Publications by authors named "Jennifer Tieman"

78 Publications

Benefits of Structured Engagement with Target Audiences of a Health Website: Study Design for a Multi-Case Study.

Healthcare (Basel) 2021 May 18;9(5). Epub 2021 May 18.

Australian Institute for Primary Care and Ageing (AIPCA), La Trobe University, Melbourne 3083, Australia.

Access to evidence and practice knowledge precedes use, but availability does not guarantee reach and uptake by intended audiences. The CareSearch project provides online palliative care evidence and information to support health and aged care professionals as well as patients, carers and families to make informed decisions about care at the end of life. Already established in the palliative care sector, CareSearch commenced planning to extend its reach, and ensure website use is maximised for different audiences. This paper reports on the development of the Engagement Framework which will be used to guide and deliver an Engagement Project which will actively seek feedback and insights from intended users in a structured process. The process for developing the Engagement Framework commenced with a literature review of approaches used in knowledge translation, implementation science, and social marketing. The Engagement Framework comprising eight steps was then developed. The Engagement Framework outlines the series of tasks to be undertaken by team members when working with three target groups (Aged Care; Allied Health; and Patients, Carers and Families). A process/formative evaluation collecting data using qualitative methods is also described for use in the subsequent Engagement Project. The evaluation will explore the experiences of project participants as well as staff implementing the engagement activities. The three target groups will enable a cross-case comparison of the strengths and weaknesses of the approach. Planning, implementing and evaluating engagement with intended audiences, offers one mechanism to identify ways to increase interaction and integration with knowledge users.
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http://dx.doi.org/10.3390/healthcare9050600DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8157546PMC
May 2021

Compassionate communities - What does this mean for roles such as a death doula in end-of-life care?

Public Health 2021 May 1;194:167-169. Epub 2021 May 1.

Research Centre for Palliative Care, Death and Dying, Flinders University, Adelaide, South Australia, Australia.

Objectives: To consider death doulas in relation to compassionate communities, role delineation and regulation, and end-of-life care delivery.

Study Design: A narrative describing the emerging role of death doula in the increasingly complex end-of-life space.

Methods: A discussion of death doula in end-of-life care.

Results: Compassionate communities calls for the mobilisation of informal care around the dying and their families. Formal health services as well, including palliative care, are already providing care as are death doulas. The death doula role is not yet fully articulated and has layers of complexity associated with a lack of formalised training and no registration.

Conclusions: There is much to consider in the informal caregiving space at the end of life. Conversations are required for coherent, coordinated care delivery in what has become a complex arena. There are those who are in paid positions, volunteers, those who are negotiating fees, as well as role overlap and role blurring.
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http://dx.doi.org/10.1016/j.puhe.2021.02.038DOI Listing
May 2021

What Is the Community Pharmacists' Role in Supporting Older Australians with Palliative Care Needs?

Healthcare (Basel) 2021 Apr 21;9(5). Epub 2021 Apr 21.

Research Centre for Palliative Care, Death and Dying, College of Nursing and Health Sciences, Flinders University, Bedford Park, SA 5042, Australia.

As the population ages, the number of older populations globally requiring palliative care is rapidly growing, requiring services of multidisciplinary teams-including community pharmacists. The aim of this study is to describe the community pharmacists' perceived role in providing services to community dwelling older Australians receiving palliative care. Utilising an eight-domain End of Life Directions for Aged Care (ELDAC) care model, a national cross-sectional questionnaire was designed and undertaken online with Australian community pharmacists. Respondents were asked questions relating to socio-demographic characteristics, practice characteristics, and scope of services provided. Of the 62 pharmacists who responded to the questionnaire, 51 were included in the final data analysis and reporting. Pharmacists working in dispensing roles made up about half of the respondents, while the remainder worked in settings such as general practice, residential aged care, or providing medication review services. Pharmacists can identify patients with indicators of poor life expectancy and mostly work with older Australians daily. Dispensing and non-dispensing pharmacists offer a range of services that complement each other. Organisations caring for the aged should consider the role of the pharmacist, in caring for people with palliative care needs, along with their carers.
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http://dx.doi.org/10.3390/healthcare9050489DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8143164PMC
April 2021

Natural Death Versus Known Date-Of-Death: A Qualitative Study of Views on Voluntary Assisted Dying in an Online Course About Death.

