“It's about survival, love and care” – Parents’ experiences of living with a child with ARFID: a Swedish interview study

“It's about survival, love and care” – Parents’ experiences of living with a child with ARFID: a Swedish interview study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “It's about survival, love and care” – Parents’ experiences of living with a child with ARFID: a Swedish interview study Katarzyna Brimo, Oscar Cardona Castro, Helena Holmäng, Lisa Dinkler, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7402647/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 16 Dec, 2025 Read the published version in Journal of Eating Disorders → Version 1 posted 9 You are reading this latest preprint version Abstract Background A child with avoidant/restrictive food intake disorder (ARFID) has a diet so limited that it leads to medical, nutritional, and/or psychosocial problems. ARFID affects both children and their families, often causing parents to feel anxious and isolated. This study aimed to explore the experiences of Swedish parents raising a child with ARFID. Method Data were generated through semi-structured interviews with six parents of children diagnosed with ARFID. All children were undergoing treatment for ARFID at a paediatric healthcare clinic. The interview material was transcribed and analysed using thematic analysis with the NVivo 14 software. Results The analysis resulted in three themes: (1) “It’s hard work”: ARFID dominating life, (2) “It’s not about forcing: Seeking balance, and (3) “You feel questioned”: Feeling different. All themes highlighted the complex and demanding reality that parents faced. A significant part of the families' daily lives revolved around managing the eating disorder, with parents facing numerous challenges related to their child’s eating difficulties. Parents attempted to strike a balance between planning and improvisation to manage mealtime stress and unpredictability. They struggled to understand their child’s eating habits, facing ongoing tension between promoting variety and accepting restrictions, as well as between voluntary eating and using pressure. Constant worry about the child’s health and development was compounded by a lack of understanding from others and difficulty accessing appropriate care and support. Conclusions There is a need to raise awareness of ARFID and its related difficulties in early childhood. Educational support and detailed clinical guidelines for healthcare providers should be developed and implemented to enhance patient care. Parental experiences can serve as a valuable knowledge base for improving early detection and intervention strategies for children with ARFID. ARFID eating disorders feeding problems child healthcare parent experience qualitative research thematic analysis Introduction Eating and drinking are essential to life, and many social interactions revolve around food, including family meals, school lunches, parties, travel, and dining out with friends. Parenting a child who eats selectively or insufficiently is a complex and multifaceted challenge, with potentially profound effects on family life. Avoidant/Restrictive Food Intake Disorder (ARFID) is a relatively new eating disorder diagnosis, first introduced in the Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-5) in 2013 (American Psychiatric Association, 2013) and later included in the International Statistical Classification of Diseases, 11th ed. (ICD-11) (WorldHealthOrganization, 2019). It is characterized by restrictive or avoidant eating behaviours that lead to weight loss or, in children, inadequate weight gain, significant nutritional deficiency (sometimes requiring supplements), and psychosocial impairment. Unlike other eating disorders, ARFID is not driven by concerns about body image (Izquierdo et al., 2019). Instead, food avoidance is typically rooted in one or more specific factors: heightened sensory sensitivity (e.g., to texture, smell, or taste), a lack of interest in food (e.g., due to low appetite), or fear of adverse physical consequences (e.g., choking or vomiting) (Reilly et al., 2019; Thomas et al., 2017). While ARFID can occur at any age, onset is most common in childhood (American Psychiatric Association, 2013). It is important to distinguish ARFID from common fussy eating intypically developing children, as ARFID is more severe, persistent, and impairing (Taylor et al., 2015). Children with ARFID often have co-occurring medical issues such as constipation, reflux, nausea, or abdominal pain (Feillet et al., 2019; Sanchez-Cerezo et al., 2023; Wronski et al., 2025), and the condition frequently coexists with psychiatric or neurodevelopmental disorders (Dinkler et al., 2022b; Nyholmer et al., 2025; Willmott et al., 2024). Research suggests ARFID typically begins earlier than other eating disorders, like anorexia nervosa, and is more common in boys (D’Adamo et al., 2023; Norris et al., 2016; Tanner & Richmond, 2024). Its prevalence in the general population is estimated at 1-2% (Dinkler et al., 2023; Dinkler et al., 2022b; Van Buuren et al., 2023), with much higher rates (up to 64%) reported in clinical settings (Sanchez-Cerezo et al., 2023). Several treatment models – often based on cognitive-behavioural or family therapy – have been proposed, including individual therapy, family-based approaches, and parental support interventions (Dumont et al., 2019; Lane-Loney et al., 2022; Spettigue et al., 2018; Thomas et al., 2018). When treating children with ARFID, the role of parents is central to the success of these interventions. Nevertheless, despite their critical involvement, parents often receive limited support and encounter unhelpful advice (Bekti Prasetyo et al., 2021; Krom et al., 2021). As Renedo et al. (2018) argue, effective care requires integrating clinical expertise with parents’ lived experiences, an approach that can be challenging in practice. Current research emphasises nutritional and growth support as the primary goals in treating young people with ARFID (Goday et al., 2019; Taylor & Taylor, 2021). However, healthcare providers continue to face difficulties in identifying effective, tailored support strategies. A significant lack of research on parents’ experiences hinders the development of informed, family-centred care. Addressing this gap, the present study explores the lived experiences of parents raising a child with ARFID, with the aim of highlighting the everyday and systematic challenges they face. METHODS This study was conducted as part of the project "Children who do not eat. Avoidant/restrictive food intake disorder (ARFID) in a clinical context". The Swedish Ethical Review Authority (DNR 2021-05280) approved the study. Epistemological positioning The study employed a reflexive thematic analysis (Braun & Clarke, 2006) within a critical realist framework. From this perspective, there is no objective reality that can be fully described – instead, it is always mediated by interpretation. Accordingly, we assumed that an ARFID diagnosis represents one aspect that shapes the lived realities of children and their parents. The knowledge generated through this study reflects how parents experience and interpret these challenges, while acknowledging that individual interpretations may differ. In line with critical realism, the research findings are viewed as shaped by the researchers' interpretive judgments (Pilgrim, 2019). Participants All participants were parents of children referred to a child and adolescent medicine clinic in southern Sweden due to avoidant and/or restrictive eating behaviours. Written invitations were sent to ten families, of whom nine were reached by phone to confirm interest and provide additional information. Seven parents agreed to participate, and ultimately, six were available for interview – a number consistent with recommendations for small-scale qualitative research (Braun & Clarke, 2013). All participants were biological parents (five mothers and one father), and the term “parent” is used throughout. Parents were aged 26 to 50 years (M=38.0; SD=7.1); their children (three girls, three boys) were aged 2 to 7 years (M=4.2, SD=1.8). All children had been diagnosed with ARFID according to DSM-5 criteria and had either received or were currently receiving treatment. None of the children had any medical conditions that could better explain their eating difficulties. Consistent with critical realism, the depth of data analysis was prioritised over sample size (Moore & Kelly, 2024). Given the study’s purpose and the purposive sample, further recruitment was deemed unnecessary. Procedures Data were collected through semi-structured interviews, designed to capture rich, detailed accounts that may be missed in quantitative research (Braun & Clarke, 2006). The interview guide encouraged open-ended discussion of parents’ experiences (Willig, 2022). To ease into potentially complex topics, interviews began with positive, descriptive questions about the child. Initial questions addressed the current eating situation and guided participants in reflecting on their lives with ARFID. Follow-up questions explored specific challenges and lessons learned (see Supplement for interview guide). Parents chose the interview format: one took place at home, one at the clinic, three via a digital platform, and one by phone. All interviews were conducted by a member of the research team (OCC), who was completing a supervised clinical psychology program. Interviews lasted between 39 to 74 minutes (M=59, SD=11), and all were audio-recorded and transcribed verbatim. Data analysis Analysis followed Braun and Clarke (2021) six steps process for reflexive thematic analysis. One researcher conducted the initial analysis, starting with familiarisation and coding (Steps 1-2) using NVivo 14 (Lumivero, 2023). Initial themes were generated (Step 3), then reviewed, refined, and named collaboratively by the first author and co-authors (Steps 4-5). This involved an in-depth discussion of themes, subthemes, and naming. The final sixth step involved writing up the results, which were reviewed and approved by all authors. Ethical issues Written informed consent was obtained from all participants. Debriefing was conducted after each interview. If distress arose, the interviewer facilitated contact with either the supervising psychologist or Child Health Services for parental support. RESULTS Thematic analysis generated three main themes and seven subthemes (Table 1 ), illustrating the profound impact of ARFID on parents' daily lives. The first main theme, “It’s hard work”: ARFID dominating life , captures the daily practical and emotional challenges of parenting a child with ARFID. The second main theme, “It’s not about forcing: Seeking balance , reflects parents’ efforts to balance nutritional needs, mealtime strategies, and the parent-child relationship. The third main theme, “You feel questioned”: Feeling different , describes the sense of isolation and misunderstanding that parents experienced, particularly in healthcare settings and social interactions. Table 1 Overview of themes and sub-themes Themes Sub-themes “It’s hard work”: ARFID dominating life • Planning and improvising to deal with stress • Struggling to understand the child’s eating habits and manage frustration • Constant concern for the child’s physical and social development “It’s not about forcing”: Seeking balance • Ideal variety versus pragmatic restrictiveness • Voluntary eating versus using feeding strategies “You feel questioned”: Feeling different • Experiencing prejudice and misunderstanding • Advocating for the child in healthcare “It’s hard work”: ARFID dominating life This theme captures how ARFID pervades daily life, requiring constant planning, emotional regulation, and concern for the child’s health and development. Many