Anna Hult: Patient participation in cancer care: Different perspectives across healthcare levels

Abstract

Aim: To explore and deepen the understanding of various experiences of and perspectives on patient participation in cancer care across different settings and levels of the healthcare system.  

Methods: Study I explored the role of patient representatives through content analysis of interviews with members of national committees monitoring clinical practice guidelines for cancer in Sweden (n=33). Study II investigated complaints by or on behalf of patients with cancer (n=692) reported to patient advisory committees in four Swedish counties over five years, to describe the frequency and content of communication failures. Content analysis was applied to all the complaints. Study III described different ways healthcare professionals in cancer care (n=16) understood patient participation, through the phenomenographic analysis of the interviews. Study IV explored how healthcare contextual factors, as perceived by contact nurses (n=20), influenced the realization of patient participation in cancer care through focus group interviews, which were analysed with reflexive thematic analysis, using the Fundamentals of Care framework.  

Results: In Study I, even though the patient representatives’ role was mostly viewed as important, their contributions were hampered by uncertainties about the role and low expectations from other group members, and their representativeness was questioned by some professionals. Study II showed that over half of the patients or their representatives reported communication failures, from diagnostic workup to end of life. In Study III, five descriptive categories of different ways of understanding patient participation were identified, ranging from perceiving participation as conditional on healthcare permission to perceiving it as a collaborative process with a holistic and team-based approach. Study IV found that patient participation was challenged by organizational and cultural conditions as well as by the individual actions of healthcare professionals.  

Conclusions: Despite legal support and structural improvements in Swedish cancer care, patients’ participatory rights are not always upheld nor are their needs always met. This thesis illustrates how patient participation is not fully embedded in the structure and culture of healthcare organizations, leading to a gap between the policy level and practice. Healthcare organizations, leaders, and professionals need to take responsibility and work together so that patient participation becomes an integrated and shared responsibility. This is necessary to enable and realize patient participation according to policy.