Understanding experiences of patients and caregivers with lung disease

Background: Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease that causes limitations in daily life and decreases quality of life. Excellent COPD care requires an integrated system; this research investigated the health impacts and experiences of persons with COPD and their informal caregivers. Approach: We interviewed persons with COPD (PWC) and their caregivers using an interpretive phenomenological approach. Our interdisciplinary research team includes a clinician (respirologist), and patient partners that represent both PWC and caregiver groups. Our data collection tools were co-created; and all team members supported analysis and knowledge dissemination. These PWC partners help us ensure we are asking the right questions in a way that is comfortable for participants to answer and creating (and sharing) usable knowledge. Our goal for this research was to investigate the impact of age, sex, gender, and socioeconomic status on the physical and mental health of PWC and their informal caregivers with an aim to providing guidance to support integrated care systems that meet patient needs. This research provided insight into the range of needs that are unmet by the current healthcare system and will help us develop recommendations that advocate for more equitable and integrated COPD care. Results: Our preliminary results show that PWC experience several challenges across the health system and throughout their health journey. These challenges include lack of information provided, limited access to pulmonary rehabilitation and other forms of support, and stigma/blame for their disease. An important finding was the need for personalized care where participants felt they played a role in their treatment plan. This is a huge facet of integrated care and will be emphasized in our new research study with PWC and caregivers. Implications: Asking participants about their experiences provides a voice and a space to express needs and wants towards their care. Currently, there is a gap in the literature regarding individuals with COPD and their caregiver's experiences with the disease. This research shines a light on these experiences and what PWC and their caregivers need in terms of care and support. This study lays a foundation for much needed research in this area and supports the development of integrated care solutions. Ultimately, this work informs the development of optimal and equitable care for PWC and their caregivers.