participants described how they tried to plan and improvise to manage the stress ARFID created. They also illustrated how their children’s eating habits could be hard to understand and predict, sometimes making them feel frustrated, as described in the second subtheme. Finally, as described in the last subtheme, parents had many concerns about their children’s physical and social well-being. Planning and improvising to deal with stress Parents described meal planning as mentally exhausting and logistically challenging. Decisions about when and what to serve required attention to mood, food availability, and past eating patterns. One parent described the constant considerations that need to be taken: What does she like to eat? Is it the right day? Is it the right time? When was the last time she had a little pot of yoghurt? [...] because if she has a small yoghurt, she won’t eat for like two hours thereafter. So, there's a lot of planning around the meal situation. (Parent 2) Tools like food diaries were used to plan meals and avoid setbacks, such as vomiting or car sickness: A food diary is great because we write down the times of the day. Then we know we can't drive off anywhere in the next few hours, because he'll throw up in the car [...] So, it's timing, what you can eat, what you can drink, can we go away somewhere, can we not go, and then as I said before in case of illness or infection you can go back and check. (Parent 3) Even with preparation, many parents described having to improvise when their child’s cues appeared briefly or unpredictably. One parent noted the stress of capturing rare eating opportunities: “If I’m lucky, she shows some signs of hunger. Then I have to cook in panic to catch the moment” (Parent 5). During the mealtime itself, this parent also had to be creative to get the child to eat: She wants to leave the table as soon as the vegetables are gone. Then, she tugs at her bib, ready to get up. That’s when I must step in and say something like, “No, but we're not going to read a book or do a puzzle right now - we can draw a little instead.” From there, I’ll say, “Let’s draw an animal, and then you take a bite.” She follows along – we draw, and she takes a bite. Then I’ll say, “Okay, now find the next bite”, and bit by bit, she eats. It works, but only under demanding conditions. It also takes a lot from us. (Parent 5). The considerable effort invested in mealtimes and the prolonged duration of eating activities had a negative impact on other aspects of daily life. One parent described that from all of this “You get tired. You get tired” (Parent 2). After working “all day,” parents felt an obligation to “force” themselves to make eating fun (Parent 5) and had less free time to recharge. As a result, they experienced lower energy levels and a decline in overall well-being. Struggling to understand the child’s eating habits and manage frustration Despite careful preparation, children often refused food, leaving parents confused and discouraged. The variation in the intensity of ARFID symptoms across different meals, weeks, or even more extended periods led to unpredictability. At times, the child might eat a substantial amount, while at other moments, they would consume very little. Parent 6 gave an example of the child having “a sandwich in the morning for breakfast and then not wanting anything for the rest of the day. Moreover, that could go on for a whole week.” These scenarios perplexed some parents about how eating could be so easy during one meal and so difficult during the next. Some children rejected meals due to minor sensory factors, such as a hard pancake edge, adding to the unpredictability: To anyone else, they were just pancakes. But for [child’s name], the edges on the pancake were a bit too hard [...], in this case, she refuses to eat. [...]. I cut the pancake in the middle so that the edges disappear. Then, she can't eat it because the pancake does not look like it should. (Parent 1) When verbal communication was limited, parents relied on expressions or gestures to interpret their children's food preferences, often preparing multiple dishes to accommodate their changing needs. Parents worked hard to experiment with various strategies to encourage their child to eat, including offering multiple foods, altering preparation methods, adjusting serving times, using different dining environments, or using varying plates and cutlery: “You try everything, fun colours, shapes but it doesn’t help. There is no influence on her at all.” (Parent 1). This relentless effort, often met with refusal, led to frustration, fatigue, guilt, and emotional exhaustion. Constant concern for the child’s physical and social development Parents expressed deep anxiety about their children’s growth, development, and social experiences. They often researched nutrition extensively and tailored meals to maximize intake. One parent expressed concern that the child might not be getting enough nutrition, worrying that “her brain is developing a lot, and is she getting everything?” (Parent 5). This led the parent to try to learn all about nutrition: You try to learn and read a lot about nutrition and see if she is getting everything since she eats so little. Can we try tofu? Can we do this? Can we cook the food? I've become a kind of food expert so that we can give her the best. So, it's hard work, I must say. (Parent 5) Illnesses worsened ARFID symptoms, sometimes triggering vomiting and regression. One parent described how having a cold led her child to feel “the mucus here [points to throat], and then he doesn't want to eat certain foods. Then he starts to gag and vomit” (Parent 3). The parent continued to explain: He vomits and vomits and vomits, and then we must start from scratch because he doesn't just vomit up medications. He vomits up the whole meal, and then he has an empty stomach again. A thin little boy who must then get nutritional drinks again, so it has been very hard. (Parent 3) Parents also worried about their child’s isolation during social events involving food, as well as the long-term effects on friendships and inclusion. “Visiting people's homes is tough. We need to bring food or explain everything. It limits how much we socialize.” (Parent 4) Over time, the worries for their child’s development aggravated parents’ anxiety, pressure, and stress. Many expressed concerns about whether these feeding issues would improve over time. They also worried about the future, especially about their child starting school and potentially facing bullying due to their eating habits. “It’s not about forcing”: Seeking balance This theme reflects the daily dilemmas parents faced, how to encourage eating without creating negative associations or damaging the parent-child relationship. The balancing act entailed choosing between promoting dietary variety or accommodating their child’s food restrictions, as outlined in the first subtheme, and between respecting the child’s autonomy or adopting a more directive approach, as explored in the second subtheme. Ideal variety versus pragmatic restrictiveness Parents wanted to introduce variety for nutritional balance but often deferred to the child’s preferences to avoid rejection. During more challenging periods, nutritional supplements or preferred foods, even if limited, were prioritized to prevent weight loss and fatigue. This pragmatic approach could mean having crisps for dinner or limiting oneself to only one type of food. Decisions of being pragmatic were also grounded in the challenges that arose when the children did not have enough energy, which this participant illustrated well: “You must always think through the situation to make sure she eats. A hungry child becomes tired and impatient.” (Parent 1) To address nutritional gaps during these difficult periods, health professionals recommended compensatory strategies such as food substitutes, nutritional drinks, or supplements. These measures provided parents with reassurance that their child would not go hungry or suffer from nutrient deficiencies due to ARFID. In addition to offering peace of mind, such interventions also helped stabilise the situation - prescription dietary drinks, for instance, played a key role in managing deficiencies and reducing immediate health risks. Dietitians and psychologists also played a vital role in offering emotional support to parents by creating a safe space where they could share their struggles and receive reassurance that practical deviations from standard dietary guidelines were both understandable and acceptable. One parent described the support they received: I talked to a psychologist at the hospital. You feel bad as a parent who only gives him the food he wants, but she [the psychologist] said it was still better that he got something than nothing at all. (Parent 4) Voluntary eating versus using feeding strategies Most parents believed pressure made things worse but admitted to using feeding strategies such as coercion: “You don't force her, but sometimes we say: “No ice cream unless you try it!” Usually, she'd rather go hungry.” (Parent 1) Parents also used distraction as a feeding strategy. While using distractions was often helpful, it could also lead to undesirable outcomes, such as preventing children from developing mindful eating habits. One parent described: I usually feed her when she isn't aware of it because she is into something else. She closes her mouth, gags, or shakes her head when she realizes she has been fed. And she blatantly refuses. I can't get her to eat. Eventually, she starts crying and wants to leave the table. (Parent 2) Another strategy was to directly reward the child, even when this went against the parent’s own principles. This could mean allowing a child to eat in front of a TV or a tablet. One participant described their strategy as a temporary solution: If I feel that nothing works, then he gets it [the iPad], just because he must get solid food and practice eating more. So, I still see it as a small gain that he eats well, then. Then, he can have his iPad for a little while. (Parent 3) Parents also questioned the fine line between encouragement and nagging, especially when it led to conflict or distress. Others found success by involving their children in decisions about food and allowing them to control small choices, such as selecting cutlery or dipping sauce, which helped reduce anxiety and increase motivation. “You feel questioned”: Feeling different This theme highlights the social and institutional challenges parents encountered, including stigma, misunderstanding, and difficulty accessing support. They perceived others as reacting negatively to their child’s eating habits, as described in the first subtheme. Although several parents had positive experiences with healthcare interactions, many also described challenges in obtaining proper support, as discussed in the next subtheme. Experiencing prejudice and misunderstanding Many parents described being judged by others, who assumed their child’s behaviour stemmed from poor parenting or lack of discipline. As one parent expressed: “People think we spoil her or that she’s not raised properly. It’s frustrating and hurtful.” (Parent 5) Mealtimes with extended family or friends often became emotionally charged, prompting some to avoid social settings altogether or hide accommodations like screen time during meals: I want nothing more than to sit at the table and have a cozy family dinner, but my child eats more if he eats in front of the TV. I would feel ashamed to tell them this since I know they would question whether children should eat in front of the screen. (Parent 6) These judgments led to shame and self-doubt. Even institutions like preschools sometimes failed to understand ARFID, questioning the child’s independence or the parents’ methods: The preschool might say: “Oh, so she does not eat by herself?” And we’re like: “Yeah, we must feed her, otherwise she won’t get what she needs.” Family and friends might say, “What? Isn’t she going to eat? Is she that spoiled? Doesn’t she like what we’ve made?” […]. They almost act like we’ve spoiled her by only making certain foods or by letting her leave the table, like she’s poorly raised. That’s mostly how people seem to interpret this whole [ARFID] thing. (Parent 5) A lack of understanding from preschool and school staff often leads to children being excluded from the social environment during mealtimes. In some cases, children go hungry at school, leading parents to compensate with food at home – a task made even more challenging by the complexities of the eating disorder. Breaking eating norms then requires parents not only to work hard to deal with the challenges of ARFID but also to avoid discussing, explaining, and defending their actions and their child’s eating habits, contributing to an additional burden. Advocating for the child in healthcare Parents described varied experiences with healthcare. Some professionals were supportive and proactive, offering personalised guidance and reassurance. Others seemed dismissive or relied too heavily on growth curves, overlooking the parents’ daily struggles. Positive experiences were usually characterised by a collaborative approach to addressing their children's difficulties and a feeling that the provider cared for the child’s overall well-being. Parent 3 described how their nurse from child health services called regularly, and asked: “How is he doing? Then I talk a bit more generally about him, too, not just about the diet. So, it feels good.” (Parent 3) It was also important for parents to feel heard and validated in their concerns. One participant described how they felt about the nurse from child health services who responded supportively and provided hope: Then I called her [the nurse] and said, “I want to come in and weigh her because I feel that it has been a tough month.” She took me in immediately. When the weight curve showed no progress, the nurse said, “Let's start again, and we'll see.” She gave me some tips, and we looked at recipes together, deciding to try scrambled eggs. (Parent 2) As Parent 2 described in the quote above, feeling heard and understood helped parents trust their child’s caregivers. This sense of trust and support reassured them when eating became problematic. However, not all interactions with healthcare were described as positive. Expressions such as "being on the warpath" and "going on the offensive" were used in the interviews to illustrate the challenges parents faced in having their concerns about the child’s eating difficulties acknowledged. According to the parents, a significant part of their advocacy has been conveying to health professionals that there was a problem with their child's eating. They described situations where they felt unheard and unsuccessful in convincing professionals, which forced them to exert some form of pressure or seek alternative access to specialized care or a proper assessment of the child's condition. Some wished that healthcare providers, childcare services, and schools had been more considerate of their child’s unique and challenging circumstances: “You already have a battle at home. You don’t need another one in healthcare”. (Parent 5) Consequently, many parents felt unheard, and their concerns, observations, and unique situations were dismissed. One parent said: “I cried after every visit. I felt bad because nobody listened to what I said. You think you know your child best anyway, right?” (Parent 2). Overall, the effort to secure appropriate care and support placed an additional burden on parents. DISCUSSION This study explored the lived experiences of Swedish parents raising a child with ARFID, focusing on daily life and seeking support. Parents frequently described feeling isolated, anxious, and misunderstood. Despite numerous interventions, their child’s feeding difficulties often persisted, and ARFID gradually came to dominate family life. Mealtimes became a source of ongoing stress, with parents feeling relentless pressure to ensure their child meets basic nutritional needs. Repeated failed attempts to feed their child contributed to feelings of resignation, helplessness, and grief. The added burden of preparing special meals further depleted parents’ time and energy. These findings are consistent with previous research on paediatric feeding challenges (Fox et al., 2017 ; Lindkvist & Russell, 2022 ; Whitney & Eisler, 2005 ). By systematising parents’ lived experiences, this study provides a valuable resource for healthcare professionals. As reflected in the identified themes, families often seek medical support under considerable emotional strain, with urgent needs and high expectations. Positive healthcare experiences were characterised by collaboration, validation, and acknowledgment – elements that may be especially critical for parents who feel emotionally vulnerable when engaging with professionals. These findings align with earlier research that highlights parents’ difficulties in navigating healthcare services (Lamm et al., 2023 ; Lindkvist & Russell, 2022 ; Lundberg et al., 2017 ; Muldoon et al., 2022 ). Parents often described feeling exhausted and overwhelmed when seeking help, and many carried a sense of guilt or shame over their perceived failure to help their child. These emotions can act as barriers to effective communication with professionals. This, in turn, highlights the importance of early detection tools to identify ARFID before these difficulties escalate. Promising tools for early screening have already been developed and tested in Japan and Sweden (Dinkler et al., 2024 ; Dinkler et al., 2022a ). A complementary approach to mitigating these challenges could involve recognising and validating parents’ emotions. Linehan ( 1997 ) emphasises that validating guilt and shame can empower individuals. For healthcare providers, this means actively listening to parents and recognising the legitimacy of their experiences. Validation can help de-escalate negative emotions and support more productive conversations and planning. Beyond the clinical setting, parents reported a lack of social understanding and support, consistent with findings from studies on eating disorders (Eklund & Salzmann-Erikson, 2016 ; Fox et al., 2017 ), subclinical eating difficulties (Cunliffe et al., 2022 ), and paediatric feeding disorders (Lamm et al., 2023 ). In the case of ARFID, this lack of support may be particularly harmful, contributing to emotional isolation and compounding family stress. These findings underscore the need for a comprehensive system of support that acknowledges and validates the lived experiences of affected families. Misunderstandings and preconceived notions often arise in school and preschool environments, where collaboration is essential for a child's well-being. When staff lack awareness, children may be excluded during mealtimes, sometimes going without food altogether. This often forces parents to compensate at home, a task made more difficult by the complexities of ARFID. As a result, parents not only face the challenges of managing the disorder but also carry the additional burden of justifying their choices and shielding their children from judgment. While professional validation is essential, peer support can also play a meaningful role. Parents of children with mental health conditions, including eating disorders, express a strong need for peer support groups - yet this need remains largely unmet within current healthcare models (Martin et al., 2024 ). For parents of children with ARFID, support groups could offer a safe space to share experiences, reduce isolation, and learn from others. Prior research shows that such groups can foster empowerment, understanding, and relief (Fox et al., 2017 ). STRENGTHS AND LIMITATIONS This study aimed to offer a methodologically robust and conceptually thoughtful contribution to the growing body of research on ARFID. By adopting a critical realist epistemology and applying Braun and Clarke’s well-established flexible approach to thematic analysis, we provide a transparent and reflective interpretation of the data. The study demonstrates strong clinical relevance. By centring parents’ lived experiences, it sheds light on the day-to-day challenges of supporting a child with ARFID – an area often overlooked in clinical practice. The insights gained can meaningfully inform the development of more responsive and family-centred care strategies. Importantly, we address an unexplored aspect of ARFID. While much of the existing research on ARFID focuses on diagnostic and clinical aspects, this work highlights the relational and emotional dimensions of the condition from a parental perspective. In doing so, it lays a valuable foundation for future research and the design of more family-centred interventions. However, some limitations should be noted. First, while the study aimed to provide transferable insights, caution is warranted when generalizing the findings. Most participants were mothers. Consequently, the experiences of fathers are underrepresented. Nonetheless, given that mothers often take on the primary caregiving role, their perspectives remain highly informative. Second, the children varied in age, which may have influenced how they and their parents experienced ARFID. At the same time, this diversity allowed for a more comprehensive view of how ARFID manifests across early childhood. Third, ARFID is a heterogeneous condition, and while shared themes were identified, notable individual differences were also observed. For instance, some parents prioritized dietary variety, while others focused on ensuring energy intake through supplements or preferred foods. Lastly, cultural and systemic differences, such as healthcare systems and parenting norms, may affect the transferability of findings to other countries and contexts. These factors should be considered when applying the results beyond Sweden. CONCLUSION ARFID is often mistaken for a phase of extreme picky eating or attributed to poor parenting. These misconceptions can leave parents feeling ashamed and guilty, especially when compounded by a healthcare system that may lack adequate knowledge or resources for supporting children with ARFID. Parents in this study described tireless efforts to advocate for their children while facing conflicting advice, minimal support, and widespread misunderstanding – experiences that were deeply exhausting and emotionally draining. Addressing these challenges requires improved training and greater awareness of ARFID among primary care providers. Early identification is crucial and depends on the availability of clear clinical guidelines and educational tools to enable timely and effective intervention. Equally important is the inclusion of parents’ lived experiences in the development of detection and intervention strategies. This approach can ensure that care systems are better equipped to meet the real-world needs of affected families. Establishing detailed national guidelines for children and adults with ARFID is essential to standardise care and ensure consistency across healthcare settings. The challenges identified by parents in this study highlight areas that clinicians and therapists should address to strengthen support for families. Reliable screening tools should be developed and widely implemented to support early identification. Ensuring access to multidisciplinary teams with expertise in ARFID is also critical for delivering comprehensive, coordinated care. Future research should focus on developing and evaluating evidence-based interventions tailored to the unique needs of patients with ARFID and their families. Such efforts are crucial for enhancing treatment outcomes and reducing the burden on those affected by the disorder. Declarations Conflict of interest We report no conflicts of interest. Interview guide Guidelines for the interview Funding Swedish Research Council (Vetenskapsrådet; Råstam, 2018–02544; Gillberg, 538-2013‐8864); Swedish Brain Foundation (Hjärnfonden) with support from Ulf Lundahls Minnesfond, Susanne Hobohms Stiftelse, and Team Rynkeby (Råstam, FO2020-0140, FO2022-0094), Stiftelsen Petter Silverskiölds Minnesfond (Brimo, 2024 − 564). The funding bodies were not involved in the design of the study; collection, analysis, interpretation of the data; or writing of the manuscript. Author Contribution Author ContributionsConceptualisation/design: Dinkler, Nyström, Brimo, Holmäng, RåstamFunding acquisition: Råstam, Dinkler Data acquisition: Cardona CastroData analysis: Cardona Castro, Brimo, LundbergSupervision: Nyström, RåstamWriting–original draft: BrimoWriting–review and editing: All authorsApproved submitted version: All authors Acknowledgements We thank the participants and personnel at Skåne University Hospital for their assistance with data collection. Data Availability Statement Data will be made available by the authors upon reasonable request. References American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed., Vol. 17). Bekti Prasetyo Y, Salahudin S, Dwi Kurnia A, Melizza N. (2021). A Systematic Review of the Parenting, Feeding, Behavior, Family, and Nutrition for Children with Avoidant Restrictive Food Intake Disorder (ARFID). Indian J Forensic Med Toxicol, 15 (3). Braun V, Clarke V. 