Cases of eating disorders have increased across a range of populations since the onset of the COVID-19 pandemic (Taquet et al., 2021). In the UK, there has consequently been a rise in demand for eating disorder services, but long waiting lists prevent access to care (Solmi et al., 2021). This delay is concerning given the profound long-term outcomes of having an eating disorder, such as the development of further mental health disorders (Micali et al., 2015). Therefore, there is a strong case to focus on services that provide early intervention for eating disorders to prevent these outcomes. Previous neurobiological, clinical, and socioeconomic research demonstrates that early intervention can promote full sustained recovery and improve outcomes for patients with eating disorders (Allen et al., 2022).
However, rates of treatment seeking for eating disorders are low, at approximately 23% (Hart et al., 2011). Such low rates of help-seeking can be a barrier for early intervention services: how can individuals with eating disorders benefit from these services when there appear to be such significant barriers to seeking help in the first place? There is therefore a need to understand the specific factors that lead some individuals with eating disorders to delay or decide not to seek treatment.
This blog summarises a recent review by Marcela Radunz and colleagues (2023), which aimed to conduct a systematic review with meta-analysis on individual characteristics, demographic factors, and perceived barriers associated with help-seeking for eating disorders.
Radunz et al. (2022) systematically searched three databases for studies looking at barriers or facilitators associated with help-seeking for disordered eating or a diagnosed eating disorder. The authors also searched for unpublished literature, and hand-searched relevant articles identified from databases for missed studies.
Included studies had to be written in English and contain quantitative data that could be extracted for the meta-analysis. Studies also had to investigate between-group comparisons (e.g., help-seekers versus non-help-seekers). The quality of all included studies was assessed using part of the STROBE Statement Checklist for Cross-Sectional Studies. Tests were also done for heterogeneity (an estimate of the potential variation in measurement outcomes between included studies, using Q and I2 statistics) and publication bias (a reporting bias resulting from the choice to publish or not publish studies depending on the direction of the results, measured by Egger’s regression intercept).
Data was extracted from all eligible papers for the meta-analysis, and effect sizes were calculated for non-treatment/treatment-seeking groups. Multilevel random effects meta-analyses were used to calculate an overall effect size.
19 cross-sectional studies were included in the meta-analysis. Most studies were based in North America or Australia, with one study originating in Germany. Data from 6,635 participants was included.
From these studies, the authors extracted effect sizes for 141 perceived barriers and individual characteristics, which they condensed into 19 themes. 56 demographic variables were extracted and synthesised into 5 demographic themes: Age; Ethnicity; Sex at birth; Sexual orientation; Socioeconomic status.
Perceived barriers and individual characteristics
- Body Mass Index (BMI)
- Denial or failure to perceive the severity of the ED (eating disorder)
- Duration of ED
- ED symptoms
- Impairment caused by ED
- Inability of others to provide help
- Knowledge about EDs and information sources
- Knowledge of help and treatment resources
- Lack of encouragement or support from others
- Negative attitudes towards treatment
- Not wishing to be a burden to others
- Practical barriers
- Previous negative treatment experiences
- Stigma or shame
- Use of other resources
Significant barriers to help-seeking behaviour
Only two themes emerged as significant barriers to help-seeking behaviour in the meta-analyses:
- Denial or failure to perceive eating disorder severity, including items such as individuals being unable to perceive the severity of their illness or recognise the need for help
- Perceived inability of others to provide help, including items related to not believing others can help, or a perceived inability of others to understand the problems experienced by the person with an eating disorder
Higher levels of ‘denial to perceive eating disorder severity’ (r = -.19, CI [-0.33 to -0.05]) and ‘perceived inability of others to help’ (r = -.15, CI [-0.30 to -0.01]) were both associated with less treatment-seeking, with small effect sizes. No demographic variables were identified as significantly affecting help-seeking behaviour.
The overall quality of the included studies was rated as good. Publication bias was only found for two themes: ‘knowledge of help and treatment resources’ and ‘socioeconomic status’.
This review identified two significant themes associated with barriers to help-seeking out of 24 possible demographic, individual characteristic, and perceived barrier themes: the denial or failure to perceive illness severity, and a perceived inability of others to provide help. The authors concluded that the results of this review should be considered as preliminary as few studies could be included. There is therefore a need for researchers to continue investigating which factors affect help-seeking in individuals with eating disorders.
Two recommendations for future research were made based on the key findings:
- Research should evaluate the use of psychoeducation on the risks of eating disorders and delaying treatment.
- Recruiting those with lived experience of an eating disorder to encourage treatment-seeking should be explored and evaluated.
Strengths and limitations
This review addresses a significant gap in the literature by conducting a thorough synthesis of the quantitative evidence on factors associated with help-seeking in eating disorders, whilst also addressing limitations of previous reviews by using meta-analytic methods. The review also uses a comprehensive search strategy to identify relevant studies, with the searching of grey literature reducing the possibility of publication bias. Hand-searching was also used to ensure that no relevant studies were missed.
In terms of limitations, the authors found limited available quantitative evidence for inclusion in the review, which meant that effect sizes could not be calculated for many of the themes. This meant that the items used to measure one of the two significant themes, ‘perceived inability of others to provide help’, was only extracted from one participant sample. This reduces the ability to generalise this barrier to other populations.
