Navigating an instagram community for eating disorder recovery: a qualitative study of users’ motivation and confidence to change

Abstract

Background

Treatment engagement and importance to change remain significant challenges that impact treatment delivery in people with eating disorders. Feelings of shame, stigma, ambivalence and lack of motivation are prominent barriers affecting their engagement with treatment. There is recent evidence that using online recovery communities is beneficial in reaching individuals who do not have access to traditional services. The present study has been designed to investigate the perceived significance and level of confidence regarding change exhibited by users of a recovery Instagram community who suffer from an eating disorder.

Methods

A mixed methods study surveyed 205 women (mean age = 23.14 years) from an Instragram recovery community. Thematic qualitative analysis was used to evaluate themes reported in response to open-ended questions about participants’ meaning and confidence to change.

Results

Participants reported higher scores for importance to change than for ability to change. Seven themes were interpreted from the qualitative data (i.e. Emotional Needs, Management illness factors, External Motivation, Negative Sel-beliefs, Internal and External Resources, and Characteristics of eating disorders).

Conclusions

The results of this study highlight that although participants report the importance of change, there are some concerns about their ability to change, related to their negative self-beliefs and ambivalence about change. The findings also suggest that Instragram recovery communities are promising platforms for improving help-seeking among users with eating disorders.

Background

Eating disorders (EDs), including anorexia nervosa (AN), bulimia nervosa (BN), binge eating disorder (BED), and other atypical conditions are complex psychiatric illness characterized by severe disturbances in eating behaviors, thoughts, and emotions [1]. These disorders are associated with significant physical complications, psychological suffering, and impaired social functioning [2, 3]. Evidence-based clinical guidelines agree that patients with EDs should be treated with psychological therapies [4] such as cognitive behavioral therapy, family therapy, or more structured specialized treatments such as Maudsley model of anorexia treatment [5, 6]. Among evidence-based psychological treatments, enhanced cognitive behavioral therapy (CBT-E) has demonstrated substantial effectiveness, particularly for individuals with BN and BED [5]. Recent studies report that approximately 65% of patients undergoing CBT-E achieve sustained full remission [7, 8].

Nevertheless, treatment engagement and importance to change remain significant challenges that can significantly impact treatment outcomes [9], especially in individuals with AN who often experience marked ambivalence toward recovery [10, 11]. Motivation to change has been recognized as a crucial predictor of treatment adherence and outcome [12–14]. Individuals may simultaneously desire recovery and adhere to their disorder, which may provide perceived benefits such as control, emotional regulation, or social validation through weight loss [11].

Ambivalence is often sustained by cognitive and personality traits such as perfectionism, obsessive-compulsiveness, and rigid thinking [15], as well as negatively reinforcing behaviors like dietary restriction or binge-purge cycles [16]. These processes can be conceptualized through theoretical frameworks such as the Transtheoretical Model of Change [17, 18] and the Cognitive-Interpersonal Maintenance Model [19], which underscore the role of individual and relational dynamics in the persistence of EDs and the need for tailored interventions. The importance of confidence to change (i.e. the expectation people have about their ability to make changes) has also been highlighted as a prognostic factor in ED [20] given that individuals with high levels of confidence are more likely to persevere in challenging situations such as relapses [21].

In light of these challenges, growing research attention has been directed toward motivational interventions, such as Motivational Interviewing (MI) and Motivational Enhancement Therapy (MET). A recent systematic review and meta-analysis by Linardon et al. [22] showed that these interventions can significantly improve readiness to change and contribute to improvements in both ED psychopathology and body mass index. Moreover, Denison-Day et al. [23] conducted a systematic review assessing the effectiveness of clinical interventions explicitly aimed at increasing motivation among ED patients. While motivational levels tended to improve across all treatment modalities, the review highlighted that motivational interventions were particularly effective compared to low-intensity treatments, although their added value over standard therapies remains uncertain. As demonstrated in previous qualitative research, factors influencing motivation for recovery are shaped by the interplay of personal feelings and beliefs, future orientation, and relational dynamics [24]. This suggests the importance of both internal experiences (e.g., emotional well-being) and interpersonal relationships with people influential in their recovery process. This is in accordance with the principles of Self-Determination Theory (SDT), which conceptualizes motivation as a continuum ranging from behaviors that are externally regulated to those that are intrinsically driven [25–27]. The introduction of these perspectives provides a useful framework for interpreting how different motivational sources may emerge in individuals engaging with online recovery communities.

