related processes influencing the implementation and sustainability of case conferencing; and 3) evaluate cost-effectiveness.
A pragmatic parallel cluster randomised controlled trial design will be used. Twenty Australian nursing homes will be randomised to receive either facilitated family case conferencing or usual care.
In the intervention arm, we will train registered nurses at each nursing home to work as Palliative Care Planning Coordinators (PCPCs) 16 h per week over 18 months. The PCPCs’ role will be to: 1) use evidence-based ‘triggers’ to identify optimal time-points for case conferencing; 2) organise, facilitate and document case conferences with optimal involvement from family, multi-disciplinary nursing home staff and community health professionals; 3) develop and oversee implementation of palliative care plans; and 4) train other staff in person-centred palliative care.
The primary endpoint will be symptom management, comfort and satisfaction with care at the end of life as rated by bereaved family members on the End of Life in Dementia (EOLD) Scales. Secondary outcomes will include resident quality of life (Quality of Life in Late-stage Dementia [QUALID]), whether a palliative approach is taken (e.g. hospitalisations, non-palliative medical treatments), staff attitudes and knowledge (Palliative Care for Advanced Dementia [qPAD]), and cost effectiveness. Processes and factors influencing implementation, outcomes and sustainability will be explored statistically via analysis of intervention ‘dose’ and qualitatively via semi-structured interviews. The pragmatic design and complex nature of the intervention will limit blinding and internal validity but support external validity.
The IDEAL Project will make an important contribution to the evidence base for dementia-specific case conferencing in nursing homes by considering processes and contextual factors as well as overall efficacy. Its strengths and weaknesses will both lie in its pragmatic design.
Trial registration
Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12612001164886. Registered 02/11/2012.
PMCID: PMC4654825  PMID: 26589957
End of life care; Palliative care; Dementia; Nursing homes; Person-centred care; Case conferencing; Advance care planning; Communication; Implementation; Cost effectiveness
11.  Developing a gender-based approach to chronic conditions and women’s health: a qualitative investigation of community-dwelling women and service provider perspectives 
BMC Women's Health  2015;15:105.
Chronic conditions contribute to over 70 % of Australia’s total disease burden, and this is set to increase to 80 % by 2020. Women’s greater longevity means that they are more likely than men to live with disability and have unique health concerns related to their gender based roles in society. Cultural and social issues can impact on women's health and are important to consider in health services planning and research. In this study, we aimed to identify barriers and facilitators to providing a gender-based approach to chronic conditions and women's health in an eastern metropolitan region of Australia.
Focus groups were used to engage both community-dwelling women who had chronic conditions and relevant professional stakeholders in the target area. Recorded proceedings underwent thematic analysis.
Five focus groups were conducted with professional stakeholders and women community members in February and March 2014. Resultant themes included: women’s disempowerment through interactions with health systems; social and economic constraints and caregiving roles act to exclude women from participating in self-care and society; and empowerment can be achieved through integrated models of care that facilitate voice and enable communication and engagement.
This study underscores the importance of including perspectives of sex and gender in health care services planning. Tailoring services to socio-demographic and cultural groups is critical in promoting access to health care services. Unique epidemiological trends, particularly the ageing of women and new migrant groups, require particular attention.
PMCID: PMC4655079  PMID: 26590558
Gendered approach; Chronic disease; Women’s health
12.  Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important 
Palliative Medicine  2015;29(9):774-796.
The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap.
Aim and design:
This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families.
Data sources:
Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers.
Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients.
This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.
PMCID: PMC4572388  PMID: 25921707
Palliative care; hospital; terminal care; consumer participation; satisfaction
13.  Nuclear deformability constitutes a rate-limiting step during cell migration in 3-D environments 
Cell motility plays a critical role in many physiological and pathological settings, ranging from wound healing to cancer metastasis. While cell migration on 2-dimensional (2-D) substrates has been studied for decades, the physical challenges cells face when moving in 3-D environments are only now emerging. In particular, the cell nucleus, which occupies a large fraction of the cell volume and is normally substantially stiffer than the surrounding cytoplasm, may impose a major obstacle when cells encounter narrow constrictions in the interstitial space, the extracellular matrix, or small capillaries. Using novel microfluidic devices that allow observation of cells moving through precisely defined geometries at high spatial and temporal resolution, we determined nuclear deformability as a critical factor in the cells’ ability to pass through constrictions smaller than the size of the nucleus. Furthermore, we found that cells with reduced levels of the nuclear envelope proteins lamins A/C, which are the main determinants of nuclear stiffness, passed significantly faster through narrow constrictions during active migration and passive perfusion. Given recent reports that many human cancers have altered lamin expression, our findings suggest a novel biophysical mechanism by which changes in nuclear structure and composition may promote cancer cell invasion and metastasis.
