#How Can We Help You?: An Instagram-Based Online Self-Help for Eating Disorders

Abstract

In recent years, there has been a noticeable increase in online self-help treatments and peer-support programs for eating disorders. The possibility of easily accessing them anytime makes these programs an important support tool and an influencing source for increasing motivation to change. The aim of this work is to describe the #How can we help you? project, its initial feedback received from users, and its future directions. Researchers and clinicians developed an Instagram profile (Dicci Come Aiutarti) based on psychoeducation, aimed at orienting those suffering from a self-reported eating disorder towards clinical care, providing information about eating concerns and related constructs, and increasing motivation for treatment and illness awareness. The contents shared are based on narratives about people who had recovered from an eating disorder, importance and ability to change, and nutrition management. We have provided an overview of the needs of the Instagram profile users, a description of the main interactions recorded since the profile was opened, and examples of the unmet needs shared by users in direct messages. Future directions of the project concern the definition and formalization of the type of support provided by developing a psychoeducational and integrated program and also, the formulation of a research protocol able to assess the usability, effectiveness, and satisfaction of the Instagram profile.

1. Introduction

Eating Disorders (EDs) are severe and enduring psychiatric syndromes, often characterized by high risk of chronicity, relapses, and comorbidity [1]. These serious conditions affect physical, psychological, and social functioning; therefore, there is an urgent clinical request to implement specialized services that might provide basic information to better understand, recognize, and address EDs, especially for those who are unsure about eating disorder diagnosis and prognosis [2]. Despite the disabling nature of eating disorders, many individuals with EDs do not receive the appropriate mental health care. Although there is evidence of efficacious therapies available for EDs, there seem to have been relatively low rates of help-seeking for ED-specific symptoms by individuals with anorexia nervosa (AN), bulimia nervosa (BN), and binge-eating disorder (BED). Barriers to therapy may be personal feelings of shame and fear, ED-related beliefs and perceptions, and a lack of access to, or availability of, the treatment [3]. Recently, the use of eHealth technology has been proposed as a potentially effective alternative to traditional, in-person treatment for those with EDs. As reported by Linardon et al., [4], the Internet, with its scalability and cost-effectiveness in delivering information and reducing help-seeking barriers, has offered a positive scenario for those who are suffering from eating concerns [5]. Specifically, eHealth interventions such as online self-help have the potential to reduce the individual’s unmet needs by providing easily accessible health care services. One of the strategies to support people in accessing and receiving adequate treatment involves the sharing of information and behavior change skills through guided self-help interventions.

In recent years, the effectiveness of self-help treatments for the management of EDs has been supported in order to respond to these needs [6]. Self-help treatments consist of the use of materials (manual, workbook, video-clips) aimed at facilitating the understanding of psychological difficulties, improving awareness, motivation to change, and the importance of obtaining help, reducing the high rates of chronicity and relapse [7]. On the other hand, guided self-help (GSH) treatments add the element of guidance to these self-help resources [8]. The National Institute for Health and Care Excellence (NICE) guidelines have recommended guided self-help as a first-line intervention for eating disorders [9], especially when added to treatment as usual. Self-help or guided self-help can be based on different theoretical backgrounds; psychoeducation and cognitive behavioral treatments are the most common therapeutic orientations used for these psychological interventions [6]. Nowadays, psychoeducational interventions are delivered online through websites, mobile apps, or social profiles offering basic information to users about psychological difficulties and their management, feedback to questions/doubts, or interactive materials [10,11,12]. The easy opportunity for users to access online psychoeducational resources from anywhere and at any time of the day makes this intervention modality potentially appealing to those who want to receive a source of support and to increase their motivation to change [13]. There is evidence that online psychoeducational interventions can improve mental health literacy, promote help-seeking, and effectively address a range of mental health problems [14,15]. The impact of online services aimed at improving the self-management of those with eating disorders can reduce the harmful effects of social media and forum groups such as pro-ana and pro-mia, limiting their dissemination and spread. On the other hand, entirely online self-help (SH) available for the needs of the users, allows the reduction of physical distances and service barriers to therapeutic care; rather than spending time on long waiting lists, patients with eating disorders get the chance to receive timely support and a response to their need for care, as well as increasing motivation and illness awareness, respectively, avoiding high rates of chronicity or lacking help.

