Caregivers' Perspectives on the Use of Long-Term Oxygen Therapy for the Treatment of Refractory Breathlessness: A Qualitative Study

Collier, A; Breaden, K; Phillips, JL; Agar, M; Litster, C; Currow, DC

Caregivers' Perspectives on the Use of Long-Term Oxygen Therapy for the Treatment of Refractory Breathlessness: A Qualitative Study

Collier, A

Breaden, K Phillips, JL

Agar, M

Litster, C Currow, DC

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Publication Type:: Journal Article
Citation:: Journal of Pain and Symptom Management, 2017, 53 (1), pp. 33 - 39
Issue Date:: 2017-01-01

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Field	Value	Language
dc.contributor.author	Collier, A https://orcid.org/0000-0002-4930-3470	en_US
dc.contributor.author	Breaden, K	en_US
dc.contributor.author	Phillips, JL https://orcid.org/0000-0002-3691-8230	en_US
dc.contributor.author	Agar, M https://orcid.org/0000-0002-6756-6119	en_US
dc.contributor.author	Litster, C	en_US
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.date.available	2016-06-23	en_US
dc.date.issued	2017-01-01	en_US
dc.identifier.citation	Journal of Pain and Symptom Management, 2017, 53 (1), pp. 33 - 39	en_US
dc.identifier.issn	0885-3924	en_US
dc.identifier.uri	http://hdl.handle.net/10453/90322
dc.description.abstract	© 2016 American Academy of Hospice and Palliative Medicine Context Despite limited clinical evidence, long-term oxygen therapy (LTOT) is used for the management of refractory breathlessness in people with life-limiting illnesses who are not necessarily hypoxemic. Objectives The aim of this study was to understand caregiver factors associated with caring for someone with LTOT from the perspectives and experiences of caregivers themselves. Methods The qualitative study used semistructured interviews. The study was conducted in two states in Australia. Participants (n = 20) were self-nominated caregivers of people receiving LTOT for refractory breathlessness in the palliative setting. Results Data analyses established one overarching theme titled: “Oxygen giveth (something to help caregivers relieve breathlessness) and oxygen taketh away (from patients who lose some autonomy).” The theme captured caregivers' feelings of extreme distress in response to witnessing refractory breathlessness, and oxygen fulfilling several critical and beneficial roles in this context. In parallel, caregivers also explicitly and implicitly articulated several downsides to the use of LTOT. Conclusion Caregivers find caring for someone with refractory breathlessness extremely distressing. The benefits of LTOT are often overestimated, whereas its potential harms are underestimated. As significant stakeholders of people receiving LTOT, caregivers should be provided with opportunities to collaborate with clinicians in evidence-based decision making, efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting including the appropriate use of LTOT to enable them to do so.	en_US
dc.relation.ispartof	Journal of Pain and Symptom Management	en_US
dc.relation.isbasedon	10.1016/j.jpainsymman.2016.06.007	en_US
dc.subject.classification	Anesthesiology	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Dyspnea	en_US
dc.subject.mesh	Oxygen Inhalation Therapy	en_US
dc.subject.mesh	Stress, Psychological	en_US
dc.subject.mesh	Qualitative Research	en_US
dc.subject.mesh	Caregivers	en_US
dc.subject.mesh	Female	en_US
dc.subject.mesh	Male	en_US
dc.title	Caregivers' Perspectives on the Use of Long-Term Oxygen Therapy for the Treatment of Refractory Breathlessness: A Qualitative Study	en_US
dc.type	Journal Article
utslib.citation.volume	1	en_US
utslib.citation.volume	53	en_US
utslib.for	11 Medical and Health Sciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Arts and Social Sciences
pubs.organisational-group	/University of Technology Sydney/Faculty of Arts and Social Sciences/School of Communication
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
utslib.copyright.status	closed_access
pubs.issue	1	en_US
pubs.publication-status	Published	en_US
pubs.volume	53	en_US

Abstract:

© 2016 American Academy of Hospice and Palliative Medicine Context Despite limited clinical evidence, long-term oxygen therapy (LTOT) is used for the management of refractory breathlessness in people with life-limiting illnesses who are not necessarily hypoxemic. Objectives The aim of this study was to understand caregiver factors associated with caring for someone with LTOT from the perspectives and experiences of caregivers themselves. Methods The qualitative study used semistructured interviews. The study was conducted in two states in Australia. Participants (n = 20) were self-nominated caregivers of people receiving LTOT for refractory breathlessness in the palliative setting. Results Data analyses established one overarching theme titled: “Oxygen giveth (something to help caregivers relieve breathlessness) and oxygen taketh away (from patients who lose some autonomy).” The theme captured caregivers' feelings of extreme distress in response to witnessing refractory breathlessness, and oxygen fulfilling several critical and beneficial roles in this context. In parallel, caregivers also explicitly and implicitly articulated several downsides to the use of LTOT. Conclusion Caregivers find caring for someone with refractory breathlessness extremely distressing. The benefits of LTOT are often overestimated, whereas its potential harms are underestimated. As significant stakeholders of people receiving LTOT, caregivers should be provided with opportunities to collaborate with clinicians in evidence-based decision making, efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting including the appropriate use of LTOT to enable them to do so.

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http://hdl.handle.net/10453/90322