It is important to acknowledge that a significant proportion of individuals diagnosed with eating disorders do not access formal treatment services [28]. Barriers such as stigma, geographical limitations, financial obstacles, and a lack of specialized services contribute to this treatment gap [29–31]. Patients reported that shame, stigma and guilt as well as ambivalence and lack of motivation were the most prominent barriers affecting their engagement with treatment [32]. It is worth noting that people with subthreshold or atypical ED symptoms may have limited insight into their condition and poor importance to change, with a high risk of chronicity and poorer long-term outcomes [29–31].

In recent years, online communities for ED recovery have emerged as a prominent platform for individuals with EDs to seek information and support related to their struggles and recovery. Studies investigating the relationship between social media use and mental health have consistently shown that social media can have a negative impact on the development of disordered eating behaviors [33, 34]. This is exemplified by the exposure of individuals to online proEDs content [35, 36]. Nevertheless, the potential of online recovery communities present on social media platforms such as Instagram and TikTok remains an area that has only recently been explored [37, 38]. Research has suggested that these pro-recovery platforms can offer positive support for people with ED as they provide safe spaces for discussion and peer support [39–41]. More specifically, it was suggested that the use of online recovery communities could be beneficial in reaching individuals with atypical disordered eating or subthreshold symptoms who do not have access to traditional services or are not ready to seek professional help [37].

To date, it remains unclear which individuals with disordered eating turn to online pro-recovery communities rather than receiving ED treatment, and what their motivations for change might be. Given the importance of stages of change and confidence in improving ED symptoms [9, 20], the current study aims to explore users’ importance and confidence to change from an ED recovery Instagram (IG) community using a qualitative approach. Understanding community users’ stages of change and treatment-seeking attitudes is essential for designing tailored and accessible interventions [14] and informing strategies for personalized and accessible digital interventions that promote engagement and recovery within online communities [39, 40].

Methods

Participants and procedures

Participants were recruited from the Italian #How can we help you?” IG community in the first six months after going live. All individuals who contacted the Instagram page to inquire about treatment options for eating disorders were invited to participate in the study via a link to an online questionnaire. Participants who identified with any of the following gender conditions were included in the study: cisgender, transgender, or non-binary. In order to be included in the study, participants had to meet the following inclusion criteria: (a) being older than 18 years, (b) following the #How Can We Help You? Instagram page, (c) having contacted the page to inquire about eating disorders treatment options.

During the recruitment phase of the study, 378 individuals contacted the Instagram page to request information about possible treatment for eating disorders, of whom 54.23% agreed to participate in the study and completed the questionnaire. No missing responses were observed among participants. The final study sample consisted of 205 women (mean age = 23.14 ± 5.85 years). During the recruitment phase, no male or non-binary participants volunteered for inclusion in the study. All procedures contributing to this work complied with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. The protocol of the present study was approved by the Ethics Committee of the University of Palermo. Written informed consent was obtained from all participants.

#How can we help you?

“#How Can We Help You?: An Instagram-Based Online Self-Help for Eating Disorders,” is a ED recovery Instagram community [42] that aims to provide digital support to individuals struggling within EDs. Various components of support are used, such as psychoeducational posts, interactive stories, and Q&A chat sessions which are designed to actively engage participants and provide practical information and emotional support. Content is curated by mental health professionals, and integrates evidence-based strategies such as emotion regulation, coping mechanisms, and mindfulness techniques. Moreover, the project provides IG directs delivered by content creators – individuals with a significant online presence who have lived experience of eating disorders. As well as helping to spread educational and supportive messages through their profiles, these content creators engage directly with users through published interviews on Instagram (Direct), facilitated by our clinical research team.

Scientific content related to eating disorders is published weekly in the form of posts, stories or reels and relates to three macro areas: (1) positive thinking, (2) change as an opportunity, which promotes the importance of change (motivation), and (3) the maintenance factors of an ED.

Measures

Users were invited to complete an online assessment that included a sociodemographic survey and self-report measures.

The online survey consisted of the following questionnaires:

Demographic and clinical survey, to collect information on age, geographical area, years of education, employment and social status, self-diagnosis of EDs, duration of illness, time of onset of illness, self-reported body mass index (BMI).

The Eating Disorder Examination Questionnaire (EDE-Q) [43, 44] is a 28-item self-report questionnaire to assess attitudes and behaviors associated with eating disorders. All items are rated on a 0–6 Likert scale (with higher scores reflecting greater severity). The measure comprises a Global scale and four subscales (Restraint, Eating Concern, Weight Concern, and Shape Concern), with higher scores indicate higher symptomatology. In the present study, the internal consistency of all subscales and of the score good (ω ranges: 0.767-0.881).

The Depression, Anxiety and Stress Scale (DASS-21) [45, 46] is a 21-item self-report measure of patients’ psychological distress over the past 7 days. Items are scored on a four-point Likert scale. It includes three subscales (i.e., anxiety, depression, and stress). In the present study, the internal consistency of all subscales and of the score were good (ω ranges: 0.895-0.922).

