The evolution of informational needs of people with complex regional pain syndrome

Colleen Johnston-Devin; Sancia West; Florin Oprescu; Katrina Lane-Krebs; Michelle Cleary

doi:10.1016/j.pmn.2025.04.010

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The evolution of informational needs of people with complex regional pain syndrome

Journal article

Open access

Peer reviewed

The evolution of informational needs of people with complex regional pain syndrome

Colleen Johnston-Devin, Sancia West, Florin Oprescu, Katrina Lane-Krebs and Michelle Cleary

Pain Management Nursing, Vol.26(5), pp.e456-e463

2025

DOI: https://doi.org/10.1016/j.pmn.2025.04.010

PMID: 40414793

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Abstract

complex regional pain syndrome

pain

self-care

Lived experience

Consumer health information

Aim: To identify the information needs of people with a new or existing diagnosis of Complex Regional Pain Syndrome. Design: A qualitative descriptive methodological approach was taken. Methods: Nineteen interviews were conducted with people diagnosed with Complex Regional Pain Syndrome. The interviews were focused on issues related to seeking information. Data analysis followed the reflexive thematic analysis framework as identified by Braun and Clarke. Results: Analysis of the interview transcripts revealed four overarching themes – information needs and information-seeking actions at the time of diagnosis; information needs and information-seeking actions in the present; problems seeking or receiving information; and recommendations from lived experience. Conclusion: The information needs of those diagnosed with Complex Regional Pain Syndrome evolve from understanding the condition to seeking management strategies specific to personal circumstances as individuals start to understand and manage the condition. People seek support from healthcare professionals and others who have lived with the condition. Access to current, credible information and acknowledgement of their pain reality by healthcare professionals are important considerations for individuals with Complex Regional Pain Syndrome.

Details

Title: The evolution of informational needs of people with complex regional pain syndrome
Authors: Colleen Johnston-Devin (Corresponding Author) - Central Queensland University
Sancia West (Author) - Central Queensland University
Florin Oprescu (Author) - University of the Sunshine Coast
Katrina Lane-Krebs (Author) - Central Queensland University
Michelle Cleary (Author) - Central Queensland University
Publication details: Pain Management Nursing, Vol.26(5), pp.e456-e463
Publisher: Elsevier Inc.
Date published: 2025
DOI: 10.1016/j.pmn.2025.04.010
ISSN: 1532-8635
PMID: 40414793
Copyright note: © 2025 The Authors. Published by Elsevier Inc. on behalf of American Society for Pain Management Nursing. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/ )
Grant note: This work was partially supported by a CQUniversity Internal Research Grant (RSH/6502, 2022).
Organisation Unit: School of Health - Nursing; Engage Research Lab; School of Health - Public Health
Language: English
Record Identifier: 991137206102621
Output Type: Journal article

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