Omega (Westport) 2021 Apr 11:302228211008771. Epub 2021 Apr 11.

Palliative & Supportive Services, Flinders University, Bedford Park, Australia.

The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 'Dying2Learn' Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying 'naturally', advance care directives, and being in pain. In this study, participants had many different views on the act itself, often divisive, but also with common concepts such as respecting the choices and decisions of others.
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http://dx.doi.org/10.1177/00302228211008771DOI Listing
April 2021

The Value of Applying Ethical Principles in Telehealth Practices: Systematic Review.

J Med Internet Res 2021 03 30;23(3):e25698. Epub 2021 Mar 30.

College of Medicine and Public Health, Flinders University, Bedford Park, Australia.

Background: As the use of technology to deliver health services is increasing rapidly and has further intensified during the COVID-19 pandemic, these initiatives may fail if ethical impacts are not fully identified and acted upon by practitioners. Ignoring the ethical impacts of information and communication technology health service delivery creates an unintended risk for patients and can lead to reduced effectiveness, noncompliance, and harm, undermining the best intentions of governments and clinicians.

Objective: Our aim was to explore how ethical considerations or impacts may be different, greater, or more variable in information and communication technology methods versus face-to-face health care delivery models, and how they may be applied in practice.

Methods: We undertook a systemic literature review to provide a critical overview of existing research into the incorporation of ethical principles into telehealth practice. Six databases were searched between March 2016 to May 2016 and again in December 2020 to provide the benefit of currency. A combination of broad terms ("ethics," "ethical," "health," and "care") with the restrictive terms of "telehealth" and "telemedicine" was used in keyword searches. Thematic analysis and synthesis of each paper was conducted, aligned to the framework developed by Beauchamp and Childress.

Results: From the 49 papers reviewed, authors identified or discussed the following ethical principles in relation to telehealth practice: autonomy (69% of authors, 34/49), professional-patient relationship (53% of authors, 26/49), nonmaleficence (41% of authors, 20/49), beneficence (39%, of authors, 19/49), and justice (39% of authors, 19/49).

Conclusions: Although a small number of studies identified ethical issues associated with telehealth practice and discussed their potential impact on service quality and effectiveness, there is limited research on how ethical principles are incorporated into clinical practice. Several studies proposed frameworks, codes of conduct, or guidelines, but there was little discussion or evidence of how these recommendations are being used to improve ethical telehealth practice.
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http://dx.doi.org/10.2196/25698DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8044738PMC
March 2021

Applying evidence-based symptomatic treatments from other clinical disciplines to palliative care.

Palliat Med 2021 03 27;35(3):458-460. Epub 2021 Feb 27.

IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, NSW, Australia.

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http://dx.doi.org/10.1177/0269216321996984DOI Listing
March 2021

Multimorbidity through the lens of life-limiting illness: how helpful are Australian clinical practice guidelines to its management in primary care?

Aust J Prim Health 2021 Jan 19. Epub 2021 Jan 19.

This study assessed Australian clinical practice guidelines for life-limiting index conditions for the extent to which they acknowledged comorbidities and framed management recommendations within the context of older age and reduced life expectancy. A comprehensive search identified current, evidence-based Australian guidelines for chronic life-limiting conditions directed at general practitioners. Guideline content was analysed qualitatively before comorbidity acknowledgements were quantified using a 17-item checklist. Full guidelines were quality appraised using AGREE-II. Ten documents covering chronic obstructive pulmonary disease, heart failure, cancer pain, dementia and palliative care in aged care were identified. Most guidelines addressed one 'comorbid' condition and prompted clinicians to consider patient quality of life and personal preferences. Fewer addressed burden of treatment and half suggested modifying treatments to account for limited life expectancy, age or time horizon to benefit. Half warned of potential adverse drug interactions. Guidelines were of moderate to very high quality. Guidelines naturally prioritised their index condition, directing attention to only the most common comorbidities. However, there may be scope to include more condition-agnostic guidance on multimorbidity management. This might be modelled on the 'guiding principles' approach now emerging internationally from organisations such as the American Geriatrics Society in response to increasing multimorbidity prevalence and evidence limitations.
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http://dx.doi.org/10.1071/PY20164DOI Listing
January 2021

Words describing feelings about death: A comparison of sentiment for self and others and changes over time.

