Palliative and Supportive Services Collected Works

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    Relationships of eHealth Literacy to Socio-Demographic Characteristics and Engagement in Online Learning: A Quantitative Study
    (Flinders University, 2021-06) Tieman, Jennifer; De Valle, Madelaine; Miller-Lewis, Lauren
    Over the next two decades, population growth, chronic disease progression and an ageing population will see a growing number of people confront the difficulties that often accompany coming to the end of one’s life. Online palliative care resources can provide valuable information to individuals, families, carers, and others. In order to be effective, however, such resources need to be readily found, understood, and applied by consumers. eHealth literacy – the ability to find, understand, and apply online health resources – is becoming increasingly important in palliative care. While the body of literature pertaining to the way health information is provided to the community is growing, little is currently known about predictors of eHealth literacy in the context of death and dying, or how eHealth literacy is related to engagement with online health resources. This White Paper reports on a study undertaken to examine relationships between eHealth literacy and sociodemographic and personal characteristics within a sample enrolled in an online course about death and dying. The Study on which this White Paper reports used a convenience sample of students who were participating in a MOOC (massive open online course) about death and dying.
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    Allied Health Clinicians' Understanding of Palliative Care as It Relates to Patients, Caregivers, and Health Clinicians: A Cross-Sectional Survey
    (Association of Schools of Allied Health Professionals, 2019-06-01) Morgan, Deidre D; Rawlings, Deb; Button, Elizabeth Dionicia; Tieman, Jennifer
    PURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single openended question from a larger survey are presented. METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data. RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings. CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
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    How Can Activity Monitors Be Used in Palliative Care Patients?
    (Mary Ann Liebert, Inc., publishers, 2019-03-19) To, Timothy H M; Currow, David Christopher; Swetenham, Kate; Morgan, Deidre D; Tieman, Jennifer
    Background: Physical activity in palliative care patients is closely linked to independence, function, carer burden, prognosis, and quality of life. Changes in physical activity can also be related to service provision needs, including requirements for support and prognosis. However, the objective measurement of physical activity is challenging, with options, including self-report, invasive and intensive measures such as calorimetry, or newer options such as pedometers and accelerometers. This latter option is also becoming more viable with the advent of consumer technology driven by the health and exercise industry. Objective: In this article, we highlight our experiences of activity monitoring in palliative care patients as part of telehealth trial. We also highlight the strengths and limitations of activity monitoring in the palliative care population and potential applications. Conclusions: Although the advent of consumer technology for activity measurement makes their use seem attractive in clinical settings for palliative care patients, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.
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    The trajectory of functional decline over the last 4 months of life in a palliative care population: A prospective, consecutive cohort study
    (Sage, 2019-03-27) Morgan, Deidre D; Tieman, Jennifer; Allingham, Samuel F; Ekstrom, Magnus; Connolly, Alanna; Currow, David Christopher
    Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
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    Social Networks and Memory over 15 Years of Followup in a Cohort of Older Australians: Results from the Australian Longitudinal Study of Ageing
    (Hindawi, 2012-08-29) Giles, Lynne Catherine; Anstey, Kaarin Jane; Walker, Ruth Ballance; Luszcz, Mary Alice
    The purpose was to examine the relationship between different types of social networks and memory over 15 years of followup in a large cohort of older Australians who were cognitively intact at study baseline. Our specific aims were to investigate whether social networks were associated with memory, determine if different types of social networks had different relationships with memory, and examine if changes in memory over time differed according to types of social networks. We used five waves of data from the Australian Longitudinal Study of Ageing, and followed 706 participants with an average age of 78.6 years (SD 5.7) at baseline. The relationships between five types of social networks and changes in memory were assessed. The results suggested a gradient of effect; participants in the upper tertile of friends or overall social networks had better memory scores than those in the mid tertile, who in turn had better memory scores than participants in the lower tertile. There was evidence of a linear, but not quadratic, effect of time on memory, and an interaction between friends’ social networks and time was apparent. Findings are discussed with respect to mechanisms that might explain the observed relationships between social networks and memory.
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    Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care crosssectional survey
    (Sage Journals, 2018-04-24) Eva, Gail; Morgan, Deidre D
    Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.
