Informal caregivers experience of supplemental oxygen in pulmonary fibrosis

Abstract

BackgroundPatients prescribed supplemental oxygen (O2) therapy face challenges as they adjust to being constantly “tethered” to an oxygen delivery device. Informal caregivers (ICs) of patients with pulmonary fibrosis (PF) face their own, often overlooked hardships when O2 is brought into their home and added to their lives. Our aim was to understand the multiple effects of supplemental oxygen therapy on ICs of patients with PF.MethodsWe conducted single, semi-structured telephone interviews with twenty ICs of patients with PF who were using O2 for at least 8 months. We performed a qualitative, content analysis based in grounded theory to examine data across subjects.ResultsICs initially reacted to O2 with trepidation and sadness as they came to recognize the changes it would cause in the lives of their patient-loved one (PLO). ICs recognized both beneficial and negative effects of O2 on their PLOs. ICs also realized that O2 created significant changes in their own lives, including introducing new roles and responsibilities for them, altering their home environments and significantly impacting their relationships with their PLOs. Although O2 was a tangible and constant reminder of disease progression, over time ICs were able to adapt and accept their new lives with O2.ConclusionICs of patients with PF experience many life changes when their PLO is prescribed O2. Having O2 prescribers anticipate and recognize these challenges provides an opportunity to give support and guidance to ICs of PF patients who require O2 in the hopes of limiting the negative impact of O2 on their lives.Trial registration Clinicaltrials.gov, registration number NCT01961362. Registered 9 October 2013.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-017-0710-0) contains supplementary material, which is available to authorized users.

The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

“…Many patients felt guilty for not being able to fulfil their usual roles [28]. Sadness and depression were frequently reported [1,8,13,19,21,22,27]. In a European survey, 80% of patients wanted the possibility of psychological support and 23% thought it was lacking in current care [24].…”

“…Some patients experienced panic due to shortness of breath [3]. Being prescribed supplemental oxygen was often viewed as "losing the battle" [19] and was associated with a loss of hope [8]. Patients felt vulnerable using oxygen, and ashamed or embarrassed because it made their illness visible to others [8,15].…”

“…Some patients feared passing on the disease to their families [15]. Patients and families were often living at a different pace; some felt frustrated that their loved ones "can't keep up", while many experienced difficulties in travelling together [19].…”

Impact of novel antifibrotic therapy on patient outcomes in idiopathic pulmonary fibrosis: patient selection and perspectives

“…Supplemental oxygen may improve dyspnea for some patients with IPF, but it is unknown who will benefit and who will not. 48 , 49 The burdens of supplemental oxygen may worsen these symptoms for some patients 33 , 50 , 51 and is independently associated with impaired HRQL. 5 , 12 , 52 …”

“…If supplemental oxygen is necessary, patients and caregivers should be educated about realistic expectations for oxygen use including a variable impact on symptoms and the likely overall negative impact on quality of life for both. 48 , 51 , 58 , 59 Patients should also be referred to PR programs for exercise training to improve functional capacity, 37 , 40 , 60 to gain information about their disease, and to improve HRQL as previously discussed. Appropriate patients should be referred for lung transplant evaluation at a dedicated center.…”