The Body Appreciation Scale (BAS-2) [47, 48] is a 12-item self-report measure that assess body appreciation. All items are scored on a 5-point Likert scale; higher scores reflect higher body appreciation. In this study, the internal consistency was excellent (ω = 0.934).

Importance and confidence in own ability to change were assessed using two ad hoc Likert-type items, scored from 1 (“not important at all” / “not confident at all”) to 10 (“extremely important” / “extremely confident in my ability to change”). Higher scores suggest greater importance and ability to change. In addition, the perceived importance and ability for change were also investigated through two open-ended questions, to which participants were asked to respond in as much detail and as comprehensively as possible. The two open-ended questions were: (1) “What are the motivations, needs, and wishes that lead you to change?” and (2) “How much do you feel that you can change? What are your reasons for indicating this score?”. These items have already been used in several RCT studies investigating motivation levels in eating disorders [16, 23].

Data analysis

Data from the questionnaires were analysed using descriptive statistics to explore the characteristics of the sample.

Qualitative data resulted from the users’ responses to the two open-ended questions were analysed using inductive data-driven thematic analysis [49] with a realistic approach to allow a more direct focus on the users’ perspectives. The use of an inductive approach was driven by the exploratory nature of the study. The analysis was carried out by two clinical psychologists experienced in thematic analysis and EDs (G.A. & A.T.) using the following procedure.

Users’ responses were first grouped into two main categories, each corresponding to one of the open-ended questions (i.e. importance to change and ability to change). In addition, a thematic analysis of the responses to the motivation question was conducted (i.e., “What are the motivations, needs, and wishes that lead you to change?“). This analysis was conducted across the entire sample, thus forming the first cluster of the analysis. Thematic analysis was also employed to code participants’ responses to the second open-ended question, the purpose of which was to explore the motivations behind participants’ confidence in their ability to recover from ED (“How much do you feel that you can change?“). Participants’ responses were initially divided into two groups: the ‘high ability to change group’ (composed of individuals who rated their ability to change as ≥ 5 on the 10-point Likert scale) and the ‘low ability to change group’ (composed of individuals who rated their ability to change as less than 5). The two aforementioned groups constituted the second and third clusters, respectively. Subsequent to this procedure, the responses within the three resulting clusters were analysed according to the thematic analysis procedure. First, the psychologists immersed themselves in the data, reading and re-reading users’ responses and using notes to capture emerging insights. Next, the text was divided into units of meaning, identified as the smallest parts that convey a single theme. Each segment was then given a code that reflected its core meaning while remaining faithful to the participants’ own expressions. The codes were then compared and organized into clusters, based on their similarities and contrasts, which form our subcategories. These subcategories were then further explored and grouped into broader categories according to their similarities and differences. This iterative approach of constant comparison at different levels of abstraction facilitated the development of a category hierarchy, which continued until thematic saturation was achieved.

In order to increase the methodological integrity and credibility of the study throughout the process, each of the primary coders performed the analysis independently and was regularly supervised by two experts (G.L.C. & S.G.). During these meetings, any discrepancies between coders were discussed as a group to reach agreement between coders using a consensus-oriented procedure [50].

In addition, possible expectations and biases of the coders regarding the emerging findings were critically examined with the supervisors, through self-reflective discussions, to ensure that the analysis remained adequately grounded in the data.

Results

The final sample consisted of by 205 women (M_age = 23.14 ± 5.85 years), of whom 46.8% (n = 96) reported a self-diagnosis of anorexia nervosa (M_BMI=16.53 ± 2.64), 13.2% (n = 27) of bulimia nervosa (M_BMI=22.37 ± 3.06) and 16.6% (n = 34) of binge eating disorder (M_BMI=24.53 ± 6.41). The remaining participants (n = 48, 23.4%; M_BMI=19.27 ± 5.09) reported symptomatology consistent with eating disorders, without reference to a specific diagnosis. Participants reported a disease duration ranging from 1 to 16 years. The majority of participants are students (n = 137, 66.8%) and live with their parents (n = 144, 70.2%). The 81.95% of the sample (n = 168) exceeded the clinical cut-off for the EDE-Q, whereas 18.5% were classified as subthreshold eating disorders, according to the EDE-Q cut-off scores. According to DASS-21 scores, stress levels were mild in 49.27% (n = 101) and moderate in 28.78% (n = 59). Anxiety levels were mild in 18.05% (n = 37), moderate in 23.41% (n = 48), severe in 23.41% (n = 48) and extremely severe in 7.32% (n = 15). Finally, the depression scores were mild in 15.12% (n = 31), moderate in 43.90% (n = 90) and severe in 15.12% (n = 31). The mean scores for importance of change were 7.069 (SD = 2.54) and for ability to change were 5.396 (SD = 2.30). Descriptive statistics are reported in Table 1.

