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Article ; Online: Managing multimorbidity: a qualitative study of the Australian general practitioner experience.

Damarell, Raechel A / Morgan, Deidre D / Tieman, Jennifer J / Senior, Tim

2023 Volume 40, Issue 2, Page(s) 360–368

Abstract: Background: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system ... ...

Abstract	Background: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system sustainability and accessibility as populations age. Objective: To explore Australian general practitioner perspectives on managing multimorbidity, the factors supporting their work, and those impeding their ability to meet their own standards of care provision. Method: A qualitative study conducted with Australian general practitioners using semistructured, in-depth interviews and inductive thematic data analysis. Results: Twelve interviews with general practitioners were conducted. Three main themes were constructed from the data: Multimorbidity as an encounter with complexity and contingency; Evidence constraints in multimorbidity care; and Concerns for patient safety. System structure and the Australian general practice model restrict general practitioners' ability to provide care to their level of satisfaction by linking short consultation times to practice remuneration. Attitudes toward the applicability of guideline evidence were mixed despite most general practitioners questioning its generalizability. Patient safety concerns pervaded most interviews and largely centered on system fragmentation and insufficient intersectoral communication. General practitioners rely on multiple sources of information to provide patient-centered care but chiefly the accumulated knowledge of their patients. Conclusions: Australian general practitioners share many multimorbidity concerns with international colleagues. While multimorbidity-specific evidence may be unrealistic to expect in the immediate term, system investment and adaptation is needed to support general practice sustainability and clinician ability to provide adequate multimorbidity care, suitably remunerated, into the future.
MeSH term(s)	Humans ; General Practitioners ; Multimorbidity ; Australia ; Qualitative Research ; General Practice
Language	English
Publishing date	2023-02-17
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	605939-9
ISSN	1460-2229 ; 0263-2136
ISSN (online)	1460-2229
ISSN	0263-2136
DOI	10.1093/fampra/cmac096
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Article ; Online: Home symptom management training programme: carer evaluation.

Parker, Deborah / Reymond, Liz / Cooper, Karen / Tieman, Jennifer / Ivynian, Serra

BMJ supportive & palliative care

2024 Volume 13, Issue e3, Page(s) e1390–e1397

Abstract: Objectives: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If ... ...

Abstract	Objectives: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. Methods: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. Results: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. Conclusion: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.
MeSH term(s)	Humans ; Caregivers/education ; Palliative Care/methods ; Delivery of Health Care ; Pharmaceutical Preparations ; Surveys and Questionnaires
Chemical Substances	Pharmaceutical Preparations
Language	English
Publishing date	2024-01-08
Publishing country	England
Document type	Journal Article
ISSN	2045-4368
ISSN (online)	2045-4368
DOI	10.1136/bmjspcare-2022-003580
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Article ; Online: Learning Designers as Expert Evaluators of Usability: Understanding Their Potential Contribution to Improving the Universality of Interface Design for Health Resources.

Adams, Amanda / Miller-Lewis, Lauren / Tieman, Jennifer

International journal of environmental research and public health

2023 Volume 20, Issue 5

Abstract: User-based evaluation by end users is an essential step in designing useful interfaces. Inspection methods can offer an alternate approach when end-user recruitment is problematic. A Learning Designers' usability scholarship could offer usability ... ...

Abstract	User-based evaluation by end users is an essential step in designing useful interfaces. Inspection methods can offer an alternate approach when end-user recruitment is problematic. A Learning Designers' usability scholarship could offer usability evaluation expertise adjunct to multidisciplinary teams in academic settings. The feasibility of Learning Designers as 'expert evaluators' is assessed within this study. Two groups, healthcare professionals and Learning Designers, applied a hybrid evaluation method to generate usability feedback from a palliative care toolkit prototype. Expert data were compared to end-user errors detected from usability testing. Interface errors were categorised, meta-aggregated and severity calculated. The analysis found that reviewers detected
MeSH term(s)	Humans ; User-Computer Interface ; Learning ; Feedback ; Health Resources
Language	English
Publishing date	2023-03-05
Publishing country	Switzerland
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2175195-X
ISSN	1660-4601 ; 1661-7827
ISSN (online)	1660-4601
ISSN	1661-7827
DOI	10.3390/ijerph20054608
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Article: Benefits of Structured Engagement with Target Audiences of a Health Website: Study Design for a Multi-Case Study.

