Occupational adaptation for adults living with advanced cancer: A phenomenological longitudinal study.

INTRODUCTION: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. METHODS: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working-aged adults living with advanced cancer. A semi-structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). FINDINGS: Eight adults (40-64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. CONCLUSION: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer.

The intentional pursuit of everyday life while dying: A longitudinal qualitative study of working-aged adults living with advanced cancer.

BACKGROUND: People living with advanced cancer experience functional decline and increasing difficulty participating in activities of daily living over their final year of life, consequently reducing quality of life. Palliative rehabilitation may serve to mitigate some of these challenges by optimising function. However, limited research and theory explore the rehabilitative process of adaptation amid increasing dependency, often experienced by people living with advanced cancer. AIM: To explore the lived experience of everyday life for working-aged adults living with advanced cancer, and how this changes over time. DESIGN: A longitudinal hermeneutic phenomenological approach was employed, using in-depth semi-structured interviews. Data was analysed using inductive thematic analysis, and findings mapped against the Model of Human Occupation and illness experience literature. SETTING/PARTICIPANTS: Purposively sampled working-aged adults (40-64 years) with advanced cancer were recruited by a rural home care team in Western Canada. RESULTS: Thirty-three in-depth interviews were conducted over 19 months with eight adults living with advanced cancer. Advanced cancer and other losses have a disruptive impact on daily life. Despite experiencing progressive functional decline, these adults intentionally sought to participate in valued everyday activities. Adaptation to ongoing deterioration occurred through engagement in daily life. CONCLUSIONS: Despite experiencing disruption to routines and daily life, people living with advanced cancer seek to continue doing what is important to them, albeit in a modified form. Adaptation to functional decline is an active, ongoing process and occurs through continued engagement in activities. Palliative rehabilitation can facilitate participation in everyday life.

Health and disability care providers' experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study.

BACKGROUND: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life. AIM: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability. DESIGN: Qualitative study using reflexive thematic analysis. SETTING/PARTICIPANTS: Semi-structured interviews were conducted with nine health and disability care providers from two Australian states. RESULTS: Five themes were constructed from the data: (1) The significance of place. All participants described how the end-of-life care experience was significantly impacted by the place in which dying occurred. (2) Knowing the person and their needs. Knowledge and familiarity with the individual with long-standing disability were seen as invaluable in terms of providing continued high-quality care. (3) Navigating a new care landscape. For disability support workers, struggling to adapt from providing disability support to end-of-life care was difficult. (4) Complexities of family involvement. Past experiences of families within the healthcare system had resultant impacts on care received by the individual with long-standing disability. (5) Being prepared. Participants felt more was needed in terms of end-of-life planning and discussions around end of life for this cohort. CONCLUSIONS: This research highlights a significant lack of continuity of care and problems at the intersection of the disability and health systems when providing end-of-life care for this cohort. Suggested areas for improvement include team approaches to enable continuity of care and dying in place, and a need for knowledge and skills in this area for all stakeholders.

Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review.

BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. AIM: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. DESIGN: Scoping review methodology. DATA SOURCES: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. RESULTS: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. CONCLUSION: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.

International consensus on occupational therapy interventions for people with palliative care needs: A European Association for Palliative Care Group Concept Mapping study.

BACKGROUND: While evidence shows that occupational therapists can play a key role in the care of people with palliative care needs, more knowledge about effective occupational therapy interventions for this group is needed. AIM: To identify, organise and prioritise intervention components considered to be effective within occupational therapy for people with palliative care needs from the perspective of occupational therapy clinicians, managers and researchers. DESIGN: Group Concept Mapping utilising a mixed methods participatory approach. Using a focus prompt, participants brainstormed, sorted, labelled and rated generated statements about effective occupational therapy intervention components. Multidimensional scaling analysis and cluster analysis were conducted. SETTING/PARTICIPANTS: Snowball recruitment was used to recruit participants. Participants included occupational therapists worldwide who were able to read and write in English and were working as clinicians, managers and/or researchers with occupational therapy interventions for people with palliative care needs. RESULTS: Seventy-two occupational therapists from 15 countries participated in the study representing Asia (n = 3, 20%), Europe (n = 8, 53%), Oceania (n = 2, 13%) and North America (n = 2, 13%). A total of 117 statements were identified and organised into five clusters: (1) being client-centred, (2) promoting occupational engagement to optimise quality of life, (3) involving the social and relational environment, (4) enabling occupations and (5) facilitating occupational adaptation. CONCLUSIONS: Five clusters of core occupational therapy intervention components were considered to be effective when supporting people with palliative care needs. Research should use this knowledge to inform future occupational therapy interventions for this group of people.

