Obtaining an Avoidant Restrictive Food Intake Disorder diagnosis in The UK for Individuals with Intellectual and Developmental Disabilities: A Qualitative Study of Families’ Experiences

Obtaining an Avoidant Restrictive Food Intake Disorder diagnosis in The UK for Individuals with Intellectual and Developmental Disabilities: A Qualitative Study of Families’ Experiences | 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 Obtaining an Avoidant Restrictive Food Intake Disorder diagnosis in The UK for Individuals with Intellectual and Developmental Disabilities: A Qualitative Study of Families’ Experiences Jonah Jirehl Desalesa, Suzy Mejía-Buenaño This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3824107/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background The prevalence of Avoidant Restrictive Food Intake Disorder (ARFID) is generally low among the eating and feeding disorders population. The complexity of the diagnosis, along with its potential comorbidities (e.g., Intellectual and Developmental Disabilities), had led to difficulties in diagnosing ARFID, with limited support and treatment available. This study therefore asked families with lived experience of the ARFID diagnostic process and their access to support for diagnostic evaluation and understandings of available support. Method Data was collected through a qualitative approach using online semi-structured interviews investigating eight participants’ experiences of their children undergoing the ARFID diagnostic process and their access to support. Responses were subjected to thematic analysis. Results From thematic analysis, three major themes were identified: the ups and downs of diagnosis, pushing for support, and looking into the future. Conclusions Participants’ experiences surrounded the ‘lucky’ encounters with the ARFID diagnosis, where the limited support was emphasised. The findings highlighted the need for an improved ARFID diagnostic process for better awareness and support availability for families living with ARFID. Recommendations from study findings were provided for readers and researchers. ARFID diagnostic process family experiences Intellectual and developmental disabilities Plain English summary The study investigated families’ experiences of their child with intellectual and developmental disabilities obtaining an ARFID diagnosis in the UK. Participants interviewed described the pros and cons of the ARFID diagnosis, with differences in the actual diagnostic process. Many said they came to know ARFID from professionals, and some have independently researched ARFID. They were pleased with how professionals assessed ARFID quickly, but also acknowledged how hard it is to get an ARFID diagnosis. Some participants stated cases of good support, but most identified the limited support and battles from schools, support services as well as families. All participants were hopeful for a better lifestyle in the future with ARFID. From the experiences heard, recommendations were considered for promoting awareness as well as future family-involved research and treatment. This study hoped to enlighten the families and professionals of the lived experience with ARFID, and how the diagnostic process and support had affected families. Introduction In 2013, Avoidant Restrictive Food Intake Disorder (ARFID) was introduced into the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5) within Eating and Feeding Disorders. ARFID is an eating or feeding disturbance that leads to significant weight loss or unable to attain expected weight gain, nutritional deficiency, a necessity towards enteral feeding or oral nutritional supplements, and interference with one’s psychosocial functioning [ 1 , 2 ]. Although there are some similarities between ARFID and anorexia around physical symptoms, particularly nutritional deficiency, there is no psychological concern with body dysmorphism, and weight maintenance associated with ARFID [ 1 ]. Individuals with ARFID commonly display signs of emetophobia (i.e., fear of vomiting), negative physiological effects, food avoidance due to sensory issues, and may have comorbidity with mood disorders, anxiety disorders and they may be autistic [ 3 , 4 ]. ARFID has been found also prominent in the youth population (i.e., children, adolescents) but can still progress into adulthood [ 5 , 6 , 7 ]. The DSM-5 was relied on when diagnosing ARFID since the 10th International Classification of Diseases and Related Health Problems (ICD-10) did not include the diagnosis. Studies have indicated that the DSM-5 was able to demonstrate strong inter-rater reliability when diagnosing ARFID, especially within a paediatric gastrointestinal sample, where the prevalence of ARFID was considerably low compared to other feeding and eating disorders [ 8 ]. Additionally, there have been diagnostic assessments produced to evaluate the presence and severity of ARFID as well as Pica and Rumination Disorder; all which have been newly added to the DSM-5. For instance, the Pica, ARFID and Rumination Disorder Interview (PARDI) was created and used to assess common ARFID characteristics. The diagnostic assessment tool was effective, demonstrating moderate inter-rater reliability and significantly scoring higher on severity and profile for individuals with ARFID compared to healthy controls [ 5 ]. More recently, research has revealed the strong factor structure and validity of PARDI, indicating that a strong assessment tool for ARFID [ 9 ]. Some researchers have indicated that obtaining a diagnosis for ARFID may be influenced by other neurodevelopmental conditions, like Intellectual and Developmental Disabilities (IDD) [ 10 ]. According to the American Association on Intellectual and Developmental Disabilities (AAIDD), intellectual disability was defined as “significant limitations both in intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical adaptive skills” (p. 1) [ 11 ]. In terms of developmental disabilities, the Centers for Disease Control and Prevention (CDC) [ 12 ] defined this as “impairment[s] in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime” (p. 224) [ 13 ]. Developmental disabilities could include Attention Deficit Hyperactivity Disorder (ADHD), autism, as well as other developmental delays [ 12 ]. Feeding difficulties are common amongst people with IDD [ 14 ]. It is theorised that ARFID may be more severe when presented with increases in hypersensitivity and rigidity towards foods [ 15 ]. In terms of co-occurrence, studies have found that around a third of the IDD population also had ARFID [ 4 , 16 ]. With regards to autistic individuals, it was evident that selective eating was highly prevalent alongside the condition, whereby selective eating could be one of the core symptoms of autism with descriptions of repetitive or restrictive behaviour as well as sensory sensitivities around feeding [ 15 ]. Research has also found that severe SE was an indication in the development of symptoms relating to ARFID [ 15 ], which could insinuate potential links between autism and ARFID. Before publication of the DSM-5, it was not noticeably explained or understood what features and symptoms were covered within this disorder [ 17 ]. At times, there were difficulties in separating ARFID symptoms due to symptom overlap with autism due to shared similarities around feeding sensitivities and behaviours [ 18 ], which could often lead to struggles in diagnosing ARFID. Additionally, due to the low prevalence rate of ARFID among other feeding difficulties, ARFID is portrayed as a small disorder compared to mainstream eating and feeding disorders. This was evident in a study that found only 14% of cases were diagnosed with ARFID at a specialist clinic for eating disorder treatments [ 3 ]. Although there has been increased awareness around ARFID recently, misunderstandings among health professionals are still presently occurring. Studies have explored the understanding of professionals around children’s restrictive feeding behaviours though diagnostic consensus, discovering no consensus on the diagnosis and treatment of ARFID [ 19 ]. Consensuses for diagnosis and treatment are important as they enable collaborative and multidisciplinary approaches to determining signs and symptoms [ 19 ], leading to agreed appropriate treatments and support for individuals with ARFID [ 20 ]. Additionally, research into children with ARFID found that paediatricians had difficulties in accurately diagnosing ARFID. Research evidence has discovered that out of 657 paediatricians, only 7% diagnosed ARFID correctly. Other paediatricians had overlooked ARFID, misdiagnosing individuals with another disorder [ 21 ]. It was also found that 60% of paediatricians are unfamiliar with the diagnosis, which illustrates the inadequate knowledge of ARFID, resulting in difficulties in diagnosis [ 21 ]. Similar situations were revealed in the UK. For example, research has examined the barriers to effective healthcare for individuals with ARFID. Professionals demonstrated the need for more education and training around ARFID to effective diagnosis and treatment. The need for ARFID-specific care pathways was proposed to which professionals can appropriately assess, diagnose and support ARFID [ 22 ]. So far, the literature illustrates how ARFID has had inconsistent and inaccurate diagnostic processes, in which most professionals have not heard of ARFID. In turn, this will have had an impact on individuals with ARFID and their families in terms of accessing support from services. For over ten years the support for ARFID in the UK has been scarce. Due to the diagnosis being relatively new, professionals have had a difficult time understanding the characteristics of the disorder, where little is known about efficacious treatments [ 23 ]. Plenty of studies have recommended that there should be increased awareness for ARFID from clinicians in order to avoid leaving individuals with ARFID untreated [ 24 ] as well as improve or produce good quality assessment tools [ 25 ]. Despite these limitations to accurately diagnosing ARFID, there are some successful treatments for ARFID. There has been some research into the use of Cognitive Behaviour Therapy for ARFID (CBT-AR) to reduce symptoms of ARFID for individuals [ 26 , 27 ] Also, studies have illustrated how the applications of in vivo exposure, systematic sensitisation and cognitive restructuring techniques resulted to improvements in physical and psychological wellbeing (e.g., increase in weight, decrease in food anxiety) [ 28 ]. Recently, most treatments also include supporting and training primary caregivers on behavioural-analytical interventions to be implemented for the individual with ARFID. These interventions consider their increase of safety food range, food intake, and improved mealtime behaviour; even when accounting for their IDD [ 29 , 30 ]. Research has also found that families, particularly parents, are highly valued when it comes to supporting their child with ARFID. In such cases where parental support is required for the individual with ARFID, high parental satisfaction and acceptability of treatment is necessary for an effective implementation of treatment and support provision [ 30 ]. Evidence also indicated that professionals can support parents through utilising parent feeding strategies. An optimistic expressive environment during the parent feeding strategy was found to aid in reducing psychosocial impairment and food avoidance [ 31 ]. Additionally, family-based therapies have increasingly been popular for when treating ARFID. Recent studies have demonstrated feasibility of conducting family-based treatments for ARFID [ 32 , 33 ]. This signifies an encouragement in including families in the support and treatment of individuals with ARFID. To date, there is little research examining family experiences of the ARFID diagnostic process. Consequently, the study conducted aimed to explore families’ experiences of going through the ARFID diagnostic process for an individual with IDD in the UK. The research questions were as follows: What are families' experiences of going through the ARFID diagnostic process in the UK? What was the impact on families of obtaining an ARFID diagnosis in the UK? What do families report about their experiences with support services for ARFID in the UK? What suggestions do families provide about ARFID diagnosis and support in the UK? Method Design This was an exploratory study that undertook a qualitative approach to investigate family experiences of obtaining an ARFID diagnosis for an individual with IDD in the UK. Semi-structured online interviews via video and audio platforms (i.e., Microsoft Teams) were carried out, recorded, and stored securely in Stream. These were then transcribed, and the data were thematically analysed. Interviews were semi-structured to allow the collection of in-depth qualitative data from participants. Participants Eight participants were recruited via relevant mailing lists and social media with the use of a research poster. The study undertook a purposive sampling method based on predetermined criteria. To be included, participants had to be fluent in English as there was no funding was provided for this study, so provision of translators were not possible. Participants had to also be classified as a primary care giver (PCG) to the individual with IDD diagnosed with ARFID (e.g., parent, relative). In terms of IDD, autistic individuals, and genetic and general conditions that display cognitive, intellectual, or developmental delays were included. The child being discussed also needed to have been formally diagnosed with ARFID. Table 1 and Table 2 present the demographic information of parents and their child with ARFID, including their additional diagnoses. Table 1 Participant characteristics. Characteristic Category Number of participants (%) n = 8 Gender Female 8 (100%) Race/ethnicity White British 7 (87.5%) Indian British 1 (12.5%) Age (in years) 35–45 5 (62.5%) 46–55 3 (37.5%) Number of individuals with ARFID participants cared for 1 8 (100%) Table 2 Child characteristics. Characteristic Category Number of children (%) n = 8 Gender Male 7 (87.5%) Female 1 (12.5%) Age (in years) 6–10 4 (50%) 10–19 4 (50%) Diagnoses Autism 4 (50%) Global developmental delay 3 (37.5%) Learning disability 2 (25%) Rare chromosomal or genetic disorder 2 (25%) Downs Syndrome 1 (12.5%) Microcephaly 1 (12.5%) Measures and Procedure Information about the research was disseminated through relevant mailing lists and social media. Individuals that contacted to take part were pre-screened in relation to the inclusion/exclusion criteria. Eligible participants were sent the study information sheet, along with a consent form and demographic questionnaire. After obtaining informed consent, the researcher (first author) and participant scheduled a time and date convenient to both parties, and a Microsoft Teams (MS) link for the interview was sent to the participant. Participants were reminded of their right to withdraw from the study at any time, without reason or consequence from leaving. Interviews for each participant took approximately 1-1.5 hours to complete. All relevant topics were covered using an interview schedule whilst utilising further probes. Lastly, participants were debriefed of the study objectives and then signposted to emotional support services if requiring further support (e.g., ARFID Awareness UK, Feeding Matters resources). After the interview, the recording of the interview was securely stored onto Stream. Interview data was then transcribed and analysed. Participants were also emailed a summary of study findings after study completion. Analysis The analysis followed the six stages of thematic analysis as outlined by Braun and Clarke [ 34 ]. Thematic analysis is a qualitative process frequently used to analyse patterns of data and derive relevant themes from interview material to explain phenomena [ 35 ]. Thematic analysis was also deemed appropriate since this was exploratory research that followed an inductive process to coding and analysis and sought to identify patterns across participant experiences, rather than research that aimed to generate a theory (e.g., grounded theory) or explore individual participant experiences in depth (e.g., interpretative phenomenological analysis). As such, thematic analysis was appropriate for this study as it produced consensual themes and amalgamated an understanding from the families’ perspectives on obtaining their ARFID diagnosis. Ethical considerations This study received ethical approval from the Tizard Centre Ethics Committee at the University of Kent, Canterbury. During the interview, participants were informed of their right to withdraw from the study at any point during the interview without consequence. Since it was deemed that participants might become distressed when discussing their child’s ARFID, it was outlined that if the participant was distressed at any point, the researcher would stop the interview and ask the participant if they would like to stop, pause or continue later. This did not occur at any point during the interviews. As with any online research, it was possible that participants’ personal data might be exposed if there was a data leak. To mitigate this, MS Teams was used due to its highly secure system