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

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• 作者：Aileen Collier ; RN ; PhD^a ; ^{aileen.collier@flinders.edu.au} ; Katrina Breaden ; RN ; PhD^b ; Jane L. Phillips ; RN ; PhD^c ; Meera Agar ; MBBS ; MPC ; PhD ; FAChPM ; FRACP^a ; ^d ; ^e ; Caroline Litster ; BSocSc(Psych)Hons^a ; David C. Currow ; BMed ; MPH ; PhD ; FRACP ; FAHMS^a
• 关键词：Home oxygen ; breathlessness ; palliative care ; homecare ; caregivers
• 刊名：Journal of Pain and Symptom Management
• 出版年：2017
• 出版时间：January 2017
• 年：2017
• 卷：53
• 期：1
• 页码：33-39
• 全文大小：142 K
• 卷排序：53

文摘

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.ObjectivesThe aim of this study was to understand caregiver factors associated with caring for someone with LTOT from the perspectives and experiences of caregivers themselves.MethodsThe 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.ResultsData 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.ConclusionCaregivers 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.