PLoS One 2021 6;16(1):e0242848. Epub 2021 Jan 6.

Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia.

Understanding public attitudes towards death is needed to inform health policies to foster community death awareness and preparedness. Linguistic sentiment analysis of how people describe their feelings about death can add to knowledge gained from traditional self-reports. This study provided the first description of emotive attitudes expressed towards death utilising textual sentiment analysis for the dimensions of valence, arousal and dominance. A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. We analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of 'others', and for longitudinal changes over the time-period of exposure to a course about death (n = 1491). The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others' feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Furthermore, the change over time appeared greater for younger participants, who showed more increase in the dominance (power/control) and pleasantness (valence) in words chosen at course completion. Sentiment analysis of words to describe death usefully extended our understanding of community death attitudes and emotions. Future application of sentiment analysis to other related areas of health policy interest such as attitudes towards Advance Care Planning and palliative care may prove fruitful.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0242848PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7787376PMC
April 2021

Bolstering General Practitioner Palliative Care: A Critical Review of Support Provided by Australian Guidelines for Life-Limiting Chronic Conditions.

Healthcare (Basel) 2020 Dec 11;8(4). Epub 2020 Dec 11.

Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide 5001, Australia.

General practitioners (GPs) are increasingly expected to provide palliative care as ageing populations put pressure on specialist services. Some GPs, however, cite barriers to providing this care including prognostication challenges and lack of confidence. Palliative care content within clinical practice guidelines might serve as an opportunistic source of informational support to GPs. This review analysed palliative care content within Australian guidelines for life-limiting conditions to determine the extent to which it might satisfy GPs' stated information needs and support them to provide quality end-of-life care. Six databases and guideline repositories were searched (2011-2018). Eligible guidelines were those for a GP audience and explicitly based on an appraisal of all available evidence. Content was mapped against an established palliative care domain framework (PEPSI-COLA) and quality was assessed using AGREE-II. The nine guidelines meeting inclusion criteria were heterogenous in scope and depth of palliative care domain coverage. The 'communication' needs domain was best addressed while patient physical and emotional needs were variably covered. Spiritual, out-of-hours, terminal care and aftercare content was scant. Few guidelines addressed areas GPs are known to find challenging or acknowledged useful decision-support tools. A template covering important domains might reduce content variability across guidelines.
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http://dx.doi.org/10.3390/healthcare8040553DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7763828PMC
December 2020

The Roles and Responsibilities of Community Pharmacists Supporting Older People with Palliative Care Needs: A Rapid Review of the Literature.

Pharmacy (Basel) 2020 Aug 12;8(3). Epub 2020 Aug 12.

Research Centre for Palliative Care, Death and Dying, College of Nursing and Health Sciences, Flinders University, Bedford Park, SA 5042, Australia.

Globally, the number of older people requiring appropriate and safe management of medicines is growing. This review aimed to identify the roles and responsibilities of pharmacists supporting older people living in a community setting with their palliative care needs and to synthesise key themes emerging from the data, as well as any gaps in knowledge. The literature search included Medline (Ovid), Scopus, and Cinahl (Ebsco) databases. An English language limit was applied. The search included all international articles and any date of publication. Data were synthesised utilizing a systematic text condensation technique and presented according to Theme, Domain, and Meaning Units. Fourteen studies met the inclusion criteria. Selected papers predominantly focused on care provided by the pharmacists supporting people receiving residential aged care services. Clinical review, supply of medicines, and clinical governance were identified as key pharmacist roles. Pharmacists' communication skills, personal behavioural approach, and positive attitude emerged as supportive characteristics for effective person-centered care. Minimal, or no information, were available related to pharmacists located in general medical practices and in Aboriginal health services sector, respectively. The multifaceted role of pharmacists presents an opportunity to provide comprehensive health care for older populations at the end of their life.
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http://dx.doi.org/10.3390/pharmacy8030143DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7558267PMC
August 2020

End-of-Life Care in Acute Hospitals: Practice Change Reported by Health Professionals Following Online Education.

