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'You don't know which bits to believe': qualitative study exploring carers' experiences of seeking information on the
Miriam Santer1, Ingrid Muller2, Lucy Yardley3
1Department of Primary Care and Population Sciences, University of Southampton, Southampton, UK.
Objective:
We sought to explore parents and carers' experiences of searching for information about childhood eczema on the internet.
Design:
A qualitative interview study was carried out among carers of children aged 5 years or less with a recorded diagnosis of eczema. The main focus of the study was to explore carers' beliefs and understandings around eczema and its treatment. As part of this, we explored experiences of formal and informal information seeking about childhood eczema. Transcripts of interviews were analysed thematically.
Setting:
Participants were recruited from six general practices in South West England.
Participants:
Interviews were carried out with 31 parents from 28 families.
Results:
Experiences of searching for eczema information on the internet varied widely. A few interviewees were able to navigate through the internet and find the specific information they were looking for (for instance about treatments their child had been prescribed), but more found searching for eczema information online to be a bewildering experience. Some could find no information of relevance to them, whereas others found the volume of different information sources overwhelming. Some said that they were unsure how to evaluate online information or that they were wary of commercial interests behind some information sources. Interviewees said that they would welcome more signposting towards high quality information from their healthcare providers.
Conclusions:
We found very mixed experiences of seeking eczema information on the internet; but many participants in this study found this to be frustrating and confusing. Healthcare professionals and healthcare systems have a role to play in helping people with long-term health conditions and their carers find reliable online information to support them with self-care.
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