Table 1.

Descriptive statistics of the sample (N = 205)

Title 1	M (SD)	n (%)
Age	23.14 (5.846)
BMI	20.941 (4.857)
Occupation
Student		137 (66.8)
Part-time employed		18 (8.8)
Full-time employed		27 (13.2)
Unemployed		10 (4.9)
Other		13 (6.3)
Household composition
Alone		14 (6.8)
Parents		144 (70.2)
Partner		27 (13.2)
Roommates/Friends		14 (6.8)
Other		6 (2.9)
Self-reported diagnosis
Anorexia Nervosa		96 (46.8)
Bulimia Nervosa		27 (13.2)
Binge-eating disorder		34 (16.6)
Other EDs symptoms		48 (23.4)
Duration of illness (years)	5.481 (3.927)
EDE-Q Restraint	3.792 (1.737)
EDE-Q Eating Concern	3.752 (1.404)
EDE-Q Shape Concern	4.892 (1.277)
EDE-Q Weight Concern	4.538 (1.407)
EDE-Q Total Score	4.243 (1.291)
DASS-21 Stress	14.61 (5.062)
DASS-21 Anxiety	10.58 (5.964)
DASS-21 Depression	13.52 (5.998)
BAS-2	18.78 (7.540)
MR Importance to change	7.069 (2.536)
MR Ability to change	5.396 (2.301)

^{Note: EDE−Q: Eating Disorder Examination−Questionnaire. DASS−21: Depression, Anxiety and Stress Scale. BAS−2: Body Appreciation Scale−2. MR: Motivational Ruler}

The results of the thematic analysis yielded a final system consisting of seven main themes, grouped into three clusters, which were derived from 18 sub-themes. These 18 sub-themes were in turn derived from a total of 327 units of meaning. A full description of the themes and sub-themes is showed in Table 2.

Table 2.

Results of thematic analysis of users’ answers of the two open-ended questions

Clusters	Main themes	Sub-themes	Example
Importance to change (N = 205)	Emotional needs (N = 102)	Psychological well-being	Wanting to start living again and be as happy as I was before ED
		Avoidance of negative thoughts and emotions	I can no longer live like this. I want to stop feeling like a complete failure.
		Achievement of future planning goals	Because I have understood that there is more to life than the disease. I want to recover so that I can set new goals, have a family and achieve personal fulfilment.
	Coping with illness maintenance factors (N = 71)	Food anxiety	I am tired and exhausted of this life focused only on the eating disorder, I am tired of thinking only about eating and compensating and having anxiety about all the features related to food.
		Body acceptance	Wearing the clothes I want without worrying about my weight.
		Self-criticism	I want to live without thinking that everything I do is wrong and that I am incapable of doing anything.
	External motivation (N = 32)	Concern for family carers	To stop worrying my family and hearing that I cause them pain.
		Improve relationships	To be more relaxed about dating and meeting new people without being afraid to show this side of me.
		Overcoming difficulties at work	I have to be a trustworthy adult, especially in relation to my job. I’m a teacher, I can’t show my pupils that I’m ill and have a difficult relationship with food.
Low ability to change (N = 98)	Negative self-beliefs (N = 59)	Inability to cope with change	These changes are too big for me, and I am quickly demoralized by the awareness of the size of this obstacle, because I know that I am too vulnerable.
		Impossibility of full recovery from EDs	I can never say I’m fully recovered, at the best I’m coping better, but I know the triggers will always be there to activate me for the rest of my life.
	EDs characteristics (N = 39)	Ambivalence toward the change	I think I have the ability to change, but I can’t really get into a perspective of real change for fear of getting out of a kind of “comfort zone” of situations related to my ED that are now an important part of my life.
		History of ED relapse	Because I’ve tried so many times and when I thought I was out of it, I always failed. Now I am sure that I can never change this situation.
High ability to change (N = 107)	Internal resources (N = 61)	Confidence in own psychological abilities	I believe in myself all the way through to this day and I know I can win this battle too.
		Determination to achieve set goals	I know that when I set a goal, I will do my best to achieve it, even if it takes a lot of time and efforts.
	External resources (N = 46)	Psychological therapy	I trust that if I start a psychological therapy I will be able to fully recover from EDs.
		Social support	I am surrounded by people who love me and encourage me to change, and I know I can lean on them if I need to, so I think I can do it.

The seven main themes are illustrated in the following paragraphs, including some excerpts from participants’ responses.