for data storage (e.g., Stream, which is linked to a university account which required two-factor authentication to access). During transcription, personal information about participant identities were anonymised into pseudonyms and codes. All data was stored in a password-protected file in a password-protected laptop, with sole access by the authors. Pseudonyms are used throughout this report. Reflexivity The first author has a background in working with the IDD population, and as such has a personal and professional interest in the topic. The second author’s PhD research focused on feeding difficulties amongst children with IDD and she has also worked clinically with children with IDD and their families. As such, the research team had a strong knowledge about IDD. The second author provided supervision to the first author in relation to carrying out qualitative research and subject specific considerations (e.g., feeding and families). The subject matter, however, was a sensitive topic to disclose about, where participants evoked emotional reactions to traumatic experiences. Consequently, a certain degree of professional rapport was established by the first author before the interview, though, the ability to stay neutral during the emotive experiences was difficult, as the first author exhibited compassion for families and dismay towards supporting professionals. Due to the influence of participants’ experiences on the first author, it was difficult to remain neutral throughout the analysis process, however the supervisory input of the second author supported the first author with managing this complex balance, that ultimately allowed for rich analysis of the data. Results This study sought to explore participants’ experiences of going through the ARFID diagnostic process for their child with an IDD in the UK. Table 3 illustrates the themes and subthemes which will be explored further in this section. Table 3 Themes, Accompanying Subthemes and Main Codes Revealed from Thematic Analysis Themes Subthemes Theme 1: The ups and downs of diagnosis The initial stage Advantages of diagnosis Difficulties of diagnosis Theme 2: Pushing for support Reflections of good support Where’s the support? Damaged trust Theme 3: Looking into the future ‘Spreading the word’ Living well with ARFID? ‘You are not alone’ Theme 1: The ups and downs of diagnosis Participants displayed varied feelings about the ARFID diagnostic process. The diagnostic process's merits and faults were highlighted. Three major subthemes depict the discussion around first acquiring an ARFID diagnosis, why it was beneficial, and the reasons for certain complications. Initial stage Some participants reported hearing about ARFID after consulting a variety of healthcare professionals including “paediatricians” (Belle), “clinical psychologists” (Ivy) and “gastroenterology consultant[s]” (Nancy). One participant described learning about ARFID from a specialised trainer for schoolteachers working in a specialty setting: Ruby: “It was somebody that comes in to do training at the school, training the teachers… because school were like really confused about what to do about Mia’s eating… so they mentioned it to him… he said, ‘Look up ARFID’ … and I’ve read it and I thought, ‘my God, this is Mia’.” Clearly, families reported learning about or receiving information about ARFID from a variety of professionals. Participants also illustrated that those different professionals could work together to confirm the diagnosis: Daisy: “They did a comprehensive assessment of his sensory needs… he was off the charts really with everything in terms of quite a high level of sensory need. And within a month or two we had a report from the multidisciplinary team saying ‘Yes… we feel confident that this is ARFID’.” In contrast to participants who learned about ARFID from professionals, some reported learning about ARFID by accident: Harriet: “We came across ARFID sort of accidentally. We watched a Channel 4 programme …and they mentioned ARFID, and it just ticks so many boxes with us.” In terms of the assessment duration, participants had differing lengths for assessment time, from under an hour to half a day assessments. There were also noted differences in the ways in which ARFID was assessed, with some participants completing this via phone and others having professionals spend the day in their house. Although the diagnosis method differed in terms of assessment, there was a perception among participants that the ARFID diagnostic approach had advantages. Advantages of diagnosis Participants delved into the benefits of receiving an ARFID diagnosis in relation to the diagnostic process, such as the comfort they received after obtaining this diagnosis, the support the diagnosis allowed them to access and the fuel it gave them to learn more about ARFID. Some participants regarded the procedure of acquiring an ARFID diagnosis to be "actually simple" (Ruby) in terms of assessment, though as noted previously, diagnostic processes might differ. Participants also described a sense of comfort after receiving the ARFID diagnosis since they now knew what their child was going through: Harriet: “When we got it, I felt relieved because…it meant that we actually had something to say, ‘Look, he’s been diagnosed clinically by this’. …He needs the support and I think without this diagnosis, you don’t get more support. You don’t get the empathy. And you don’t get the understanding.” Additionally, there was a feeling that obtaining an ARFID diagnosis could be powerful when trying to access support: Daisy: “It gives you some protection and it enables you to advocate for your child better because they've got a diagnosed condition.” Importantly, participants highlighted the importance of luck in the diagnostic process. For instance, in terms of waiting lists, Rose reported being “really lucky. It was only about three months at the time… it’s back to years”. Alternatively, Belle reported that her luck with obtaining the diagnosis was due to “other medical things” being present alongside ARFID traits. From a financial perspective, Harriet considered herself lucky “because they had some money from her previous job”, which led to being able to undertake a ‘private’ approach for diagnosis and support. Moreover, participants signified that having the diagnosis led to the desire “to go and research more” (Harriet) to increase their early understanding of ARFID. There was also a sense that learning about ARFID themselves could support in educating other families about ARFID: Florence: “It helps you understand as a parent that you can educate extended family members as well that may have them for the weekend or whatever.” While there was some positivity from participants about the ARFID diagnostic process, not all families shared the same experience of the diagnosis as a strong instrument for support. Difficulties of diagnosis Some participants described various difficulties encountered within the diagnostic process. These primarily related to the difficulties associated with obtaining an ARFID diagnosis in the first place, including the intricacies of private versus public assessments and diagnoses, and specific IDD issues like diagnostic overshadowing. Between participants, there have been two procedures undertaken to obtain an ARFID diagnosis: the public route and the private route. This means either going through the public sector organisation for a free diagnostic assessment or going privately and paying for the diagnostic assessment. Those who went private spent a lot of money and have asked help from “the main ARFID lady” or “the Queen of ARFID”, as Nancy describes her: Ruby: “I went direct to [professional] privately as opposed to going through the system. I just literally emailed her privately and explained the history and said, ‘Can you help and how much would it cost or whatever?’