Healthcare (Basel) 2020 Aug 6;8(3). Epub 2020 Aug 6.

Palliative and Supportive Services, Flinders University, Adelaide, SA 5001, Australia.

Providing quality care for those dying in hospital is challenging for health professionals who receive little training in this. "End of Life Essentials" (EOLE) was developed to address gaps in health professionals' knowledge, skills and confidence in end-of-life care via the provision of online learning modules and practice resources. This study aimed to determine whether respondents could describe clinical practice change as a result of module completion. Deidentified data were collected between October and November 2018 from learners registered for the online learning modules. Both quantitative and qualitative data were extracted and analysed. The survey design and conduct were reviewed, and ethical approval was obtained. Although the response rate was very low, results from = 122 learners show improvements in knowledge, skills, awareness and confidence as a result of the undertaking of the learning modules. Two thirds self-reported practice changes (71%, = 59) following the education, with "communication" cited most commonly ( = 19). The findings suggest that the EOLE education modules can help to improve end-of-life care by increasing health professionals' awareness of good practice as well as their knowledge, skills and confidence. Online learning has also been reinforced as an appropriate forum for end-of-life education. Following education, implementing what has been learned occurs more easily at a personal level rather than at a team and organisational level. Barriers to and enablers of clinical practice change in hospital are described, including the fact that the organisation may not be responsive to changes or have the relevant resources to support change.
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http://dx.doi.org/10.3390/healthcare8030254DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551093PMC
August 2020

End-of-life doulas: A qualitative analysis of interviews with Australian and International death doulas on their role.

Health Soc Care Community 2021 Mar 3;29(2):574-587. Epub 2020 Aug 3.

Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, Bedford Park, SA, Australia.

Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.
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http://dx.doi.org/10.1111/hsc.13120DOI Listing
March 2021

General practitioner strategies for managing patients with multimorbidity: a systematic review and thematic synthesis of qualitative research.

BMC Fam Pract 2020 07 1;21(1):131. Epub 2020 Jul 1.

Research Centre for Palliative Care, Death and Dying, College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide, South Australia, 5001.

Background: General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care.

Methods: Systematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search of Journal of Comorbidity, and the reference lists of included studies.

Results: Thirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence; working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation; and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity; relying on knowledge of patient preferences and unique circumstances to individualise care; and structuring the consultation to create a sense of time and minimise patient risk.

Conclusions: GPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient's unique circumstances, and useable knowledge of each individual's capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.
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http://dx.doi.org/10.1186/s12875-020-01197-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7331183PMC
July 2020

Integrated Care Search: development and validation of a PubMed search filter for retrieving the integrated care research evidence.

BMC Med Res Methodol 2020 01 21;20(1):12. Epub 2020 Jan 21.

Flinders Filters, Flinders University, GPO Box 2100, Adelaide, South Australia, Australia.

Background: Integrated care is an increasingly important principle for organising healthcare. Integrated care models show promise in reducing resource wastage and service fragmentation whilst improving the accessibility, patient-centredness and quality of care for patients. Those needing reliable access to the growing research evidence base for integrated care can be frustrated by search challenges reflective of the topic's complexity. The aim of this study is to report the empirical development and validation of two search filters for rapid and effective retrieval of integrated care evidence in PubMed. One filter is optimised for recall and the other for precision.

Methods: An Expert Advisory Group comprising international integrated care experts guided the study. A gold standard test set of citations was formed from screening Handbook Integrated Care chapter references for relevance. This set was divided into a Term Identification Set (20%) for determining candidate terms using frequency analysis; a Filter Development Set (40%) for testing performance of term combinations; and a Filter Validation Set (40%) reserved for confirming final filter performance. In developing the high recall filter, recall was steadily increased while maintaining precision at ≥50%. Similarly, the high precision filter sought to maximise precision while keeping recall ≥50%. For each term combination tested, an approximation of precision was obtained by reviewing the first 100 citations retrieved in Medline for relevance.

Results: The gold standard set comprised 534 citations. The search filter optimised for recall ('Broad Integrated Care Search') achieved 86.0-88.3% recall with corresponding low precision (47-53%). The search filter optimised for precise searching ('Narrow Integrated Care Search') demonstrated precision of 73-95% with recall reduced to between 55.9 and 59.8%. These filters are now available as one-click URL hyperlinks in the website of International Foundation for Integrated Care.

