Abstract
Background: Chronic obstructive pulmonary disease (COPD) is a common, long-term condition with a relapsing and remitting trajectory. People with COPD have increasingly complex health requirements as the condition becomes more severe, leading to the involvement of multiple health providers. The aim of this thesis was to explore the perspectives of people with severe COPD, their support people and health professionals as stakeholders in healthcare services for palliative and end-of-life COPD, and gain a deeper of the healthcare network. Identification of the components of a high-quality healthcare system for people with severe COPD identified in this thesis may potentially inform future healthcare service design and clinical quality improvement.
Method: A systematic review of qualitative studies with interpretative synthesis was conducted to investigate the perceptions of people with severe COPD, their support people and health professionals related to palliative and end-of-life care services, with emphasis on whether service delivery was person-centred and integrated according to World Health Organisation strategy document definitions. The findings of the systematic review informed the design and structure of the research methodology employed in this thesis.
A qualitative focus group methodology using a semi-structured interview schedule was utilised to explore the perspectives of stakeholder participants involved in healthcare services for palliative and end-of-life COPD in Aotearoa New Zealand. Data analysis employed Actor-network theory and Critical theory to identify the actors (human and inanimate) and their relationships within the healthcare network, and to critique and challenge the revealed power structures.
Results: The systematic review with interpretive synthesis revealed multiple stakeholders involved in the healthcare network for people with severe COPD. The network, however, did not demonstrate people-centred and integrated care, with patients having little influence over their own healthcare services. Government entities with their policies and strategies, and the social support system were disconnected from healthcare stakeholders. Few interactions between acute and secondary care services were identified, despite demonstrated overlap in service provision.
Seven focus groups were conducted with 74 patients, support people and health professional participants from a wide range of healthcare settings and disciplines. The focus group study data were analysed utilising several coding cycles, and each level of analysis was examined in the context of Critical theory and Actor-network theory. The data analyses were then divided into the care model, the systems model and the equity model.
In the care model, stakeholder participants reported that high-quality healthcare delivery for palliative and end-of-life COPD included compassionate, committed, and competent health professionals, institutions and organisations.
In the systems model, system-level quality improvements were proposed with a focus on effective communication and standardisation of processes. Stakeholders believed resource design and development could be better accomplished together, with highly integrated systems and effective governance.
In the equity model, health inequities were also recognised and described by stakeholders, created by policy design, funding decisions and a prioritisation of services without engagement of end-users.
Conclusion: Healthcare services for palliative and end-of-life COPD are poorly integrated relative to best practice as described by stakeholders. People with severe COPD, their support people, and health professional stakeholders report deficits in healthcare systems, services, and equity that can inform future quality improvement.