PMCID: PMC4243304  PMID: 25436017
Lamin; nucleus; mechanics; cancer; microfluidics; microstructures; metastasis; invasion; nuclear envelope
14.  The Health of Women and Girls Determines the Health and Well-Being of Our Modern World: A White Paper From the International Council on Women’s Health Issues 
Health care for women international  2011;32(10):870-886.
The International Council on Women’s Health Issues (ICOWHI) is an international nonprofit association dedicated to the goal of promoting health, health care, and well-being of women and girls throughout the world through participation, empowerment, advocacy, education, and research. We are a multidisciplinary network of women’s health providers, planners, and advocates from all over the globe. We constitute an international professional and lay network of those committed to improving women and girl’s health and quality of life. This document provides a description of our organization mission, vision, and commitment to improving the health and well-being of women and girls globally.
PMCID: PMC3703826  PMID: 21919625
16.  The impact of migration on the health status of Iranians: an integrative literature review 
Immigration, both voluntary and forced, is driven by social, political and economic factors. Accordingly, some discussions and debates have emerged in recent years about the impact of migration on the health status of migrants. The aim of this review was to identify the impact of migration on the health status of Iranian immigrants and present a conceptual framework to facilitate the design and delivery of services and supports for this particular immigrant group.
Data for this integrative review were collected from Medline, PsycINFO, Scopus, ProQuest, Academic Search Complete, CINAHL, and Google Scholar search engine. The database search was limited to peer-reviewed literature, published in English, between 1980 and 2013.
Twenty six articles were included in the review. Analysis revealed several factors influencing the mental health of immigrants, including language insufficiency; unemployment; sense of discrimination; cultural shock; lack of social support; lack of information about health care services; and intimate partner violence.
Findings of this review have contributed to development of a conceptual framework that delineates the impact of migration on Iranian immigrants’ health. This conceptualization may also help in addressing the needs of other vulnerable groups during the transition phase of migration.
PMCID: PMC4537565  PMID: 26275716
17.  Reducing the risk of heart disease among Indian Australians: knowledge, attitudes, and beliefs regarding food practices – a focus group study 
Food & Nutrition Research  2015;59:10.3402/fnr.v59.25770.
Australia has a growing number of Asian Indian immigrants. Unfortunately, this population has an increased risk for coronary heart disease (CHD). Dietary adherence is an important strategy in reducing risk for CHD. This study aimed to gain greater understanding of the knowledge, attitudes and beliefs relating to food practices in Asian Indian Australians.
Two focus groups with six participants in each were recruited using a convenience sampling technique. Verbatim transcriptions were made and thematic content analysis undertaken.
Four main themes that emerged from the data included: migration as a pervasive factor for diet and health; importance of food in maintaining the social fabric; knowledge and understanding of health and diet; and elements of effective interventions.
Diet is a complex constructed factor in how people express themselves individually, in families and communities. There are many interconnected factors influencing diet choice that goes beyond culture and religion to include migration and acculturation.
Food and associated behaviors are an important aspect of the social fabric. Entrenched and inherent knowledge, attitudes, beliefs and traditions frame individuals’ point of reference around food and recommendations for an optimal diet.
PMCID: PMC4458512  PMID: 26051008
Asian Indians; South Asian; diet; heart disease; food practices; attitudes; knowledge
18.  The business of death: a qualitative study of financial concerns of widowed older women 
BMC Women's Health  2015;15:36.
The feminisation of ageing and increasing number of widowed women in contemporary society has significant implications. Older women are at risk of poor health, social, and economic outcomes upon widowhood. The aim of the study was to describe women’s experiences in the period soon after their husbands’ death, including their financial issues and concerns, and the ways in which these experiences impacted on the transition to widowhood late in life.
This was a longitudinal study using serial in-depth semi-structured interviews with 21 community-dwelling women over the age of 65 in Australia. Verbatim transcripts underwent Interpretive Phenomenological Analysis.
Thematic analysis revealed: 1) administrative burden increases vulnerability; 2) gender roles impact on transitions; and 3) financial adjustments render housing insecurity and health risk. High administrative burden within the context of significant grief and mourning was a defining feature of the early bereavement period. Complicated protracted administrative processes, insensitive interactions, and reminders of loss contributed to distress, anxiety and feelings of demoralisation. Several women identified assumption of household financial management as the most difficult aspect of coping with their husband’s death.
