Rural Clinical School - Research Publications
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ItemNo Preview AvailableService Level Characteristics of Rural Palliative Care for with Chronic Disease(ELSEVIER SCIENCE INC, 2023-10)CONTEXT: Despite clear benefit from palliative care in end-stage chronic, non-malignant disease, access for rural patients is often limited due to workforce gaps and geographical barriers. OBJECTIVES: This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. METHODS: A cross-sectional online survey was distributed by email to rural health service leaders. Nominal and categorical data were analyzed descriptively, with free-text questions on barriers and facilitators in chronic disease analyzed using qualitative content analysis. RESULTS: Of 42 (61.7%) health services, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. A total of 17 (41.5%) reported an on-site specialist palliative care team, primarily nurses (19, 59.5%). Nearly all services (41, 95.3%) reported off-site specialist palliative care access, including: established external relationships (38, 92.7%); visiting consultancy (26, 63.4%); and telehealth (18, 43.9%). Perceived barriers in chronic disease included: lack of specific referral pathways (18; 62.1%); negative patient expectations (18; 62.1%); and availability of trained staff (17; 58.6%). Structures identified to support palliative care in chronic disease included: increased staff/funding (20, 75.0%); formalized referral pathways (n = 18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50%). CONCLUSION: Palliative care service structure and capacity varies across rural areas, and relies on a complex, at times ad hoc, network of onsite and external supports. Services for people with chronic, non-malignant disease are sparse and largely unknown, with a call for the development of specific referral pathways to improve patient care.
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ItemUnderstanding potentially avoidable hospitalisations in a rural Australian setting from the perspectives of patients and health professionals: a qualitative study and logic model.(Portico, 2022)BACKGROUND: Potentially avoidable hospitalisations (PAHs) are proxy measures of effective primary care at a population level. PAHs are higher in rural and disadvantaged areas. This qualitative study sought a deeper understanding of PAHs for chronic health conditions in a rural context from the perspectives of patients and health professionals, and aimed to develop a logic model for rural health services to identify intervention targets. METHODS: Patients with chronic obstructive pulmonary disease, congestive cardiac failure or type 2 diabetes, admitted to a rural hospital in Australia and local health professionals were invited to participate in interviews in late 2019. Semistructured interviews were recorded, transcribed verbatim and thematically analysed. Themes were mapped against a programme logic model developed in a similar study. RESULTS: patients and 16 health professionals participated. The logic model encompassed patient level (knowledge, skills, health status), provider level (workforce availability, attributes) and system level (clinical pathways) contexts. These contexts influenced key mechanisms of relationships, continuity of care and capacity to offer services. Outcomes included responsive and timely access to care, improved clinical outcomes and resource use. Themes that did not readily map to the logic model included socioeconomic disadvantage and healthcare costs, which influenced affordability and equity of access. CONCLUSION: Patients' complex health and social circumstance, health service access and unclear care pathways were strong themes associated with PAH in this rural context. Patient, provider and system contexts influencing key mechanisms and outcomes need to be understood when designing solutions to address PAHs in rural settings. Ideally, interventions should address the cost of healthcare alongside interventions to enhance relationships, continuity of care and capacity to offer services.
