Rural Clinical School - Research Publications
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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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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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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.