Parents online exchanges about eczema treatments: qualitative analysis of online discussion forums

Problem

Parents and carers of children with eczema often turn to social media sites and online discussion forums for information and peer-support. Previous research has shown that sharing and receiving experiences online about long-term conditions helps individuals to; address offline information gaps, learn self-management behaviours from others, receive validation, build community with similar others, navigate health services, and all within the protection of anonymity. Nevertheless, concerns exist regarding the quality of the advice shared on discussion forums. Recent online discussion forum studies of parents of children with eczema found diverse beliefs expressed about the use of topical corticosteroids to treat eczema. However, little is known about the beliefs that parents share on discussion forums about other treatments for eczema, such as emollients, antihistamines and bandages/wet wraps. This study aimed to explore the views and experiences exchanged by parents on social media sites and online parenting forums about eczema treatments.

Approach

We conducted an online survey to identify the most popular online resources used by parents of children with eczema. We then collected online discussions about eczema treatments dating back to February 2016 from two online parenting forums and one social media site, identified as most frequently accessed in our survey. Discussions were included where the initial post referred to at least one treatment for their child’s eczema and received at least one response. Relevant discussions were identified from the parenting forums through internal search functions using terms such as ‘eczema’, ‘steroid’ and ‘emollient’, and by reading through all discussions from the social media site group. We have coded the data in NVivo version 12 and are carrying out an inductive thematic analysis of the data.

Findings

243 discussions (71 from Site 1; 78 from Site 2; 94 from Site 3) were collected. The nature of responses to requests for information about treatments varied: some parents responded by providing long detailed accounts of their own child’s treatment journey, often with emphatic advice that the same treatment that worked for them must work for others; others expressed more awareness that different treatments work for different people. Questions often received responses containing polarised views about treatments, with some posts offering ‘standard’ advice and others offering advice that could lead to disagreement with health professionals. Many parents expressed their desperation to help their children’s eczema and discuss the high cost of treatments. There were frequent encouragements to others to ‘fight’ for allergy testing and referral to a dermatologist.

Consequences

This study will provide an insight into some of the eczema treatment advice and support shared by parents/carers online. Findings will help academics and clinicians to better understand the perspectives that parents bring to their consultations and about their use of online resources for advice and support for eczema.