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Screening for avoidant restrictive food intake disorder (ARFID) in primary care: clinical presentation and validation of the ARFID-Brief Screener in Swedish preschoolers. medRxiv , 2024.2009. 2026.24314270. Dinkler L, Yasumitsu-Lovell K, Eitoku M, Fujieda M, Suganuma N, Hatakenaka Y, Hadjikhani N, Bryant-Waugh R, Råstam M, Gillberg C. Development of a parent-reported screening tool for avoidant/restrictive food intake disorder (ARFID): Initial validation and prevalence in 4-7-year-old Japanese children. Appetite. 2022a;168:105735. https://doi.org/10.1016/j.appet.2021.105735 . Dinkler L, Yasumitsu-Lovell K, Eitoku M, Fujieda M, Suganuma N, Hatakenaka Y, Hadjikhani N, Bryant-Waugh R, Råstam M, Gillberg C. Early neurodevelopmental problems and risk for avoidant/restrictive food intake disorder (ARFID) in 4-7-year-old children: A Japanese birth cohort study. JCPP Adv. 2022b;2(3):e12094. https://doi.org/10.1002/jcv2.12094 . Dumont E, Jansen A, Kroes D, de Haan E, Mulkens S. A new cognitive behavior therapy for adolescents with avoidant/restrictive food intake disorder in a day treatment setting: A clinical case series. Int J Eat Disord. 2019;52(4):447–58. https://doi.org/10.1002/eat.23053 . Eklund R, Salzmann-Erikson M. An integrative review of the literature on how eating disorders among adolescents affect the family as a system–complex structures and relational processes. Mental health Rev J. 2016;21(3):213–30. Feillet F, Bocquet A, Briend A, Chouraqui J-P, Darmaun D, Frelut M-L, Girardet J-P, Guimber D, Hankard R, Lapillonne A. Nutritional risks of ARFID (avoidant restrictive food intake disorders) and related behavior. Archives de Pédiatrie. 2019;26(7):437–41. Fox JR, Dean M, Whittlesea A. The experience of caring for or living with an individual with an eating disorder: A meta-synthesis of qualitative studies. Clin Psychol Psychother. 2017;24(1):103–25. Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, Delaney AL, Feuling MB, Noel RJ, Gisel E, Kenzer A, Kessler DB, de Camargo K, Browne O, J., Phalen JA. Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework. J Pediatr Gastroenterol Nutr. 2019;68(1):124–9. https://doi.org/10.1097/mpg.0000000000002188 . Izquierdo A, Plessow F, Becker KR, Mancuso CJ, Slattery M, Murray HB, Hartmann AS, Misra M, Lawson EA, Eddy KT. Implicit attitudes toward dieting and thinness distinguish fat-phobic and non‐fat‐phobic anorexia nervosa from avoidant/restrictive food intake disorder in adolescents. Int J Eat Disord. 2019;52(4):419–27. Krom H, Van Oers HA, Van Der Sluijs Veer L, Van Zundert SM, Otten M-AG, Haverman L, Benninga MA, Kindermann A. Health-related quality of life and distress of parents of children with avoidant restrictive food intake disorder. J Pediatr Gastroenterol Nutr. 2021;73(1):115–24. Lamm K, Kristensson Hallström I, Landgren K. Parents’ experiences of living with a child with paediatric feeding disorder: an interview study in Sweden. Scand J Caring Sci. 2023;37(4):949–58. Lane-Loney SE, Zickgraf HF, Ornstein RM, Mahr F, Essayli JH. A cognitive-behavioral family-based protocol for the primary presentations of avoidant/restrictive food intake disorder (ARFID): case examples and clinical research findings. Cogn Behav Pract. 2022;29(2):318–34. Lindkvist S, Russell C. (2022). Erfarenheter av mötet med sjukvården beskrivet av föräldrar till barn med ARFID-En kvalitativ intervjustudie. In. Linehan M. (1997). Validation and psychotherapy. Empathy reconsidered: New directions in psychotherapy/American Psychological Association . Lumivero F. NVivo (version 14). USA: In: Lumivero Denver, CO; 2023. Lundberg T, Lindström A, Roen K, Hegarty P. From knowing nothing to knowing what, how and now: parents’ experiences of caring for their children with congenital adrenal hyperplasia. J Pediatr Psychol. 2017;42(5):520–9. Martin F, Dahmash D, Wicker S, Glover S-L, Duncan C, Anastassiou A, Docherty L, Halligan S. (2024). Psychological well-being and needs of parents and carers of children and young people with mental health difficulties: a quantitative systematic review with meta-analyses. BMJ Ment Health, 27 (1). Moore AR, Kelly DM. Getting real about critical realist interviewing: Five principles to guide practice. Int J Qualitative Methods. 2024;23:16094069241299311. Muldoon DM, Murphy TM, DeBonis DA. Tan and Crunchy Is Where We Live: An Interpretative Phenomenological Analysis of Caregivers' Perspectives of Pediatric Feeding Disorder in Children With Developmental Disability. Am J Speech-Language Pathol. 2022;31(6):2675–87. Norris ML, Spettigue WJ, Katzman DK. Update on eating disorders: current perspectives on avoidant/restrictive food intake disorder in children and youth. Neuropsychiatr Dis Treat. 2016;12:213–8. https://doi.org/10.2147/ndt.S82538 . Nyholmer M, Wronski ML, Hog L, Kuja-Halkola R, Lichtenstein P, Lundström S, Larsson H, Taylor MJ, Bulik CM, Dinkler L. (2025). Neurodevelopmental and psychiatric conditions in 600 Swedish children with the avoidant/restrictive food intake disorder phenotype. J Child Psychol Psychiatry. Pilgrim D. Critical realism for psychologists. Routledge; 2019. Reilly EE, Brown TA, Gray EK, Kaye WH, Menzel JE. Exploring the cooccurrence of behavioural phenotypes for avoidant/restrictive food intake disorder in a partial hospitalization sample. Eur Eat Disord Rev. 2019;27(4):429–35. https://doi.org/10.1002/erv.2670 . Renedo A, Komporozos-Athanasiou A, Marston C. Experience as evidence: the dialogic construction of health professional knowledge through patient involvement. Sociology. 2018;52(4):778–95. Sanchez-Cerezo J, Nagularaj L, Gledhill J, Nicholls D. What do we know about the epidemiology of avoidant/restrictive food intake disorder in children and adolescents? A systematic review of the literature. Eur Eat Disord Rev. 2023;31(2):226–46. https://doi.org/10.1002/erv.2964 . Spettigue W, Norris ML, Santos A, Obeid N. Treatment of children and adolescents with avoidant/restrictive food intake disorder: a case series examining the feasibility of family therapy and adjunctive treatments. J Eat Disord. 2018;6:20. https://doi.org/10.1186/s40337-018-0205-3 . Tanner AB, Richmond TK. Assessing growth in children and adolescents with Avoidant/Restrictive Food Intake Disorder. J Eat Disorders. 2024;12(1):82. Taylor CM, Wernimont SM, Northstone K, Emmett PM. Picky/fussy eating in children: Review of definitions, assessment, prevalence and dietary intakes. Appetite. 2015;95:349–59. https://doi.org/10.1016/j.appet.2015.07.026 . Taylor T, Taylor SA. (2021). Let's not wait and see: The substantial risks of paediatric feeding problems. Int J Child Adolesc Health, 14 (1). Thomas JJ, Lawson EA, Micali N, Misra M, Deckersbach T, Eddy KT. Avoidant/Restrictive Food Intake Disorder: a Three-Dimensional Model of Neurobiology with Implications for Etiology and Treatment. Curr Psychiatry Rep. 2017;19(8):54. https://doi.org/10.1007/s11920-017-0795-5 . Thomas JJ, Wons OB, Eddy KT. Cognitive-behavioral treatment of avoidant/restrictive food intake disorder. Curr Opin Psychiatry. 2018;31(6):425–30. https://doi.org/10.1097/yco.0000000000000454 . Whitney J, Eisler I. Theoretical and empirical models around caring for someone with an eating disorder: The reorganization of family life and inter-personal maintenance factors. J Mental Health. 2005;14(6):575–85. Willig C. EBOOK: introducing qualitative research in psychology. McGraw-hill education (UK); 2022. Willmott E, Dickinson R, Hall C, Sadikovic K, Wadhera E, Micali N, Trompeter N, Jewell T. A scoping review of psychological interventions and outcomes for avoidant and restrictive food intake disorder (ARFID). Int J Eat Disord. 2024;57(1):27–61. WorldHealthOrganization. (2019). International statistical classification of diseases and related health problems (11th ed.) . https://doi.org/https://icd.who.int/ Wronski M-L, Kuja-Halkola R, Hedlund E, Martini MI, Lichtenstein P, Lundström S, Larsson H, Taylor MJ, Micali N, Bulik CM. (2025). Mental and Somatic Conditions in Children With the Broad Avoidant Restrictive Food Intake Disorder Phenotype. JAMA pediatrics . Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7402647","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":508946483,"identity":"24863e04-5f21-445d-bc34-98384fb77108","order_by":0,"name":"Katarzyna Brimo","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA9UlEQVRIiWNgGAWjYBACCQSTh4EhgYFBjggtzKhajEnUAgSJDYS0SLafP/i54s/hPP4G3mMfHubYpM+PSGD+8AGPFmmeZGbJMzyHiyUO8CXPSNyWlrvxRgKb5Aw8WuQYkhkkGyQOJzYc4DFmSNx2OHfjjAQ2Zh58WvgfM/9sMDicOB+qJd1wRgLz5z/4HCaRzCbZkHA4cQNUS4K8RAKDNF7vz3hsZtlwID1x42G+ZKCWNMMNPA/bJHvwaJE4n/j4ZsMf68R5x3sPM/7cZiMv3558+MMPfNZAQDMDPH4MDjA2ENbAwFCHYMoTpWEUjIJRMApGEgAAtXBN2sEmcCkAAAAASUVORK5CYII=","orcid":"","institution":"University of Gothenburg","correspondingAuthor":true,"prefix":"","firstName":"Katarzyna","middleName":"","lastName":"Brimo","suffix":""},{"id":508946484,"identity":"d855538d-9a8e-4072-820f-18cabde8325d","order_by":1,"name":"Oscar Cardona Castro","email":"","orcid":"","institution":"Skåne University Hospital","correspondingAuthor":false,"prefix":"","firstName":"Oscar","middleName":"Cardona","lastName":"Castro","suffix":""},{"id":508946485,"identity":"b51983de-b598-4ee9-9f1f-f7e30334d75f","order_by":2,"name":"Helena Holmäng","email":"","orcid":"","institution":"University of Gothenburg","correspondingAuthor":false,"prefix":"","firstName":"Helena","middleName":"","lastName":"Holmäng","suffix":""},{"id":508946486,"identity":"75556251-a19b-4b57-97d8-14582bb28df3","order_by":3,"name":"Lisa Dinkler","email":"","orcid":"","institution":"Karolinska Institute","correspondingAuthor":false,"prefix":"","firstName":"Lisa","middleName":"","lastName":"Dinkler","suffix":""},{"id":508946487,"identity":"058ee7d2-17e5-4615-9af2-0b67e637be88","order_by":4,"name":"Tove Lundberg","email":"","orcid":"","institution":"Lund University","correspondingAuthor":false,"prefix":"","firstName":"Tove","middleName":"","lastName":"Lundberg","suffix":""},{"id":508946488,"identity":"62944741-2d24-45ad-89a0-72784263ada6","order_by":5,"name":"Maria Råstam","email":"","orcid":"","institution":"Lund University","correspondingAuthor":false,"prefix":"","firstName":"Maria","middleName":"","lastName":"Råstam","suffix":""},{"id":508946489,"identity":"881f7fd4-7f42-4287-b1fa-9a6d227182d6","order_by":6,"name":"Beatrice Nyström","email":"","orcid":"","institution":"Lund University","correspondingAuthor":false,"prefix":"","firstName":"Beatrice","middleName":"","lastName":"Nyström","suffix":""}],"badges":[],"createdAt":"2025-08-18 20:23:07","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7402647/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7402647/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40337-025-01479-5","type":"published","date":"2025-12-16T15:58:17+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":98815577,"identity":"be4f07d2-8b73-4272-b92e-ebbb378e8f7a","added_by":"auto","created_at":"2025-12-22 16:14:54","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":888754,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7402647/v1/a4c13111-0ba0-4b31-9e9c-e6d5e12497e9.