Conclusions: The Broad and Narrow Integrated Care Search filters provide potential users, such as policy makers and researchers, seamless, reliable and ongoing access to integrated care evidence for decision making. These filters were developed according to a rigorous and transparent methodology designed to circumvent the challenges of information retrieval posed by this complex, multifaceted topic.
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http://dx.doi.org/10.1186/s12874-020-0901-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6971984PMC
January 2020

E-learning: who uses it and what difference does it make?

Int J Palliat Nurs 2019 Oct;25(10):482-493

Nutrition and Dietetics, College of Nursing and Health Sciences, Flinders University, CareSearch, Flinders University, Adelaide, Australia.

Background: CaseSearch 'My Learning' e-learning modules were designed to remind clinicians and practitioners about the role of evidence in practice and demonstrate how to find relevant evidence to make a difference in clinical care. This study aims to describe the role of the modules and their uptake, and determine whether the modules influenced the learners' palliative care practice and whether the modules were easy to use.

Method: Two sets of questions were designed to capture data to evaluate the modules.

Findings: The modules supported the awareness and use of evidence by health professionals. The modules contribute to ongoing professional development for practitioners and can improve palliative care practice.

Conclusion: It is possible to collect meaningful data that contributes to understanding who uses e-learning resources and how useful healthcare professionals find them.
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http://dx.doi.org/10.12968/ijpn.2019.25.10.482DOI Listing
October 2019

The Changing Nature of Palliative Care: Implications for Allied Health Professionals' Educational and Training Needs.

Healthcare (Basel) 2019 Sep 28;7(4). Epub 2019 Sep 28.

Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide 5001, Australia.

CareSearch is an Australian Government Department of Health funded repository of evidence-based palliative care information and resources. The CareSearch Allied Health Hub was developed in 2013 to support all allied health professionals working with palliative care clients in all clinical settings. This cross-sectional online survey sought to elicit allied health professionals palliative care experiences and subsequent considerations for educational and clinical practice needs. The survey was disseminated nationally via a range of organisations. Data was collected about palliative care knowledge, experience working with palliative care clients and professional development needs. Data were evaluated by profession, experience and practice setting. In total, 217 respondents answered one or more survey questions (94%). Respondents (65%) reported seeing >15 palliative care clients per month with 84% seen in hospital and community settings. Undergraduate education underprepared or partially prepared allied health professionals to work with these clients (96%) and 67% identified the need for further education. Access to postgraduate professional development was limited by available backfill and funding. Study findings support the importance of free, accessible, relevant educational and professional development resources to support clinical practice. This is particularly relevant for allied health professionals who have limited opportunities to attend formal professional development sessions.
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http://dx.doi.org/10.3390/healthcare7040112DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6955877PMC
September 2019

The voices of death doulas about their role in end-of-life care.

Health Soc Care Community 2020 01 25;28(1):12-21. Epub 2019 Aug 25.

Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, Bedford Park, SA, Australia.

'Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end-of-life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross-sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.
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http://dx.doi.org/10.1111/hsc.12833DOI Listing
January 2020

Evidence-based palliative care: How can we account for the messy world of practice?

Palliat Med 2019 07;33(7):723-725

4 College of Nursing and Health Sciences, Flinders University, Adelaide, South Australia, Australia.

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http://dx.doi.org/10.1177/0269216319845977DOI Listing
July 2019

Allied Health Clinicians' Understanding of Palliative Care as It Relates to Patients, Caregivers, and Health Clinicians: A Cross-Sectional Survey.

J Allied Health 2019 ;48(2):127-133

Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide, SA 5001, Australia. Tel +61 8 7221 8220.

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 open-ended 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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January 2020

"I want to die in my sleep"-how people think about death, choice, and control: findings from a Massive Open Online Course.

Ann Palliat Med 2019 Sep 28;8(4):411-419. Epub 2019 Mar 28.

Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia.

Background: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages.

Methods: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go".

Results: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance").

