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Experiences and Perceptions of People With Advanced Cancer and Their Family Caregivers of Shared Decision-Making in
Jannicke Rabben1, Gudrun Elin Rohde1,2,3, Mariann Fossum4
1Department of Health and Nursing Science, Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway.
Aim:
To explore the experiences and perceptions of people with advanced cancer and their family caregivers of shared decision-making, including how they and nurses are involved.
Design:
Exploratory interview study.
Methods:
Semistructured, individual interviews conducted in 2023 were analysed using reflexive thematic analysis.
Results:
Twenty-four participants (15 people with cancer and 9 caregivers) participated in this study. The analysis generated five themes; (1) Decisions are ultimately about living or dying, (2) Desires and expectations for involvement in decision-making, (3) Uncertainty about potential and capacity for shared decision-making, (4) Good quality information and communication are key for involvement and (5) Nurses' contributions are unclear.
Conclusion:
Overall, our participants were unsure about how decision-making about the complex and existential decisions in palliative cancer care was shared, or how it included them, or nurses.
Implications For The Profession And Patient Care:
People receiving care could benefit from more clarity on what shared decision-making is, how they can be involved and how nurses can facilitate and support shared decision-making.
Impact:
Part of the nursing role is to support and involve people with cancer and family caregivers in decisions about treatment and care. Our findings suggest that people receiving care may be unclear about the concept of shared decision-making, and so also about how nurses potentially or actually support decision-making. Our study further clarifies the challenges and possibilities for involving all stakeholders in shared decision-making. This additional insight may help in future development and implementation of shared decision-making.
Reporting Method:
COREQ. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Adds to knowledge and understanding of the complexity of shared decision-making in palliative cancer care and how nurses can contribute to this and advancing a person-centred approach.
Patient Or Public Contribution:
A patient and public involvement group participated in all phases of planning and conducting this study.
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