OPTIMISTIC: OPTIMISing care and support for patients with inoperable pancreaTIC cancer and their family carers

This qualitative intrinsic case study explores the provision of supportive care to people with inoperable pancreatic cancer and their family carers (FCs) in England. The aim of the research was to develop recommendations for optimising supportive care provision for this cohort. Sixty semi-structured interviews were undertaken with patients, their FCs, and HCPs, between May 2022 and November 2023. Patients and FCs were recruited through English NHS sites, Pancreatic Cancer UK (PCUK), and via social media. Thirteen patients and 12 FCs took part in interviews, with several participants from both groups interviewed on multiple occasions. Twenty-four HCPs, including specialist nurses, dieticians, and oncologists, were interviewed once only. Data were analysed thematically using the Framework Approach. Fitch’s Framework for conceptualising patient and FC’s supportive care needs (1994) was used as the theoretical framework for the study. The findings show that the rapid progression of the disease and the symptom burden are often overwhelming and create challenges for care planning and co-ordination of care. While needs for patients are high in the physical domain, both patients and FCs report high needs in the emotion, psychological and information domains. The findings highlight the relentless nature of the FC role, and suggest that FCs’ needs are often not identified, let alone adequately addressed. The findings also highlight the contextual service pressures of reduced capacity, constrained resources, and increasing workloads. While healthcare resources are undoubtedly a limiting factor in what can be achieved, several issues raised by the findings are amenable to improvement. These include fundamental aspects of what constitutes a good quality patient and FC experience such as compassionate and empathetic interpersonal communication, timely and responsive care co-ordination, efficient communication between and within organisations, and the general provision of information and guidance to patients and their FCs.

Grantor dc:publisher

Oxford Brookes University

Author dc:creator

• Brown, Hilary Isla

Contributors dc:contributor

• McGeagh, Lucy
• Watson, Eila
• Topping, Annie

Statement dc:rights

• All rights reserved

Language dc:language

en

DOI dc:identifier

https://doi.org/10.24384/72m0-6k66

OAI identifier oai:identifier

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