Conclusions: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.
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http://dx.doi.org/10.21037/apm.2019.03.07DOI Listing
September 2019

The trajectory of functional decline over the last 4 months of life in a palliative care population: A prospective, consecutive cohort study.

Palliat Med 2019 06 27;33(6):693-703. Epub 2019 Mar 27.

1 Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia.

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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http://dx.doi.org/10.1177/0269216319839024DOI Listing
June 2019

How Can Activity Monitors Be Used in Palliative Care Patients?

J Palliat Med 2019 07 19;22(7):830-832. Epub 2019 Mar 19.

3 Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.

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. 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. 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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http://dx.doi.org/10.1089/jpm.2018.0414DOI Listing
July 2019

Correlates of perceived death competence: What role does meaning-in-life and quality-of-life play?

Palliat Support Care 2019 10;17(5):550-560

Faculty of Health, University of Technology Sydney, Ultimo, NSW, Australia.

Objective: Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life.

Method: During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background.

Result: Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death.

Significance Of Results: The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.
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http://dx.doi.org/10.1017/S1478951518000937DOI Listing
October 2019

Topic search filters: a systematic scoping review.

Health Info Libr J 2019 Mar 21;36(1):4-40. Epub 2018 Dec 21.

College of Nursing and Health Sciences, Flinders University, Bedford Park, SA, Australia.

Background: Searching for topics within large biomedical databases can be challenging, especially when topics are complex, diffuse, emerging or lack definitional clarity. Experimentally derived topic search filters offer a reliable solution to effective retrieval; however, their number and range of subject foci remain unknown.

Objectives: This systematic scoping review aims to identify and describe available experimentally developed topic search filters.

Methods: Reports on topic search filter development (1990-) were sought using grey literature sources and 15 databases. Reports describing the conception and prospective development of a database-specific topic search and including an objectively measured estimate of its performance ('sensitivity') were included.

Results: Fifty-four reports met inclusion criteria. Data were extracted and thematically synthesised to describe the characteristics of 58 topic search filters.

Discussion: Topic search filters are proliferating and cover a wide range of subjects. Filter reports, however, often lack clear definitions of concepts and topic scope to guide users. Without standardised terminology, filters are challenging to find. Information specialists may benefit from a centralised topic filter repository and appraisal checklists to facilitate quality assessment.

Conclusion: Findings will help information specialists identify existing topic search filters and assist filter developers to build on current knowledge in the field.
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http://dx.doi.org/10.1111/hir.12244DOI Listing
March 2019

Evaluation of a toolkit resource package to support positive workplace behaviours in relation to quality end-of-life care in Australian hospitals.

BMJ Open Qual 2018 10;7(4):e000286. Epub 2018 Nov 10.

Palliative and Supportive Services, Flinders University Faculty of Medicine, School of Health Sciences, Adelaide, South Australia, Australia.

Background: The study aimed to determine the effectiveness of an action-orientated toolkit in supporting behaviour change in relation to quality end-of-life care in acute hospital settings. The toolkit was developed to complement a programme of online end-of-life care education.

Methods: A toolkit was developed from an international review of peer-reviewed literature on end of life. Toolkits were distributed (n=428) to Australian healthcare professionals over a 4-week period. An online survey was sent to all recipients; 65 responses were received (16% response rate, excluding emails returned as undeliverable). Semistructured interviews (n=10) were conducted using purposeful sampling to ensure a range of views were captured. The focus of the evaluation was on investigating (1) users' responses to the toolkit and (2) individuals' reported behaviour change.

Findings: The toolkit was well received by users who reported increased confidence in communication around end-of-life matters. 59.3% of users reported making a behaviour change over the previous 4 weeks; 70.8% of those who had not made a change reported they intended to in the near future. Against expectation, the toolkit's appeal went beyond its intended audience in acute hospital settings, for example, personal care workers in aged care settings.

Conclusions: Despite study limitations (self-report of a small, self-selected sample), these early findings suggest that the toolkit has potential to positively impact on end-of-life care practices. However, additional evaluation is needed to determine whether such a toolkit can positively impact on practice and on patient experience at the end of life.
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http://dx.doi.org/10.1136/bmjoq-2017-000286DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6231109PMC
November 2018

Community Views on 'What I Want 'Before I Die'.