Older women may have unmet needs for assistance with administrative, financial, and legal issues immediately following spousal death and potentially for years afterward. Lack of familiarity and absence of instrumental support with financial and legal issues signal the need for policy reform, resources to improve financial literacy in women throughout the life course, increased advocacy, and consideration of different support and service models.
PMCID: PMC4407784  PMID: 25906773
19.  Broken nuclei – lamins, nuclear mechanics and disease 
Trends in cell biology  2013;24(4):247-256.
Mutations in lamins, which are ubiquitous nuclear intermediate filaments, lead to a variety of disorders, including muscular dystrophy and dilated cardiomyopathy. Lamins provide nuclear stability, help connect the nucleus to the cytoskeleton, and can modulate chromatin organization and gene expression. Nonetheless, the diverse functions of lamins remain incompletely understood. Here, we focus on the role of lamins on nuclear mechanics and its implication in human diseases. Recent findings suggest that lamin mutations can decrease nuclear stability, increase nuclear fragility, and disturb mechanotransduction signaling, possibly explaining the muscle-specific defects in many laminopathies. At the same time, altered lamin expression has been reported in many cancers, where the resulting increased nuclear deformability could enhance the ability of cells to transit tight interstitial spaces, promoting metastasis.
PMCID: PMC3972295  PMID: 24309562
Protein assembly/structure; cell mechanics; gene regulation; cytoskeleton; laminopathy
20.  Interventions to Reduce Harm from Smoking with Families in Infancy and Early Childhood: A Systematic Review 
Exposure to adult smoking can have deleterious effects on children. Interventions that assist families with smoking cessation/reduction and environmental tobacco smoke (ETS) avoidance can improve child health outcomes and reduce the risk of smoking initiation. The purpose of this review was to describe the state of the science of interventions with families to promote smoke-free home environments for infants and young children, including parent smoking reduction and cessation interventions, ETS reduction, and anti-smoking socialisation interventions, using the socio-ecological framework as a guide. A systematic review of peer-reviewed articles identified from journal databases from 2000 to 2014 was undertaken. Of 921 articles identified, 28 were included in the review. Considerable heterogeneity characterised target populations, intervention types, complexity and intensity, precluding meta-analysis. Few studies used socio-ecological approaches, such as family theories or concepts. Studies in early parenthood (child age newborn to one year) tended to focus on parent smoking cessation, where studies of families with children aged 1–5 years were more likely to target household SHSe reduction. Results suggest that interventions for reduction in ETS may be more successful than for smoking cessation and relapse prevention in families of children aged less than 5 years. There is a need for a range of interventions to support families in creating a smoke free home environment that are both tailored and targeted to specific populations. Interventions that target the social and psychodynamics of the family should be considered further, particularly in reaching vulnerable populations. Consideration is also required for approaches to interventions that may further stigmatise families containing smokers. Further research is required to identify successful elements of interventions and the contexts in which they are most effective.
PMCID: PMC4377954  PMID: 25785496
child; family; smoking; smoking cessation; second hand smoke; antismoking socialisation
21.  A randomized controlled trial to evaluate an educational strategy involving community health volunteers in improving self-care in patients with chronic heart failure: Rationale, design and methodology 
SpringerPlus  2014;3:689.
Chronic heart failure (CHF) is an increasingly important health problem worldwide. Effective self-care can improve the outcomes and quality of life in patients with CHF. Acknowledging the important role of educational interventions for improving self-care, we sought to assess a new educational strategy involving community health volunteers (CHVs) that could reduce the cost and, hypothetically, increase the effectiveness of self-care education in patients with CHF.
In this ongoing three-arm controlled trial, approved by two human research ethics committees in Australia and Iran, 231 patients with CHF registered at a referral cardiovascular hospital in Iran were randomly allocated into three groups -trained by community health volunteers at patients’ homes, rained by formal health professionals at hospital; and a control group with no formal educational exposure. Data obtained through interviewing participants and using the Persian self-care of CHF index (pSCHFI) before and two months after interventions will be analysed using SAS and SPSS.
The results of this study may help health service systems, especially in countries with limited resources, make use of community volunteers to teach patients with CHF to develop self-care behaviors and skills, reducing the cost of care and improving CHF outcomes. Also, this home-based educational strategy using face-to-face training, if successful, may provide psychosocial supports for patients suffering from chronic illnesses.
Trial registration number
ACTRN12614000788673 (Australian New Zealand Clinical Trials Registry)
PMCID: PMC4252496  PMID: 25512887
Community health workers; Chronic illnesses; Home-based education; Health education; Congestive heart failure; Self-management; Medical adherence; Adherence to treatment
22.  Australian Survey of Current Practice and Guideline Use in Adult Cancer Pain Assessment and Management: Perspectives of Palliative Care Physicians 
Journal of Palliative Medicine  2013;16(11):1403-1409.