Two recent meta-analyses demonstrated that GSH was effective in reducing global eating disorder psychopathology and achieving abstinence from binge-eating when compared with a control condition [8], and it helped to reduce drop-out rates in interventions for anorexia nervosa [7]. However, GSH/SH did not produce more clinical outcomes (i.e., BMI, anxiety, depression, quality-of-life) in anorexia interventions. These findings demonstrated that (guided) self-help interventions have the potential to increase the adherence or engagement of patients to treatment.

Another modality that might remotely support people with eating disorders may be represented by the role played by social networks among adolescents and young adults. For instance, despite the negative consequences that social media such as Facebook or Instagram may have for eating disorders [16,17,18], they may also have positive implications by allowing users to follow body-positive role models and socially-conscious accounts and attend supportive groups or pages. Moreover, the use of Instagram for those who suffer from eating disorders or dysfunctional eating behavior could be fundamental in finding some help from geographically distant professionals, experts who are familiar with eating disorders, and also from the recovery users community [19].

Aims of This Study

In this brief paper, the proposed aims are related to the analysis of an Instagram profile, “#How can we help you?”, created by the authors of this study with the goal of providing information and support to people with self-reported eating difficulties with regard to risks, consequences, and maintenance factors related to undereating and overeating. Therefore, we aim (1) to evaluate which contents the followers of the “#How can we help you?” IG profile appreciated/used the most and which they considered most attractive and valuable for their path to recovery and (2) to explore what needs they expressed to the IG profile creators in the shape of direct messages (DMs) regarding the shared contents of this psychoeducational profile.

2. The Project “#How Can We Help You?”

On 11 April 2022, we launched an online psychoeducational Instagram profile (www.instagram.com/diccicomeaiutarti_dca/) called Dicci Come Aiutarti (DCA) in Italian; the name of the profile plays on the meaning of the Italian acronym for eating disorders (DCA: Disturbi Comportamento Alimentare) with a sentence that translates to “How can we help you?”.

The opening of this profile is part of a broader research-action project emerging from the interest of a group of researchers active in the EDs area and affiliated with the Department of Psychology, Educational Science, and Human Movement at the University of Palermo in Italy. The creators of this project are clinical psychologists focusing on the treatment of eating disorders (GA, GL, and SG) and PhD and Masters students (AT, MS, FV, and DM).

2.1. Theoretical Framework (Self-Help Contents Shared)

This idea drew its inspiration from the online clinical trials, operated by the team of Professor J. Treasure and colleagues, that were geared towards anorexia nervosa patients and their carers [20]. In this context, we focused on those patients with initial eating difficulties who had not been referred to ED centers or did not have a confirmed diagnosis. Taking into account the cognitive-interpersonal model of eating disorders [21], dysfunctional eating patterns are generally maintained through four factors: (a) positive beliefs about the importance of the illness in one’s own life; (b) a rigid thinking style; (c) difficulties in emotion regulation and positive emotion recognition; and (d) problematic social relationships. Our shared contents are based on some principles originally developed for the Maudsley Model of Anorexia Nervosa Treatment for Adults (MANTRA) [22]. MANTRA aims to work on the cognitive, emotional, interpersonal, and biological factors which maintain an ED. The MANTRA model wishes to overcome whatever keeps people stuck in their path to recovery, gradually working to find alternative and more adaptive coping strategies. Therefore, the modules developed are related to a motivation to change and recover, improving food intake and nutrition, coping with interpersonal difficulties, developing novel styles of thinking, learning new modalities of regulating emotions, and developing a sense of identity that is separate from anorexia nervosa.