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"“It's about survival, love and care” – Parents’ experiences of living with a child with ARFID: a Swedish interview study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eEating and drinking are essential to life, and many social interactions revolve around food, including family meals, school lunches, parties, travel, and dining out with friends. Parenting a child who eats selectively or insufficiently is a complex and multifaceted challenge, with potentially profound effects on family life.\u003c/p\u003e\n\u003cp\u003eAvoidant/Restrictive Food Intake Disorder (ARFID) is a relatively new eating disorder diagnosis, first introduced in\u0026nbsp;the Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-5) in 2013 (American Psychiatric Association, 2013) and later included in the International Statistical Classification of Diseases, 11th ed. (ICD-11) (WorldHealthOrganization, 2019). It is characterized by restrictive or avoidant eating behaviours that lead to weight loss or, in children, inadequate weight gain, significant nutritional deficiency (sometimes requiring supplements), and psychosocial impairment.\u003c/p\u003e\n\u003cp\u003eUnlike other eating disorders, ARFID is not driven by concerns about body image\u0026nbsp;(Izquierdo et al., 2019). Instead, food avoidance is typically rooted in one or more specific factors: heightened sensory sensitivity (e.g., to texture, smell, or taste), a lack of interest in food (e.g., due to low appetite), or fear of adverse physical consequences (e.g., choking or vomiting) (Reilly et al., 2019; Thomas et al., 2017). While ARFID can occur at any age, onset is most common in childhood (American Psychiatric Association, 2013). It is important to distinguish ARFID from common fussy eating intypically developing children, as ARFID is more severe, persistent, and impairing (Taylor et al., 2015).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eChildren with ARFID often have co-occurring medical issues such as constipation, reflux, nausea, or abdominal pain \u0026nbsp;(Feillet et al., 2019; Sanchez-Cerezo et al., 2023; Wronski et al., 2025), and the condition frequently coexists with psychiatric or neurodevelopmental disorders (Dinkler et al., 2022b; Nyholmer et al., 2025; Willmott et al., 2024).\u003c/p\u003e\n\u003cp\u003eResearch suggests ARFID typically begins earlier than other eating disorders, like anorexia nervosa, and is more common in boys (D’Adamo et al., 2023; Norris et al., 2016; Tanner \u0026amp; Richmond, 2024). Its prevalence in the general population is estimated at 1-2% (Dinkler et al., 2023; Dinkler et al., 2022b; Van Buuren et al., 2023), with much higher rates (up to 64%) reported in clinical settings (Sanchez-Cerezo et al., 2023).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSeveral treatment models – often based on cognitive-behavioural or family therapy – have been proposed, including individual therapy, family-based approaches, and parental support interventions (Dumont et al., 2019; Lane-Loney et al., 2022; Spettigue et al., 2018; Thomas et al., 2018).\u003c/p\u003e\n\u003cp\u003eWhen treating children with ARFID, the role of parents is central to the success of these interventions. Nevertheless, despite their critical involvement, parents often receive limited support and encounter unhelpful advice (Bekti Prasetyo et al., 2021; Krom et al., 2021).\u003c/p\u003e\n\u003cp\u003eAs Renedo et al. (2018) argue, effective care requires integrating clinical expertise with parents’ lived experiences, an approach that can be challenging in practice. Current research emphasises nutritional and growth support as the primary goals in treating young people with ARFID (Goday et al., 2019; Taylor \u0026amp; Taylor, 2021). However, healthcare providers continue to face difficulties in identifying effective, tailored support strategies. A significant lack of research on parents’ experiences hinders the development of informed, family-centred care.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAddressing this gap, the present study explores the lived experiences of parents raising a child with ARFID, with the aim of highlighting the everyday and systematic challenges they face.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003eThis study was conducted as part of the project \u003cem\u003e\"Children who do not eat. Avoidant/restrictive food intake disorder (ARFID) in a clinical context\".\u0026nbsp;\u003c/em\u003eThe Swedish Ethical Review Authority (DNR 2021-05280) approved the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEpistemological positioning\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study employed a reflexive thematic analysis (Braun \u0026amp; Clarke, 2006) within a critical realist framework. From this perspective, there is no objective reality that can be fully described – instead, it is always mediated by interpretation. Accordingly, we assumed that an ARFID diagnosis represents one aspect that shapes the lived realities of children and their parents. The knowledge generated through this study reflects how parents experience and interpret these challenges, while acknowledging that individual interpretations may differ. In line with critical realism, the research findings are viewed as shaped by the researchers' interpretive judgments\u0026nbsp;(Pilgrim, 2019).\u003c/p\u003e\n\u003ch2\u003e\u003cstrong\u003eParticipants\u003c/strong\u003e\u003c/h2\u003e\n\u003cp\u003eAll participants were parents of children referred to a child and adolescent medicine clinic in southern Sweden due to avoidant and/or restrictive eating behaviours. Written invitations were sent to ten families, of whom nine were reached by phone to confirm interest and provide additional information. Seven parents agreed to participate, and ultimately, six were available for interview – a number consistent with recommendations for small-scale qualitative research\u0026nbsp;(Braun \u0026amp; Clarke, 2013).\u003c/p\u003e\n\u003cp\u003eAll participants were biological parents (five mothers and one father), and the term “parent” is used throughout. Parents were aged 26 to 50 years (M=38.0; SD=7.1); their children (three girls, three boys) were aged 2 to 7 years (M=4.2, SD=1.8). All children had been diagnosed with ARFID according to DSM-5 criteria and had either received or were currently receiving treatment. None of the children had any medical conditions that could better explain their eating difficulties. \u0026nbsp; \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eConsistent with critical realism, the depth of data analysis was prioritised over sample size (Moore \u0026amp; Kelly, 2024). Given the study’s purpose and the purposive sample, further recruitment was deemed unnecessary.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProcedures\u003c/strong\u003e\u003c/p\u003e\n\u003ch2\u003eData were collected through semi-structured interviews, designed to capture rich, detailed accounts that may be missed in quantitative research (Braun \u0026amp; Clarke, 2006). The interview guide encouraged open-ended discussion of parents’ experiences (Willig, 2022).\u003c/h2\u003e\n\u003cp\u003eTo ease into potentially complex topics, interviews began with positive, descriptive questions about the child. Initial questions addressed the current eating situation and guided participants in reflecting on their lives with ARFID. Follow-up questions explored specific challenges and lessons learned (see Supplement for interview guide).\u003c/p\u003e\n\u003cp\u003eParents chose the interview format: one took place at home, one at the clinic, three via a digital platform, and one by phone. All interviews were conducted by a member of the research team (OCC), who was completing a supervised clinical psychology program. Interviews lasted between 39 to 74 minutes (M=59, SD=11), and all were audio-recorded and transcribed verbatim.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAnalysis followed Braun and Clarke (2021) six steps process for reflexive thematic analysis. One researcher conducted the initial analysis, starting with familiarisation and coding (Steps 1-2) using NVivo 14\u0026nbsp;(Lumivero, 2023). Initial themes were generated (Step 3), then reviewed, refined, and named collaboratively by the first author and co-authors (Steps 4-5). This involved an in-depth discussion of themes, subthemes, and naming. The final sixth step involved writing up the results, which were reviewed and approved by all authors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical issues\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent was obtained from all participants. Debriefing was conducted after each interview. If distress arose, the interviewer facilitated contact with either the supervising psychologist or Child Health Services for parental support.\u0026nbsp;\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003eThematic analysis generated three main themes and seven subthemes (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e), illustrating the profound impact of ARFID on parents' daily lives. The first main theme, \u003cem\u003e\u0026ldquo;It\u0026rsquo;s hard work\u0026rdquo;: ARFID dominating life\u003c/em\u003e, captures the daily practical and emotional challenges of parenting a child with ARFID. The second main theme, \u003cem\u003e\u0026ldquo;It\u0026rsquo;s not about forcing: Seeking balance\u003c/em\u003e, reflects parents\u0026rsquo; efforts to balance nutritional needs, mealtime strategies, and the parent-child relationship. The third main theme, \u003cem\u003e\u0026ldquo;You feel questioned\u0026rdquo;: Feeling different\u003c/em\u003e, describes the sense of isolation and misunderstanding that parents experienced, particularly in healthcare settings and social interactions.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eOverview of themes and sub-themes\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eThemes\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSub-themes\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026ldquo;It\u0026rsquo;s hard work\u0026rdquo;: ARFID dominating life\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026bull; Planning and improvising to deal with stress\u003c/p\u003e\u003cp\u003e\u0026bull; Struggling to understand the child\u0026rsquo;s eating habits and manage frustration\u003c/p\u003e\u003cp\u003e\u0026bull; Constant concern for the child\u0026rsquo;s physical and social development\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026ldquo;It\u0026rsquo;s not about forcing\u0026rdquo;: Seeking balance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026bull; Ideal variety versus pragmatic restrictiveness\u003c/p\u003e\u003cp\u003e\u0026bull; Voluntary eating versus using feeding strategies\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026ldquo;You feel questioned\u0026rdquo;: Feeling different\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026bull; Experiencing prejudice and misunderstanding\u003c/p\u003e\u003cp\u003e\u0026bull; Advocating for the child in healthcare\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003e\u0026ldquo;It\u0026rsquo;s hard work\u0026rdquo;: ARFID dominating life\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis theme captures how ARFID pervades daily life, requiring constant planning, emotional regulation, and concern for the child\u0026rsquo;s health and development. Many participants described how they tried to plan and improvise to manage the stress ARFID created. They also illustrated how their children\u0026rsquo;s eating habits could be hard to understand and predict, sometimes making them feel frustrated, as described in the second subtheme. Finally, as described in the last subtheme, parents had many concerns about their children\u0026rsquo;s physical and social well-being.