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    The contribution of a MOOC to community discussions around death and dying
    (BioMed Central, 2018-02-20) Tieman, Jennifer; Miller-Lewis, Lauren; Rawlings, Deb; Parker, Deborah; Sanderson, Christine Ruth
    Background Advances in medicine have helped many to live longer lives and to be able to meet health challenges. However death rates are anticipated to increase given the ageing population and chronic disease progression. Being able to talk about death is seen to be important in normalising death as part of life and supporting preparedness for death. Massive Open Online Courses (MOOCs) provide opportunities for the community to engage in collaborative learning. A 5 week MOOC was developed covering four main topics (language and humour, representations of death, medicalisation of dying, and digital dying) aiming: To enable participants to openly and supportively discuss and learn about issues around living, death and dying, To explore the normally unheard opinions and views of Australians around death and dying, and To determine what effect online learning and discussions offered through the MOOC had on participants’ feelings and attitudes towards death and dying. Methods Data was captured on engagement rates in the various MOOC activities. Death Attitudes were measured by five items representing the MOOC’s learning objectives and completed at enrolment and conclusion. MOOC Satisfaction was measured with six items at the end of the MOOC. Descriptive statistics were produced for each variable and Chi-Square Tests of Independence assessed the extent of the relationship between categorical variables. Socio-demographic variables were examined as predictors of the outcome variables of MOOC engagement, MOOC satisfaction, and death attitudes. Ethical approval was received from Flinders University Social and Behavioural Research Ethics Committee (Project No. 7247). Results One thousand one hundred fifty six people enrolled in the Dying2Learn MOOC with 895 participating in some way. Enrolees were primarily female (92.1%). Age ranged from 16 to 84 (mean = 49.5, SD = 12.3). MOOC satisfaction scores were high. Responses to the experience of participating in the MOOC were very positive, with mean scores ranging from 4.3 to 4.6 (aligning with agreement and strong agreement to statements on the value of participating). Death Attitudes were positive at commencement but increased significantly following participation. Conclusions The Dying2Learn MOOC provided an environment that enabled open and supportive discussion around death and dying and influenced attitudinal change.
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    Never say die: death euphemisms, misunderstandings and their implications for practice
    (MA Healthcare, 2017-07-29) Rawlings, Deb; Tieman, Jennifer; Sanderson, Christine Ruth; Parker, Deborah; Miller-Lewis, Lauren
    BACKGROUND: A Massive Open Online Course (MOOC) on death and dying was conducted to open the dialogue around death and dying. In one activity, participants were asked to engage with language and to think of alternative words (or euphemisms) that are used to describe death. AIM: To reflect from a nursing perspective how language enables and sometimes disguises important messages and conversations. METHODS: Four hundred and seventy one participants provided 3053 euphemisms. FINDINGS: Euphemisms were varied, with many providing commentary on their purpose and use. DISCUSSION: As a society we have become quite creative in the use of euphemisms, but need to be mindful of misunderstandings and misinterpretations which can cause embarrassment and distress in clinical situations. CONCLUSION: This paper describes some of the euphemisms that were provided, examining why they are used and how their use can be easily misconstrued in daily life and in clinical practice.
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    Using telehealth to support end of life care in the community: a feasibility study
    (BioMed Central, 2016-11-17) Tieman, Jennifer; Swetenham, K; Morgan, Deidre D; To, Timothy H M; Currow, David Christopher
    Background Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. Methods This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient’s general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). Results The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. Conclusions The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service.
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    Transitioning a home telehealth project into a sustainable, large-scale service: a qualitative study
    (BioMed Central, 2016-05-16) Wade, Victoria; Taylor, Alan; Kidd, Michael Richard; Carati, Colin John
    Background This study was a component of the Flinders Telehealth in the Home project, which tested adding home telehealth to existing rehabilitation, palliative care and geriatric outreach services. Due to the known difficulty of transitioning telehealth projects services, a qualitative study was conducted to produce a preferred implementation approach for sustainable and large-scale operations, and a process model that offers practical advice for achieving this goal. Methods Initially, semi-structured interviews were conducted with senior clinicians, health service managers and policy makers, and a thematic analysis of the interview transcripts was undertaken to identify the range of options for ongoing operations, plus the factors affecting sustainability. Subsequently, the interviewees and other decision makers attended a deliberative forum in which participants were asked to select a preferred model for future implementation. Finally, all data from the study was synthesised by the researchers to produce a process model. Results 19 interviews with senior clinicians, managers, and service development staff were conducted, finding strong support for home telehealth but a wide diversity of views on governance, models of clinical care, technical infrastructure operations, and data management. The deliberative forum worked through these options and recommended a collaborative consortium approach for large-scale implementation. The process model proposes that the key factor for large-scale implementation is leadership support, which is enabled by 1) showing solutions to the problems of service demand, budgetary pressure and the relationship between hospital and primary care, 2) demonstrating how home telehealth aligns with health service policies, and 3) achieving clinician acceptance through providing evidence of benefit and developing new models of clinical care. Two key actions to enable change were marketing telehealth to patients, clinicians and policy-makers, and building a community of practice. Conclusions The implementation of home telehealth services is still in an early stage. Change agents and a community of practice can contribute by marketing telehealth, demonstrating policy alignment and providing potential solutions for difficult health services problems. This should assist health leaders to move from trials to large-scale services.
