Policy, system and service design influence on healthcare inequities for people with end-of-life chronic obstructive airways disease, their support people and health professionals.

Abstract

AbstractBackground: People with end-of-life chronic obstructive pulmonary disease (COPD) experience debilitating physical limitations, with a high mortality rate. Our research has shown health system design and delivery leads to inequitable outcomes. Enabling people with end-of-life COPD, their support people, and health professionals to partner in setting the agenda for resource allocation may inform health service improvement.Design: Qualitative methodology utilising focus groups including patients, family, friends, informal support people, health care workers and professionals.Methods: The analysis, utilising critical theory and Actor-Network theory, positioned people with severe COPD, their support people and health professionals as experts in end-of-life care. Analyses triangulated these perspectives, and were reviewed by the research investigators and an expert reference group.Results: Participants (n=74) in seven focus groups reported their experiences of inequity within the healthcare system. Equity was an overarching phenomenon identified by participants, with three specific themes being described: policy design, system design, and service design.Conclusion: Experiences of patients, their support people and health professionals as experts in end-of-life COPD care can inform health systems and health service design to address current inequities in funding and delivery of care for end-of-life COPD.