Education is key to filling gaps in eating disorder care

Education is key to filling gaps in eating disorder care

In this fifth post that June Alexander has adapted from Alykhan Asaria’s article on improving eating disorder care for underserved groups, three more underserved groups are discussed – socioeconomically and sociogeographically disadvantaged people, ethnic/racial minorities, and sexual/gender diverse people.

Socioeconomically and sociogeographically disadvantaged people

Access to adequate healthcare often depends on a person’s socioeconomic circumstances and where they live, and these two factors are often interlinked.

Higher levels of socioeconomic deprivation are usually associated with lower household income levels. Because low-income eating disorder sufferers do not fit the inappropriate skinny white, affluent girl (SWAG) eating disorder stereotype, unaware healthcare professionals are more likely to underdiagnose or misdiagnose them. However, eating disorders are equally prevalent among low-income and high-income groups.

Clinical education/training is necessary to increase healthcare professionals’ awareness and understanding of the occurrence of eating disorders in low-income groups. Socioeconomically disadvantaged eating disorder sufferers also tend to experience higher levels of stigma in their communities, which is then internalised and may deter help-seeking. Stigma (including self-stigma) also affects other underserved groups and will be discussed in a future article.

The impact of food insecurity

To better serve socioeconomically disadvantaged eating disorder sufferers, healthcare providers must ensure that healthcare professionals are well educated on the impact of food insecurity, which has worsened globally in recent years. People who are food insecure understandably tend to restrict how much they eat when food is scarce, and compensate by overeating when food is more affordable/accessible.

These tendencies have been likened to feast-famine cycles, which are reinforced in countries where welfare payments are given periodically (e.g., every four weeks). Although these eating patterns are not disordered eating, they inevitably make affected individuals more vulnerable to developing eating disorders.

In LaMarre et al. (2024), an interviewed participant “described their eating disorder as a ‘coping mechanism’ as well as a perfect storm situation – a way to ‘make the best’ of being food insecure and living in a society where diet culture ran rampant… experiences of ‘not having food around’ aligned with a diet culture mentality wherein food scarcity might be ‘made the best of’”. This quotation also demonstrates the intersection of weight stigma and food insecurity.

Call for unity in making healthier foods accessible

Because food insecurity and disordered eating are so interlinked, healthcare providers must work closely with other support providers [e.g., social and welfare services, charities, food banks and pantries] to ensure that eating disorder sufferers have the practical and financial means to afford and access healthier foods. Such foods tend to be more expensive and more challenging to acquire regularly. Moreover, their daily living expenses must be considered, particularly housing and energy costs, which are linked to food insecurity, as reflected by the widely reported ‘heat or eat’ crisis.

Underweight eating disorder sufferers may be particularly vulnerable due to their loss of body fat insulation, and, in the words of a parent caregiver, “the sustained reduction in temperature caused by malnourishment has a powerful effect on the brains of patients with anorexia. Warming patients up seems, to me, a no-brainer”.

Additionally, patients face hidden costs when accessing public healthcare services that are free at the point of access, such as travelling to appointments, taking time off work, and arranging childcare. NHS ‘low-income schemes’ are supposed to relieve some financial pressures; however, qualifying patients may be unaware and/or feel undeserving of them. Furthermore, two-tier healthcare systems are emerging in countries like the UK due to their overwhelmed public healthcare services.

Postcode lottery

In the UK, mental health services in poorer and remote/rural areas are disproportionately underfunded/under-resourced/understaffed, resulting in a so-called ‘postcode lottery’. In eating disorder care specifically, this is shown by nationwide disparities in waiting times, staffing levels, and caseloads (all of which are interrelated).

In 2018/2019, the charity Beat found that there was a 12-fold difference between the least and most disadvantaged NHS areas in terms of eating disorder services’ average waiting times, a nine-fold difference in terms of their relative staffing levels, and an eight-fold difference in terms of their relative caseloads.

Separately, clinicians running the first episode and rapid early intervention for eating disorders (FREED) programme have reported “an attitude to develop a programme that creates a kind of postcode benefit”. Similar inequalities exist in comparable countries such as Canada and Australia.

Ethnic and racial minorities

Some people with eating disorders are underserved due to their ethnicity or race. In Western countries with majority Caucasian populations, these people come from Black, Asian, and Minority Ethnic communities. People from these communities are more likely to be socioeconomically disadvantaged, so the recommendations for socioeconomically and sociogeographically disadvantaged people are equally relevant.

Because people from Black, Asian and minority ethnic communities do not fit the inappropriate SWAG eating disorder stereotype, unaware healthcare professionals are more likely to underdiagnose or misdiagnose them. However, people from Black, Asian and minority ethnic communities are as likely as Caucasions to experience disordered eating.

Clinical education/training is necessary to increase healthcare professionals’ awareness and understanding of the occurrence of eating disorders in ethnic/racial minorities.

