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

ABSTRACT

AIM: To explore people with cancer, doctors', and nurses' understanding of and attitudes toward, patient participation in symptom management. BACKGROUND: In health service policies worldwide, patients are recognized as the 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. DESIGN: A qualitative study conducted using individual interviews. METHODS: Forty one people with cancer, five doctors, and seven 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 (a) information exchange is the key to patient participation; (b) negotiated decision-making can be achieved in various ways; and (c) patients' self-management can be a form of patient participation. Patient participation was recognized 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.