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

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.

Experience and acceptability of a carer-focussed intervention in acute oncology settings: A qualitative study of people with advanced cancer and their carers.

OBJECTIVES: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool-Intervention (CSNAT-I) has shown promise in supporting carers' needs in this context. This study aimed to explore patient and carers experiences with and views on the acceptability of the CSNAT-I delivered by occupational therapists in an acute oncology setting. METHODS: People with advanced cancer and their carers who had previously received the CSNAT-I as part of usual care while admitted to an Australian specialist cancer centre or acute hospital were invited to participate in interviews exploring their perceptions of the intervention. Data were analysed thematically. RESULTS: Two patients and 10 carers participated in semi-structured interviews. Three themes were constructed from the data: Carers viewed the CSNAT-I as comprehensive process that (1) 'covered everything' related to discharge planning; (2) generated an 'increased awareness of needs' for themselves, patients, and clinicians; and (3) triggered an emotional response of feeling 'wrapped up in care' that was maintained as they moved from hospital to home. CONCLUSION: This study has demonstrated that the CSNAT-I was highly acceptable to carers as part of existing discharge processes supporting them through the transition from hospital to home and can be delivered by occupational therapists and other clinicians with a natural synergy to discharge planning. These findings will inform further development and testing of the delivery model of the CSNAT-I in future trials.

Care of older people and people requiring palliative care with COVID-19: guidance from the Australian National COVID-19 Clinical Evidence Taskforce.

INTRODUCTION: Older people living with frailty and/or cognitive impairment who have coronavirus disease 2019 (COVID-19) experience higher rates of critical illness. There are also people who become critically ill with COVID-19 for whom a decision is made to take a palliative approach to their care. The need for clinical guidance in these two populations resulted in the formation of the Care of Older People and Palliative Care Panel of the National COVID-19 Clinical Evidence Taskforce in June 2020. This specialist panel consists of nursing, medical, pharmacy and allied health experts in geriatrics and palliative care from across Australia. MAIN RECOMMENDATIONS: The panel was tasked with developing two clinical flow charts for the management of people with COVID-19 who are i) older and living with frailty and/or cognitive impairment, and ii) receiving palliative care for COVID-19 or other underlying illnesses. The flow charts focus on goals of care, communication, medication management, escalation of care, active disease-directed care, and managing symptoms such as delirium, anxiety, agitation, breathlessness or cough. The Taskforce also developed living guideline recommendations for the care of adults with COVID-19, including a commentary to discuss special considerations when caring for older people and those requiring palliative care. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINE: The practice points in the flow charts emphasise quality clinical care, with a focus on addressing the most important challenges when caring for older individuals and people with COVID-19 requiring palliative care. The adult recommendations contain additional considerations for the care of older people and those requiring palliative care.

Assistive devices among people living at home with advanced cancer: Use, non-use and who have unmet needs for assistive devices?

OBJECTIVE: To investigate which assistive devices people with advanced cancer have and whether they are in use. In addition, to explore the characteristics of people with advanced cancer who have unmet needs for assistive devices. METHODS: This descriptive cross-sectional study used data from a randomised controlled trial evaluating efficacy of an occupational therapy-based intervention. Participants were 237 people with advanced cancer. Data were collected by means of instruments about demography, functioning and assistive devices. RESULTS: The most frequent assistive devices possessed by the participants were as follows: (1) small aids for dressing (47%), (2) Pillow for positioning (40%) and (3) electrically operated adjustable bed (39%). The prevalence of assistive devices was 92% (95% confidence interval [CI]: 88%-95%) with 14.2% non-use, largest for trolley tables (50%). In all, 27.4% of the participants were found to have unmet needs for assistive devices. These participants had similar characteristics to the other participants except from lower activity of daily living (ADL) ability (p values = <0.001). CONCLUSION: The assistive devices possessed by the participants were primarily for positioning and resting, and most were in use. More than a fourth of the participants had unmet needs for assistive devices and were characterised by lower ADL ability.

