What do we want to know?
Eating disorders (ED) continue to be a concern worldwide. Traditional media have been seen as contributing to problematic discourses about ideal bodies. More recently, concern has grown about content and spaces that are online, especially if these hold potential to increase disordered eating and other ED symptoms. A qualitative evidence synthesis was conducted, to explore young people’s experiences of online ED content. To ensure that the work was relevant to the current UK context the synthesis was informed by stakeholder involvement. Firstly, a multidisciplinary panel was set up to inform and guide the review. This consisted of professionals who specialised in child and adult eating disorders.
We also held two online workshops to consult with a group of young people with lived experience of online eating disorder content. The purpose of these workshops was to ensure the review explored areas of relevance to young people. This work was supported by a specialist in the active involvement of young people in research.
Who wants to know?
This independent research report was commissioned by the National Institute for Health Research Policy Research Programme for the Department of Health and Social Care. The findings may be of interest to national and local policymakers, clinicians, therapists, young people and their parents/guardians, educators, researchers and members of the public interested in experiences on young people’s use of online eating disorder content.
What did we find?
We identified 18 studies, reporting young people’s experiences of online ED content. To be included in the synthesis, studies needed to involve young people between the ages of 11-25, and from countries in the Organisation for Economic Co-operation and Development. The primary studies mainly used qualitative methods such as focus groups and interviews.
The synthesis of the studies led to three main themes: (1) comparing (2) curating and (3) community. The comparing theme illustrates how young people use online content to evaluate their own and others’ bodies and behaviours. The curating theme explores the ways in which young people manage and create this content. The community theme explores the reasons why young people are drawn to social spaces where content is shared, and what purposes these spaces serve. The complex and contradictory nature of online platforms could be summed up as offering a ‘double-edged sword’; on one hand these online communities offer refuge for young people with lived experience of ED who may feel unsupported, but equally, online content could also trigger and prolong harmful behaviour.
What are the conclusions?
The findings highlight synergies in engagement around the key themes of comparing, curating and community. They also identify key differences in perspectives within those themes, depending on whether young people have lived experience of an eating disorder and where they are in their ED recovery process. However, the review also draws attention to the need for further engagement with this complexity, given the ongoing relationship young people have with online platforms and the subjectivity of their experiences in those spaces. New and existing policy interventions focused on supporting young people in this area could consider whether professionals routinely explore the role of online platforms as a tool that can support or hinder recovery from eating disorders. Further research could also explore how digital literacy interventions related to online harms could potentially support young people, in how they can better navigate these social spaces, alongside seeking outside assistance if necessary.
Although this is the first systematic qualitative evidence synthesis to examine online eating disorder content, we also identified evidential gaps and limitations. There could be further investigation of male participants, it would also be useful for future research to collect data from ethnic minority participants and members of the LGBTQIA+ community purposively, to explore whether their cultural/religious upbringings or identities play any role in the types of ED content they engage with and the nature of this engagement. One key limitation relates to the time when the studies were searched for this review, as more recent primary studies may now have been published, and this does appear to be a rapidly growing area of research. There may also be more digital platforms distinct from those discussed in the research identified and preferred by users.
How did we get these results?
Studies included in this review were identified from a systematic map of empirical literature investigating the relationship between eating disorder content online and young people’s body image concerns, weight control behaviours, or eating disorder symptoms. Searches for the map were undertaken in 17 health, psychology, and education databases. We also searched online resources and conducted focused searches of eating disorder topic journals.
Studies were critically appraised to assess reliability and relevance, and whether steps were taken to strengthen rigour in sampling, data collection and data analysis; the extent to which findings were supported by data, the breadth and depth of findings, and the privileging of participants’ views.
This report should be cited as:
Khatwa M, Rees R, Dickson K, Stansfield C, Thomas J (2023) Young people and online eating disorder content: a qualitative evidence synthesis. London: EPPI Centre, UCL Social Research Institute, UCL Institute of Education, University College London.