\u003c/p\u003e\n\u003ch3\u003ePlanning and improvising to deal with stress\u003c/h3\u003e\n\u003cp\u003eParents described meal planning as mentally exhausting and logistically challenging. Decisions about when and what to serve required attention to mood, food availability, and past eating patterns. One parent described the constant considerations that need to be taken:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eWhat does she like to eat? Is it the right day? Is it the right time? When was the last time she had a little pot of yoghurt? [...] because if she has a small yoghurt, she won\u0026rsquo;t eat for like two hours thereafter. So, there's a lot of planning around the meal situation. (Parent 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eTools like food diaries were used to plan meals and avoid setbacks, such as vomiting or car sickness:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eA food diary is great because we write down the times of the day. Then we know we can't drive off anywhere in the next few hours, because he'll throw up in the car [...] So, it's timing, what you can eat, what you can drink, can we go away somewhere, can we not go, and then as I said before in case of illness or infection you can go back and check. (Parent 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eEven with preparation, many parents described having to improvise when their child\u0026rsquo;s cues appeared briefly or unpredictably. One parent noted the stress of capturing rare eating opportunities: \u0026ldquo;If I\u0026rsquo;m lucky, she shows some signs of hunger. Then I have to cook in panic to catch the moment\u0026rdquo; (Parent 5). During the mealtime itself, this parent also had to be creative to get the child to eat:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eShe wants to leave the table as soon as the vegetables are gone. Then, she tugs at her bib, ready to get up. That\u0026rsquo;s when I must step in and say something like, \u0026ldquo;No, but we're not going to read a book or do a puzzle right now - we can draw a little instead.\u0026rdquo; From there, I\u0026rsquo;ll say, \u0026ldquo;Let\u0026rsquo;s draw an animal, and then you take a bite.\u0026rdquo; She follows along \u0026ndash; we draw, and she takes a bite. Then I\u0026rsquo;ll say, \u0026ldquo;Okay, now find the next bite\u0026rdquo;, and bit by bit, she eats. It works, but only under demanding conditions. It also takes a lot from us. (Parent 5).\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe considerable effort invested in mealtimes and the prolonged duration of eating activities had a negative impact on other aspects of daily life. One parent described that from all of this \u0026ldquo;You get tired. You get tired\u0026rdquo; (Parent 2). After working \u0026ldquo;all day,\u0026rdquo; parents felt an obligation to \u0026ldquo;force\u0026rdquo; themselves to make eating fun (Parent 5) and had less free time to recharge. As a result, they experienced lower energy levels and a decline in overall well-being.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eStruggling to understand the child\u0026rsquo;s eating habits and manage frustration\u003c/h2\u003e\u003cp\u003eDespite careful preparation, children often refused food, leaving parents confused and discouraged. The variation in the intensity of ARFID symptoms across different meals, weeks, or even more extended periods led to unpredictability. At times, the child might eat a substantial amount, while at other moments, they would consume very little. Parent 6 gave an example of the child having \u0026ldquo;a sandwich in the morning for breakfast and then not wanting anything for the rest of the day. Moreover, that could go on for a whole week.\u0026rdquo; These scenarios perplexed some parents about how eating could be so easy during one meal and so difficult during the next. Some children rejected meals due to minor sensory factors, such as a hard pancake edge, adding to the unpredictability:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eTo anyone else, they were just pancakes. But for [child\u0026rsquo;s name], the edges on the pancake were a bit too hard [...], in this case, she refuses to eat. [...]. I cut the pancake in the middle so that the edges disappear. Then, she can't eat it because the pancake does not look like it should. (Parent 1)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e When verbal communication was limited, parents relied on expressions or gestures to interpret their children's food preferences, often preparing multiple dishes to accommodate their changing needs. Parents worked hard to experiment with various strategies to encourage their child to eat, including offering multiple foods, altering preparation methods, adjusting serving times, using different dining environments, or using varying plates and cutlery: \u0026ldquo;You try everything, fun colours, shapes but it doesn\u0026rsquo;t help. There is no influence on her at all.\u0026rdquo; (Parent 1). This relentless effort, often met with refusal, led to frustration, fatigue, guilt, and emotional exhaustion.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eConstant concern for the child’s physical and social development\u003c/h3\u003e\n\u003cp\u003eParents expressed deep anxiety about their children\u0026rsquo;s growth, development, and social experiences. They often researched nutrition extensively and tailored meals to maximize intake. One parent expressed concern that the child might not be getting enough nutrition, worrying that \u0026ldquo;her brain is developing a lot, and is she getting everything?\u0026rdquo; (Parent 5). This led the parent to try to learn all about nutrition:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eYou try to learn and read a lot about nutrition and see if she is getting everything since she eats so little. Can we try tofu? Can we do this? Can we cook the food? I've become a kind of food expert so that we can give her the best. So, it's hard work, I must say. (Parent 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eIllnesses worsened ARFID symptoms, sometimes triggering vomiting and regression. One parent described how having a cold led her child to feel \u0026ldquo;the mucus here [points to throat], and then he doesn't want to eat certain foods. Then he starts to gag and vomit\u0026rdquo; (Parent 3). The parent continued to explain:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eHe vomits and vomits and vomits, and then we must start from scratch because he doesn't just vomit up medications. He vomits up the whole meal, and then he has an empty stomach again. A thin little boy who must then get nutritional drinks again, so it has been very hard. (Parent 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e Parents also worried about their child\u0026rsquo;s isolation during social events involving food, as well as the long-term effects on friendships and inclusion. \u0026ldquo;Visiting people's homes is tough. We need to bring food or explain everything. It limits how much we socialize.\u0026rdquo; (Parent 4)\u003c/p\u003e\u003cp\u003e Over time, the worries for their child\u0026rsquo;s development aggravated parents\u0026rsquo; anxiety, pressure, and stress. Many expressed concerns about whether these feeding issues would improve over time. They also worried about the future, especially about their child starting school and potentially facing bullying due to their eating habits.\u003c/p\u003e\u003cp\u003e\u003cb\u003e\u0026ldquo;It\u0026rsquo;s not about forcing\u0026rdquo;: Seeking balance\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis theme reflects the daily dilemmas parents faced, how to encourage eating without creating negative associations or damaging the parent-child relationship. The balancing act entailed choosing between promoting dietary variety or accommodating their child\u0026rsquo;s food restrictions, as outlined in the first subtheme, and between respecting the child\u0026rsquo;s autonomy or adopting a more directive approach, as explored in the second subtheme.\u003c/p\u003e\n\u003ch3\u003eIdeal variety versus pragmatic restrictiveness\u003c/h3\u003e\n\u003cp\u003eParents wanted to introduce variety for nutritional balance but often deferred to the child\u0026rsquo;s preferences to avoid rejection. During more challenging periods, nutritional supplements or preferred foods, even if limited, were prioritized to prevent weight loss and fatigue.\u003c/p\u003e\u003cp\u003eThis pragmatic approach could mean having crisps for dinner or limiting oneself to only one type of food. Decisions of being pragmatic were also grounded in the challenges that arose when the children did not have enough energy, which this participant illustrated well: \u0026ldquo;You must always think through the situation to make sure she eats. A hungry child becomes tired and impatient.\u0026rdquo; (Parent 1)\u003c/p\u003e\u003cp\u003eTo address nutritional gaps during these difficult periods, health professionals recommended compensatory strategies such as food substitutes, nutritional drinks, or supplements. These measures provided parents with reassurance that their child would not go hungry or suffer from nutrient deficiencies due to ARFID. In addition to offering peace of mind, such interventions also helped stabilise the situation - prescription dietary drinks, for instance, played a key role in managing deficiencies and reducing immediate health risks.\u003c/p\u003e\u003cp\u003e Dietitians and psychologists also played a vital role in offering emotional support to parents by creating a safe space where they could share their struggles and receive reassurance that practical deviations from standard dietary guidelines were both understandable and acceptable. One parent described the support they received:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eI talked to a psychologist at the hospital. You feel bad as a parent who only gives him the food he wants, but she [the psychologist] said it was still better that he got something than nothing at all. (Parent 4)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eVoluntary eating versus using feeding strategies\u003c/h3\u003e\n\u003cp\u003eMost parents believed pressure made things worse but admitted to using feeding strategies such as coercion: \u0026ldquo;You don't force her, but sometimes we say: \u0026ldquo;No ice cream unless you try it!\u0026rdquo; Usually, she'd rather go hungry.