Cluster 1: Importance to change

The first open-ended question asked users what motivations, feelings and desires drive individuals to try to recover from eating disorders. Participants’ responses formed the first cluster and were classified into three main themes according to the primary motivation articulated by respondents. These main themes are: (1) Emotional needs; (2) Coping with illness factors; (3) External motivation.

Main theme 1: Emotional needs

This main theme encompasses the responses of participants who identified emotional needs as the primary motivation for seeking treatment for ED. Specifically, many participants expressed the desire to “live a normal life”, which is used to describe a state of psychological well-being and the establishment of positive feelings about oneself, as reported by this participant: “I want to live my life in peace and learn to love myself again” (P11).

This main theme also includes the desire to reduce the negative emotions and feelings often triggered by EDs, such as shame, anxiety, low self-esteem and feelings of inadequacy. One participant stated: “I am not happy and satisfied with my life and I feel exhausted from my anxiety and negative thoughts that harm me” (P48).

Finally, the desire to re-establish future-oriented thinking and life planning was also mentioned as a motivating factor. This desire indicates the possibility of imagining personal and relational goals without the limitations imposed by ED. “The desire to try new things, to rediscover myself, to live without worrying about numbers, weight, and measurements, and to try to realize the dreams I had as a child.” (P164).

Main theme 2: Coping with illness factors

The second main theme emerges from the statements made by participants who identified the ability to better manage the so-called ‘disease factors’ typical of ED as the primary impetus for change. In particular, managing anxiety around eating and socialising seems to have been identified as very important: “I want to be able to dance in peace, enjoy my family and friends and all meals without having to turn down invitations for fear of what will be served” (P43).

Similarly, the desire to develop a positive body image and body acceptance was highlighted as one of the main motivations for change: “I want to feel comfortable with my body again and see myself as attractive as I used to” (P152).

Moreover, many participants also expressed a desire to reduce the self-criticism and perfectionism that often underlie ED: “I want a life that is not controlled by food, the freedom not to lose my mind if I have to change plans” (P71).

Main theme 3: External motivation

The third main theme emerges from the statements of participants for whom the importance of change is not related to their own internal aspects, but rather to external factors and/or interpersonal relationships.

One of the main motivations for change reported by these participants relates to the desire to no longer be perceived as worrying about their health by their caregivers (parents and/or partners), thus allowing them a greater psychological well-being. “I want to make my family happy, without destroying myself and hurting them all the time” (P22).

Consequently, the desire to have more functional relationships and to improve the ability to care for loved ones (such as potential partners and/or children) was also identified as a key motivator for change. “I would like to be able to start a family and have a child without fear of harming them” (P97).

Finally, the possibility of achieving professional fulfilment without being hindered by the eating disorder is also identified by some participants as an important factor for change: “I want to be able to finish my medical studies and become a good doctor” (P188).

Cluster 2: Low ability to change

The second open-ended question explored the motivations behind participants’ confidence in their ability to recover from ED. Of the 205 participants who responded to this question, 98 expressed low confidence in their ability to change (replies < 5 on a 1–10 Likert scale) and formed the second cluster. Based on the motivations given by the participants for their low perception of ability to change, two main themes emerged: (4) Negative self-beliefs and (5) ED characteristics.

Main theme 4: Negative self-beliefs

The fourth main theme illustrates the responses of participants who feel unable to recover from an eating disorder because they believe they lack the essential psychological skills, qualities and characteristics to engage in the recovery process. In particular, some participants stated that they were unable to see themselves as individuals capable of achieving psychological well-being, while others expressed a lack of self-efficacy, feeling too weak and easily demoralized. These beliefs lead to a self-image of being unable to change. “Although I want to live a normal life, I think I am too weak to really change things” (P69).

Furthermore, many participants expressed the belief that eating disorders are a condition from which complete recovery is impossible, requiring lifelong management and constant fear of relapse. This belief is one of the main motivations identified as contributing to the perceived low ability to change. “I have improved a lot so far, but I don’t think I can improve any more. I will always be afraid of relapsing at any moment” (P14).

Main theme 5: ED characteristics

The fifth main theme includes participants’ statements suggesting that their low capacity for change is closely related to characteristics typical of eating disorders.

Ambivalence towards the eating disorder was reported by the majority of participants, who stated that they were not ready to fully recover from the eating disorder, which is seen as a comfort zone—a well-known mechanism they fear leaving. “I am afraid of change. Bulimia is both a great enemy and a certainty. Letting go of a certainty for uncertainty is a distressing situation for someone who is a control freak” (P138).

Similarly, many participants stated that they did not perceive themselves as being able to change because of their personal history of relapse despite treatment, which led them to this belief. “Because I have often believed that I have recovered, only to relapse each time. It’s like being in an endless tunnel” (P72).

