Palliative and Supportive Services Collected Works
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ItemRelationships of eHealth Literacy to Socio-Demographic Characteristics and Engagement in Online Learning: A Quantitative Study(Flinders University, 2021-06)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.
ItemAllied 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)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.
ItemHow Can Activity Monitors Be Used in Palliative Care Patients?(Mary Ann Liebert, Inc., publishers, 2019-03-19)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.
ItemThe 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)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.
ItemSocial 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)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.
ItemMapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care crosssectional survey(Sage Journals, 2018-04-24)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.