‘Hope you find your ‘eureka’ moment soon’: a qualitative study of parents/carers’ online discussions around allergy, allergy tests and eczema

Abstract

ObjectivesTo explore understandings and concerns surrounding allergy, food intolerances and their potential impact on eczema among parents and carers of children with eczema who had posted messages in online forums.MethodsWe conducted a scoping review for active UK-based discussion forums that did not require password/registration to view posts and identified two parenting discussion forums with high activity and frequent use. We used their internal search functions to identify and export discussion threads relating to allergy and allergy testing for eczema from 2011 to 2016. We carried out an inductive thematic analysis of the 120 exported discussion threads.Results246 pages of text were analysed. Analysis led to three main themes: (1) confusion over the language surrounding ‘allergy’ and ‘intolerance’; (2) diverse beliefs about allergy testing in relation to eczema and (3) parents’ frustrations with perceptions of health professionals as uninterested and unhelpful about allergy testing. Forum users were concerned about immediate and delayed-type allergies but showed confusion in how terms were used, as well as different approaches to testing. Parents sought experiences of others, seeking social support as well as practical guidance.ConclusionsThe confusion around allergy-related terminology and its possible relationship with eczema means that it is essential healthcare professionals are able to signpost parents to accurate, accessible information. The lack of consistent information currently available means parents may use online discussion forums as an important source of information. This study suggests that the confused nature of discussions on these forums is inaccurate at best, and detrimental at worst.

The wounded self—lonely in a crowd: A qualitative study of the voices of children living with atopic dermatitis in Hong Kong

“…Nevertheless, children living with AD remain an underrepresented group attracting little social or academic attention. Previous qualitative studies have preferred to focus on the perceptions or experiences of issues related to AD management among the parents and caregivers of children living with AD (Halls et al, ; Santer et al, , ; Teasdale, Muller, & Santer, ). The current qualitative study contributes to amplifying the voices of children living with AD by providing a contextualised description of their subjective experiences.…”

TEST (Trial of Eczema allergy Screening Tests): protocol for feasibility randomised controlled trial of allergy tests in children with eczema, including economic scoping and nested qualitative study

“…Up to 70% of parents make significant modifications to their child’s diet, often without professional advice,45 even if the child has only mild eczema. Many parents turn to the internet for advice,12 46 or purchase self-test allergy kits which are not validated and not recommended 16…”

“…While this suggests that test-guided dietary management may be worthwhile, both this and two other subsequently published systematic reviews10 11 have called for better-designed and conducted trials. We have not identified any economic evaluations in this area and while concerns about food allergy have been raised during in-depth interviews of parents’ general experiences of looking after children with eczema,3–5 and have arisen as an important concern for parents in online discussion forums,12 we are not aware of any qualitative work specifically exploring this issue.…”

Online forum users’ views and experiences of managing irritable bowel syndrome: a qualitative analysis of discussion content

“…11 This study follows British Psychological Society guidelines, 19 which consider online forum messages to be located within the public domain, provided that no forum registration is required by the researcher to view them, which is an approach widely used in other studies. 12,[20][21][22][23] Online forums involved in this study are freely available to the public and open access (not password protected). Following the ethics committee's guidance, and to protect the anonymity of the data, forums have not been identified and data excerpts have been paraphrased, with any identifiable information removed.…”