Different ways of understanding patient participation in cancer care: A phenomenographic study

To describe different ways of understanding patient participation among healthcare professionals in cancer care.

The study employed a qualitative design using a phenomenographic method. Phenomenography aims to describe the qualitatively different ways that a group of people make sense of, experience, and understand a phenomenon in the surrounding world. This study focuses on the phenomenon of patient participation, as perceived by healthcare professionals in cancer care. Sixteen physicians and registered nurses in surgical and urological cancer care, strategically sampled from three Swedish hospitals, were interviewed using a semi-structured interview guide.

Five descriptive categories (A-E) of different ways of understanding patient participation were identified: Viewing patient participation as conditional upon healthcare permission (A), Providing information about treatment, with decisions primarily being made by healthcare professionals (B), Reaching joint decisions through attentive dialogue and comprehensible information (C), Enabling the patient to be active and take responsibility through collaboration and engagement (D), to Holistically seeing the patient and, in collaboration with the team, encouraging the person in managing their situation (E). The internal relations between the categories show a gradual shift in understandings from a narrower to a broader and more complex view of the concept.

This study highlights widely different understandings of patient participation among healthcare professionals in cancer care. Fully achieving patient participation requires education, implementation, and repeated discussion and follow-up in the organization. Bridging the gap between policy and practice requires that healthcare systems foster a culture that prioritizes patient participation, from the organizational level to individual healthcare professionals.

Knowledge of the different views of patient participation can be used in education and professional competence development and transferred into different ways of working toward the overall aim of enhancing patient participation in cancer care.