Moreover, further contents aiming to cover the EDs continuum are focused on the interpersonal sensitivity model which posits that experiences of criticism or rejection by others may render individuals with EDs sensitive to negative feedback, social isolation, and difficulties in regulating emotions [23]. In this context, ED difficulties will not be addressed through concerns of weight gain or loss. With the interpersonal model of BED [24], maladaptive eating habits are consistently viewed as associated with individual’s interpersonal distress, which in turn triggers negative emotions that can elicit maladaptive behavioral strategies, such as the binge-eating episode in BN and BED or compensatory behavior in BN and AN.

2.2. Aims of the Project

Following the theoretical background, the “#How can we help you?” IG profile aims to inform people with eating difficulties about risk, consequences, and eating disorder symptoms. It directs those suffering with self-reported EDs to clinical care, and provides information about eating concerns and related constructs by increasing illness awareness. The contents are based on narratives from people who have recovered from an ED, importance and ability to change, and nutrition management. Through this channel, we offer prompt support, responding to questions and doubts of those reporting ED difficulties. Therefore, the project “#How can we help you?” aims (1) to direct sufferers of self-reported eating disorders either with an effective diagnosis of ED, or initial eating dysfunction, towards clinical care, avoiding an exacerbation of symptoms or the definition of a chronical condition; (2) to provide information to users about eating disorders and symptom recognition, risk and maintenance factors, and how all areas of life may be influenced by the illness; and (3) to emphasize the importance of change and hope through the narratives of people who have recovered from an eating disorder.

3. Materials and Methods

3.1. Structure of the Instagram Profile

Through the Instagram profile, scientific contents related to eating disorders are published in the shape of posts, stories, or reels on a weekly basis. The proposed contents are written by PhD and Masters students of the team and then supervised by the clinical psychologists of the group (GA, GL, and SG). During the weekly supervision, the contents are examined to guarantee adherence and congruence with the literature in the field. Several topics are tackled and basically, they are related to three main areas connected to EDs: (1) positive thinking, (2) the importance of change (motivation), and (3) the maintenance factors of an ED. These macro areas are conveyed through three different icons (which are represented in Figure 1) aimed at anticipating the contents published. The main idea behind the definition of these icons is to try to organize the knowledge and learning provided. The purpose was to use the social language of young people, offering vicarious learning thanks to the evidence-based contents shared.

The first icon represents the positive thinking development through specific posts related to negative affect management and the importance of recognizing positive emotions; with this icon, the tool of “Instagram directs” with peer recovery profiles (IG profile of people recovering from an ED) has the aim of contributing to the user’s management of EDs, thanks to one’s own personal experience of the illness. The role of influencers that have experienced the illness in the past and reached a full recovery helps to instill hope and positivity. To hear the voices and experiences of peers that have undergone similar experiences can increase the feeling of understanding and support.

Peer support is one of the five main processes of recovery, alongside hope or optimism about the future and confidence in change, development of identity, having a sense of meaning in life, and experiencing empowerment [25]. Connecting with others with similar problems, sharing skills, and choosing recovery goals are key processes within this approach. The use of peer support is also advocated by self-determination theory [26] which posits that autonomy, self-competence, and relatedness to others are the bases that drive internal motivation and growth. Research into eating disorders has linked perceived autonomy support from parents, staff, and treatment peers to a greater motivation to change [27] and greater self-compassion [28], whereas low self-efficacy impairs treatment outcomes.

Following the expertise procured by the UK team, we wanted to develop an Instagram library of recorded personal recovery narratives (derived from interviews with influencers who had overcome ED illness) that describe successful steps towards change and the nonlinear process of recovery. Previous test trials have demonstrated that watching similar videos “vodcasts” on supporting eating or improving a positive mood may lead to increases in test meal consumption and reduction in anxiety and negative thoughts [29,30]. Feedback from participants, carers, and professionals has led to improvements in these tools.

The second icon aims to promote the importance of change and of seeking help through posts, stories, and reels aimed at direct individuals with potential eating difficulties to start a treatment in a specialized context, improving trust and engagement with the treatment. One of our main ideas was to contribute to discovering our own reasons for change: Why is it important for me to change? Making this step from external to internal motivation is facilitated through the construct of a motivational interviewing framework [21] which is aimed at solving the ambivalence regarding change and enhancing empowerment and awareness in a dynamic process, in which the pros and cons are expressed. The Prochaska and DiClemente Stages of Change model [31] provides a progression from an initial pre-contemplative stage, where the individual is not considering change; to a contemplative stage, where the individual is actively ambivalent about change; to preparation, where the individual begins to plan change. Successful progression through these stages leads to action, where the necessary steps to achieve change are undertaken. In this context, relapse can play a central role in learning about what to improve and which mechanism to foster further.

