In January 2024, the American Lung Association conducted focus groups to better understand the personal experiences for people living with chronic obstructive pulmonary disease (COPD) for a decade or more. The goal of the focus groups was to learn about the lived experience, taking a more in-depth look at the participants’ feelings, opinions, and needs as related to their quality of life and disease management.
Focus groups can provide insight into an individual’s lived experience, including their feelings and overall personal perspective. During a focus group, the facilitator can also learn more about the participants’ emotions through non-verbal cues. The group setting encourages participants to contribute to a specific discussion topic, to improve understanding of the topic being discussed.
Eleven individuals participated in 90-minute focus groups held virtually and moderated by a professional third-party facilitator. The topics discussed included quality of life while living with a chronic lung disease, symptoms, treatment history and ongoing disease management, healthcare team communication, education, caregiver involvement and overall care. Several themes emerged during these sessions highlighting the impact of living with a chronic disease both on the individuals as well as their significant others.
Theme #1: A COPD Diagnosis Is Life Changing
Participants unanimously agreed that living with COPD is a life changing experience. From a day-to-day perspective, participants indicated that planning replaces spontaneity, and for many, activities that they used to participate in are either scaled back or modified to be able to continue to enjoy various interests. Endurance, mobility, event location and the use of supplemental oxygen all impact how they participate and whether they can continue to engage.
“I tire out a lot easier than I used to. I find that when I plan my day, I try to plan it for the mornings because I know by afternoon I’m done. I can’t get anything substantial done.” -Participant
Theme #2: Disease Management Goes Beyond Medication
Participants shared different ways they manage their chronic disease. Common strategies included following a medication routine that was developed with their healthcare provider, getting their recommended vaccinations, seeing their healthcare provider regularly, going to pulmonary rehabilitation and incorporating lifestyle changes. Lifestyle changes included wearing a mask in crowded public areas, using breathing techniques to manage shortness of breath, following a healthy diet, using meditation for stress management and getting good sleep. Participants also discussed the importance of being a self-advocate. Several endorsed searching online for educational materials to help with their management plan.
“When I get short of breath, that's when I use pursed lip breathing when I start getting really short of breath just to get control of it."- Participant
Theme #3: Barriers to Optimal Disease Management Exist
Participants shared several obstacles they faced in accessing care. First, they struggled with limited access to services like seeing a lung specialist or joining a pulmonary rehabilitation program. Secondly, they cited poor communication and information sharing among healthcare providers, with no single provider taking charge of their comprehensive healthcare needs. Thirdly, they felt their healthcare providers did not provide them with enough education to manage their disease and its progression. Lastly, they were disappointed that they did not feel like there were new treatment options available to them since their initial diagnosis. There are in fact new treatment options, but this feedback helped us understand just how poorly promoted they are.
“I do sort of feel like it's down to me to figure it out and put the pieces together.”- Participant
Theme #4: There Is an Emotional Impact
Another aspect of living with COPD that the participants discussed is the emotional impact. Participants shared feelings of isolation, anxiety, and depression. There was a general sense of loss in being able to do things that they were previously able to do with ease, including daily activities like grocery shopping and cooking. Participants felt like there is a stigma associated with having COPD, including that some people think it is their fault they were diagnosed. Some participants expressed feeling embarrassed about slowing down their loved ones when on outings and using oxygen in public. There was also an overall concern about the burden their disease places on their loved ones.
“My support system is my husband who had to go from husband to caregiver and it was a big adjustment, I think a bigger adjustment for him than it was for me. But I was always the one who did everything around the household. I cooked, shopped. For the first year or so he was very resentful, and I could see it, I could feel it.”- Participant
The Lung Association is grateful to have the insights of the participants from these focus groups. The information they provided has helped and will continue to help in the development of educational materials for those living with COPD. The participants demonstrated resilience, a desire to receive optimal care, and a determination to manage their disease to the best of their abilities.
You can learn more about managing your COPD at Lung.org/COPD and find out about support options when living with COPD at Lung.org/navigator.
Blog last updated: April 22, 2024
