Primary and secondary patient participation - a qualitative study of healthcare professionals’ perceptions and experiences

BACKGROUND: Patient participation is increasingly emphasized in healthcare policy and practice, still less is known about how healthcare professionals (HCPs) perceive and experience patient and informal caregiver participation. Patient participation as a concept is described as sharing something in a partnership, such as a shared decision. Meaningful participation requires bridging the knowledge and power gap between HCPs and patients. The aim of this study was therefore to contribute to the conceptualization of patient and informal caregiver participation based on HCPs' experiences and perceptions. METHOD: We conducted an inductive thematic analysis of qualitative data from open-ended responses and comments in a national web survey in Sweden. The survey explored attitudes toward patient participation and workplace support for collaborative practices and was completed by 279 participants, whereof 247 (89%) responded to at least one open-ended question or free text comment. RESULTS: Two overarching themes were generated. Primary participation refers to how patients and informal caregivers manage their own health at a micro level in society. Secondary participation refers to an organizational level in society, to influence the healthcare system and support peers at macro and meso levels. HCPs valued well-informed patients as partners but expressed concerns about misinformation, workload, and health inequities. Digital tools were seen as enablers of participation, though usability and organizational readiness posed challenges. Secondary participation was perceived as beneficial but hindered by structural barriers, lack of management support, and limited resources. CONCLUSION: HCPs generally supported patient participation, however, they faced systemic and practical obstacles. To foster meaningful collaboration, healthcare organizations need structured forums, training, and strategies to integrate patient knowledge at both individual and organizational levels. Future research should explore interventions that strengthen shared learning for patients and informal caregivers.