Finally, with the third icon, we provide useful information about the illness and how to tackle it by interviewing experts (such as dietitians, psychotherapists, personal trainers, family members) and implementing new evidence-based strategies about the illness and its functioning. Posts, stories, and reels on nutrition, rigid thoughts, self-criticism attitudes, and body image and its acceptance are developed.

3.2. Participants

On the 11th of April 2022, we activated the #How can we help you? Instagram profile and in a few weeks, we reached more than 1000 users following our profile. They can watch, like, and comment on any media posted on our profile. To date, based on the sociodemographic data of followers provided by Instagram tools for the 1324 Instagram followers of DicciComeAiutarti, 89.9% are women and the majority are adolescents and young adults (see

Table 1. Demographic Characteristics Provided by Instagram Tools of #How Can We Help You? Instagram Profile Users (N = 1324).

Demographic Characteristics	%
Sex
Male	10.1
Female	89.9
Age
13–17	5.5
18–24	33.6
25–34	37.2
35–44	11.4
45–54	7.1
55–64	3.6
65+	1.2

). They mostly report dysfunctional behavior related to anorexia nervosa, bulimia nervosa, and binge-eating disorders.

Among our users, we include people currently sent to ED centers across Italy and those who have received an effective diagnosis of ED in their past or individuals who have self-reported their eating difficulties but have not yet seen a clinician or a medical professional. We have also collected feedback from carers with a loved one affected by an eating disorder and experts in the field such as psychologists, dieticians, sport doctors, and researchers interested in studying in greater depth new elements/approaches about eating disorders and their interventions.

4. Results

4.1. Followers’ Use and Feedback Related to the Shared Contents

Table 2. Users Feedback About Shared Contents in #How Can We Help You? Instagram Profile.

Categories	Like	Comments	Saved	DM
	124	8	17	8
	164	15	36	21
	124	10	32	9

Note: Like = people who like the content of the post; Comments = people who want to write their thoughts to us about the content; Saved = people who saved the post to read it again in the future; DM = direct messages.

shows a summary of contents that the followers of the “#How can we help you?” IG profile appreciated/used the most and which they considered most attractive and valuable for their path to recovery. Therefore, we offer a brief overview of which contents are visited the most through “likes”, comments, saved contents, and DMs. Finally, we have also collected feedback on the IG profile. As shown in Table 2, we have reported the interactions provided by followers based on the number of “likes”, comments, saved contents, and DMs over the three categories/icons of content proposed in our account. It seems that the contents related to the second icon received more likes, comments, saved messages, and DMs than those related to positive thinking and ED maintenance symptom contents. On the other hand, the followers’ interactions that received less likes, comments, saved messages, and DMs are those related to the first icon, based on the positive thinking contents. Regarding the most frequent feedback received by users on the utility of the profile, the majority reported: (1) appreciation for the IG profile definition (e.g., “Thank you very much, you are one of the pages that is helping me more”), (2) awareness increase (e.g., “Wonderful! Raising awareness is so important to show those who suffer that they are not alone”), and (3) instilling hope (e.g., “Thank you for caring for this, every little action is crucial and pages that fight misinformation are a source of hope!”).

4.2. Followers’ Needs Related to the Shared Contents

Regarding the second aim of this study, in

Table 3. Private Messages Sent by #How Can We Help You? Instagram Profile Users.

