Results from the Systematic Review
In total, 73 studies were included in the systematic review, identifying 12 barriers and 13 facilitators to ED treatment uptake and/or engagement[1]. An overview of the most frequently reported barriers to treatment is provided in Figure 2. While patients most frequently reported stigma, shame, and guilt as barriers to treatment, caregivers and healthcare professionals reported that a lack of ED knowledge among clinicians was the most prominent treatment barrier. All groups reported positive social support to be the most important facilitator for treatment uptake and/or engagement. Further information and results of the systematic review have been published elsewhere [1].
Results from Focus Groups
Two focus groups were completed between September and October 2022. The first focus group had a total of n = 5 participants, including both male and female patients with Binge Eating Disorder. The second focus group consisted of n = 3 female participants with Anorexia Nervosa or Bulimia Nervosa. Participants of both focus groups supported the findings of the systematic review by reporting stigma, shame, and guilt, as well as the role of the treating clinician as important barriers to seeking and/or engaging with treatment services. Participants further reported that a lack of positive social support had a negative effect on their treatment. In contrast to the results of the systematic review, participants of the focus groups reported that the severity of the ED symptoms and the accompanying feelings of distress were primarily responsible for their seeking and/or engaging with treatment services.
Results from the Participatory Narrative Development
Six patient narrative videos were developed from the perspectives of a lived experience representative (Videos 1A and 1B), a psychotherapist (Videos 2A and 2B), and the lived experience representative reporting on a somatic condition unrelated to ED (Videos 3A and 3B; for an overview, see Figure 3).
Each video consists of four key categories, based on a combination of the lived experience representative’s personal experiences and the results of the systematic review [1] and focus groups with currently affected persons:
- The role of stigma, shame, and guilt as a barrier to treatment
- The role of subjective distress caused by the ED as a facilitator for treatment
- The importance of the social environment before and during treatment
- Overall advice and encouragement for currently affected persons.
The level of emotionality was varied across the videos, so that a lower and a higher emotionality version was created for each perspective. To better demonstrate this, Table 1 shows the same excerpt of the script and how it is presented according to the different perspectives and levels of emotionality.
Table 1. Script Excerpts According to Perspective and Level of Emotionality
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Lower Emotionality
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Higher Emotionality
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Lived Experience Representative
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“I had been suffering from an eating disorder for a few months and didn’t know how long I could continue living my life in this way, because I actually still had so many plans.”
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“It was only when the eating disorder had a big enough impact on my life that I realized that I might be “sick enough” for treatment. Over the course of a few months my symptoms worsened, and I suffered a lot due to the eating disorder and the associated fears, rules, and loneliness.”
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Psychotherapist
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“Patients often spend several months struggling with the eating disorder, during which time they suffer increasingly and become unsure if they can continue living in this way.”
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“Patients report that they will only admit to suffering from an eating disorder and being “sick enough” to receive treatment when the eating disorder has had a sufficient impact on their life. This usually takes some time, during which the patient’s physical health deteriorates and they suffer from the eating disorder and its associated fears, rules, and loneliness.”
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Control Group
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“I spent a few months struggling with the pain and restricted mobility, during which time the psychological suffering I experienced kept growing. I didn’t know how I could continue living my life in this way.”
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“It was only when the suffering had a big enough impact on my life that I thought I might be “sick enough” and should perhaps have surgery. Over the course of a few months my symptoms worsened, and I suffered a lot due to the pain and mobility restrictions. I didn’t know how I could continue living my life in this way.”
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Results from the Pilot Study with a Healthy Population
In total, n = 19 participants were recruited for the initial pilot study. Participants identified as female (n = 18) or non-binary (n = 1), and ranged in age from 19 to 55 years (M = 26.00, SD = 8.29). The majority of participants were German citizens (n = 17), while the remaining participants were British (n = 1) or Chinese (n = 1) citizens residing in Germany. When asked about previous experiences with ED, n = 1 participant reported having had personal historical experiences with an ED, while n = 9 participants reported having experiences through friends and/or family members.
Perspectives of the Videos
Authenticity. A significant main effect was found for the perspectives of the videos in regards to the authenticity ratings (F(1, 18) = 6.909, p = .003, η2 = .277). Post-hoc analyses showed that the lived experience videos were rated as significantly more authentic than the control group videos (p = .002). No significant differences were found between the lived experience videos and the psychotherapist videos (p = .106) or the psychotherapist videos and the control group videos (p = .060).
Empathy. A significant main effect was also found for the empathy ratings of the videos (F(1, 18) = 9.301, p < .001, η2 = .341). Post-hoc analyses showed that the lived experience perspective was rated as significantly more empathic than the psychotherapist videos (p = .008) and the control group videos (p = .004). No significant difference was found between the psychotherapist and the control group videos (p = .767).
Usefulness. The results further showed a significant main effect for the usefulness ratings of the videos (F(1, 18) = 25.095, p < .001, η2 = .582), wherein the lived experience videos were rated as significantly more useful than the psychotherapist videos.
Overall Ratings. Lastly, the results showed a significant main effect for the perspective of the videos regarding the overall ratings of the videos (F(1, 18) = 6.018, p = .006, η2 = .251). Post-hoc analyses showed that the lived experience perspective received a significantly better overall rating than the psychotherapist videos (p < .001) and the control group videos (p = .011). No significant difference was found between the psychotherapist and the control group videos (p = .446). A summary of these findings can be found in Figure 4.
Emotionality of the Videos
Authenticity. No significant main effect was found for the emotionality of the videos regarding the authenticity ratings (F(1, 18) = 1.704, p = .208, η2 = .086).
Empathy. A significant main effect was found for empathy ratings of the videos (F(1, 18) = 9.357, p = .007, η2 = .342), wherein the high emotionality videos were rated as more empathic than the low emotionality videos.
Usefulness. A significant main effect was also found for the usefulness ratings of the videos (F(1, 18) = 4.490, p = .048, η2 = .200), wherein the high emotionality videos were rated as more useful than the low emotionality videos.
Overall Ratings. Lastly, the results also showed a significant main effect for the overall ratings of the videos (F(1, 18) = 5.586, p = .030, η2 = .237), wherein the high emotionality videos received a better overall rating than the low emotionality videos. When asked to explicitly state which level of emotionality they preferred, 68.4% of participants reported they preferred the videos with higher emotional content (i.e., Video 1B, Video 2B, and Video 3B). A summary of these findings can be found in Figure 5.
Interaction Effects
No significant interactions were found between the perspective and emotionality of the videos in regards to the authenticity (F(1,18) = 0.191, p = .827, η2 = .010), empathy (F(1,18) = 1.569, p = .222, η2 = .080), usefulness (F(1,18) = 0.175, p = .681, η2 = .010), or overall ratings of the videos (F(1, 18) = 2.661, p = .084, η2 = .129).
Qualitative Interviews
The results of the interviews greatly mirror those of the post-intervention questionnaires. Participants reported that the videos were generally authentic and empathetic, and that they considered the videos as useful for patients with ED. Participants stated experiencing a variety of emotions while viewing the videos, including compassion, sympathy, and joy that the lived experience representative can present a positive outcome. When asked which videos they most preferred, n = 2 (40%) participants stated the lived experience videos, n = 1 (20%) stated the psychotherapist videos, and n = 2 (40%) stated they found both perspectives equally good. All participants reported that they found the lived experience videos to be more authentic than the psychotherapist videos. A selection of quotes from participants is provided in Box 1 to provide further insights.