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‘What I Really Needed Was the Truth’. Exploring the Information Needs of People with Complex Regional Pain Syndrome
Author(s) -
Grieve Sharon,
Adams Jo,
McCabe Candida
Publication year - 2016
Publication title -
musculoskeletal care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.628
H-Index - 28
eISSN - 1557-0681
pISSN - 1478-2189
DOI - 10.1002/msc.1107
Subject(s) - thematic analysis , complex regional pain syndrome , medicine , referral , information needs , informed consent , information quality , information sharing , qualitative research , nursing , medical education , information system , knowledge management , psychology , alternative medicine , computer science , physical therapy , world wide web , social science , engineering , pathology , sociology , electrical engineering
Background UK guidelines indicate that individuals with complex regional pain syndrome (CRPS) require information and education to support self‐management. The present 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 the information that they would prefer to receive. Interviews were transcribed and data analysed using thematic analysis. Results Two themes related to individuals' experience of receiving information. These were: ‘Facing the unknown’, which describes how participants reported that little information was available and the impact of this; and ‘The need to be an expert’, which describes how they needed to be proactive to seek this information themselves. Three themes related to the information that the individual would choose to receive. These were: ‘Seeking the truth’, which describes the need for knowledge – particularly accurate, honest information; ‘The shared experience’, which describes the positive and negative aspects of sharing information with others experiencing CRPS; and ‘Access to expertise’, which 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, and 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.