Clusters 3: High ability to change

107 participants reported moderate to high confidence in their ability to change (responses > 5 on a Likert scale of 1 to 10) and formed the third cluster. Based on the responses of these participants, two main themes emerged as influencing the perceived level of ability to change: (6) Internal resources and (7) External resources.

Main theme 6: Internal resources

The sixth main theme relates to participants’ statements suggesting that the high perceived ability to change is determined by strong self-confidence and belief in one’s own abilities and psychological skills, which enable them to engage effectively in the recovery process. “I believe in myself and I know I can get better again because it is something I really want, and I know I deserve it” (P56).

Furthermore, many participants stated that they relied on their own determination to achieve what they had set out to do, such as recovering from eating disorders. “I have overcome many challenges in my life and I am determined to fight and overcome my eating disorder” (P9).

Main theme 7: External resources

The final main theme consists of responses from participants who perceive a high capacity for change as facilitated by the presence of external resources. In particular, this theme includes statements about the importance of and trust in mental health professionals, who are seen as able to effectively support the patient during treatment and as a reliable resource to rely on. “I have a strong desire to change, and I believe that with the help of a psychologist I could do it” (P135).

In addition to health professionals, another important form of support is found in social relationships, including family members, partners, and friends, who, according to some participants, can help facilitate the change process. “I know I have the support of my parents, who have always been there for me and believe in me” (P79).

Discussion

This study aimed to explore the motivational landscape of individuals with self-reported eating disorder. By analyzing data from users who have engaged with an Instagram recovery community, this research focused on an increasingly visible yet understudied population: individuals who seek help outside traditional clinical settings.

The results of the thematic analysis explored user’s perceptions of the importance to change and identified a range of motivational sources. Emotional needs (e.g., desire for peace, hope, and self-acceptance), illness management goals (e.g., managing anxiety, reducing food-related distress), and external motivations (e.g., concern for loved ones or professional aspirations) emerged as key drivers of change. This set of results appears to reflect and build upon the findings from earlier qualitative studies [24], as we emphasized the dual role of negative self-beliefs and ambivalence as barriers, demonstrating how external resources (e.g., social support, professional guidance) can be transformed into internalized motivation for recovery, in accordance with the Self-Determination Theory [27]. From a clinical perspective, the current findings suggest that interventions could benefit from explicitly addressing the interplay between internal and external motives, while using supportive relationships as scaffolding to enhance self-determined change. Consequently, online platforms have the potential to broaden the range of available motivational interventions, thereby complementing conventional therapeutic approaches. This can be achieved by cultivating an online sense of belonging, normalizing recovery narratives, and promoting self-reflection on personal goals.

Overall, the present findings lend support to the notion that the cultivation of both internal and external motivations is of importance in order to promote change in eating disorders. Thematic analysis revealed that a significant proportion of participants described emotional needs (e.g., a desire for peace of mind, improved self-acceptance, and future planning) as pivotal internal motivations in their pursuit of change. Conversely, other participants highlighted the significance of external motivations, including relationships with family members, partners, and professional aspirations. This combination of factors suggests that effective recovery support should be characterized by the recognition and fostering of both dimensions of motivation in treatment approaches. In the present study, participants frequently reported feelings of inadequacy, low self-worth, and the desire to “love themselves again.” These findings are consistent with the well-established view of self-esteem deficits as core vulnerability and maintenance factors in EDs. As demonstrated in a number of clinical models [51], the link between low self-esteem and the development of disordered eating has been well-documented. Furthermore, recent research has confirmed that low self-esteem not only contributes to the onset of disordered eating but also predicts poorer treatment outcomes and a higher risk of relapse [51–53]. The findings of our study lend support to the clinical usefulness of treatments that address different components of low self-esteem and low confidence, such as the CBT-Based Self-Esteem Group, which could be delivered to individuals who seek online support for their ED [54].

The recent review by Robinson et al. [9] showed that both illness perception (i.e. the negative impact of an ED) and relationship with others, including friends, family and parents, are associated with importance to change in EDs. A sub-theme was identified within the external motivation to change, specifically pertaining to the concerns for family caregivers. This theme appears to reflect authentic empathy towards caregivers, as well as a method of mitigating relational tensions inherent within the systemic context of the disorder. As is well documented, the functioning of the family unit and the quality of the relationships between its members represent pivotal elements in the development and maintenance of eating disorders [55–58]. As demonstrated in previous qualitative studies, family members are perceived as both helpful and harmful [24]. The present findings suggest that individuals with ED report unpleasant feelings related to their relationship with a loved one, which could be fostered as a driver for change.