Tieman, Jennifer / Lewis, Virginia

Healthcare (Basel, Switzerland)

2021 Volume 9, Issue 5

Abstract: 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 ... ...

Abstract	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.
Language	English
Publishing date	2021-05-18
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2721009-1
ISSN	2227-9032
ISSN	2227-9032
DOI	10.3390/healthcare9050600
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Article: Ensuring Quality in Online Palliative Care Resources.

Tieman, Jennifer

Cancers

2016 Volume 8, Issue 12

Abstract: Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision ... ...

Abstract	Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels. The internet is fundamentally changing how health information is being distributed and accessed. Clinicians, patients, community members, and decision makers have an unprecedented capacity to find online information about palliative care and end-of-life care. However, it is clear that not all individuals have the skills to be able to find and assess the quality of the resources they need. There are also many issues in creating online resources that are current, relevant and authoritative for use by health professionals and by health consumers. This paper explores the processes and structures used in creating a major national palliative care knowledge resource, the CareSearch website, to meet the needs of health professionals and of patients and their families and carers.
Language	English
Publishing date	2016-12-13
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2527080-1
ISSN	2072-6694
ISSN	2072-6694
DOI	10.3390/cancers8120113
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Article ; Online: Who cares for the carers? carerhelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life.

Tieman, Jennifer / Hudson, Peter / Thomas, Kristina / Saward, Di / Parker, Deborah

BMC palliative care

2023 Volume 22, Issue 1, Page(s) 98

Abstract: Background: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant ... ...

Abstract	Background: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period. Methods: Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised. Results: The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem. Conclusions: The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.
MeSH term(s)	Humans ; Caregivers/psychology ; Australia ; User-Computer Interface ; Palliative Care/psychology ; Family/psychology ; Social Support
Language	English
Publishing date	2023-07-20
Publishing country	England
Document type	Review ; Journal Article
ZDB-ID	2091556-1
ISSN	1472-684X ; 1472-684X
ISSN (online)	1472-684X
ISSN	1472-684X
DOI	10.1186/s12904-023-01225-1
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Article ; Online: Death doula working practices and models of care: the views of death doula training organisations.

Rawlings, Deb / Miller-Lewis, Lauren / Tieman, Jennifer / Swetenham, Kate

BMC palliative care

2023 Volume 22, Issue 1, Page(s) 78

Abstract: Background: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and ... ...

Abstract	Background: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them. The aim of this study was to examine death doula training organisations' views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment. Methods: An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care. Results: Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas. Conclusions: The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence.
MeSH term(s)	Humans ; Doulas ; Hospice Care ; Terminal Care ; Social Support ; Australia
Language	English
Publishing date	2023-06-23
Publishing country	England
Document type	Journal Article
ZDB-ID	2091556-1
ISSN	1472-684X ; 1472-684X
ISSN (online)	1472-684X
ISSN	1472-684X
DOI	10.1186/s12904-023-01200-w
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Article ; Online: Allied health professionals' contribution to care at end of life in aged care settings.

Tieman, Jennifer / Morgan, Deidre / Jones, Kelly / Gordon, Sue / Chakraborty, Amal

Australian journal of primary health

2023 Volume 29, Issue 4, Page(s) 341–348

Abstract: Background: The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health ... ...

Abstract	Background: The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health professionals (AHPs) providing palliative care within an aged care context. Understanding the roles and needs of AHPs providing care during the last months of life in the community and aged care facilities could contribute to workforce planning, targeted information and improved care. Methods: In total, 108 eSurveys were collected between November 2019 to May 2020 from three allied health professions working in government-funded aged care; the majority of these being in residential aged care. Descriptive data are reported on the provision of care in key palliative care domains, care settings and practice activity. Results: Nearly all respondents reported they had worked with older Australians who had palliative care needs. However, over one-third of respondents reported low levels of confidence in supporting clients or residents with palliative care needs. The majority indicated they would benefit from additional education and training and support in palliative care. Conclusions: This study investigated the role of the allied health workforce in contributing to the care of older Australians at the end of life. It has also demonstrated that there are gaps in practice activity and work role that must be addressed to ensure this workforce can support older people with palliative care needs in receipt of aged care services.
MeSH term(s)	Humans ; Aged ; Australia ; Palliative Care ; Allied Health Personnel ; Aging ; Death
Language	English
Publishing date	2023-02-03
Publishing country	Australia
Document type	Journal Article
ZDB-ID	2566332-X
ISSN	1836-7399 ; 1448-7527
ISSN (online)	1836-7399
ISSN	1448-7527
DOI	10.1071/PY22178
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Article ; Online: An evaluation of an online education programme to improve nurses' ability to support carers to use subcutaneous medicines.