. A grand. Paid it all privately myself so I didn't have to sort of jump through hoops of funding.” Participants expressed differing reasons for taking a private approach to diagnosis. For example, a participant described the need to go private due to their locality and how there is no one to diagnose and support individuals with ARFID in their area. Further compounding the challenge to obtaining a diagnosis were the financial limitations described: Harriet: “It’s not something that most people can do, and it’s not fair because people don’t have equal access.” Additionally, even though private diagnoses were described as reducing the waiting time drastically, participants described waiting times still existing for private diagnoses. Importantly, participants described mixed experiences with accessing support after obtaining a private diagnosis: Nancy: “[Professional] diagnosed and then we sent back to his [public sector organisation] clinic… So we only ever had to pay for the one consultation and then everything else after that was done was through the actual [public sector organisation] clinic.” Harriet: “The diagnosis that we got because it was private, was invalid. And we had to get a diagnosis through the [public sector organisation] for it to be considered. So that was frustrating.” One participant described the difficulties other families may face when seeking to obtain a formal diagnosis, since services providing an opinion about the presence of ARFID, but not a clinical diagnosis: Harriet: “It was about asking the right questions for a diagnosis, whether or not it be accepted because a lot of people will offer a diagnosis which isn't a real diagnosis… There was a place in [location] that I contacted saying if you diagnose him, ‘Oh well, we can't actually clinically diagnose it, but we can say he’s got it’. And I was like, ‘Well, that's no good’. So I think a lot of people may have fallen into that trap.” In terms of feeding behaviour, there was also an impression that professionals tended to demonstrate diagnostic overshadowing by emphasising co-occurring conditions as an explanation rather than the ARFID diagnosis: Harriet: “A lot of professionals are also reluctant to diagnose ARFID with the autism… because a lot of them will just say, ‘Oh, it's down to the sensory issues around autism’… and I think that's down to misunderstanding as well… 'cause a lot of children are – probably do have ARFID, but they’re saying now ‘it's just autism’.” Although the diagnostic process was clearly valuable for some participants, this appeared to be dependent on factors such as the locality and availability of services that can diagnose as well as provide the necessary support. Theme 2: Pushing for support Clearly, receiving support for ARFID is important for families, and some families in this study described some examples of good support they had received. Of importance, however, is the stark difference between participants, with many describing a lack of support for ARFID. Finally, participants described damaged trust in the support they receive for their child with ARFID. This theme therefore examined the support families received, and the extent families described needing to push for support. Reflections of good support Participants provided a well-balanced description of ARFID by also describing the various ways in which professionals have delivered good support for individuals with ARFID and their families. One parent described the clinical support they received from professionals after obtaining the diagnosis: Nancy: “It did open up some channels for further treatment for sure…It's meant that we've been able to get into the feeding clinic, which we're hoping is gonna be able to start helping him and also it meant that we got a different dietician anyway because, with the tube feeding, we needed someone different. And so, she's working with us to try and build up his tolerance of food and things like that.” Some participants described their experiences of parent feeding strategies (e.g., “You could see the iPad. OK, if you refuse to open your mouth, it goes away. Open it. It comes back”, Rose) as well as implemented therapy for their child with ARFID: Harriet: “We started CBT therapy with them … it was all private… we spent all our savings on it. And it had a little bit of effect on him. We managed to get his weight up to 30.5kg and he grew. So, it did make an effect.” Alternatively, some participants experienced good support demonstrated by their SEN schools in the form of support with supporting the children to eat different various foods: Ruby: “She goes to a lovely special needs school… she's allowed to go up… to the dinner lady, “I wanted a little bit of this, little bit of that.” So that got her to start eating a few more different sorts of food… But it's only in that one setting, not anywhere else.” Likewise, Rose had school support through having an educational healthcare plan to meet the needs of her child with ARFID. Interestingly, during mealtimes, participants discovered that being “distracted” (Belle) was useful for their child with ARFID, where attention diverted to something else other than the food: Daisy: “Noah tends to eat when he's distracted. So if he's… watching something on the television or something like that, that's when he's most comfortable eating.” Generally, participants described some support around food consumption, however this was contrasted with participants who also described that “there isn’t a huge amount” (Daisy) of support for ARFID. Where’s the support? This subtheme encompasses the missed or inadequate support families with ARFID that participants described experiencing. The scarcity of support was not only described within clinical settings but also in educational settings: Harriet: “We had to go through the educational healthcare plans with school because there’s so much for school, but…they've not supported him at all with his eating and I think that's why he's plummeted…because they don't understand it. They just said, ‘Oh well, he’ll eat when he's hungry’ [laughs].” One participant explicitly reported their negative view of support in their area: Florence: “I’m absolutely appalled at our services in [location], even down to the dietitian. Now, when [public sector organisation] discharged Oliver and in a nutshell, they only discharged Oliver because they felt there wasn't anything else they could do.” This was significant, as Florence described feeling that the public sector organisation only discharged her son when they did not feel they could do anything further for him, not when he had demonstrated a clinical improvement with his ARFID. Further to this, participants described support being offered to understanding overarching diagnoses, rather than ARFID itself: Nancy: “Everything is put down to the global delay… they just say, “Oh well it's all down to that and his sensory difficulties”. I've always been just underpinned by it. And I think in general doctors tend to just try and brush it under the carpet.” There was a sense that support was inadequate due to professionals having the “lack of willingness to acknowledge” (Rose) the complexity of what the ARFID diagnosis entailed or understanding of ARFID, and how they can support someone with ARFID. Unfortunately, even with ARFID diagnosed, one participant described receiving no support from the multidisciplinary team. One participant clearly outlined the damage that professionals could cause by providing advice about supporting a child with ARFID, without being informed about ARFID: Ruby: “A new social worker who… did not understand ARFID at all … [said that] Mia’s not gonna eat if you sit there and watch her eat. So, this went on for a few months and Mia’s weight had dropped… she’s gone down to three foods, and she had to go back on feeds. That's because you have one professional come in, doesn't know what they're talking about with ARFID. They'd do this, do that, and all the rest of it, and did so much damage just in six months.” Participants described a sense of pressure in establishing support for their child, before and after obtaining the diagnosis of ARFID. For some families, this was described as leading to the breakdown of relationships between professionals and participants, as well as their families and friends. Damaged trust This subtheme explores the damaged relationship between participants and professionals as well as with their families, concerning the support they received before and after obtaining the ARFID diagnosis. Most participants indicated that it was a “traumatic” (Daisy) experience having issues with ARFID and comorbidities, and to have no help for it: Ruby: “Mia’s case is very complex, because of the trauma of surgery, the trauma of being very sick as well as the sensory issues with autism, and because it's been allowed to go on for 17 years without any intervention.” For others, ARFID was believed to have originated during traumatic experiences with food during times when they were receiving support with feeding: Ivy: “He actually choked when he was… almost three years old, during a speech and language feeding programme. And there's your origin of ARFID… his real fear of gagging from that choking incident was just… it was irreparable really. It was very traumatic.” Also, families described constantly putting pressure on professionals to ensure the provision of support required for their child: Nancy: “Yeah, we