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ItemA new model for general practice-led, regional, community-based, memory clinics.(Springer Science and Business Media LLC, 2022-09-20)BACKGROUND: Dementia is a major international health issue with high impact on the patient, relatives, and broader society. Routine screening for dementia is limited, despite known benefit of early detection and intervention on quality of care and patient outcomes. Screening is particularly limited in rural and regional areas, despite high burden and projected growth of dementia in these populations. The current study aimed to implement a new general practitioner (GP) led, multidisciplinary, model of care providing dementia detection and referral pathway to a community-based specialist clinic across six regional general practices. METHODS: Cross-sectional analysis of dementia screening and referral characteristics in the St Anthony Family Medical Practices group based in the regional area of Loddon-Mallee, Victoria. Data were collected on demographics and relevant medical history. Cognitive state was assessed using the Mini-Mental State Examination (MMSE), GP Assessment of Cognition (GPCog), and Geriatric Depression Scale (GDS). Referrals and referral outcomes were recorded for geriatrician, psycho-geriatrician, or both. RESULTS: Eight hundred and eighteenth patients over 65 years were screened, accounting for approximately 24.2% of 65 and over presentations for the practice network. Of those screened, 68.9% were indicated for referral and 30.3% of these were successfully referred. Of the indicated patients who received referrals, 34.2% declined. Many who declined referral had intermediate scores on the cognitive assessments utilized. CONCLUSION: Standardised models of care, integrated within community services, are necessary to improve access to early detection, referral and quality management of dementia. The St Anthony Memory Service model will be invaluable in informing future service development, and in particular the development of services for people living with dementia in rural and regional communities.
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ItemInsights from Australians with respiratory disease living in the community with experience of self-managing through an emergency department 'near miss' for breathlessness: a strengths-based qualitative study(BMJ PUBLISHING GROUP, 2017-12)OBJECTIVES: Breathlessness 'crises' in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED 'near misses' where they considered going to the ED but successfully self-managed instead. DESIGN AND METHODS: A qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen's Transactional Model of Stress and Coping informed interpretive themes. RESULTS: Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management; managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services. CONCLUSIONS: In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients' generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge about when ED presentation is necessary. Complementary initiatives are needed to improve coordinated, person-centred care. Future research should seek ways to break the cyclical relationship between affective and sensory-perceptual dimensions of breathlessness.
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ItemNursing Research Priorities in Critical Care, Pulmonary, and Sleep: International Delphi Survey of Nurses, Patients, and Caregivers An Official American Thoracic Society Workshop Report(AMER THORACIC SOC, 2020-01)The objective of this workshop was to determine current nursing research priorities in critical care, adult pulmonary, and sleep conditions through input from consumer (patient, family, and formal and informal caregivers) and nursing experts around the world. Working groups composed of nurses and patients selected potential research priorities based on patient insight and a literature review of patient-reported outcomes, patient-reported experiences, and processes and clinical outcomes in the focal areas. A Delphi consensus approach, using a qualitative survey method to elicit expert opinion from nurses and consumers was conducted. Two rounds of online surveys available in English, Spanish, and Chinese were completed. A 75% or greater threshold for endorsement (combined responses from nursing and consumer participants) was determined a priori to retain survey items. A total of 837 participants (649 nurses and 188 patients, family, and/or caregivers) from 45 countries responded. Survey data were analyzed and nursing research priorities that comprise 23 critical care, 45 adult pulmonary, and 16 sleep items were identified. This project was successful in engaging a wide variety of nursing and consumer experts, applying a patient-reported outcome/patient-reported experience framework for organizing and understanding research priorities. The project outcome was a research agenda to inform, guide, and aid nurse scientists, educators, and providers, and to advise agencies that provide research and program funding in these fields.
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ItemBenefits of the 'village': a qualitative exploration of the patient experience of COPD in rural Australia(BMJ PUBLISHING GROUP, 2019-10)OBJECTIVES: This study sought to explore patients' experiences of living with, and adapting to, chronic obstructive pulmonary disease (COPD) in the rural context. Specifically, our research question was 'What are the barriers and facilitators to living with and adapting to COPD in rural Australia?' DESIGN: Qualitative, semi-structured interviews. Conversations were recorded, transcribed verbatim and analysed using thematic analysis following the COnsolidated criteria for REporting Qualitative research guidelines. SETTING: Patients with COPD, admitted to a subregional hospital in Australia were invited to participate in interviews between October and November 2016. MAIN OUTCOME MEASURES: Themes were identified that assisted with understanding of the barriers and facilitators to living with, and adapting to, COPD in the rural context. RESULTS: Four groups of themes emerged: internal facilitators (coping strategies; knowledge of when to seek help) and external facilitators (centrality of a known doctor; health team 'going above and beyond' and social supports) and internal/external barriers to COPD self-management (loss of identity, lack of access and clear communication, sociocultural challenges), which were moderated by feelings of inclusion or isolation in the rural community or 'village'. CONCLUSIONS: Our findings suggest that community inclusion enhances patients' ability to cope and ultimately self-manage COPD. This is facilitated by living in a supportive 'village' environment, and included a central, known doctor and a healthcare team willing to go 'above and beyond'. Understanding, or supplementing, these social networks within the broader social structure may assist people to manage chronic disease, regardless of rural or metropolitan location.