Parker, Deborah / Reymond, Liz / Cooper, Karen / Tieman, Jennifer / Ivynian, Serra

International journal of palliative nursing

2023 Volume 29, Issue 11, Page(s) 538–546

Abstract: Background: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous ... ...

Abstract	Background: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. Aim: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. Methods: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. Findings: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. Conclusion: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.
MeSH term(s)	Humans ; Caregivers ; Education, Distance ; Australia ; Palliative Care ; Nurses
Language	English
Publishing date	2023-12-01
Publishing country	England
Document type	Journal Article
ZDB-ID	2115109-X
ISSN	2052-286X ; 1357-6321
ISSN (online)	2052-286X
ISSN	1357-6321
DOI	10.12968/ijpn.2023.29.11.538
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Article ; Online: Equity consideration in palliative care policies, programs, and evaluation: an analysis of selected federal and South Australian documents.

Javanparast, Sara / Anaf, Julia / Tieman, Jennifer

BMC palliative care

2022 Volume 21, Issue 1, Page(s) 109

Abstract: Background: Inequity in access to palliative care and symptom relief is one of the greatest disparities in global health care. A public health approach to palliative care is underpinned by the social view of health that puts an emphasis on equity, ... ...

Abstract	Background: Inequity in access to palliative care and symptom relief is one of the greatest disparities in global health care. A public health approach to palliative care is underpinned by the social view of health that puts an emphasis on equity, community engagement and empowerment, a supportive policy environment, and social determinants of health. Consideration of equity in policy is critical so that it can be translated into equitable services. However, the extent to which Australian palliative care policies incorporate equity, and their translation into actual actions have not been extensively examined. This exploratory study aimed to examine the extent to which Australian federal and South Australian palliative care policies and initiatives incorporate equity, and to identify evidence gaps and research priorities that can inform equity-oriented policies and practices. Methods: We reviewed 25 federal and South Australian documents relating to palliative care published over the past five years. Documents were publicly available from the Australian Government Department of Health website. We used search filter 'Palliative care and end of life' in the Department's resource webpage to narrow down documents to those with palliative care and end of life in the document title and/or content. The initial list was discussed in the research team to ensure key documents are included. Supplementary to document review, we conducted five key informant interviews in South Australia. Interview participants were people from the policy sector, not-for-profit organisations, a funding body and a community advocacy group in South Australia who had knowledge and experience in palliative care policy, practice and research. Documents and interview transcripts were imported into the NVivo 12 software for coding. Content analysis looked at the frequencies of relevant terms, and then more detailed inductive and deductive thematic analysis was undertaken which was guided by an equity action framework. Results: Overall, we found incremental steps forward over the past few years in considering equity in Australian palliative care policies. Key themes that emerged from the study were: identifying population groups experiencing poor access to palliative care, strategies to improve access including increased awareness of palliative care, flexible models of care, building workforce capacity, and the need for greater investment in palliative care research and evaluation. Strategies to address systemic barriers as well as social, political and cultural determinants of inequity was less evident in policy documents. There was little evidence of actions to engage and empower communities. Interviews provided insight on key areas of priority for future palliative care research. Conclusions: Achieving the goal of equity in palliative care for all is complex and multifaceted. It requires strong commitment and actions at policy and government level but also in clinical practice, workforce planning and capacity building, community engagement and research investment to implement and evaluate public health approaches to palliative care.
MeSH term(s)	Australia ; Death ; Health Policy ; Humans ; Palliative Care ; South Australia
Language	English
Publishing date	2022-06-16
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	2091556-1
ISSN	1472-684X ; 1472-684X
ISSN (online)	1472-684X
ISSN	1472-684X
DOI	10.1186/s12904-022-00997-2
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