basically had to fight for everything we’ve got and you kind of wait months and months for it to come.” This pressure for support appeared to be something participants had experienced previously but also currently: Belle: “We’re now still fighting for support.” Furthermore, there were some disagreements within families. Rose described not being listened to by some professionals, her own family and her spouse. She believed that she was the only one to see her child’s eating habits, and as a result was called “a crazy woman”, negatively affecting her mental health. She described that the clinical psychologist supporting the family with ARFID stepped in and helped her to maintain strong-will for her child: Rose: “It wasn’t necessarily just working with him, she was working with me… empowering the family and how to move forward with ARFID basically.” Although there was some help in trying new foods and increasing the food safety net of the child with ARFID, this occasionally backfired and instead led to food avoidance: Nancy: “The advice you get from dietitians is totally awful really [laughs] and it doesn’t match the way these kids work. ‘Oh, don't give him what he wants… he’ll eat it if he's hungry’. But with the ARFID… you need to have the safe food there… and not to give them anything that they're gonna really hate’. Because… he’s gonna refuse everything.” And so, participants felt that experimenting with safe foods was not the answer it will create “an even bigger problem” (Florence). This leads to the notion that there is distrust with others supporting the person with ARFID as they may have the wrong approach or advice. This was supported by most participants, where most of the knowledge around support comes from the actual families with ARFID: Nancy: “You trust these people to give you the right advice? They’re the ones that are trained. But actually, they're not always the ones that have the greatest knowledge. You end up being the one that tells them what is.” Theme 3: Looking into the future While the support was generally described as inadequate, the negative experiences of support became learning curves for participants. The awareness of their experiences of support provides some knowledge and understanding of what to expect when obtaining an ARFID diagnosis for future families who will have to deal with ARFID, which is discussed in this section. This involves the ideas parents have and want to see in the future for ARFID, including recommendations for the community, professionals, and personal advice for families. Spreading the word Participants expressed a hope that there would be an increase in the awareness of ARFID. It was believed that this would lead to some understanding within their community in which people would be able to recognise the issue for what it was, rather than attribute it to another co-occurring diagnosis: Ruby: “People can actually pick up it is ARFID. It's not just the autism and start dealing with it as a separate issue. Because it is a separate issue and it needed dealing with correctly from day one.” Others have also stated that training beforehand would be desirable for professionals in health and school settings: Daisy: “Not even health professionals always really understand.” Daisy: “The school day can be absolute hell because… children with ARFID will be dreading that lunch break. Whether it's being criticized… what’s in their lunch box, or having to somehow navigate what's on offer in the school lunch, tolerating all the smells and sounds… I think that there needs to be much better training in schools.” There was a hope that training would also help more families obtain an official ARFID diagnosis, and in turn, will increase the awareness of ARFID: Rose: “It’s obviously underdiagnosed and under supported… the more people are diagnosed with it, the stronger voice we have”. (Rose) Though, for ARFID, awareness is still difficult due to the norm around feeding and healthy eating: Ivy: “I think there’s still that sort of stigma isn’t there? ‘Oh, it’s a naughty child who just won't eat her vegetables or just won't eat this’. It’s much more serious than that and I think we’re in danger of that. Perhaps dominating and really devaluing the act of seriousness of ARFID.” It seemed that the more understanding and awareness of the families with ARFID, the possibility of better support that families can provide for their child with ARFID. Living well with ARFID? Participants gave mixed views on how they have tried to live well with the diagnosis. When looking at the negative impacts, participants felt “parental blame” (Ruby) from professionals and extended families over the feeding patterns of their children, with some parents described defending themselves against criticism: Rose: “I look at her and I said to her, ‘Don't you think I’ve tried to feed my child all this time? Do you think I'm purposely not feeding him?’.” (Rose) Additionally, participants illustrated the hardship of going out for meals at a restaurant, or even travelling due to ARFID. This resulted in participants describing leading very constrained lifestyles, where some participants have had to quit their jobs in order to support their child with ARFID: Rose: “I never went back to work. My job was to keep him alive every day to get enough calories into him so that he was getting sufficient calories.” To combat these experiences, participants appear to have created ways to get around the negativity from professionals and extended families. Ruby described that the diagnosis provided the validation she needed to counteract that criticism: Ruby: “[It] validates that, no, it's not your fault. This is a genuine thing.” Others conveyed that in order to support their child and live well with ARFID, they must focus on believing that there is hope in the future, even if the path is difficult. Moreover, participants have reported that having some sympathy and empathy towards their child with ARFID is necessary to live well with the diagnosis: Florence: “I think the worst thing any parent could do is pressurise and try to get him to eat something. I wouldn't like it… if someone puts something in front of me that I didn't like. How would I cope with that? You know, I’d wanna push it away and be adamant. No, I'm not trying it. I don't like it.” In contrast, there were some participants that showed their acceptance and optimism about their child living well with their diagnosis as they get older: Florence: “I do remain positive and hopeful that maybe he will change… I’m very relaxed about it. I don’t get myself stressed. I don’t want to upset him. I have to take on board that he’s very sensitive as well.” And most importantly, when the changes do happen, “you should celebrate the wins” (Daisy). Moreover, Rose reports that “in the long run, it’ll be beneficial for your child to understand ARFID”. But what is important to note is that families do not have to go through with supporting their child with ARFID alone. There is available non-professional support out there, which the next section will explore. You are not alone Participants in this study wanted to impart the notion that families are not alone in supporting people with ARFID and that there is support for them out there. Participants’ advice to future ARFID families centred around reassurance that they are “not getting it wrong” (Daisy) and reassurance around the diagnosis itself: Florence: “It can be quite daunting and you can feel quite alone with it, especially in that acceptance period because ….for some people, it's really hard to accept that your child's got this.” Participants highlighted obtaining a diagnosis as the top priority for access to support, as it was understood that the diagnosis was the mechanism through which “people will listen to you more” (Harriet): Nancy: ”If they don’t have a diagnosis, you find it really hard to get anywhere with support. That for us is the most important that we can access the stuff he needs through different means… if that means that he needs a diagnosis to go along with it, then so be it. We need something to give us that understanding for other people, not just for us.” One participant expressed optimism that the diagnostic process may have improved from when this was a new diagnosis: Florence: “It was a new diagnosis out there. The professionals were still trying to get their head around it. So, someone getting a diagnosis now might be in a better position than I was because maybe their professionals are a little bit more on board with it and… there's probably a lot more research on it now.” Many participants expressed a belief that from trying to obtain the ARFID diagnosis