Education Needs in Oxygen Therapy for Individuals with Interstitial Lung Disease in Alberta
Creators: Rowland, Samira D
Publisher: name: University of Alberta Library
Year: 2024

<p>Interstitial lung disease (ILD) is a rare, chronic, and progressive lung disease. Individuals with ILD experience chronic cough, breathlessness, fatigue, and consequently, a reduced health-related quality of life (HRQL). The American Thoracic Society guidelines recommend long-term supplemental oxygen therapy (O₂) in ILD for its potential to improve symptoms in individuals with hypoxemia at rest or upon exertion. However, numerous studies suggest that individuals who use O₂ face several obstacles, including the physical burden of O₂ devices and the associated social stigma, leading to reduced participation in daily activities. Several studies highlight the importance of education in facilitating the integration of O₂ into the lives of individuals with ILD. However, preliminary data from Alberta shows inadequate patient education and support for individuals living with ILD who require O₂. Thus, the aim of our study is to understand the educational needs for individuals with ILD who are utilizing O₂. As many educational tools are based on work in chronic obstructive pulmonary disease (COPD), a secondary aim was to examine how O₂ education needs may differ between ILD and COPD. A qualitative research approach using the methodology of Interpretative Description was used to explore the perspectives of individuals living with ILD or COPD and health care professionals (HCP) (respiratory therapists, respirologists, registered nurses, physiotherapists). Interpretative Description is rooted in the naturalistic paradigm and aims to answer real-world questions by exploring common themes across a range of experiences. Separate focus groups were completed for each participant group: 1) HCPs, 2) individuals with a lived experience with ILD (ILE-ILD) and 3) individuals with a lived experience of COPD (ILE-COPD). Using convenience and purposeful sampling were selected from a previous study, pulmonary rehabilitation programs, and local support groups. Transcripts were then cleaned and uploaded to the data organization software NVivo 10 (QSR International Pty Ltd, Melbourne, Australia). Data analysis followed the constant comparative method, with data collection and data analysis occurring concurrently. One primary researcher (SR) used inductive thematic analysis to identify themes, which were reviewed by the research team and stakeholder group. 20 HCPs (registered nurses (n=3), respiratory therapists (n=11), physiotherapists (n=1), respirologists (n=5)) with a mean of 20.9 (SD ± 0.7) years in health care and a mean of 12.8 (SD ±8.4) years of experience working with individuals with ILD participated. Fourteen individuals (one caregiver) with ILD and ten individuals with COPD participated. The educational needs identified were: 1) Integration of O₂ into day-to-day life 2) Focusing on the positives 3) Self-management 4) Reliable and accurate resources 5) transition from hospital to home 6) ongoing support 7) empathy and empowerment 8) experiential learning 9) peer support.  Education needs specific to ILD compared to COPD included the importance of more frequent assessments of O₂ needs and an emphasis on maintaining higher flow rates when using O₂.  Our study offers new insights into the educational needs of ILD patients for integrating O₂ into their daily lives. For professionals offering education, it is crucial to deliver empathetic instruction to help individuals maintain independence both inside and outside the home. These findings will inform the development of educational support for patients with ILD.</p>