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The Evolution of Informational Needs of People With Complex Regional Pain Syndrome
Colleen Johnston-Devin1, Sancia West2, Florin Oprescu3
1School of Nursing, Midwifery and Social Sciences, CQUniversity, Brisbane, QLD, Australia.
Aim:
To identify the information needs of people with a new or existing diagnosis of complex regional pain syndrome.
Design:
A qualitative descriptive 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 acknowledgment of their pain reality by healthcare professionals are important considerations for individuals with complex regional pain syndrome.
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