Lower workforce participation is associated with more severe persisting breathlessness.

BACKGROUND: Not being able to work has negative health, social and financial consequences. Persisting breathlessness is prevalent in working-aged people. Is it associated with lower workforce participation? This study, using the South Australian Health Omnibus, aimed to explore associations between paid workforce participation and persisting breathlessness intensity, and economic impacts on income in people of working age. METHODS: This cross-sectional study conducted face-to-face interviews with a random sample of adults in South Australia (n = 8916). Questions included key demographic data, workforce participation and the presence and intensity of persisting breathlessness. Data from working-aged respondents (20-65 years of age) were standardised to the census for regression analyses. Work was coded to paid full- or part-time work or 'other'. Persisting breathlessness (more than three of the last six months) used the modified Medical Research Council breathlessness scale (aggregated to 0, 1, 2-4). Opportunity cost valuations compared annual income foregone by persisting breathlessness severity. RESULTS: Of people interviewed, 6,608 were working-aged (49.9% male; 67.5% had post-secondary qualifications; 70.9% were in paid full- or part-time work; and 1.7% had mMRC score 2-4). Workforce participation dropped in working aged people with increasing breathlessness: mMRC 0, 70.6%; mMRC 1, 51.7%; mMRC 2-4, 20.3%. In the regression model, people with the most severe breathlessness were much less likely to work (OR 0.14; 95% CI 0.09, 0.22). Annual income foregone by people with persisting breathlessness was AU$10.7 billion (AU$9.1b for full-time and AU$1.6b for part-time work; range AU$5.9b, AU$49.7b). CONCLUSION: Worsening persisting breathlessness is associated with lower workforce participation with direct financial consequences, greatest for older males.

Contemporary occupational priorities at the end of life mapped against Model of Human Occupation constructs: A scoping review.

INTRODUCTION: People with end-of-life care needs are seen in an increasingly diverse range of health and community settings. Opportunity for continued occupational participation is highly valued by people at the end of life. This scoping review sought to identify the priorities and preferences for participation at the end of life and to map findings using the model of human occupation. METHODS: A search strategy informed by the research question was developed in collaboration with a research librarian. Data sources used were Ovid Medline(R), CINAHL, Ovid Emcare, Scopus, Web of Science and PsychInfo. Studies that focused on clinician perspectives, clinical care, grief and loss, did not clearly identify end-stage diseases, <18 years and written in languages other than English were excluded. FINDINGS: Forty-four studies were included with a total of 1,070 study participants. Inductively developed themes were mapped against the model of human occupation constructs of volition (personal causation, values, interests), habituation (habits of occupational performance and routine), performance capacity and the lived body within the physical, social and occupational environment. The majority of findings sat within the construct of volition, particularly around sense of personal capacity, self-efficacy and values. At the end of life, people prioritise ongoing engagement in valued occupations even if participation is effortful. As disease progresses, opportunity to exert influence and control over this participation and engagement increases in importance. Personal causation plays an important role in the experience of occupational participation at this time. CONCLUSION: This review provides important insights into the occupational priorities of people at the end of life and the importance of supporting agency and volition at this time. The model of human occupation and its client-centred focus offer a framework for a more robust examination of ways to enhance volitional capacity and enable occupational participation for people at the end of life.

Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: lung cancers and non-malignant end-stage respiratory diseases.

BACKGROUND: Malignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases. AIM: To compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data. SETTING/PARTICIPANTS: The Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0-10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing. RESULTS: In lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65-81) than non-malignant end-stage respiratory diseases (81 years; IQR 73-87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both. CONCLUSIONS: In this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses.

Conserving dignity and facilitating adaptation to dependency with intimate hygiene for people with advanced disease: A qualitative study.