\u0026rdquo; (Parent 1)\u003c/p\u003e\u003cp\u003eParents also used distraction as a feeding strategy. While using distractions was often helpful, it could also lead to undesirable outcomes, such as preventing children from developing mindful eating habits. One parent described:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eI usually feed her when she isn't aware of it because she is into something else. She closes her mouth, gags, or shakes her head when she realizes she has been fed. And she blatantly refuses. I can't get her to eat. Eventually, she starts crying and wants to leave the table. (Parent 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAnother strategy was to directly reward the child, even when this went against the parent\u0026rsquo;s own principles. This could mean allowing a child to eat in front of a TV or a tablet. One participant described their strategy as a temporary solution:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eIf I feel that nothing works, then he gets it [the iPad], just because he must get solid food and practice eating more. So, I still see it as a small gain that he eats well, then. Then, he can have his iPad for a little while. (Parent 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e Parents also questioned the fine line between encouragement and nagging, especially when it led to conflict or distress. Others found success by involving their children in decisions about food and allowing them to control small choices, such as selecting cutlery or dipping sauce, which helped reduce anxiety and increase motivation.\u003c/p\u003e\u003cp\u003e\u003cb\u003e\u0026ldquo;You feel questioned\u0026rdquo;: Feeling different\u003c/b\u003e\u003c/p\u003e\u003cp\u003e This theme highlights the social and institutional challenges parents encountered, including stigma, misunderstanding, and difficulty accessing support. They perceived others as reacting negatively to their child\u0026rsquo;s eating habits, as described in the first subtheme. Although several parents had positive experiences with healthcare interactions, many also described challenges in obtaining proper support, as discussed in the next subtheme.\u003c/p\u003e\n\u003ch3\u003eExperiencing prejudice and misunderstanding\u003c/h3\u003e\n\u003cp\u003e Many parents described being judged by others, who assumed their child\u0026rsquo;s behaviour stemmed from poor parenting or lack of discipline. As one parent expressed: \u0026ldquo;People think we spoil her or that she\u0026rsquo;s not raised properly. It\u0026rsquo;s frustrating and hurtful.\u0026rdquo; (Parent 5)\u003c/p\u003e\u003cp\u003eMealtimes with extended family or friends often became emotionally charged, prompting some to avoid social settings altogether or hide accommodations like screen time during meals:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eI want nothing more than to sit at the table and have a cozy family dinner, but my child eats more if he eats in front of the TV. I would feel ashamed to tell them this since I know they would question whether children should eat in front of the screen. (Parent 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThese judgments led to shame and self-doubt. Even institutions like preschools sometimes failed to understand ARFID, questioning the child\u0026rsquo;s independence or the parents\u0026rsquo; methods:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eThe preschool might say: \u0026ldquo;Oh, so she does not eat by herself?\u0026rdquo; And we\u0026rsquo;re like: \u0026ldquo;Yeah, we must feed her, otherwise she won\u0026rsquo;t get what she needs.\u0026rdquo; Family and friends might say, \u0026ldquo;What? Isn\u0026rsquo;t she going to eat? Is she that spoiled? Doesn\u0026rsquo;t she like what we\u0026rsquo;ve made?\u0026rdquo; [\u0026hellip;]. They almost act like we\u0026rsquo;ve spoiled her by only making certain foods or by letting her leave the table, like she\u0026rsquo;s poorly raised. That\u0026rsquo;s mostly how people seem to interpret this whole [ARFID] thing. (Parent 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eA lack of understanding from preschool and school staff often leads to children being excluded from the social environment during mealtimes. In some cases, children go hungry at school, leading parents to compensate with food at home \u0026ndash; a task made even more challenging by the complexities of the eating disorder. Breaking eating norms then requires parents not only to work hard to deal with the challenges of ARFID but also to avoid discussing, explaining, and defending their actions and their child\u0026rsquo;s eating habits, contributing to an additional burden.\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eAdvocating for the child in healthcare\u003c/h2\u003e\u003cp\u003eParents described varied experiences with healthcare. Some professionals were supportive and proactive, offering personalised guidance and reassurance. Others seemed dismissive or relied too heavily on growth curves, overlooking the parents\u0026rsquo; daily struggles.\u003c/p\u003e\u003cp\u003ePositive experiences were usually characterised by a collaborative approach to addressing their children's difficulties and a feeling that the provider cared for the child\u0026rsquo;s overall well-being. Parent 3 described how their nurse from child health services called regularly, and asked: \u0026ldquo;How is he doing? Then I talk a bit more generally about him, too, not just about the diet. So, it feels good.\u0026rdquo; (Parent 3)\u003c/p\u003e\u003cp\u003e It was also important for parents to feel heard and validated in their concerns. One participant described how they felt about the nurse from child health services who responded supportively and provided hope:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eThen I called her [the nurse] and said, \u0026ldquo;I want to come in and weigh her because I feel that it has been a tough month.\u0026rdquo; She took me in immediately. When the weight curve showed no progress, the nurse said, \u0026ldquo;Let's start again, and we'll see.\u0026rdquo; She gave me some tips, and we looked at recipes together, deciding to try scrambled eggs. (Parent 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e As Parent 2 described in the quote above, feeling heard and understood helped parents trust their child\u0026rsquo;s caregivers. This sense of trust and support reassured them when eating became problematic.\u003c/p\u003e\u003cp\u003eHowever, not all interactions with healthcare were described as positive. Expressions such as \"being on the warpath\" and \"going on the offensive\" were used in the interviews to illustrate the challenges parents faced in having their concerns about the child\u0026rsquo;s eating difficulties acknowledged. According to the parents, a significant part of their advocacy has been conveying to health professionals that there was a problem with their child's eating. They described situations where they felt unheard and unsuccessful in convincing professionals, which forced them to exert some form of pressure or seek alternative access to specialized care or a proper assessment of the child's condition. Some wished that healthcare providers, childcare services, and schools had been more considerate of their child\u0026rsquo;s unique and challenging circumstances: \u0026ldquo;You already have a battle at home. You don\u0026rsquo;t need another one in healthcare\u0026rdquo;. (Parent 5)\u003c/p\u003e\u003cp\u003eConsequently, many parents felt unheard, and their concerns, observations, and unique situations were dismissed. One parent said: \u0026ldquo;I cried after every visit. I felt bad because nobody listened to what I said. You think you know your child best anyway, right?\u0026rdquo; (Parent 2). Overall, the effort to secure appropriate care and support placed an additional burden on parents.\u003c/p\u003e\u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003e This study explored the lived experiences of Swedish parents raising a child with ARFID, focusing on daily life and seeking support. Parents frequently described feeling isolated, anxious, and misunderstood. Despite numerous interventions, their child\u0026rsquo;s feeding difficulties often persisted, and ARFID gradually came to dominate family life. Mealtimes became a source of ongoing stress, with parents feeling relentless pressure to ensure their child meets basic nutritional needs. Repeated failed attempts to feed their child contributed to feelings of resignation, helplessness, and grief. The added burden of preparing special meals further depleted parents\u0026rsquo; time and energy. These findings are consistent with previous research on paediatric feeding challenges (Fox et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Lindkvist \u0026amp; Russell, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Whitney \u0026amp; Eisler, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e2005\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eBy systematising parents\u0026rsquo; lived experiences, this study provides a valuable resource for healthcare professionals. As reflected in the identified themes, families often seek medical support under considerable emotional strain, with urgent needs and high expectations. Positive healthcare experiences were characterised by collaboration, validation, and acknowledgment \u0026ndash; elements that may be especially critical for parents who feel emotionally vulnerable when engaging with professionals. These findings align with earlier research that highlights parents\u0026rsquo; difficulties in navigating healthcare services (Lamm et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Lindkvist \u0026amp; Russell, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Lundberg et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Muldoon et al., \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e Parents often described feeling exhausted and overwhelmed when seeking help, and many carried a sense of guilt or shame over their perceived failure to help their child. These emotions can act as barriers to effective communication with professionals. This, in turn, highlights the importance of early detection tools to identify ARFID before these difficulties escalate. Promising tools for early screening have already been developed and tested in Japan and Sweden (Dinkler et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Dinkler et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2022a\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA complementary approach to mitigating these challenges could involve recognising and validating parents\u0026rsquo; emotions. Linehan (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e1997\u003c/span\u003e) emphasises that validating guilt and shame can empower individuals. For healthcare providers, this means actively listening to parents and recognising the legitimacy of their experiences. Validation can help de-escalate negative emotions and support more productive conversations and planning.\u003c/p\u003e\u003cp\u003eBeyond the clinical setting, parents reported a lack of social understanding and support, consistent with findings from studies on eating disorders (Eklund \u0026amp; Salzmann-Erikson, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2016\u003c/span\u003e; Fox et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2017\u003c/span\u003e), subclinical eating difficulties (Cunliffe et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2022\u003c/span\u003e), and paediatric feeding disorders (Lamm et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). In the case of ARFID, this lack of support may be particularly harmful, contributing to emotional isolation and compounding family stress. These findings underscore the need for a comprehensive system of support that acknowledges and validates the lived experiences of affected families. Misunderstandings and preconceived notions often arise in school and preschool environments, where collaboration is essential for a child's well-being. When staff lack awareness, children may be excluded during mealtimes, sometimes going without food altogether. This often forces parents to compensate at home, a task made more difficult by the complexities of ARFID. As a result, parents not only face the challenges of managing the disorder but also carry the additional burden of justifying their choices and shielding their children from judgment.