"What I really needed was the truth". Exploring the information needs of people with Complex Regional Pain Syndrome
"What I really needed was the truth". Exploring the information needs of people with Complex Regional Pain Syndrome
Background
United Kingdom guidelines indicate individuals with Complex Regional Pain Syndrome (CRPS) require information and education to support self management. This qualitative study explored the specific information requirements of patients with CRPS and provides insight into how health professionals can best provide this.
Methods
Following informed consent, eight semi-structured telephone interviews were conducted with adults living with CRPS. Participants were asked about their experience of receiving information since diagnosis and what information they would prefer to receive. Interviews were transcribed and data analysed using thematic analysis.
Results
Two themes related to the individuals’ experience of receiving information; ‘Facing the unknown’ describes how the participants reported little information was available and the impact of this. ‘The need to be an expert’ describes how they needed to be proactive to seek this information themselves. Three themes related to what information the individual would choose to receive; ‘Seeking the truth’ describes the need for knowledge, in particular accurate, honest information. ‘The shared experience’ describes the positive and negative aspects of sharing information with others experiencing CRPS. ‘Access to expertise’ describes the need for access to reliable information, resources and expertise.
Conclusion
The reported lack of information resulted in a struggle for participants to understand their condition, access professional expertise and appropriate treatments. Health professionals require access to accurate information in order to share this with individuals with CRPS in a timely manner. Easily accessible and high quality patient resources to facilitate early referral for expertise are required. A central resource to identify local expertise would be valuable.
Grieve, Sharon
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McCabe, Candy
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Adams, Jo
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Grieve, Sharon
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McCabe, Candy
9f918646-3e83-4e67-b54d-c6a01e307ce5
Adams, Jo
6e38b8bb-9467-4585-86e4-14062b02bcba
Grieve, Sharon, McCabe, Candy and Adams, Jo
(2015)
"What I really needed was the truth". Exploring the information needs of people with Complex Regional Pain Syndrome.
Musculoskeletal Care.
(In Press)
Abstract
Background
United Kingdom guidelines indicate individuals with Complex Regional Pain Syndrome (CRPS) require information and education to support self management. This qualitative study explored the specific information requirements of patients with CRPS and provides insight into how health professionals can best provide this.
Methods
Following informed consent, eight semi-structured telephone interviews were conducted with adults living with CRPS. Participants were asked about their experience of receiving information since diagnosis and what information they would prefer to receive. Interviews were transcribed and data analysed using thematic analysis.
Results
Two themes related to the individuals’ experience of receiving information; ‘Facing the unknown’ describes how the participants reported little information was available and the impact of this. ‘The need to be an expert’ describes how they needed to be proactive to seek this information themselves. Three themes related to what information the individual would choose to receive; ‘Seeking the truth’ describes the need for knowledge, in particular accurate, honest information. ‘The shared experience’ describes the positive and negative aspects of sharing information with others experiencing CRPS. ‘Access to expertise’ describes the need for access to reliable information, resources and expertise.
Conclusion
The reported lack of information resulted in a struggle for participants to understand their condition, access professional expertise and appropriate treatments. Health professionals require access to accurate information in order to share this with individuals with CRPS in a timely manner. Easily accessible and high quality patient resources to facilitate early referral for expertise are required. A central resource to identify local expertise would be valuable.
Text
Article CRPS Grieve, McCabe, Adams FINAL 19 4 15. (clean).docx
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More information
Accepted/In Press date: 1 May 2015
Organisations:
Physical & Rehabilitation Health
Identifiers
Local EPrints ID: 376736
URI: http://eprints.soton.ac.uk/id/eprint/376736
ISSN: 1478-2189
PURE UUID: 72d876d0-cf12-4c89-9cdb-e838c793e2d9
Catalogue record
Date deposited: 13 May 2015 11:58
Last modified: 15 Mar 2024 02:49
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Contributors
Author:
Sharon Grieve
Author:
Candy McCabe
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