Informal caregivers experience of supplemental oxygen in pulmonary fibrosis

BACKGROUND: Patients prescribed supplemental oxygen (O(2)) 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 O(2) 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. METHODS: We conducted single, semi-structured telephone interviews with twenty ICs of patients with PF who were using O(2) for at least 8 months. We performed a qualitative, content analysis based in grounded theory to examine data across subjects. RESULTS: ICs initially reacted to O(2) 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 O(2) on their PLOs. ICs also realized that O(2) 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 O(2) was a tangible and constant reminder of disease progression, over time ICs were able to adapt and accept their new lives with O(2). CONCLUSION: ICs of patients with PF experience many life changes when their PLO is prescribed O(2). Having O(2) prescribers anticipate and recognize these challenges provides an opportunity to give support and guidance to ICs of PF patients who require O(2) in the hopes of limiting the negative impact of O(2) on their lives. TRIAL REGISTRATION: Clinicaltrials.gov, registration number NCT01961362. Registered 9 October 2013. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12955-017-0710-0) contains supplementary material, which is available to authorized users.