\u003c/p\u003e\u003cp\u003eWhile professional validation is essential, peer support can also play a meaningful role. Parents of children with mental health conditions, including eating disorders, express a strong need for peer support groups - yet this need remains largely unmet within current healthcare models (Martin et al., \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2024\u003c/span\u003e). For parents of children with ARFID, support groups could offer a safe space to share experiences, reduce isolation, and learn from others. Prior research shows that such groups can foster empowerment, understanding, and relief (Fox et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e\n\u003ch3\u003eSTRENGTHS AND LIMITATIONS\u003c/h3\u003e\n\u003cp\u003eThis study aimed to offer a methodologically robust and conceptually thoughtful contribution to the growing body of research on ARFID. By adopting a critical realist epistemology and applying Braun and Clarke\u0026rsquo;s well-established flexible approach to thematic analysis, we provide a transparent and reflective interpretation of the data.\u003c/p\u003e\u003cp\u003eThe study demonstrates strong clinical relevance. By centring parents\u0026rsquo; lived experiences, it sheds light on the day-to-day challenges of supporting a child with ARFID \u0026ndash; an area often overlooked in clinical practice. The insights gained can meaningfully inform the development of more responsive and family-centred care strategies.\u003c/p\u003e\u003cp\u003eImportantly, we address an unexplored aspect of ARFID. While much of the existing research on ARFID focuses on diagnostic and clinical aspects, this work highlights the relational and emotional dimensions of the condition from a parental perspective. In doing so, it lays a valuable foundation for future research and the design of more family-centred interventions.\u003c/p\u003e\u003cp\u003eHowever, some limitations should be noted. First, while the study aimed to provide transferable insights, caution is warranted when generalizing the findings. Most participants were mothers. Consequently, the experiences of fathers are underrepresented. Nonetheless, given that mothers often take on the primary caregiving role, their perspectives remain highly informative.\u003c/p\u003e\u003cp\u003eSecond, the children varied in age, which may have influenced how they and their parents experienced ARFID. At the same time, this diversity allowed for a more comprehensive view of how ARFID manifests across early childhood.\u003c/p\u003e\u003cp\u003eThird, ARFID is a heterogeneous condition, and while shared themes were identified, notable individual differences were also observed. For instance, some parents prioritized dietary variety, while others focused on ensuring energy intake through supplements or preferred foods.\u003c/p\u003e\u003cp\u003eLastly, cultural and systemic differences, such as healthcare systems and parenting norms, may affect the transferability of findings to other countries and contexts. These factors should be considered when applying the results beyond Sweden.\u003c/p\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eARFID is often mistaken for a phase of extreme picky eating or attributed to poor parenting. These misconceptions can leave parents feeling ashamed and guilty, especially when compounded by a healthcare system that may lack adequate knowledge or resources for supporting children with ARFID.\u003c/p\u003e\u003cp\u003e Parents in this study described tireless efforts to advocate for their children while facing conflicting advice, minimal support, and widespread misunderstanding \u0026ndash; experiences that were deeply exhausting and emotionally draining.\u003c/p\u003e\u003cp\u003eAddressing these challenges requires improved training and greater awareness of ARFID among primary care providers. Early identification is crucial and depends on the availability of clear clinical guidelines and educational tools to enable timely and effective intervention. Equally important is the inclusion of parents\u0026rsquo; lived experiences in the development of detection and intervention strategies. This approach can ensure that care systems are better equipped to meet the real-world needs of affected families.\u003c/p\u003e\u003cp\u003e Establishing detailed national guidelines for children and adults with ARFID is essential to standardise care and ensure consistency across healthcare settings. The challenges identified by parents in this study highlight areas that clinicians and therapists should address to strengthen support for families.\u003c/p\u003e\u003cp\u003eReliable screening tools should be developed and widely implemented to support early identification. Ensuring access to multidisciplinary teams with expertise in ARFID is also critical for delivering comprehensive, coordinated care.\u003c/p\u003e\u003cp\u003eFuture research should focus on developing and evaluating evidence-based interventions tailored to the unique needs of patients with ARFID and their families. Such efforts are crucial for enhancing treatment outcomes and reducing the burden on those affected by the disorder.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003ch2\u003eConflict of interest\u003c/h2\u003e\u003cp\u003eWe report no conflicts of interest.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003ch2\u003eInterview guide\u003c/h2\u003e\u003cp\u003e Guidelines for the interview\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e\u003cp\u003eSwedish Research Council (Vetenskapsr\u0026aring;det; R\u0026aring;stam, 2018\u0026ndash;02544; Gillberg, 538-2013‐8864); Swedish Brain Foundation (Hj\u0026auml;rnfonden) with support from Ulf Lundahls Minnesfond, Susanne Hobohms Stiftelse, and Team Rynkeby (R\u0026aring;stam, FO2020-0140, FO2022-0094), Stiftelsen Petter Silverski\u0026ouml;lds Minnesfond (Brimo, 2024\u0026thinsp;\u0026minus;\u0026thinsp;564). The funding bodies were not involved in the design of the study; collection, analysis, interpretation of the data; or writing of the manuscript.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAuthor ContributionsConceptualisation/design: Dinkler, Nystr\u0026ouml;m, Brimo, Holm\u0026auml;ng, R\u0026aring;stamFunding acquisition: R\u0026aring;stam, Dinkler Data acquisition: Cardona CastroData analysis: Cardona Castro, Brimo, LundbergSupervision: Nystr\u0026ouml;m, R\u0026aring;stamWriting\u0026ndash;original draft: BrimoWriting\u0026ndash;review and editing: All authorsApproved submitted version: All authors\u003c/p\u003e\u003ch2\u003eAcknowledgements\u003c/h2\u003e\u003cp\u003eWe thank the participants and personnel at Sk\u0026aring;ne University Hospital for their assistance with data collection.\u003c/p\u003e\u003ch2\u003eData Availability Statement\u003c/h2\u003e\u003cp\u003eData will be made available by the authors upon reasonable request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAmerican Psychiatric Association. 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Mental and Somatic Conditions in Children With the Broad Avoidant Restrictive Food Intake Disorder Phenotype. \u003cem\u003eJAMA pediatrics\u003c/em\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"ARFID, eating disorders, feeding problems, child healthcare, parent experience, qualitative research, thematic analysis","lastPublishedDoi":"10.21203/rs.3.rs-7402647/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7402647/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eA child with avoidant/restrictive food intake disorder (ARFID) has a diet so limited that it leads to medical, nutritional, and/or psychosocial problems. ARFID affects both children and their families, often causing parents to feel anxious and isolated. This study aimed to explore the experiences of Swedish parents raising a child with ARFID.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e\u003cp\u003eData were generated through semi-structured interviews with six parents of children diagnosed with ARFID. All children were undergoing treatment for ARFID at a paediatric healthcare clinic. The interview material was transcribed and analysed using thematic analysis with the NVivo 14 software.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eThe analysis resulted in three themes: (1) \u0026ldquo;It\u0026rsquo;s hard work\u0026rdquo;: ARFID dominating life, (2) \u0026ldquo;It\u0026rsquo;s not about forcing: Seeking balance, and (3) \u0026ldquo;You feel questioned\u0026rdquo;: Feeling different. All themes highlighted the complex and demanding reality that parents faced. A significant part of the families' daily lives revolved around managing the eating disorder, with parents facing numerous challenges related to their child\u0026rsquo;s eating difficulties. Parents attempted to strike a balance between planning and improvisation to manage mealtime stress and unpredictability. They struggled to understand their child\u0026rsquo;s eating habits, facing ongoing tension between promoting variety and accepting restrictions, as well as between voluntary eating and using pressure. Constant worry about the child\u0026rsquo;s health and development was compounded by a lack of understanding from others and difficulty accessing appropriate care and support.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eThere is a need to raise awareness of ARFID and its related difficulties in early childhood. Educational support and detailed clinical guidelines for healthcare providers should be developed and implemented to enhance patient care. Parental experiences can serve as a valuable knowledge base for improving early detection and intervention strategies for children with ARFID.\u003c/p\u003e","manuscriptTitle":"“It's about survival, love and care” – Parents’ experiences of living with a child with ARFID: a Swedish interview study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-04 18:46:42","doi":"10.21203/rs.3.rs-7402647/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-09-30T16:08:37+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-30T15:21:52+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-12T12:27:24+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"27493818275076717489701569022909144501","date":"2025-09-02T08:17:44+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"197729860419724671753326463889355915508","date":"2025-09-01T10:49:37+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-08-27T15:02:05+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-08-21T06:05:11+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-21T06:05:04+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Eating Disorders","date":"2025-08-18T20:07:43+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"a8e2dfb7-8a50-4842-a83b-9735e2a39096","owner":[],"postedDate":"September 4th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-22T16:14:12+00:00","versionOfRecord":{"articleIdentity":"rs-7402647","link":"https://doi.org/10.1186/s40337-025-01479-5","journal":{"identity":"journal-of-eating-disorders","isVorOnly":false,"title":"Journal of Eating Disorders"},"publishedOn":"2025-12-16 15:58:17","publishedOnDateReadable":"December 16th, 2025"},"versionCreatedAt":"2025-09-04 18:46:42","video":"","vorDoi":"10.1186/s40337-025-01479-5","vorDoiUrl":"https://doi.org/10.1186/s40337-025-01479-5","workflowStages":[]},"version":"v1","identity":"rs-7402647","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7402647","identity":"rs-7402647","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}