Given the importance to address the lack of motivation as a prominent barrier affecting engagement with treatment [9, 32], the current study explored how the perceived ability to change—distinct from its importance—varied across people with ED. Specifically, participants with low confidence often reported entrenched negative self-beliefs, repeated relapses, or emotional dependency on the ED symptoms as barriers to treatment. On the contrary, individuals with high confidence reported stronger internal determination and access to supportive relationships—factors long associated with positive treatment trajectories [22, 23].

From a clinical perspective, the findings of this study can provide preliminary implications for early-stage, flexible interventions for ED that validate ambivalence and seek to gradually enhance confidence and readiness to change. Despite the absence of a direct focus on therapeutic processes in the qualitative data, the participants’ reports of low self-efficacy and reliance on external resources suggest the potential benefits of approaches emphasizing a supportive therapeutic relationship, as highlighted in previous research on bonding alliance [59–61]. Consequently, interventions such as Motivational Interviewing [10] and Motivational Enhancement Therapy [17] can be regarded as promising strategies, although further research is required to ascertain their suitability for this population. It is also worthy of note that the present sample included a proportion of individuals who self-reported atypical or subthreshold symptoms. Their engagement with the Instagram recovery community indicates that such presentations may also be associated with motivational struggles and reliance on external support. It is therefore recommended that subthreshold and atypical cases be given greater consideration in future research and service provision. Despite the evidence of significant difficulties, these groups are often underrepresented [29–31].

An additional dimension that has emerged from the participants’ descriptions pertains to the identity-sustaining role of eating disorders. For a considerable number of individuals, this disorder is intricately intertwined with their self-concept, thereby engendering a sense of control and familiarity. This, in turn, can serve to render change a potentially threatening phenomenon. This mechanism has been comprehensively delineated in seminal clinical literature [47, 62], and it has been posited that it may contribute to the persistence of symptoms and reinforce ambivalence [9, 63, 64]. In the present study, several participants explicitly referred to their ED as a “certainty” or a “comfort zone”, thereby underscoring how recovery may be perceived as a loss of identity rather than a gain. However, recovery-oriented communities, such as the Instagram group investigated here, may help counteract this identity fusion by fostering new forms of group belonging that are centered on healthier norms, mutual support, and shared aspirations for change.

A major contribution of this study is its focus on help-seeking through social media platforms. Although there is research evidence that appearance-related social media use may trigger dysfunctional eating behaviors by perpetuating harmful idealized body ideals [33–35, 65], they can also be used as a tool to assist in recovery [38, 39]. For example, online recovery communities can offer positive support for people with eating disorders by providing safe spaces for discussion and peer support [37]. In the current study, we surveyed participants from a Instagram online community—run by professionals and structured to offer evidence-based psychoeducation and peer modeling and strengthen motivation [42]. Although some recent research has explored the ED recovery content and post created in social media such as Instagram and TiKTok [37, 38, 40], the current study is the first to explore individuals’ view of their importance to change. Although online recovery communities can provide valuable motivational support, formal clinical interventions remain essential to address the underlying maintenance factors of EDs and to foster self-efficacy in change processes [29, 32]. Timely access to specialized treatment is associated with improved outcomes and reduced chronicity [31]. Therefore, integrating digital psychoeducation via social media with accessible pathways to professional care may be a promising strategy to bridge the treatment gap and improve recovery trajectories [42, 66]. As indicated by the extant literature, delays in accessing care are still commonplace and associated with worse outcomes [29]. Nevertheless, online resources have the potential to offer psychoeducational scaffolding and motivational support during this period of waiting [67]. The role of online pro-recovery communities appears to be of particular significance in counterbalancing the deleterious impact of social media on eating concerns [33, 34], particularly with regard to exposure to pro-eating disorder websites [68, 69]. The present analysis of individuals’ motivation to effect change may assist in delineating an individualized picture of their needs, which can be addressed by the provision of beneficial online content on social media platforms.

Taken together, our findings highlighted the complexity of social media users’ ambivalence towards recovery. Consistent with previous evidence [11, 70], in the current study many participants expressed a simultaneous desire for change and an attachment to the disorder. This tension—seen across diagnostic groups—was particularly evident in those with AN, for whom ED may serve identity-affirming functions. However, similar patterns also emerged in individuals with BN and BED, particularly in relation to emotional regulation and body dissatisfaction. These dynamics are in line with the cognitive-interpersonal maintenance model which emphasizes the role of both individual traits (e.g., perfectionism, rigidity, impulsivity) and interpersonal factors in maintaining disordered eating behaviors [16, 71].

Several strengths characterize this study. First, it captures a real-world, underrepresented population that engages in non-traditional help-seeking, thus offering ecological validity. Second, the use of a widely accessible platform like Instagram increases the generalizability of findings to current digital behavior patterns, especially among younger demographics.