Behav Sci (Basel) 2018 Nov 30;8(12). Epub 2018 Nov 30.

Palliative Care, College of Nursing and Health Sciences, Flinders University, Adelaide SA 5000, Australia.

Few previous studies have formally examined people's wishes regarding what they want to do before they die. This study aimed to describe responses to an activity within a Massive Open Online Course (MOOC) where people considered what was important when faced with their own mortality. We asked participants to complete the following: "Before I Die, I want to…". The content of participants' responses ( = 633) was analysed qualitatively with a coding schema developed and then applied. All authors independently coded the first 100 "Before I Die" statements, followed by a second round of coding where themes were verified and confirmed. Following this, two independent raters coded all 633 responses, obtaining 95.24% agreement (Cohen's Kappa = 0.789, < 0.0005). Twelve themes emerged from the data: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others). Reflecting on what is important and on what a person wishes to achieve or address before they die can be seen as a companion process to advance care planning which addresses what an individual wants to plan to manage their actual death.
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http://dx.doi.org/10.3390/bs8120111DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315805PMC
November 2018

What role do Death Doulas play in end-of-life care? A systematic review.

Health Soc Care Community 2019 05 26;27(3):e82-e94. Epub 2018 Sep 26.

Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, Bedford Park, South Australia, Australia.

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end-of-life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of "an eldest daughter" or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.
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http://dx.doi.org/10.1111/hsc.12660DOI Listing
May 2019

Finding the Integrated Care Evidence Base in PubMed and Beyond: A Bibliometric Study of the Challenges.

Int J Integr Care 2018 Aug 17;18(3):11. Epub 2018 Aug 17.

Flinders University, South Australia, AU.

Introduction: Integrated care research evidence should be optimally visible and accessible to stakeholders. This study examines the contribution of specific databases to the discovery of integrated care evidence, and tests the usefulness of Medical Subject Heading (MeSH) indexing of this literature within PubMed.

Methods: We used bibliometric methods to analyse the integrated care literature indexed within six databases between 2007 and 2016. An international expert advisory group assessed the relevance of citations randomly retrieved from PubMed using MeSH term 'Delivery of Health Care, Integrated'.

Results: Integrated care evidence is diffuse, spread across many journals. Between 2007 and 2016, integrated care citations grew substantially, with the rate of increase highest in Embase. PubMed contributes the largest proportion of unique citations (citations not included in any of the other databases analysed), followed by Embase, PsycINFO and CINAHL. On average, expert reviewers rated 42.5% of citations retrieved by MeSH term 'Delivery of Health Care, Integrated' as relevant to integrated care. When these citations were dual reviewed, inter-rater agreement was low.

Conclusion: MeSH terms alone are insufficient to retrieve integrated care content from PubMed. Embase and CINAHL contain unique content not found in PubMed that should not be overlooked. A validated search filter is proposed to simplify the process of finding integrated care research for clinicians, managers and decision-makers.
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http://dx.doi.org/10.5334/ijic.3975DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6137672PMC
August 2018

Role of Community and Professional Engagement in Allied Health Higher Education: The Academic Perspective.

J Allied Health 2018 ;47(3):e87-e90

Southgate Institute for Health, Society and Equity, College of Medicine and Public Health, Flinders University of South Australia, GPO Box 2100, Adelaide, SA 5001, Australia. Tel +61 8 7221 8462.

Community and professional engagement describes a collaborative model of interaction between institutions of higher education and the communities in which they operate. This qualitative study aimed to examine how professional and community engagement is understood and incorporated into the role of staff members within the School of Health Sciences of one university. Twenty-one academic and professional staff were interviewed. Participants identified a range of definitions for both 'community' and 'professional' engagement, as well as the benefits and limitations of such engagement. Ability to conduct engagement was limited by time capacity when competing with other role requirements. Integration of community engagement with research and teaching requires development of a framework that addresses both the common barriers and facilitators to engagement.
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January 2019

Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course.

Omega (Westport) 2020 Jun 26;81(2):242-271. Epub 2018 Mar 26.

Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia.

A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre-post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant's behavior in the community regarding death conversations and preparedness.
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http://dx.doi.org/10.1177/0030222818765813DOI Listing
June 2020
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