Abstract
Background: Chronic obstructive pulmonary disease (COPD) is a progressive chronic lung disease that affects breathing and can have a large impact on the quality of life of those living with it and their caregivers. Managing COPD is complex and often experienced as disjointed; integrated care is essential to providing high quality care to people with COPD. Efforts are underway in Ontario, Canada (and around the world) to better support people with chronic disease through the implementation of integrated care pathways.
Approach: To understand the lived experience of people with COPD (PWC) and their caregivers with COPD care, we conducted an exploratory study across two phases. First, utilizing an interpretive phenomenological approach, we interviewed PWC and informal caregivers regarding their lived experiences with the diagnosis and management journey of COPD, daily struggles, and their outlook on their ideal integrated care support systems. Second, we engaged members of lung health support groups across the health system in synergistic discussions to evaluate how to best incorporate our findings into an integrated patient care continuum.
Our interdisciplinary research team includes researchers, respiratory therapists, patient partners and health system partners. Our data collection tools were co-created; all team members of the research team supported analysis, knowledge dissemination and mobilization.
Our collaborative process will inform evidence-based recommendations aimed at enhancing the development and implementation of integrated care pathways. This research incorporates the idea that age, gender, and finance-based impacts affect the quality of life of PWC and their informal caregivers. Through this, we are aiming to explore how these impacts affect quality of life and how ideal integrated care support systems can be used to best support PWC and their caregivers.
Results: Our preliminary results indicate that both PWC and their caregivers experience ongoing challenges when navigating the healthcare system across the care continuum. These struggles include a lack of personalized care, insufficient resources, fragmented support, limited financial assistance, and inaccessible healthcare providers. An important finding was the need for personalized support where participants felt they played a role in the treatment plan. At the time of submitting this abstract, we are further exploring the role of financial stress, gender, and age in exacerbating these challenges. We are also working closely with our health system partners to ensure our findings are transferable to the newly developed COPD care pathways within integrated care.
Implications: Our goal is to advocate for improved integrated care pathways that include the support needed to effectively manage COPD and improve quality of care for a variety of unique circumstances from the perspectives of PWC and their caregivers. While our research focuses on addressing gaps in current COPD care, we believe this work will translate to other chronic disease care pathways within integrated care. Our work is mindful of the unique, and complex challenges inherent to integrated care. Ultimately, we aim to enhance the lived experience and overall quality of life for both groups, ensuring that care is not only more personalized and responsive, but also more accessible and supportive across diverse populations.