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    Prescription of opioids for breathlessness in end-stage COPD: a national population-based study
    (Dove Medical Press Limited., 2016-10-21) Ahmadi, Zainab; Bernelid, Eva; Currow, David Christopher; Ekstrom, Magnus
    Background: Low-dose opioids can relieve breathlessness but may be underused in late-stage COPD due to fear of complications, contributing to poor symptom control. Objectives: We aimed to study the period prevalence and indications of opioids actually prescribed in people with end-stage COPD. Methods: The study was a longitudinal, population-based study of patients starting long-term oxygen therapy (LTOT) for COPD between October 1, 2005 and June 30, 2009 in Sweden. A random sample (n=2,000) of their dispensed opioid prescriptions was obtained from the national Prescribed Drugs Register from 91 days before starting LTOT until the first of LTOT withdrawal, death, or study end (December 31, 2009). We analyzed medication type, dispensed quantity, date of dispensing, and indications categorized as pain, breathlessness, other, or unknown. Results: In total, 2,249 COPD patients (59% women) were included. During a median follow-up of 1.1 (interquartile range 0.6–2.0) years, 1,034 patients (46%) were dispensed $1 opioid prescription (N=13,722 prescriptions). The most frequently prescribed opioids were tramadol (23%), oxycodone (23%), morphine (16%), and codeine (16%). Average dispensed quantity was 9.3 (interquartile range 3.7–16.7) defined daily doses per prescription. In the random sample, the most commonly stated indication was pain (97%), with only 2% for breathlessness and 1% for other reasons. Conclusion: Despite evidence that supported the use of opioids for the relief of breathlessness predating this study, opioids are rarely prescribed to relieve breathlessness in oxygen-dependent COPD, potentially contributing to less-than-optimal symptom control. This study creates a baseline against which to compare future changes in morphine prescribing in this setting.
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    Designing Clinically Valuable Telehealth Resources: Processes to Develop a Community-Based Palliative Care Prototype
    (JMIR Publications, 2014-09-04) Tieman, Jennifer; Morgan, Deidre D; Swetenham, Kate; To, Timothy H M; Currow, David Christopher
    Background: Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective: This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods: The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results: Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions: The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype.
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    Building an Architectural Component Model for a Telehealth Service
    (Scientific Research Publishing, 2015-09-16) Taylor, Alan; Morris, Greg; Tieman, Jennifer; Currow, David Christopher; Kidd, Michael; Carati, Colin
    Models of services, processes and technology are useful tools for conceptualizing complex systems such as healthcare. The application of a component architecture helps illustrate the processes and technologies that are important to the operation of a health service and conceptualize the relationships between each component. Telehealth services are relatively recent and have characteristics that do not fit neatly into established models of health services. This paper analyzes the components used to build a telehealth in the home service in South Australia and the design choices that were taken. The service used commodity-based devices and systems to deliver simple to use, low-cost in the home care. Building on this analysis, the components required in an architectural component model of a telehealth service are identified enabling a provisional architecture for telehealth services to be derived from an existing internationally recognized architectural model for eHealth systems. Situated within the broad family of eHealth architectures, a Telehealth Architectural Model of telehealth processes, software, devices, common systems and ICT infrastructure is proposed that represents the components required to support telehealth and allows for customization of services according to clinical models of care.