People from Black, Asian and minority ethnic communities also tend to experience higher levels of stigma in healthcare and their communities, which may then be internalised and may deter help-seeking. As stigma (including self-stigma) is a broader problem that also affects other underserved groups, it will be discussed more in a future article.

Owing to the diversity of ethnic and racial minorities, I advocate that clinical education/training programmes teach healthcare professionals the cultural norms and sensitivities of all these subgroups. Ideally, they should learn from experts by experience, such as Jasmine Leyva, who articulated how, “Binge eating is a very nuanced problem because it involves overeating and it is common in the Black community, for women especially, to be celebrated for overeating. It’s almost like a badge of honour when people say, ‘That girl… can eat.’”

Misguided  focus on obesity and weight loss instead of eating disorder behaviours

When treating Black women with eating disorders, misguided healthcare professionals often focus on obesity and weight loss, rather than on the underlying eating disorder cognitions/behaviours. Similar to diagnostic overshadowing, this may be considered a type of ‘ethnicity/race overshadowing’.

Cultural norms related to diets and eating behaviours/routines must be appreciated, as they may not align with those expected by healthcare professionals educated in Western countries. For example, I am a second-generation immigrant raised on a diet frowned on by most nutritionists. However, this has not underserved me because I now only eat prepackaged ‘staple’ foods (almost always processed). The alternative would be eating nothing and dying.

Language and literacy barriers

Additionally, healthcare providers should consider the language and mental health literacy barriers experienced by people from Black, Asian and minority ethnic communities who have an eating disorder, especially those who are first-generation immigrants. Memon et al. (2016) reported that in general mental healthcare, the inability to communicate with healthcare professionals effectively prevented people from accurately articulating their problems.

As eating disorder care is a predominantly Caucasian field, such barriers are likely to be experienced more profoundly by people from Black, Asian and minority ethnic communities who have an eating disorder and may deter them from seeking help.

Specific ways to overcome these barriers and encourage help-seeking include interpreters, translator devices, translated psychoeducational materials, and health literacy resources [e.g., health literacy toolkit, health literacy e-learning and teach-back]. Above all, patience and active listening are required.

Sexual and gender-diverse people

Some eating disorder sufferers are underserved due to their sexual orientation or their gender identity. Sexual and gender-diverse individuals are at greater risk of developing eating disorders than the general population–reportedly three times more likely among young people in the UK. Gender-diverse individuals may be up to eight times more likely to experience disordered eating than their cisgender peers.

Many sexual and gender-diverse people avoid seeking help and do not disclose their sexual/gender identity when they do access it; Duffy et al. (2016) reported that 40 per cent of transgender participants with treatment experiences had not disclosed their gender identity. Healthcare providers can be more welcoming by using safety-signalling gestures (e.g., rainbow decorations) and thoughtfully constructed administrative forms.

Healthcare providers must ensure that healthcare professionals are well educated on the stigma, prejudice, and traumas that sexual and gender-diverse people are likely to have experienced in society and healthcare. This is particularly so in the field of eating disorder care, which is traditionally biased towards cisgender and heterosexual people.

Relatedly, training in gender competence is needed to ensure that those experiences are not repeated and reinforced, with a particular emphasis on thoughtful language and communication, including correct pronouns and forenames.

The importance of gender-affirming care cannot be understated, just as neurodiversity-affirming care is critical for eating disorder sufferers with neurodevelopmental conditions.

Healthcare providers may need to adapt their care environments and standard procedures. For example, during medical examinations, McGregor et al. (2023) suggest “allowing gender-affirming garments to remain on… [and] asking what words are affirming for a patient to use concerning the body/anatomy, discussing what a physical exam will entail before conducting the exam, explicitly asking for and getting consent for the exam, stopping the exam if the patient withdraws consent, and limiting the duration of the exam”.

Trauma-informed treatment approaches

In combination with gender-affirming care, trauma-informed treatment approaches may be needed to help sexual and gender diverse individuals process the traumas that they may have experienced in society and health care (especially in eating disorder care).

Silverstein et al. (2024) refer to specific trauma interventions, including eye movement desensitisation and reprocessing (EMDR) and acceptance and commitment therapy (ACT). Still, they note that these interventions have not yet been validated in sexual and gender-diverse populations.

Traditional cognitive approaches that frame traumatic experiences as being caused by internal cognitive biases (as opposed to external injustices) are the antithesis of trauma-informed approaches.

Of note, Silverstein et al. (2024) warn that “body image approaches are often one-dimensional, focusing on accepting one’s body, often with an insinuation that people are engaging with eating disorder behaviours because they are simply unhappy with how they look.

These narratives and paradigms, such as body positivity, have great potential to be traumatising to LGBTQIA+ patients. Claiming that a positive mindset or radical acceptance will materially shift a person’s living conditions indicates a lack of awareness and can be harmful.

Aly’s complete article

To read Aly’s complete article, go to: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-024-01145-2
Additionally, Aly’s final article in this series on underserved groups in eating disorder care will appear soon on www.lifestoriesdiary.com/blog