Nevertheless, several limitations must be acknowledged. The sample was composed exclusively of self-identified cisgender females, limiting the generalizability to other gender identities. It is interesting to note that no male participants consented to participate in the study. This observation may be indicative of gender disparities in help-seeking behaviors, with males being less inclined to engage with online recovery communities. It is recommended that future research explicitly examine male as well as all other gender identities in order to facilitate a more comprehensive understanding of motivational processes across different genders. The reliance on self-report data and non-verified diagnoses introduces potential biases. The present sample did not include individuals with self-reported Night Eating Syndrome (NES), although its common comorbidity with BED or BN. Further studies are required to explore the motivational profiles of individuals with NES in greater depth, in order to provide a more comprehensive picture of ED-related help-seeking behaviors. Additionally, because participants were already motivated enough to seek information online, the sample may not capture individuals in the earliest (precontemplation) stage of change. It is also noteworthy that the study employed exclusively single-item measures and open-ended questions, a methodological decision that was consistent with the exploratory nature of the investigation. Consequently, the dearth of validated instruments specifically designed to assess motivation to change (e.g., ANSOCQ) can impede the alignment of current data with the Transtheoretical Model of Change. The heterogeneity of measures of motivation in the ED literature remains a challenge [9], and further research is required to achieve consistent results on factors that might impede recovery. Furthermore, the lack of a control group hinders the ability to ascertain whether the findings are exclusive to Instagram-recruited individuals or would similarly manifest in other populations with self-reported EDs. It is also important to note that the participants were not asked direct questions regarding their use of Instagram or their relationship with online communities. Thus, our observations on the potential of social media should be interpreted as a series of considerations informed by the recruitment setting. Finally, while the qualitative study design offers rich and in-depth insights, it is subject to the potential influence of researcher bias and is limited in terms of its generalizability to different clinical populations.

Conclusions

The present study indicated that individuals participating in an Instagram recovery community exhibited a high perceived importance of change, yet comparatively lower confidence in their ability to effect change. Thematic analysis was employed to elicit user descriptions of a wide range of motivations, including emotional needs, management of illness factors, and external motivations. Furthermore, the presence of barriers such as negative self-beliefs and ambivalence towards the disorder was identified. In contrast, individuals who reported higher levels of confidence placed greater emphasis on internal resources, such as determination and self-belief, in conjunction with external resources, including professional and social support. These findings emphasize the complexity and variability of the motivational processes involved in eating disorders, highlighting the necessity for interventions that not only enhance individuals’ internal resources but also recognize the significance of interpersonal and contextual factors.

The present study concentrated on participants within an online Instagram recovery community. The results suggest that such platforms can provide accessible spaces for individuals to express their struggles with importance to change and the seeking of new sources of support. Despite the encouraging potential of digital interventions to augment conventional services by facilitating early engagement and enhancing motivation, further longitudinal research is necessary to elucidate their impact on treatment initiation and outcomes.

Abbreviations

ED/EDs

Eating Disorder/Eating Disorders

AN

Anorexia Nervosa

BN

Bulimia Nervosa

BED

Binge Eating Disorder

CBT-E

Enhanced Cognitive Behaviour Therapy

MI

Motivational Interviewing

MET

Motivational Enhancement Therapy

IG

Instagram

BMI

Body Mass Index

EDE-Q

Eating Disorder Examination Questionnaire

DASS-21

Depression, Anxiety and Stress Scale

BAS-2

Body Appreciation Scale

Author contributions

Conceptualization, G.A., A.T., G.L.C., S.G.; methodology, G.A., A.T., G.L.C., S.G; software, G.A.; validation, G.A., A.T., G.L.C., S.G; formal analysis, G.A., A.T.; investigation, G.A., G.L.C.; resources, G.A., A.T., G.L.C., S.G; data curation, G.A., A.T.; writing—original draft preparation, G.A., G.L.C., A.T. and S.G.; writing—review and editing, G.A., G.L.C., A.T. and S.G.; visualization, G.A and A.T.; supervision, G.A., G.L.C. and S.G.; project administration, G.A., and S.G.; funding acquisition, G.A., G.L.C. All authors have read and agreed to the published version of the manuscript.

Funding

The study is funded by the Italian Ministry of University and Research as part of a national grant (PRIN 2022 PNRR), Prot. P202237PFB (Finanziato dall’Unione Europea – Next Gen-eration EU”).

Data availability

The dataset generated for this study is available on request from the corresponding author.

Declarations

Ethics approval and consent to participate

The study was conducted in accordance with the Declaration of Helsinki. Ethical review and approval was obtained by the University of Palermo. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study.

Competing interests

The authors declare no competing interests.