Perceptions of patient participation in symptom management: a qualitative study with cancer patients, doctors, and nurses

BACKGROUND: In health service policies worldwide, patients are recognized as important members of the treatment care team. The concept of patient participation can be understood from a variety of perspectives, reflecting the limited conceptual clarity and poor congruence between patients' and clinicians' understanding. AIM: To explore cancer patients', doctors' and nurses' understanding of and attitudes towards, patient participation in symptom management. DESIGN: A qualitative study conducted using individual interviews. METHODS: 41 cancer patients, 5 doctors and 7 nurses were recruited from two oncological medical units of a cancer specialized hospital in Shanghai, China between November 2013 - March 2014. Individual interviews were semi-structured. Data were analysed through framework analysis. RESULTS: Patient participation was perceived as a mutual interaction requiring contribution from both patients and clinicians. Three main themes were uncovered: (i) Information exchange is key to patient participation; (ii) Negotiated decision-making can be achieved in various ways; and (iii) Patients' self-management can be a form of patient participation. Patient participation was recognised by both patients and clinicians as an important component of cancer care, however concerns relating to patients' limited knowledge and their ability to negotiate treatment decisions existed among most of the patients, doctors and nurses. CONCLUSION: This study identified the wide range of activities where patient participation can occur in the context of cancer care. Positive recognition of patients' roles in treatment and care should be advocated among both patients and clinicians to facilitate patients' participation in their own care and enhance clinicians' skills in involving patients.