Department of Medicine, University of Otago, 2 Riccarton Ave, Christchurch Central, Christchurch, 8011, New Zealand.
Māori and Indigenous Health Innovation, University of Otago, Christchurch, New Zealand.
BMC Health Serv Res. 2024 Oct 7;24(1):1190. doi: 10.1186/s12913-024-11705-6.
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.
Qualitative methodology utilising focus groups including patients, family, friends, informal support people, health care workers and professionals.
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.
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.
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.
患有终末期慢性阻塞性肺疾病（COPD）的人会经历身体机能的严重受限，死亡率较高。我们的研究表明，卫生系统的设计和实施导致了结果的不平等。让患有终末期 COPD 的人、他们的支持人员和卫生专业人员共同参与制定资源分配的议程，可能有助于改善卫生服务。
采用焦点小组的定性方法，包括患者、家属、朋友、非正式支持人员、医护人员和专业人员。
分析利用批判理论和行动者网络理论，将患有严重 COPD 的患者、他们的支持人员和卫生专业人员定位为终末期护理的专家。分析将这些观点进行了三角剖分，并由研究调查人员和一个专家参考小组进行了审查。
来自七个焦点小组的 74 名参与者报告了他们在医疗保健系统中经历的不平等。公平是参与者确定的一个总体现象，有三个具体主题被描述：政策设计、系统设计和服务设计。
患有终末期 COPD 的患者、他们的支持人员和卫生专业人员作为终末期 COPD 护理方面的专家的经验，可以为卫生系统和卫生服务设计提供信息，以解决终末期 COPD 护理的资金和服务提供方面当前存在的不平等问题。
