THE PROBLEM
Communication is one of the most important components of the work health care providers (HCP) do with adolescents and young adults (AYA). There are AYA with specific disorders or diseases that require particular attention to both the content of the language and the way in which HCP use this language when communicating with their patients. This is particularly true for AYA with eating disorders (ED). AYA with ED can experience or perceive language differently than we intend. The HCP may unintentionally make a comment or provide words of advice to an AYA struggling with an ED that can trigger or perpetuate the disorder. Developing a mutual understanding among HCP, trainees and caregivers of the content of the language and how to use this content more thoughtfully and empathetically is referred to as shared language (1). This means noticing, understanding, and being mindful of how the meaning of certain words may signify something very different to an AYA with an ED, and appreciating that the ED itself can alter the perception of the communication. Developing a shared language is essential to the therapeutic and trusting relationships.
NEW INFORMATION
Unlike the field of obesity (2), there is little empiric data looking specifically at HCP language and communication among AYA with ED and their experiences or perceptions. However, the following barriers to effective communication with AYA with ED have been identified:
Patient Perceptions: Evidence indicates that losing weight can make AYA with ED feel attractive and successful, reinforcing positive external feedback they receive regarding appearance and dieting performance, thereby increasing their self-confidence (3). Word association studies have shown that patients with ED respond faster to and are hyperaware of ‘fat’-related words (4). In the process of weight recovery and treatment, if the patient was told they looked ‘good’ by a clinician, they understood this to mean that they were gaining weight or were too fat. Patients were also acutely aware of both verbal and nonverbal opinions about appearance (5).
Provider communication: In one study, 68.8% of HCP reported feeling frustrated and 41.7% reported frequently feeling helpless when caring for adolescents with ED, for example, due to difficult behaviours of and impaired communication with these patients (6). Over half of the HCP felt that the patient was responsible for their illness, contributing to this frustration.
Provider knowledge: Evidence suggests that HCP and trainees may lack self-efficacy when communicating with AYA with ED (2). Further, HCP knowledge, nonverbal communication, issues around control, and motivation for treatment were identified as key factors for creating positive or alternatively, negative encounters (7). For example, if a provider lacked knowledge of ED, patients were more likely to view the encounter negatively.
Stigma: Patients and their families may feel blamed for causing their child’s ED. This stigma can be a significant barrier to seeking care. Patients with binge ED and their psychiatrists were reluctant to discuss the diagnosis, and inadvertently the HCP occasionally framed statements as judgmental and implied responsibility of the patient for the illness (8). Further, lack of knowledge by nurses about the ED itself was identified as a barrier to building positive relationships (i.e., believing the illness was the fault of the patient) (9).
Table 1 outlines how to reframe well-intentioned statements when communicating with AYA with ED.
Table 1.
Language used, heard, and alternative options for communicating with AYA with ED
| The language used to communicate to the AYA with an ED | What AYA with ED hear | Alternative options for communication | Purpose of communication change |
|---|---|---|---|
| “You look great.” | “I must be getting fat.” | “I heard that you had a difficult day yesterday. Do you want to talk about it?” | In general, avoid any reference to the AYA’s appearance, especially their body size, shape or weight. Focus on the AYA’s inner qualities or try talking about how the AYA is feeling. |
| “You ate a lot of food today.” | “I am so ashamed, I can’t seem to control myself.” | “It is good to see you today. How are you feeling? ” | AYA with ED feel self-conscious and guilty about the types and quantity of food they are eating. Bringing it to their attention can make them feel guilty and embarrassed and can also be triggering. As AYA recover, they have greater energy needs than young people who don’t have an ED. You can remind the AYA that food is the medicine for recovery. |
| “Why don’t you just eat?” | “Why is the doctor not listening to me…I am not being heard!” | “I understand that this is difficult for you, and I know how hard you are trying.” | ED are complex, serious disorders that have biological, genetic, and socio-cultural issues that contribute to an AYA’s impairment. Being empathetic to the patient’s experience can be helpful. Further, being understanding and supportive can help with building a therapeutic and trusting relationship. |
| “You look really thin, you must have lost a lot of weight.” | “My eating disorder is working, I’m getting thinner. I’m so proud of myself!” | “This eating disorder is going to prevent you from doing things that you love to do.” | Avoid focus on appearance, and remind the AYA how the ED can have negative physical and psychosocial impact on their health and well-being. |