and access to support, you will need to “get your battle gear on, prepare for a fight” (Ivy). And for this, participants have suggested that families with ARFID should join online support groups: Nancy: “I would definitely say you need to join these groups because they’re pretty much the best place to get any kind of support or advice from.” Participants indicated that it may be scary joining support groups, but it provides the reassurance that families need, and crucially, as other families understand the situation, there is “that sense of there is a community out there that understands what you're going through” (Nancy). Discussion The findings from this study illustrated the experiences of participants around the ARFID diagnostic process for their child with an IDD. There were highs and lows in the diagnostic process, and this juxtaposition of positive and negative experiences also carried through to families’ experiences of support received for their child’s ARFID after the diagnosis process. Importantly, there was a sense of damaged relationships and broken trust between professionals and families. Families in this study also highlighted a few ways forward, mainly ARFID awareness and support, and advice to families who are in similar situations. Encountering the ARFID diagnosis Initially, participants gave descriptions of how they came to know ARFID. They indicated their encounters with a number of professionals, similar to those mentioned in literature [ 10 ]. Participant experiences also illustrated the differences in the type and duration of assessments for ARFID. This supports prior research which has highlighted the variety of assessment and screening tools for ARFID [ 5 ], suggesting assessments and treatments may be tailored to symptom presentations (Nicholls, 2018). It would appear that the variations in the assessment process that families described are similar to those previously outlined in the literature [ 2 , 5 ]. Some participants in this study shared their ‘luck’ into obtaining an ARFID diagnosis, where some have had the finances for a private care pathway for diagnosis and support. This is significant as obtaining a diagnosis for ARFID was clearly challenging for participants, and some noted financial constraints as they had to self-fund their child’s diagnosis. Notably, this diagnosis related difficulty affected the recruitment of participants for this study. Many potential participants were excluded due to their child having suspected ARFID, but not having obtained the clinical diagnosis. This presented a situation where families were unable to participate due to the minimal support for ARFID diagnosis available to them, as having a clinical diagnosis was part of the inclusion criteria for the present study, however it also reflected the challenges of obtaining an ARFID diagnosis for their children. However, the American Psychological Association [ 36 ] has recently updated the diagnostic manual as text revised (i.e., DSM-5-TR) to improve the accuracy of ARFID diagnoses. Also recently, the World Health Organisation (WHO) proposed the ICD-11, which included ARFID [ 37 ]. Using the ICD-11 diagnostic criteria was demonstrated to obtain good accuracy in diagnosing ARFID as well as distinguishing it from other eating and feeding disorders [ 38 ]. These updates to diagnostic manuals could improve the diagnostic process of ARFID within the UK and more widely. This is also particularly relevant given that participants in this study reported challenges in obtaining an ARFID diagnosis. Importantly, participants have also highlighted some advantages of obtaining an ARFID diagnosis. They described this as having resulted in self-motivated information seeking around ARFID and the desire to educate others, especially family and support services who have limited knowledge around ARFID. Nonetheless, the diagnosis still presents a low prevalence rate when compared to other disorders [ 3 ]. as well as professionals having minimal understandings of ARFID [ 19 ] which could influence the challenges with obtaining a diagnosis of ARFID. This shows that despite parental efforts to increase ARFID awareness and self-educate about ARFID following an ARFID diagnosis, there are likely to still be limitations in relation to professional knowledge of ARFID. The push for support Participants described an important juxtaposition whereby support services for ARFID were minimal, yet essential for these children. Participants also displayed negative connotations towards professionals due to their limited support. It was clear that participants portrayed mixed access to support services including health care and educational services, where support seemed minimal for the individual with ARFID. Participants identified the use of psychological therapies (e.g., CBT-AR), which studies have found to be an efficacious treatment for ARFID [ 26 , 27 ]. Though, in comparison to the neurotypical population, research has highlighted the difficulties of individuals with IDD in accessing support and treatment, where there may be potentially limited use of psychological therapies. Furthermore, some participants appeared to gain more medical support rather than psychological treatment concerning their weight. This highlighted the feeling of not being heard in which they experienced that medical professionals were more likely to focus on and address physiological conditions rather than to consider the effect of mental conditions on the individual. This appears to be a repeating discovery in the feeding literature around support, where families felt that medical professionals do not listen or believe their accounts [ 39 ]. It could be said that perhaps the holistic view of the patient with ARFID is unconsciously ignored and is in favour of addressing specific medical conditions. This is significant in the support for ARFID as it signifies that the medical conditions alongside ARFID could be easier to deal with than the diagnosis itself. Consequently, this shows that, perhaps through multidisciplinary collaboration, treatments can be individually tailored to the core needs of the individual with ARFID as well as their medical conditions [ 20 , 22 ]. However, the actual implemented support for participants was still scarce within clinical and educational settings, where negative connotations were displayed towards professionals due to their limited support. Diagnostic overshadowing was also prominent during support. Participants have felt that professionals used the complexity and severity of their child’s IDD to explain the difficult feeding behaviours rather than recognising ARFID. There is compelling evidence of feeding difficulties within the IDD population [ 14 , 15 ], where ARFID can co-occur [ 4 , 10 , 16 , 40 , 41 ]. Still, the support for the person with ARFID and co-occurring IDD is perceived as minimal by families, which could perhaps complicate the receipt of support for children with IDD exhibiting ARFID-like behaviours. Furthermore, the view of damaged trust was observed from participant experiences where untrained professionals made recommendations which led to negative impacts towards individuals with ARFID from the services which families trusted would be able to support their children to improve their food consumption. Research into individuals diagnosed with feeding disorders alongside autism have shown this to be a common case where at times families had their views dismissed and were just generally viewed as ‘bad parenting’ [ 39 , 41 , 42 ]. But despite families receiving criticism and judgement for the ways in which they supported their child with ARFID, they are clearly instrumental in supporting their children. The findings from this study highlighted the importance of families being able to accept the diagnosis in order to be able to divert their focus towards supporting their child with ARFID with their eating behaviours. Research shows the encouragement for parents to continually support their child with ARFID using feeding strategies, albeit continuing to observe some degree of food avoidance [ 31 ]. This signifies the value of families, where the knowledge and training of support for the child is abundant. For example, research has shown the importance of the family influence in support in feeding of those within the IDD and feeding population [ 43 ]. This demonstrates the effectiveness of working with families in order to implement good standards of care, especially during meal times. The future with ARFID Participants shared their experiences and proposed recommendations for ARFID. Increased awareness was thought to be key. Many studies have also supported the