Insights 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

Abstract

ObjectivesBreathlessness ‘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 methodsA 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.ResultsInterviews 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.ConclusionsIn 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.

Activities Forgone because of Chronic Breathlessness: A Cross-Sectional Population Prevalence Study

“…Timely and accurate identification of the impact of the symptom, and routine evaluation over the course of the illness, will facilitate more targeted self-management options for people who live with this symptom. 11,21,35 At the health system level, systematic screening and assessment may help to reduce the unplanned use of primary and secondary health care, including acute-on-chronic breathlessness presentations to emergency departments and hospital admissions. 10,[36][37][38][39] Future therapeutic interventions should aim to improve people's ability to perform activities both for basic self-care, and to enrich life, reduce/prevent social isolation, and its impact on mental well-being; and to stop and/or reverse deconditioning.…”

“…9 Identifying the impact of chronic breathlessness on people's activities in the general population is pivotal for designing and promoting self-management and other symptom treatment strategies, and to help ultimately reduce unplanned health service utilization. 10,11 The association between chronic breathlessness and impaired function has been demonstrated, but the range of the activities forgone as chronic breathlessness worsens has not been systematically captured at a population level. Describing any impact on populations (recruited independently of people's contact with health services) is important, given that chronic breathlessness remains largely invisible to health systems.…”

The roles of dispositional coping style and social support in helping people with respiratory disease cope with a breathlessness crisis

“…The aim of the original study was to explore the ED‐related decision‐making from the perspective of people with experience of successfully self‐managing through a breathlessness crisis. Detailed methods for this study have been reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong, Sainsbury, & Craig, ) in an open access journal (Luckett et al, ). The current paper focusses on a secondary analysis of coping moderators.…”

“…The Transactional Model of Stress and Coping (‘Transactional Model’) (Lazarus & Cohen, ) suggests that people's capacity to cope with a stressor such as chronic illness is affected by their subjective appraisal of the stressor and self‐efficacy in controlling it using the means at their disposal. When applied to patient experiences of breathlessness crises, the Transactional Model has suggested that the most important factors in avoiding ED presentation are perceived control over the crisis and self‐efficacy in managing the affective dimension of experience (Luckett et al, ).…”

Benefits of the ‘village’: a qualitative exploration of the patient experience of COPD in rural Australia

“…In a rural Canadian study, long-term relationships with general practitioners (GPs), community support and personalised care helped to overcome issues of restricted specialist access in COPD care 14. In the Australian context, a study found that self-monitoring of symptoms and support from health professionals assisted patients to manage breathing difficulties and avoid emergency department presentations 15. Social inclusion and a sense of belonging in COPD has been shown to influence a person’s experience of living with COPD 16 17.…”