Other publications by CRPS Network members 2013-2015
Many of our Network members are experienced researchers in the field of CRPS and chronic pain. Not all of their publications are directly related to Registry studies, but are still very relevant to our work. A key selection are listed below.
Abstracts (overviews) of all research papers can be accessed using the following links, but please note that some will require an active subscription to the relevant journal in order to access the full publication.
Online social support for Complex Regional Pain Syndrome: A content analysis of support exchanges within a newly launched discussion forum - published in Computers in Human Behavior 2015. This study explored the experiences of members in a CRPS discussion forum, to examine the support content of messages and how support processes become established. Emotional support was the most common, followed by information, esteem and network support. These support processes started almost immediately when the group was launched, similar to what happens in a face-to-face support group where strangers meet for the first time and immediately support one another.
Emergency Department Staff Attitudes Toward People Presenting in Chronic Pain: A Qualitative Study - published in Pain Medicine 2015. Patients who are unable to tolerate their chronic pain sometimes present at Emergency Departments. However, as emergency medical services are set up to provide rapid treatment for acute injury or illness; there is potential for misunderstanding and disappointment. An in-depth, qualitative study was carried out to identify the attitudes and narratives of ED staff around people in chronic pain. Participants reported frustration with the system and with chronic pain patients' perceived inconsistencies and requirements. However, they also highlighted good practice and acknowledged their frustration around not being able to help this group. Staff suggested that care could be improved by appropriate information, signposting and with time invested in communication with the patient.
Capturing and Sharing the Voice and Experiences of Those Who are Living with Complex Regional Pain Syndrome - published by the International Association for Study of Pain (IASP) CRPS Specialist Interest Group, and previously published online as a blog via the Body in Mind website 2015. People living with CRPS often turn to the internet to seek CRPS-related information and support. They have also expressed their disappointment on discovering that many existing information resources lacked any sense of what it was like for patients to live with the condition. This article highlights the challenge of co-creating patient-centred information resources.
Learning to cope with CRPS: putting life first and pain second - book published in 2014 (ISBN: 978-1-84819-240-9). With the help of this compact guide, anyone suffering from CRPS will better understand their condition and cope with the reality of living with it. Ten first-hand patient accounts of living with CRPS illustrate just how wide-ranging the impact can be physically, socially and emotionally, and what has helped on an individual basis. This book's hands-on guidance will be of great help to people diagnosed with CRPS and show family and friends how they can best provide support. It is also an essential resource for health psychologists working with CRPS patients.
Coping with chronic complex regional pain syndrome: advice from patients for patients - published in Chronic Illness 2013. Using semi-structured interviews, this study explored what advice people currently living with chronic CRPS would offer to another person coming to terms with a chronic diagnosis of the condition.