idea of increasing awareness, particularly for clinicians to be educated and trained in supporting people with ARFID [ 22 ]. Perhaps the more understanding and awareness there is, then the better accuracy of diagnosing ARFID and implementation of support available. Although participants accepted the diagnosis and have tried to be optimistic of the future, there was the hardship of living with the guilt and anxiety of trying to support their child with ARFID. The stressful and overwhelming experience of supporting an individual with feeding difficulties is not new and has been a significant concern within the feeding literature [ 44 ]. The study by Rogers et al. (2012) strongly reiterates the negative feelings of parents, especially mothers, as they worry about the health consequences of their child with feeding difficulties. Despite this, parents try hard to maintain a positive atmosphere around the individual with ARFID, where research has shown an optimistic perspective around food intake could possibly aid in improving their feeding behaviours [ 31 ]. Studies have also shown the family value in support for individuals with ARFID, especially during interventions where parents could independently support their child at home [ 30 ]. Though, from the participants’ views, this does not appear to be happening. Through constant battling with support services, it was found that only one family had support from a clinical psychologist. Perhaps it would be effective for clinicians to include families in supporting the individual with ARFID (i.e., family-based treatments), which may be the way forward to allow families and professionals to collaborate in supporting the child with ARFID. Consequently, this highlights the benefits of a good collaboration between professionals and families when developing and discussing tools and interventions for individuals with ARFID that have intellectual disabilities [ 45 ]. Finally, all participants provided some encouraging and practical advice for families with ARFID who are struggling. It was generally highlighted that their initial difficulties arose before obtaining the ARFID diagnosis; therefore, obtaining the diagnosis is the first step in support. However, even though it is emphasised as a priority, it is important to reconcile that obtaining the diagnosis may not always be possible. Accordingly, participants voiced the lack of support from feeding services when having an unofficial ARFID diagnosis, also having no availability of support within the area they reside. But more importantly, this could be because the understanding and known prevalence of ARFID is still thought to be insignificant within eating and feeding disorders for families as well as professionals [ 4 , 7 , 8 , 25 ]. Therefore, the increased awareness of ARFID is necessary to invite better access to support services with educated and trained clinicians [ 24 ]. Additionally, there was a sense of community with parents whose children have suspected or clinical diagnoses of ARFID, where recommendations were to join social media ARFID groups to contact other families in similar situations. The findings from this study indicated that while there may be limited support from services, the community is able to be part of the third-party support families may need. Limitations Notably, this diagnosis related difficulty affected the recruitment of participants for this study. Many potential participants were excluded due to their child having suspected ARFID, but not having obtained the clinical diagnosis, which posed a limitation for the study. This presented a situation where families were unable to participate due to the minimal support for ARFID diagnosis available to them, as having a clinical diagnosis was part of the inclusion criteria for the present study, however it also reflected the challenges of obtaining an ARFID diagnosis for their children. Implications for research and clinical practice The findings from this study could provide significant insight to professionals about the family experience during ARFID diagnosis, and the relevant professionals should consider this when supporting families through this process. In terms of research, as only individuals with an official diagnosis were recruited, future studies should seek to include families who suspect their child has ARFID but whom have not obtained a clinical diagnosis. This is in order to explore their experiences and potentially compare with those who have a clinical diagnosis, where some have been referred to specific care pathways [ 22 ]. Additionally, this research has shed light onto the challenges of obtaining an ARFID diagnosis, which would be important for clinical commissioning groups in the NHS to consider to improve accessibility of services for families in need. Moreover, given the findings highlighted from this study about the potential for diagnostic overshadowing, it would be important for future research to examine the differences in diagnostic processes and support when IDD is not present alongside ARFID. This would allow for a clearer picture of what ARFID might look like both in typically developing and IDD populations, and this may support with minimising difficulties like diagnostic overshadowing. Ultimately, this study has focused on the experience of families during the ARFID diagnostic process. It would be beneficial for research to be conducted on professionals’ experiences of the ARFID diagnostic process and their diagnostic confidence, given that families expressed concerns about professionals’ abilities to identify ARFID. This should also closely consider the IDD population. With regards to support, there is limited research involving families in understanding diagnostic processes and the expectations. Consequently, it may be important to consider family values when obtaining a diagnosis, possibly encouraging clinicians and professionals to involve family suggestions when obtaining an ARFID diagnosis and reflect on what services have been very beneficial for families. Future research could also be conducted with families supporting individuals with ARFID. This may support collaboration between clinicians and families, which may result in good therapeutic alliance between the family and clinician. Conclusion To date, the exploration of family experiences on the diagnostic process of ARFID is little-to-none. This study has provided insight into the lived experience of families of children with co-occurring IDD and ARFID of going through the diagnostic process. This study has also highlighted the ways in which families have been impacted by this process. Findings have illustrated the mixed views on ARFID, including the diagnostic process, the limited awareness for ARFID, and how these may have impacted the support available. Although there were challenges with recruitment, implications for research and practice are provided. Additionally, as there are more updated diagnostic modules (e.g., DSM-5-TR, ICD-11), there is hope that there will be less misunderstandings and misdiagnoses of ARFID. Abbreviations ARFID Avoidant Restrictive Food Intake Disorder IDD Intellectual and Developmental Disabilities ICD International Classification of Diseases and Related Health Problems DSM Diagnostic and Statistical Manual of Mental Disorders Declarations Acknowledgements Not applicable Author contributions This project was completed in partial fulfilment of J.J.D's Masters degree with S.M-B as their supervisor. J.J.D recruited participants, gathered and analysed the data, produced initial tables, and wrote the main manuscript text. S.M-B came up with the idea for the study and oversaw the project and provided supervision. S.M-B also supported with piloting interviews and provided guidance and suggestions on the writing of the manuscript. Both authors have reviewed and approved the final manuscript. Funding This research received no funding. Availability of data and materials The datasets generated and analysed during the current study are confidential due to the need to protect the privacy of participants. Ethics approval and consent to participate This study received ethical approval from the Tizard Centre Ethics Committee at the University of Kent, Canterbury. All participants gave written and verbal consent for participation and for their data to be included in this research. Consent for publication Not applicable Competing interests Both authors declare that they have no competing interests Author details 1 Tizard Centre, School of Social Policy, Sociology and Social Research, University of Kent, Cornwallis North East, Canterbury, United Kingdom. References American Psychiatric Association. Eating and Feeding Disorders. Diagnostic and statistical manual of mental disorders. 