Categories	Excerpted Examples
Need for information on ED risk factors	“Hi, sorry for the inconvenience, I don’t even know if I will ever receive an answer but I’ll try anyway... I’ve been trying to figure out if I suffer from an eating disorder but I can’t find “cases” like mine on the internet. I’m not anorexic and I don’t suffer from bulimia. I simply, often skip meals because it’s as if I “don’t feel like” eating. This situation has been going on for years and maybe for this reason I can’t gain a few kilos. I often skip dinners or lunches or both. Is it a disorder? When I eat I tend to divide everything into very small pieces and I eat very calmly. I don’t know if it’s just a psychological factor or there’s something underneath. if you could give me an “explanation” I would be grateful…”
Need for information on the various ED treatments	“I suffer from anorexia nervosa but I have always undertaken exclusively psychotherapy. Now my underweight is considerable and my parents have decided to send me to a public hospital for checkups. What kind of weight or physical condition could let me risk the hospitalization?”
Information on the public ED services in one’s own city	“Hi, I’m S. and I’ve been suffering from ED for 9 years, first anorexia and then bulimia. I’m desperate, I don’t know who to contact anymore. I don’t have enough money for a private psychotherapist. Could you help me to find a public service with an acceptable waiting list in the Lombardia region? I’m willing to go anywhere as long as it’s a very qualified center because I’ve already tried villa Margherita in Vicenza and the CDCA in Gussago but they didn’t work and hospitalizations were very short. I would need a long hospitalization. Possibly whose acceptance shouldn’t go through the CPS because my psychiatrist doesn’t want to send me to any services (I don’t know why). I feel terrible, I keep bingeing and I can’t take it anymore. Thanks for your help.”
Self-disclosure need	“I fell ill with binge-eating disorder when I was six years old. I was a fat child who had to follow a diet I did not understand and I lived in a complicated family. To manifest my discomfort, I started stealing food to attract their attention. At the age of 13 I weighed 113 kg and every effort to lose weight failed because I self-sabotaged. I ate anything and everything, even in public toilets, because eating was my only consolation. Ten years ago, I woke up. I accepted that I had a problem and that the only person who could save my life was myself. I was able to take care of myself, as if I had been a child. I was my own mother, teacher and motivator. I struggled to change my lifestyle but then I felt the joy of a soul breaking free from its chains. Don’t waste time, because life free from an eating disorder is colourful and not black and white, as you see it now.”
Need for information on family relationship management	“Hi, I just stumbled across your page and I hope it can help me My diagnosis is anorexia nervosa and depression, I’ve reached the moment when at least I can say it, and I have many doubts, perplexities and questions regarding the recovery process. First of all, even if it is the least “important” thing, I would like to find a book that can help me finding the necessary strength. I’m looking for something that speaks of the disease not in an exaggeratedly crude way but that makes me understand the seriousness and the fact that it is possible to get out of it. I wish it could be also suitable for explaining certain “problems” that I have in my head with my family and to make myself understood by mom, dad and the boyfriend. All these thoughts manage to take on a more sensible “form” when I talk about them with the psychiatrist or dietitian of the center but unfortunately they are not omnipresent. I hope I was clear enough and above all I hope I’m not asking too much. I don’t know, I found your page and I jumped in, I said to myself “it’s time to take matters into our own hands…”
Need for information on ways to support a loved one affected by ED	“Unfortunately, my daughter suffers from an ED. I still don’t know what eating disorder it is. He started the psychotherapy 5 years ago for other problems related to depression but has always kept this aspect hidden. He is now 22 years old and has reached maturity and awareness of his problem, he has finally decided to face it. I wanted to underline how difficult it is for the whole family when one member suffers from ED.”
Need for help	“I think I suffer from binge-eating disorder because, due to strong emotional stress, I tend to eat until I vomit and then I feel psychological distress. I have tried talking about it with those close to me but they tell me that I am just ‘addicted to food and it’s no big deal’, while I can’t even look at myself in the mirror. Who can I contact?”