BACKGROUND: People at the end of life experience increased dependence with self-care as disease progresses, including care with intimate hygiene. Dependence with intimate hygiene has been identified as a factor that may compromise dignity at the end of life. However, adaption to increased dependency and subsequent impact on dignity with intimate hygiene is an under-researched area. AIM: This study sought to understand how people at the end of life experience dignity with intimate hygiene when function declines and how people adapt to increased dependence with intimate hygiene needs. DESIGN: A qualitative design was employed using a hermeneutic phenomenological perspective which privileges participant perspectives. Findings were mapped against occupational therapy and dignity literature. SETTING/PARTICIPANTS: Participants were people with advanced disease receiving inpatient or community palliative care. RESULTS: Eighteen interviews were conducted with people about their experiences and perspectives of dignity with intimate hygiene. The following themes were constructed from the data: (1) There's a way of doing and a way of asking, (2) Putting each other at ease, (3) It's just how it is, (4) Regaining and retaining control. How people adjust to dependence with intimate hygiene is individually mediated. Patterns of occupational adaptation to increased dependence with intimate hygiene and practical implications for care are discussed. CONCLUSION: Adaptation to increased dependence with intimate hygiene is facilitated by enabling moments of micro-competence and agency over how care is received. Carers play a pivotal role in compromising or conserving the dignity with intimate hygiene at the end of life.

"It's given me confidence": a pragmatic qualitative evaluation exploring the perceived benefits of online end-of-life education on clinical care.

BACKGROUND: Hospital admissions for end-of-life care are increasing exponentially across the world. Significant numbers of health professionals are now required to provide end-of-life care with minimal training. Many health professionals report they lack confidence to provide this care, particularly those in acute hospital settings. This study explored the perceived benefits of online education on health professionals' capacity to provide end-of-life care. METHODS: This qualitative study adopted a pragmatic approach. Thirty semi-structured interviews were conducted with allied health professionals, nurses and doctors who had completed a minimum of three End-of-Life Essentials online education modules. Interviews were held on line and face-to-face, audio-recorded and transcribed verbatim. Demographic data were also collected. Three major themes and one minor theme were constructed from the data using inductive thematic analysis. RESULTS: Themes were (1). Perceptions of preparedness to provide end-of-life care, (2). Shifts in approaching end-of-life discussions and (3). Motivation for engagement with online modules. Participants reported validation of knowledge and improved confidence to have end-of-life discussions with patients, carers and team members. They also noted improved ability to recognise the dying process and improved conversations with team members about patient and carer needs. Videos portraying a novice and then more able end-of-life discussions were particularly valued by participants. Modules provided practical guidance on how to engage in discussions about the end of life and care needs. Participants were self-motivated to improve their knowledge and skills to enhance end-of-life care provision. Continuing professional development requirements were also a motivator for module completion. CONCLUSIONS: This study explored health professionals' perspectives about the perceived benefits of online education modules on their clinical practice. Module completion enhanced participant confidence and self-reported improved competence in end-of-life care provision. Findings build on existing research that supports the valuable role online education plays in supporting confidence and ability to actively engage with patients, carers and colleagues about provision of end-of-life care; however, self-report cannot be used as a proxy for improved clinical competence.

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

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.

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

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.

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

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.

Case conferencing for palliative care patients - a survey of South Australian general practitioners.

Benefits of case conferencing for people with palliative care needs between a general practitioner, the person and other key participants include improving communication, advance care planning, coordination of care, clarifying goals of care and support for patient, families and carers. Despite a growing evidence base for the benefits, the uptake of case conferencing has been limited in South Australia. The aim of this study is to explore the beliefs and practice of South Australian general practitioners towards case conferencing for people with palliative care needs. Using an online survey, participants were asked about demographics, attitudes towards case conferencing and details about their most recent case conference for a person with palliative care needs. Responses were received from 134 general practitioners (response rate 11%). In total, 80% valued case conferencing for people with palliative care needs; however, <25% had been involved in case conferencing in the previous 2years. The major barrier was time to organise and coordinate case conferences. Enablers included general practitioner willingness or interest, strong relationship with patient, specialist palliative care involvement and assistance with organisation. Despite GPs' beliefs of the benefits of case conferencing, the barriers remain significant. Enabling case conferencing will require support for organisation of case conferences and review of Medicare Benefits Schedule criteria for reimbursement.

Implementation of a pilot telehealth programme in community palliative care: A qualitative study of clinicians' perspectives.

BACKGROUND: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems' imperatives for improved service delivery within current budgets. Clinicians' experiences and attitudes play a key role in the implementation of any innovation in service delivery. AIM: To explore clinicians' perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. DESIGN: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. SETTING/PARTICIPANTS: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. RESULTS: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. CONCLUSION: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Using telehealth to support end of life care in the community: a feasibility study.

BACKGROUND: Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. METHODS: This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient's general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). RESULTS: The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. CONCLUSIONS: The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013.