| “Why don’t you stop vomiting?” | “I feel ashamed that I can’t stop this cycle.” | “This must be really hard for you. How do you think I can help?” | These comments can often be interpreted as blaming and shameful. Redirect questions to be patient centred, supportive and focused on realistic goals. |
| “Why didn’t you have a piece of chocolate cake on your birthday?” | “I couldn’t have possibly eaten that piece of cake. I would have gone against all the rules and morals by choosing to eat it. I would have felt so bad.” | “Let’s celebrate your birthday.” | Avoid making comments on what an AYA should or should not be eating unless it is part of their treatment plan. Comments tend to increase an AYA’s guilt over disobeying the ED. Talk about things (other than the ED) that are of interest to the AYA. |
| “You look unhealthy.” | “I must be thin. My restriction over the past week has worked!” | “You appear to not have as much energy as compared to last week. What do you think is going on?” | Avoid comments that focus on body shape, weight or size. It is appropriate to ask questions about an AYA’s health rather than making assumptions about the way they look or feel. |
| “You don’t look underweight. I’m not sure you have an ED.” | “I must be too fat. I want help with these thoughts, but maybe I am not sick enough and don’t need help.” | “Are you struggling with something that you’d like to talk more about? I’d like to see you more regularly so we can talk more about it.” | AYA with ED can be of all shapes and sizes. AYA with EDs may still be struggling with ED thoughts, even when they are weight restored. Avoid discussion about physical appearance. Redirect the discussion to the patient’s experience and their feelings. Offer your support. |
| “Your eating behaviours are worrisome.” | “My eating disorder is visible now, so I must be doing something right. I am really anorexic, which is where I feel I belong.” | “I am worried about you.” | Patients with ED feel guilty about their eating behaviours. Shaming them into stopping these behaviours is not helpful. It is best to focus on the health effects and concerns you have for the AYA with an ED. |
| “Hey, you look like you’ve recovered from your ED.” | “Although I wish this eating disorder would go away altogether, there is a part of me that wants to hang onto it.” | “How can I help support your recovery?” | Recovery from an ED can be a long process and patients may be ambivalent about this process. Be patient. Do not make assumptions about a patient’s stage of recovery. Ask supportive, open-ended and patient-centred questions. |
AYA Adolescents and young adults; ED Eating disorders.
RECOMMENDATIONS
Language, both the content and use of this content with AYA with ED is an area that needs further study. It is safe to assume that HCP, trainees, caregivers, and patients come to the clinical encounter with different knowledge, skills, and perspectives. Moreover, AYA with ED present at different ages and developmental stages, genders, races, ethnicities, and with different sociodemographic status. Appreciating these complexities, one needs to exercise special care in the language they choose to use when communicating with AYA with ED to ensure this language is communicated and understood in the way that it was intended. The care of AYA with ED is built upon relationships; shared language has the potential to cultivate trusting therapeutic relationships and improve patients’ experiences and quality of care. We provide the following recommendations, based on the limited research and expert opinion:
AYA with ED have different body weight, shapes, and sizes. They may be considered to be at a body weight that is appropriate for them, underweight or overweight. HCP should aim to work against the value placed on appearances and size (10,11).
The process of recovery from an ED is challenging. Thus, a HCP is likely to observe changes in the body weight, shape, and size of AYA who needs to gain weight as part of their treatment. It is important to avoid commenting about a person’s changing body and appearance.
Avoid talk about dieting, exercise, and calories. Avoid putting the focus of the conversation on food alone.
Use nontriggering language, avoiding content and words that will upset or lead to further ED behaviours. For example, utilize phrases such a ‘weight recovery’ instead of ‘weight gain’; ‘nutrition’ or ‘energy’ instead of ‘calories’; ‘food is medicine’ instead of ‘you have to eat more food’.
Externalization of the ED is a therapeutic technique used in some treatments of ED to separate the AYA from the ED, i.e., someone has an ED, no one is an ED. Avoid terms like ‘anorexic’ and ‘bulimic’.
Avoid using language that implies blame or suggests that the AYA is doing something wrong. Use compassionate and caring language. AYA are more likely to respond when you show concern about their health and well-being (11).
Incorporate a shared language approach: notice, understand, and be mindful of the meaning of certain words, phrases or sentences when communicating with an AYA with an ED.
Acknowledgements
We would like to thank Natalya Anderson and Tania Turrini, RD for their help with language editing. We would also like to thank our patients and families for the privilege of allowing us to provide care.
Funding: There are no funders to report for this submission.
Potential Conflicts of Interest: DKK reports that she is Editor-in-Chief for Neinstein’s Adolescent and Young Adult Health Care: A Practical Guide. There are no other disclosures. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.
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