It is interesting that no demographic factors were identified as significant in relation to help-seeking for eating disorders, given that previous research suggests that certain demographics, such as gender identity, ethnicity, and socioeconomic status, influence help-seeking and the perceived need for treatment in this population (Sonneville & Lipson, 2018). This may be due to limitations of the studies included in the current review. For example, many studies had female-majority and white-majority samples, and publication bias was identified in relation to socioeconomic status. Therefore, the impact of demographic factors related to help-seeking may not have been fully captured by the included studies. Future quantitative research in this area must strive to consistently report on relevant demographic factors and recruit diverse samples to investigate the effect of these factors on help-seeking in individuals with eating disorders. This will help early intervention services identify how to increase the accessibility of their services.
Implications for practice
Whilst the authors consider the results of this review as preliminary, the finding that a significant barrier to help-seeking in eating disorders is denying or failing to perceive the severity of illness is consistent with systematic reviews (e.g., Ali et al., 2017) and qualitative research from a lived experience perspective (Leppanen et al, 2021). Breaking through this denial is a difficult but important development for many patients in their eating disorder recovery, and is an important element for clinicians working in early intervention services to consider.
In light of these findings, early intervention services should ensure that both praising help-seeking and early education on the risks of an eating disorder are prioritised. In the UK, access to early intervention services for eating disorders is often through primary care services such as GPs, who may be the first person someone with an eating disorder talks to about their illness. These services play an important role in listening to and validating the concerns of the individuals who present to their service. Primary care services should also therefore be aware of the tendency for individuals to deny how severe their illness is or believe that others cannot help them.
Currently, care for an eating disorder is sometimes restricted because of commissioning decisions that lead to weight restrictions for specialist treatment. In areas that only allow low-weight patients to access specialist care, this creates a disturbing incentive to lose more weight to gain help (Brown et al., 2018). There are also widespread stereotypes that eating disorders are outwardly recognisable, with some sufferers being dismissed and viewed as ‘not sick enough’ to have an eating disorder (Eiring et al., 2021). If someone with an eating disorder, who may fail to perceive the severity of their illness, has these views reinforced by such stereotypes or clinical decision-making, this could delay them from seeking help even more. Commissioners of services must therefore recognise the value of early intervention services that praise help-seeking and work to prevent chronic illness. A recommendation in this review is for services to incorporate individuals with lived experience in care and treatment, to encourage those seeking help by recalling on their own experiences.
Statement of interests
Radunz, M., Ali, K., & Wade, T. D. (2023). Pathways to improve early intervention for eating disorders: Findings from a systematic review and meta‐analysis. International Journal of Eating Disorders, 56(2), 314-330. https://doi.org/10.1002/eat.23845
Ali, K., Farrer, L., Fassnacht, D. B., Gulliver, A., Bauer, S., & Griffiths, K. M. (2017). Perceived barriers and facilitators towards help-seeking for eating disorders: A systematic review. International Journal of Eating Disorders, 50(1), 9–21. https://doi.org/10.1002/eat.22598
Allen, K. L., Mountford, V. A., Elwyn, R., Flynn, M., Fursland, A., Obeid, N., … & Wade, T. (2022). A framework for conceptualising early intervention for eating disorders. European Eating Disorders Review. https://doi.org/10.1002/erv.2959
Brown, A., McClelland, J., Boysen, E., Mountford, V., Glennon, D., & Schmidt, U. (2018). The FREED project (first episode and rapid early intervention in eating disorders): service model, feasibility and acceptability. Early Intervention in Psychiatry, 12(2), 250-257. https://doi.org/10.1111/eip.12382
Eiring, K., Wiig Hage, T., & Reas, D. L. (2021). Exploring the experience of being viewed as “not sick enough”: a qualitative study of women recovered from anorexia nervosa or atypical anorexia nervosa. Journal of Eating Disorders, 9, 1-10. https://doi.org/10.1186/s40337-021-00495-5
Hart, L. M., Granillo, M. T., Jorm, A. F., & Paxton, S. J. (2011). Unmet need for treatment in the eating disorders: a systematic review of eating disorder specific treatment seeking among community cases. Clinical Psychology Review, 31(5), 727-735. https://doi.org/10.1016/j.cpr.2011.03.004
Leppanen, J., Tosunlar, L., Blackburn, R., Williams, S., Tchanturia, K., & Sedgewick, F. (2021). Critical incidents in anorexia nervosa: perspectives of those with a lived experience. Journal of Eating Disorders, 9(1), 1-14. https://doi.org/10.1186/s40337-021-00409-5
Micali, N., Solmi, F., Horton, N. J., Crosby, R. D., Eddy, K. T., Calzo, J. P., … & Field, A. E. (2015). Adolescent eating disorders predict psychiatric, high-risk behaviors and weight outcomes in young adulthood. Journal of the American Academy of Child & Adolescent Psychiatry, 54(8), 652-659. https://doi.org/10.1016/j.jaac.2015.05.009
Solmi, F., Downs, J. L., & Nicholls, D. E. (2021). COVID-19 and eating disorders in young people. The Lancet Child & Adolescent Health, 5(5), 316-318. https://doi.org/10.1016/S2352-4642(21)00094-8
Sonneville, K. R., & Lipson, S. K. (2018). Disparities in eating disorder diagnosis and treatment according to weight status, race/ethnicity, socioeconomic background, and sex among college students. International Journal of Eating Disorders, 51(6), 518-526. https://doi.org/10.1002/eat.22846
Taquet, M., Geddes, J. R., Luciano, S., & Harrison, P. J. (2022). Incidence and outcomes of eating disorders during the COVID-19 pandemic. The British Journal of Psychiatry, 220(5), 262-264. https://doi.org/10.1192/bjp.2021.105
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