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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
  1. Tim Luckett1,
  2. Jane Phillips1,
  3. Miriam Johnson2,
  4. Maja Garcia1,
  5. Priyanka Bhattarai1,
  6. Virginia Carrieri-Kohlman3,
  7. Anne Hutchinson2,
  8. Rebecca T Disler4,
  9. David Currow1,
  10. Meera Agar1,5,
  11. Serra Ivynian1,
  12. Richard Chye6,
  13. Phillip J Newton7,
  14. Patricia M Davidson8
  1. 1 Faculty of Health, Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), University of Technology Sydney, Sydney, Australia
  2. 2 Centre for Health and Population Sciences, Hull York Medical School, The University of Hull, Hull, UK
  3. 3 School of Nursing, University of California San Francisco, San Francisco, California, USA
  4. 4 Melbourne School of Health Sciences, University of Melbourne, Melbourne, Australia
  5. 5 Ingham Institute of Applied Medical Research, Sydney, Australia
  6. 6 Sacred Heart Health Service, St Vincent’s Hospital, Sydney, New South Wales, Australia
  7. 7 Nursing Research Centre, Blacktown Clinical and Research School, Western Sydney University, Sydney, New South Wales, Australia
  8. 8 School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA
  1. Correspondence to Dr Tim Luckett; tim.luckett{at}uts.edu.au

Abstract

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.

  • adult thoracic medicine
  • qualitative research
  • primary care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors TL, JP, MJ, VC-K, AH, RTD, DC, SI, MA, RC, PJN and PMD contributed to the concept and design of the research. TL and MG collected data. TL, MG and PB contributed to analysis. All authors contributed to interpretation of the results and writing of the manuscript.

  • Funding This study was funded by a competitive research grant from the University of Technology Sydney Faculty of Health.

  • Competing interests None declared.

  • Ethics approval Human Research Ethics Committee at St Vincent’s Hospital, Sydney, Australia.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement This is a qualitative research study and making full transcripts available risks reidentification of individual participants. We have included illustrative data that do not identify participants in the Results section of our manuscript.

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