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ItemRural chronic disease research patterns in the United Kingdom, United States, Canada, Australia and New Zealand: a systematic integrative review(BMC, 2020-05-24)BACKGROUND: People living in rural and remote communities commonly experience significant health disadvantages. Geographical barriers and reduced specialist and generalist services impact access to care when compared with metropolitan context. Innovative models of care have been developed for people living with chronic diseases in rural areas with the goal of overcoming these inequities. The aim of this paper was to describe the characteristics and outcomes of studies investigating innovative models of care for people living with chronic disease in rural areas of developed countries where a metropolitan comparator was included. METHODS: An integrative systematic review was undertaken. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) method was used to understand the empirical and theoretical data on clinical outcomes for people living with chronic disease in rural compared with metropolitan contexts and their models of care in Australia, New Zealand, United States, Canada and the United Kingdom. RESULTS: Literature searching revealed 620 articles published in English between 1st January 2000 and 31st March 2019. One hundred sixty were included in the review including 68 from the United States, 59 from Australia and New Zealand (5), 21 from Canada and 11 from the United Kingdom and Ireland. 53% (84) focused on cardiovascular disease; 27% (43) diabetes mellitus; 8% (12) chronic obstructive pulmonary disease; and 13% (27) chronic kidney disease. Mortality was only reported in 10% (16) of studies and only 18% (29) reported data on Indigenous populations. CONCLUSIONS: This integrated review reveals that the published literature on common chronic health issues pertaining to rural and remote populations is largely descriptive. Only a small number of publications focus on mortality and comparative health outcomes from health care models in both urban and non-urban populations. Innovative service models and telehealth are together well represented in the published literature but data on health outcomes is relatively sparse. There is significant scope for further directly comparative studies detailing the effect of service delivery models on the health outcomes of urban and rural populations. We believe that such data would further knowledge in this field and help to break the deadly synergy between increased rurality and poorer outcomes for people with chronic disease.
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ItemContent and quality of websites supporting self-management of chronic breathlessness in advanced illness: a systematic review(NATURE PUBLISHING GROUP, 2016-05-26)Chronic breathlessness is a common, burdensome and distressing symptom in many advanced chronic illnesses. Self-management strategies are essential to optimise treatment, daily functioning and emotional coping. People with chronic illness commonly search the internet for advice on self-management. A review was undertaken in June 2015 to describe the content and quality of online advice on breathlessness self-management, to highlight under-served areas and to identify any unsafe content. Google was searched from Sydney, Australia, using the five most common search terms for breathlessness identified by Google Trends. We also hand-searched the websites of national associations. Websites were included if they were freely available in English and provided practical advice on self-management. Website quality was assessed using the American Medical Association Benchmarks. Readability was assessed using the Flesch-Kincaid grades, with grade 8 considered the maximum acceptable for enabling access. Ninety-one web pages from 44 websites met the inclusion criteria, including 14 national association websites not returned by Google searches. Most websites were generated in the USA (n=28, 64%) and focused on breathing techniques (n=38, 86%) and chronic obstructive pulmonary disease (n=27, 61%). No websites were found to offer unsafe advice. Adherence to quality benchmarks ranged from 9% for disclosure to 77% for currency. Fifteen (54%) of 28 written websites required grade ⩾9 reading level. Future development should focus on advice and tools to support goal setting, problem solving and monitoring of breathlessness. National associations are encouraged to improve website visibility and comply with standards for quality and readability.