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    Can Video Conferencing Be as Easy as Telephoning?-A Home Healthcare Case Study
    (Scientific Research Publishing, 2016-01-13) Taylor, Alan; Morris, Greg; Tieman, Jennifer; Currow, David Christopher; Kidd, Michael; Carati, Colin
    In comparison with almost universal adoption of telephony and mobile technologies in modern day healthcare, video conferencing has yet to become a ubiquitous clinical tool. Currently telehealth services are faced with a bewildering range of video conferencing software and hardware choices. This paper provides a case study in the selection of video conferencing services by the Flinders University Telehealth in the Home trial (FTH Trial) to support healthcare in the home. Using pragmatic methods, video conferencing solutions available on the market were assessed for usability, reliability, cost, compatibility, interoperability, performance and privacy considerations. The process of elimination through which the eventual solution was chosen, the selection criteria used for each requirement and the corresponding results are described. The resulting product set, although functional, had restricted ability to directly connect with systems used by healthcare providers elsewhere in the system. This outcome illustrates the impact on one small telehealth provider of the broader struggles between competing video conferencing vendors. At stake is the ability to communicate between healthcare organizations and provide public access to healthcare. Comparison of the current state of the video conferencing market place with the evolution of the telephony system reveals that video conferencing still has a long way to go before it can be considered as easy to use as the telephone. Health organizations that are concerned to improve access and quality of care should seek to influence greater standardization and interoperability though cooperation with one another, the private sector, international organizations and by encouraging governments to play a more active role in this sphere.
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    Health-related quality of life measured using the EQ-5D-5L: South Australian population norms.
    (BioMed Central, 2016) McCaffrey, Nicola; Kaambwa, Billingsley; Currow, David Christopher; Ratcliffe, Julie
    Background Although a five level version of the widely-used EuroQol 5 dimensions (EQ-5D) instrument has been developed, population norms are not yet available for Australia to inform the future valuation of health in economic evaluations. The aim of this study was to estimate HrQOL normative values for the EQ-5D-5L preference-based measure in a large, randomly selected, community sample in South Australia. Methods The EQ-5D-5L instrument was included in the 2013 South Australian Health Omnibus Survey, an interviewer-administered, face-to-face, cross-sectional survey. Respondents rated their level of impairment across dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) and global health rating on a visual analogue scale (EQ-VAS). Utility scores were derived using the newly-developed UK general population-based algorithm and relationships between utility and EQ-VAS scores and socio-demographic factors were also explored using multivariate regression analyses. Results Ultimately, 2,908 adults participated in the survey (63.4 % participation rate). The mean utility and EQ-VAS scores were 0.91 (95 CI 0.90, 0.91) and 78.55 (95 % CI 77.95, 79.15), respectively. Almost half of respondents reported no problems across all dimensions (42.8 %), whereas only 7.2 % rated their health >90 on the EQ-VAS (100 = the best health you can imagine). Younger age, male gender, longer duration of education, higher annual household income, employment and marriage/de facto relationships were all independent, statistically significant predictors of better health status (p < 0.01) measured with the EQ-VAS. Only age and employment status were associated with higher utility scores, indicating fundamental differences between these measures of health status. Conclusions This is the first Australian study to apply the EQ-5D-5L in a large, community sample. Overall, findings are consistent with EQ-5D-5L utility and VAS scores reported for other countries and indicate that the majority of South Australian adults report themselves in full health. When valuing health in Australian economic evaluations, the utility population norms can be used to estimate HrQOL. More generally, the EQ-VAS score may be a better measure of population health given the smaller ceiling effect and broader coverage of HrQOL dimensions. Further research is recommended to update EQ-5D-5L population norms using the Australian general population specific scoring algorithm once this becomes publically available.
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    Family Caregivers Who Would Be Unwilling to Provide Care at the End of Life Again: Findings from the Health Survey for England Population Survey
    (Public Library of Science, 2016) Johnson, M; Allgar, V; Macleod, U; Jones, A; Oliver, S; Currow, David Christopher
    Background Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. Methods Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. Findings HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. Conclusions A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.
