The cancer patient’s lived experience of the health system in Malta

Abstract

This qualitative study explores the experiences of cancer patients and their support networks during their treatment. Within the context of public health services in Malta, it investigated the research question: How do cancer patients, their families and significant others live their experience as health service users during the illness? The Donabedian approach to service evaluation, encompassing structure, process and outcome, served as a guiding theoretical framework. Six patients and their significant others accepted an invitation by their medical consultant to be interviewed in-depth. Their detailed narratives were analysed using Interpretative Phenomenological Analysis (IPA). Five superordinate themes emerged: positive treatment experience; overcoming identified service limitations; humanity of care; centrality of support, and burden of treatment. IPA’s thorough idiographic approach captured the unique understanding through which each participant interpreted the cancer treatment reality. Participants expressed a generally positive experience of the health services, albeit identifying limitations needing ongoing improvement efforts that respond to their needs. Humane care was deemed indispensable, particularly at communication of diagnosis. Support, both familial and work related, were considered central to the management of their treatment. The burden of treatment experienced accentuates the criticality of cancer treatment structures and processes that respond to each patient’s unique experience to render the burden more manageable. A major weakness elicited from this study is the absence of structures and processes, including palliative care protocols, that respond to the particular needs of these patients upon admission to the acute care hospital. Notwithstanding the limitations around the small size of this study, the IPA design provided a means for integrating user input into health policy and services design and evaluation. It highlighted the importance of recognising the individuality of cancer treatment experiences, and the necessity that such experiences inform treatment policies and protocols to better serve the distinctiveness of each cancer treatment journey.