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.
To explore what people living with complex regional pain syndrome (CRPS) think health professionals should know about their condition to provide appropriate care.
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.
Seventeen people living with complex regional pain syndrome were interviewed.
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.
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.
This research output has an Altmetric Attention Score of 4. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 08 March 2024.
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Altmetric has tracked 34,412,533 research outputs across all sources so far. This one has received more attention than most of these and is in the 67th percentile.
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