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    Systematic review of the types of methods and approaches used to assess the effectiveness of healthcare information websites
    (CSIRO Publishing, 2013-09-05) Tieman, Jennifer; Bradley, Sandra L
    The objective of this systematic review was to identify types of approaches and methods used to evaluate the effectiveness of healthcare information websites. Simple usage data may not be sufficient to assess if the desired healthcare outcomes were achieved or to determine the relative effectiveness of different web resources on the same health topic. To establish the state of the knowledge base on assessment methods used to determine the effectiveness of healthcare websites, a structured search of the literature was conducted in Ovid Medline resulting in 1,611 articles retrieved, of which 240 met the inclusion criteria for this review. Results of this review found that diverse evaluation methods were used to measure the effectiveness of healthcare websites. These evaluation methods were used during development, prior to release, and after release. Economic assessment was rare and most evaluations looked at content issues such as readability scores. A number of studies did try to assess the usefulness of websites but few studies looked at behaviour change or knowledge transfer following engagement with the designated health website. To assess the effectiveness of the knowledge transfer of healthcare information through the online environment, multiple methods may need to be used to evaluate healthcare websites and may need to be undertaken at all stages of the website development process.
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    Refining a Checklist for Reporting Patient Populations and Service Characteristics in Hospice and Palliative Care Research
    (Elsevier, 2012-03-21) Currow, David Christopher; Tieman, Jennifer; Greene, Aine; Zafar, S Yousuf; Wheeler, Jane L; Abernethy, Amy Pickar
    Context and Objective Diagnoses and prognoses vary widely across sub-populations of people referred to specialist palliative care services; variations also exist in the way these services are configured. These variations create substantial heterogeneity in palliative care populations enrolled in research studies which, in turn, limits the generalizability of study results. This paper reports on the refinement of a checklist of patient/research participant and service/research site descriptors; the checklist can be completed for any palliative care research study. Its purposes are to: (1) facilitate the design and reporting of rigorous palliative care research, and thereby, (2) aid clinicians in appropriately applying research evidence in clinical practice. Methods A previously published framework (five domains; 13 core sub-domains and 25 noncore sub-domains) was used to code all research articles (n=189) published over a 12-month period in the three leading palliative care journals internationally. Results In descending order, the most frequently reported sub-domains were: patient age, patient gender and patient diagnosis; model of service delivery and patient performance status. Data in certain sub-domains, such as time from referral to death, socio-economic indices and ethnicity, were rarely reported; none of the included studies reported whole-of-service or whole-of-population data. With a total of 2,457 core sub-domains that could have been reported (189x13), the included studies provided data on 30% (746/2457). A simplified list of sub-domains is proposed. Different domains are now identified for different study populations in palliative care. Conclusion Checklists such as CONSORT focus mainly on internal validity. The proposed checklist adds a checklist specific to the content of palliative care, focusing on external validity and the study population. Key words: study characteristics; reporting guidelines; publishing/standards; quality controls; checklists; applicability; generalisability
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    Advance Care Planning for Adults With CKD: A Systematic Integrative Review
    (Elsevier, 2014-05) Luckett, T; Sellars, M; Tieman, Jennifer; Pollock, CA; Silvester, W; Butow, Phyllis N; Detering, KM; Brennan, Frank; Clayton, Josephine M
    Background Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD). Study Design We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods. Setting & Population We focused on adults with a primary diagnosis of CKD in any setting. Selection Criteria for Studies We included studies of any design, quantitative or qualitative.. Interventions ACP was defined as any formal means taken to ensure health professionals and family members are aware of patients’ wishes for care in the event they become too unwell to speak for themselves. Outcomes Measures of all kinds were considered to be of interest. Results Fifty-five articles met criteria reporting on 51 discrete samples. All patient samples included people with Stage 5 CKD; two also included patients with Stage 4. Seven interventions were tested; all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient/family outcomes in the form of improved wellbeing and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been emphasised in interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis separately from ‘aggressive’ life-sustaining treatments (e.g. ventilation). Limitations Whilst quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy. Conclusions Research on ACP in patients with CKD is limited, especially regarding intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care. Index words Chronic kidney disease, Renal failure, Advance care planning, Advance directives, Decision-making
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    Filters and hubs: shortening the distance to palliative care evidence
    (CSIRO Publishing, 2012-01-16) Tieman, Jennifer
    Palliative care is an integral part of the care provided by GPs and other primary health care providers, and as Australia’s population ages and the palliative care needs of patients with end stage organ failure are recognised, this area of care is likely to increase. Using a Knowledge Translation framework, two strategies have been used to develop resources to support those providing palliative care in the community. PubMed Searches on a range of common palliative care topics and incorporating a palliative care filter provide an easy and validated mechanism to retrieve relevant literature. A “GP Hub” offers knowledge, skills and practical advice for GPs who provide palliative care in the community. Both resources are freely available within the CareSearch website ensuring immediate access to palliative care information and evidence when it is needed.