, a summary of the needs expressed by #How can we help you? followers is reported. The users’ needs were collected through the private messages received. Our aim was to understand whether the #How can we help you? profile was reaching the intended audience by responding to the several needs expressed by followers. Therefore, we collected private messages from visitors to understand their needs. To select DMs, we reported some examples of the most frequent messages received to identify the users’ needs. Regarding this aim, the private messages selected are the result of qualitative data collection where the most frequent messages were used as examples of user requests. Therefore, through the messages collected, categories of meaning were defined; GA, AT, MS, FV, and CDP familiarized themselves with the data collected through repeated readings and sorted the codes into categories of meaning. The categories were then revised for coherence and distinctiveness and were defined and named [32]. Subsequent meetings under the clinical supervision of GL and SG were held to reach a consensus on discrepant narratives. Seven categories, describing the main needs reported by followers, were identified. In Table 3, the needs categories and an excerpted example for each are reported.

5. Discussion

In the current paper, we have introduced the development of an Instagram profile, #Dicci come aiutarti, aimed at helping people who report eating difficulties. The findings of this preliminary study underlined opinions and followers’ needs through the feedback and interactions of the users in the contents posted and the activity and visibility resulting from the IG account. The preliminary textual analysis performed demonstrated an urgent need for information from people with self-reported EDs. Information about eating disorders, their recognition, diagnosis preconditions, and treatments offered by national mental health services represent an urgent need for people in the community. As reported in our findings, people with self-reported abnormal eating functioning seem to experience a sense of confusion and lack of knowledge and coping strategies about ED symptoms, consequences, prognosis, and illness management. Tackling symptoms of the illness and trying to manage them with a loved one still represents an obstacle for the treatment. It is likely that these concerns and symptoms deteriorated during the COVID-19 pandemic, due to the disruption of treatment services [33,34,35]. A previous study that examined the linguistic interaction of members in an eating disorder-related community on Facebook during the pandemic showed that individuals with disordered eating behavior reported feelings of anxiety, social isolation, and negative emotions [36]. However, involvement in an online community or IG page may enable participants to share emotions and develop self-compassion in trying to reduce anxiety.

Therefore, the promotion of awareness, support, and useful strategies for communicating and trying to deal with the illness seem to be mandatory in limiting the negative effects of an exacerbation of the illness. Since the onset of the COVID-19 outbreak, there has been an appeal to make psychological and clinical interventions more widely available and accessible, considering the disruption experienced by mental health care patients [4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34]. The #Dicci come aiutarti profile is trying to respond to these needs by offering validated and scientific evidence on EDs in the form of posted contents, explaining how to cope with symptoms and illness management, thanks to the role played by influencers that have recovered from the illness and offered their past experiences as a message of hope and how to start thinking about change by establishing useful contact with services and listening to valuable tips from experts (reel from experts). So far, account activity has been aligned with the goals of the self-help treatments, deeming that these interventions, based on the use of materials (such as books, workbooks and videoclips), wish to empower patients through information and skills for coping with the illness. The effectiveness of self-help has demonstrated that it is possible to provide those suffering with eating difficulties with access to treatment, limiting the risk of chronicity and drop-out, and shortening the long waiting lists. Thus, therapeutic contact and alliance might be fostered, ensuring continued social support during recovery [37,38] and offering a beneficial alternative to pro-illness communities. Today, several psychological therapies for ED already include materials for patients to use on their own, in addition to standard treatments.

This project represents a first step in a wider clinical trial and it seems to represent a sound base for formalizing and better defining the type of support provided by developing a psychoeducational program which aims to integrate professional help with the provision of peer-support. Furthermore, this program will be validated through a research protocol aiming to evaluate its feasibility and user satisfaction. Our research aim is to find empirical evidence (through both a pilot study and a randomized clinical trial) for those suffering from an ED (assessed in regards to their eating difficulties), compared with other users with EDs, who are enrolled in other social forum groups in the eating disorder field (such as Facebook forum, Telegram groups, etc.). A further key advantage of the research design is that we would like to examine how feasible and acceptable this intervention is in routine treatment settings. Finally, this project will be part of a larger clinical trial called to investigate the clinical benefits of a mobile application for EDs, focused on fostering motivation towards change and support and overcoming eating problems and clinical obstacles, thanks to the experiences of others who have recovered from the illness. The promotion of awareness, motivation, and social support through available online guidance, facilitated by those with past difficulties with EDs, may become a useful clinical tool in enhancing one’s personal path to recovery.