Abstract
INTRODUCTION: People living with complex regional pain syndrome (CRPS), a rare chronic pain disorder, must become experts in their own self-management. Listening to the voice of the patient is often advocated in the pain literature. However, the patient's option is rarely asked for or considered by clinicians, even when they live with a condition that health professionals have rarely heard of. PURPOSE: To explore what people living with complex regional pain syndrome (CRPS) think health professionals should know about their condition to provide appropriate care. DESIGN: A heuristic, hermeneutic phenomenological study was conducted asking people about their experiences living with CRPS. This paper reports on the findings of an additional question asked of all participants. PARTICIPANTS: Seventeen people living with complex regional pain syndrome were interviewed. FINDINGS: Overwhelmingly, participants felt that health professionals do not know enough about CRPS, or chronic pain and believe their health outcomes are affected by this lack of knowledge. Sub-themes identified were don't touch unless I say it is okay; be patient with the patient/ it is important to develop a relationship; educate yourself and educate the patient; choose your words carefully and refer to others as needed. An additional theme, it is very hard to describe CRPS was also identified. CONCLUSIONS: Including patients as a member of the healthcare team is recommended to help people take control and self-manage their pain. For true patient centered care to be achieved, health professionals must accept and respect patients' descriptions of pain and their pain experience. This may require additional health professional education at both undergraduate and post-graduate levels in pain and communication to increase their bedside manner and therapeutic communication to deliver care in partnership with the patient.