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‘It's More Scary Not to Know’: A Qualitative Study Exploring the Information Needs of Patients with Systemic Lupus Erythematosus at the Time of Diagnosis
Author(s) -
Waldron Nicola,
Brown Sue,
Hewlett Sarah,
Elliott Barbara,
McHugh Neil,
McCabe Candy
Publication year - 2011
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.221
Subject(s) - medicine , information needs , feeling , thematic analysis , distress , patient education , qualitative research , focus group , theme (computing) , health professionals , confusion , medical education , health care , nursing , psychology , clinical psychology , social psychology , social science , marketing , psychoanalysis , business , economic growth , operating system , sociology , world wide web , computer science , economics
Objectives To identify the information needs of patients newly diagnosed with systemic lupus erythematosus (lupus), to inform the design of a future education package. Methods Focus groups were conducted in seven rheumatology centres in the UK with 43 purposively selected participants. Data were subjected to thematic inductive analysis. Results The first major theme, ‘Impact of early information’, describes how for many individuals information was scant and, as most had little prior knowledge of lupus, the information was difficult to absorb, leaving them with feelings of fear and confusion. ‘Information received versus information sought’ (theme 2) describes how few participants felt they had received clear, consistent information. For most, information was felt to be insufficient, forcing them to seek it elsewhere, which, if unsuitable, resulted in further distress. ‘Early education needs’ (theme 3) reflects that patients would rather be informed of potential problems than remain naïve. Patients felt that receiving a comprehensive information pack as an adjunct to verbal information from their clinician would be helpful, along with rapid access to knowledgeable professionals when they were ready to ask questions about their lupus. Conclusions Participants stated information and support currently provided at diagnosis is inadequate for their needs. They would like detailed information, provided through a variety of formats. Crucially this should be supported by professionals and available at whatever point in the patient's journey they want to access such discussions .The challenge is for health professionals to meet these needs in the most beneficial and cost effective way. Copyright © 2011 John Wiley & Sons, Ltd.