title: Caregivers' Perspectives on the Use of Long-Term Oxygen Therapy for the Treatment of Refractory Breathlessness: A Qualitative Study.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Discipline Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia. Electronic address: aileen.collier@flinders.edu.au.
authors.forename: Aileen
authors.initials: A
authors.lastname: Collier
authors.affiliation: School of Nursing and Midwifery, Flinders University, Adelaide, South Australia, Australia.
authors.forename: Katrina
authors.initials: K
authors.lastname: Breaden
authors.affiliation: Centre for Cardiovascular and Chronic Diseases, Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia.
authors.forename: Jane L
authors.initials: JL
authors.lastname: Phillips
authors.affiliation: Discipline Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia; South West Sydney Clinical School, University of New South Wales, Sydney, Australia; Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia.
authors.forename: Meera
authors.initials: M
authors.lastname: Agar
authors.affiliation: Discipline Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia.
authors.forename: Caroline
authors.initials: C
authors.lastname: Litster
authors.affiliation: Discipline Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia.
authors.forename: David C
authors.initials: DC
authors.lastname: Currow
mesh_terms: D017028:Caregivers / Q000523:psychology*; D004417:Dyspnea / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D010102:Oxygen Inhalation Therapy; D036301:Qualitative Research; D013315:Stress, Psychological / Q000523:psychology
keywords: Home oxygen; breathlessness; caregivers; homecare; palliative care