76 Background: For lung cancer patients and caregivers, navigating the healthcare system while coping with the complexities of the illness is challenging. We explored organizational barriers to receiving quality healthcare from the perspectives of these stakeholders. Methods: A qualitative study involving 10 focus groups (5 of patients, 5 of caregivers) was conducted. Discussions were guided by a standardized script, recorded for transcription, and analyzed using Dedoose software. Results: 22 patients (10 Males/12 Females; 15 Caucasians and 7 African Americans) and 24 caregivers (6 Males /18 Females; 17 Caucasians and 7 African Americans) shared their experiences. Content analysis showed 5 recurring themes: (1) Insurance Issues: Delays in diagnosis or treatment were reported due to lack of insurance, lag time in insurance approvals and care processing, uncertainty about coverage, and caps for tests and/or office visits. (2) Appointment Scheduling: Participants reported appointment delays and rescheduling, long wait times, cancellations by providers, and inflexibility to accommodate schedules. (3) Provider Communication: Communication was lacking at times in initial diagnosis disclosure, prognosis and treatment preparation, willingness to answer questions in lay terms, and time dedicated to patients during appointments. (4) Patient Education: Participants had inadequate knowledge about lung cancer, treatment options and duration, prognosis, and relied on providers to educate and direct them to credible resources. Many felt confused, frustrated, anxious, or fatalistic. (5) Healthcare System Support: Participants found support within the healthcare system extremely beneficial, when available, for coping with lung cancer, expediting appointments, seeking information, connecting with physicians, and receiving timely diagnosis and treatments. Conclusions: These findings offer valuable insight into lung cancer patients’ and caregivers’ perspectives on organizational barriers to receiving quality care. By identifying these barriers for lung cancer patients and caregivers, better planning and management of effective cancer services can be developed.
Coping with physical and psychological symptoms: a qualitative study of advanced lung cancer patients and their family caregivers