Cancer pain continues to be undertreated, despite the availability of evidence-based guidelines. The Australian National Pain Strategy identified establishment of systems and guidelines to adequately manage cancer pain as a high priority.
This study aimed to identify barriers and facilitators to adult cancer pain assessment and management as perceived by Australian health professionals; establish the perceived need for new Australian guidelines and implementation strategies; identify which guidelines are used; and identify barriers and facilitators to guideline use. This article focuses on the perceptions of responding palliative care physicians.
A cross-sectional survey was administered online.
Invitations were circulated via peak bodies and clinical leaders. Comments were coded independently by two researchers.
Ninety-two palliative care physicians responded to the survey; 39% of the national total. The majority reported barriers to pain management, including insufficient access to nonpharmacologic interventions, poor coordination between services, and management challenges posed by comorbidities. Forty-five percent reported using pain guidelines, most commonly the Australian Therapeutic Guidelines—Palliative Care. Respondents were largely supportive of the development of new Australian guidelines and implementation strategies, in particular any offering advice on specific cases of cancer pain (e.g., neuropathic), patient self-management resources, assessment of patient priorities, and disciplinary roles.
Barriers to evidence-based practice identified by our survey might be addressed via strategies to support decision making and coordination of care (e.g., a clinical pathway). Particular attention should be paid to promoting access to nonpharmacologic interventions and patient education, and improving referral and care coordination.
PMCID: PMC3822364  PMID: 24168350
23.  Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers 
BMJ Open  2014;4(6):e005745.
Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients’ and caregivers’ efforts to communicate about these issues with their healthcare team.
Methods and analysis
This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL—an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients’ and caregivers’ participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators.
Ethics and dissemination
Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations.
Trial registration number
Australian New Zealand Clinical Trials Registry ACTRN12610000724077.
PMCID: PMC4078787  PMID: 24969786
Communication; Cancer; End-of-life care; Advance care planning; Question prompt list; Caregivers
24.  Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations 
BMC Palliative Care  2014;13:30.
Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.
Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.
Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.
Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.
PMCID: PMC4067081  PMID: 24959101
Palliative care; End of life care; Lower socioeconomic; Social capital; Networks and relations
25.  Making progress: the role of cancer councils in Australia in indigenous cancer control 
BMC Public Health  2014;14:347.
Indigenous Australians have poorer outcomes from cancer for a variety of reasons including poorer participation in screening programs, later diagnosis, higher rates of cancer with poor prognosis and poorer uptake and completion of treatment. Cancer prevention and support for people with cancer is part of the core business of the State and Territory Cancer Councils. To support sharing of lessons learned, this paper reports an environmental scan undertaken in 2010 in cancer councils (CCs) nationwide that aimed to support Indigenous cancer control.
The methods replicated the approach used in a 2006 environmental scan of Indigenous related activity in CCs. The Chief Executive Officer of each CC nominated individuals for interview. Interviews explored staffing, projects, programs and activities to progress cancer control issues for Indigenous Australians, through phone or face-to-face interviews. Reported initiatives were tabulated using predetermined categories of activity and summaries were returned to interviewees, the Aboriginal and Torres Strait Islander Subcommittee and Chief Executive Officers for verification.
All CCs participated and modest increases in activity had occurred in most states since 2006 through different means. Indigenous staff numbers were low and no Indigenous person had yet been employed in smaller CCs; no CC had an Indigenous Board member and efforts at capacity building were often directed outside of the organisation. Developing partnerships with Indigenous organisations were ongoing. Acknowledgement and specific mention of Indigenous people in policy was increasing. Momentum increased following the establishment of a national subcommittee which increased the profile of Indigenous issues and provided collegial and practical support for those committed to reducing Indigenous cancer disparities. Government funding of “Closing the Gap” and research in the larger CCs have been other avenues for increasing knowledge and activity in Indigenous cancer control.
This environmental scan measured progress, allowed sharing of information and provided critical assessment of progress across areas of importance for increasing Indigenous cancer control. Structured examination of policies, institutional support systems, programs and interventions is a useful means of highlighting opportunities for progress with minority groups relevant for many organisations. Progress has occurred with momentum likely to increase in the future and benefit from commitment to long-term monitoring and sharing of achievements.
PMCID: PMC4004461  PMID: 24725974
Cancer; Aboriginal; Indigenous; Environmental scan; Delivery of health care/*organization & administration; Health services accessibility; Neoplasms/*prevention & control

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