5th ed. APA; 2013. 10.1176/appi.books.9780890425596 . Nicholls D. ARFID and Other Eating Disorders of Childhood. In: J. Hebebrand & B. Herpertz-Dahlmann, B, editors Eating Disorders and Obesity in Children and Adolescents . 2018. p.29–33. Fisher MM, Rosen DS, Ornstein RM, Mammel KA, Katzman DK, Rome ES, et al. Characteristics of avoidant/restrictive food intake disorder in children and adolescents: a new disorder in DSM-5. J Adolesc Health. 2014;55(1):49–52. 10.1016/j.jadohealth.2013.11.013 . Nicely TA, Lane-Loney S, Masciulli E, Hollenbeak CS, Ornstein RM. Prevalence and characteristics of avoidant/restrictive food intake disorder in a cohort of young patients in day treatment for eating disorders. J Eat disorders. 2014;2(1):1–8. 10.1186/s40337-014-0021-3 . Bryant-Waugh R, Micali N, Cooke L, Lawson EA, Eddy KT, Thomas JJ. Development of the Pica, ARFID, and Rumination Disorder Interview, a multi‐informant, semi‐structured interview of feeding disorders across the lifespan: A pilot study for ages 10–22. Int J Eat Disord. 2019;52(4):378–87. 10.1002/eat.22958 . Bryant-Waugh R, Higgins C, editors. Avoidant restrictive food intake disorder in childhood and adolescence: a clinical guide. Routledge; 2022. Murray HB, Bailey AP, Keshishian AC, Silvernale CJ, Staller K, Eddy KT et al. (2020). Prevalence and characteristics of avoidant/restrictive food intake disorder in adult neurogastroenterology patients. Clinical Gastroenterology and Hepatology , 2020;18(9): 1995–2002. 10.1016/j.cgh.2019.10.030 . Eddy KT, Thomas JJ, Hastings E, Edkins K, Lamont E, Nevins CM, et al. Prevalence of DSM-5 avoidant/restrictive food intake disorder in a pediatric gastroenterology healthcare network. Int J Eat Disord. 2015;48(5):464–70. 10.1002/eat.22350 . Cooper-Vince CE, Nwaka C, Eddy KT, Misra M, Hadaway NA, Becker KR, et al. The factor structure and validity of a diagnostic interview for avoidant/restrictive food intake disorder in a sample of children, adolescents, and young adults. Int J Eat Disord. 2022. 10.1002/eat.23792 . Dinkler L, Yasumitsu-Lovell K, Eitoku M, Fujieda M, Suganuma N, Hatakenaka Y, et al. 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. 2022;2(3):e12094. 10.1101/2021.11.08.21265646 . Schalock RL, Borthwick-Duffy SA, Bradley VJ, Buntinx WH, Coulter DL, Craig EM et al. Intellectual disability: Definition, classification, and systems of supports . American Association on Intellectual and Developmental Disabilities. 444 North Capitol Street NW Suite 846, Washington, DC 20001. 2010. Centers for Disease Control and Prevention. Causes and Risk Factors . https://www.cdc.gov/ncbddd/developmentaldisabilities/causes-and-risk-factors.html [Accessed 28th April 2022]. Schalock RL, Luckasson R, Tassé MJ. The contemporary view of intellectual and developmental disabilities: Implications for psychologists. Psicothema. 2019. 10.7334/psicothema2019.119 . Manikam R, Perman JA. Pediatric feeding disorders. J Clin Gastroenterol. 2000;30(1):34–46. Zickgraf HF, Richard E, Zucker NL, Wallace GL. Rigidity and sensory sensitivity: Independent contributions to selective eating in children, adolescents, and young adults. J Clin Child Adolesc Psychol. 2020;1–13. 10.1080/15374416.2020.1738236 . Sharp WG, Volkert VM, Stubbs KH, Berry RC, Clark MC, Bettermann EL, et al. Intensive multidisciplinary intervention for young children with feeding tube dependence and chronic food refusal: an electronic health record review. J Pediatr. 2020;223:73–80. 10.1016/j.jpeds.2020.04.034 . Zimmerman J, Fisher M. Avoidant/restrictive food intake disorder (ARFID). Curr Probl Pediatr Adolesc Health Care. 2017;47(4):95–103. 10.1016/j.cppeds.2017.02.005 . ARFID Awareness UK. ARFID & AUTISM . https://www.arfidawarenessuk.org/the-link-with-autism-1 [Accessed 28th April 2022]. Jackson BN, Turner LA, Kevany GL, Purdy SC. Five years of Avoidant/Restrictive Food Intake Disorder: no consensus of understanding among health professionals in New Zealand. Speech Lang Hear. 2022;25(1):37–45. 10.1080/2050571X.2021.1926620 . Ornstein RM, Rosen DS, Mammel KA, Callahan ST, Forman S, Jay MS, et al. Distribution of eating disorders in children and adolescents using the proposed DSM-5 criteria for feeding and eating disorders. J Adolesc Health. 2013;53(2):303–5. 10.1016/j.jadohealth.2013.03.025 . Norris ML, Katzman DK. Change is never easy, but it is possible: reflections on avoidant/restrictive food intake disorder two years after its introduction in the DSM-5. J Adolesc Health. 2015;57(1):8–9. 10.1016/j.jadohealth.2015.04.021 . Harrison A. Falling Through the Cracks: UK Health Professionals’ Perspective of Diagnosis and Treatment for Children and Adolescents with Avoidant/Restrictive Food Intake Disorder. Child Care in Practice. 2021;1–11. 10.1080/13575279.2021.1958751 . ARFID Awareness UK. TREATING ARFID . https://www.arfidawarenessuk.org/treatment [Accessed 28th April 2022]. Davis E, Stone EL. Avoidant restrictive food intake disorder—more than just picky eating: a case discussion and literature review. J Nurse Practitioners. 2020;16(10):713–7. 10.1016/j.nurpra.2020.08.011 . Oliveira SB, Kaul A. Invited Commentary Re: Prevalence and Characteristics of Avoidant/Restrictive Food Intake Disorder in Pediatric Neurogastroenterology Patients. J Pediatr Gastroenterol Nutr. 2022;74(5):547–8. 10.1097/MPG.0000000000003431 . 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. 10.1002/eat.23053 . Thomas JJ, Becker KR, Kuhnle MC, Jo JH, Harshman SG, Wons O, et al. Cognitive-behavioral therapy for avoidant/restrictive food intake disorder: Feasibility, acceptability, and proof‐of‐concept for children and adolescents. Int J Eat Disord. 2020;53(10):1636–46. 10.1002/eat.23355 . Görmez A, Kılıç A, Kırpınar İ. Avoidant/restrictive food intake disorder: An adult case responding to cognitive behavioral therapy. Clin Case Stud. 2018;17(6):443–52. 10.1177/1534650118795286 . Taylor T. Use of an exit criterion for a clinical paediatric feeding case in-home. J Dev Phys Disabil. 2021;33(3):475–88. 10.1007/s10882-020-09759-5 . Taylor T, Blampied N, Roglić N. Controlled case series demonstrates how parents can be trained to treat paediatric feeding disorders at home. Acta Paediatr. 2021;110(1):149–57. 10.1111/apa.15372 . Kim YK, Di Martino JM, Nicholas J, Rivera-Cancel A, Wildes JE, Marcus MD, et al. Parent strategies for expanding food variety: Reflections of 19,239 adults with symptoms of Avoidant/Restrictive Food Intake Disorder. Int J Eat Disord. 2022;55(1):108–19. 10.1002/eat.23639 . Lock J, Sadeh-Sharvit S, L'Insalata A. Feasibility of conducting a randomized clinical trial using family‐based treatment for avoidant/restrictive food intake disorder. Int J Eat Disord. 2019;52(6):746–51. 10.1002/eat.23077 . Rosania K, Lock J. Family-based treatment for a preadolescent with avoidant/restrictive food intake disorder with sensory sensitivity: a case report. Front Psychiatry. 2020;11:350. 10.3389/fpsyt.2020.00350 . Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101. 10.1191/1478088706qp063oa . Coolican H. Research methods and statistics in psychology. Psychology press; 2017. American Psychiatric Association. Eating and Feeding Disorders. In: Diagnostic and statistical manual of mental disorders . text rev) APA. 2022. 10.1176/appi.books.9780890425787 . 5th ed.. World Health Organization. Feeding and Eating Disorders. International Statistical Classification of Diseases and Related Health Problems. 11th ed. WHO; 2019. https://icd.who.int/ . Claudino AM, Pike KM, Hay P, Keeley JW, Evans SC, Rebello TJ, et al. The classification of feeding and eating disorders in the ICD-11: results of a field study comparing proposed ICD-11 guidelines with existing ICD-10 guidelines. BMC Med. 2019;17(1):1–17. 10.1186%2Fs12916-019-1327-4. Tan J, Cocks N, Claessen M. Mothers’ perspectives of support for their child with feeding/swallowing disorders. Speech, Language and Hearing., Norris ML, Obeid N, Santos A, Valois DD, Isserlin L, Feder S et al. Treatment needs and rates of mental health comorbidity in adolescent patients with ARFID. Frontiers in Psychiatry , 2021;1144. 10.3389/fpsyt.2021.680298 . Kambanis PE, Kuhnle MC, Wons OB, Jo JH, Keshishian AC, Hauser K, et al. Prevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/restrictive food intake disorder. Int J Eat Disord. 2020;53(2):256–65. 10.1002/eat.23191 . Burkett K, Haggard ML, Van Rafelghem D, Harpster K. Restricted eating in preschoolers with autism: Mother stressors and solutions. J Autism Dev Disord. 2021:1–9. https://doi.org/10.1007/s10803-021-05078-6 . Rogers LG, Magill-Evans J, Rempel GR. Mothers’ challenges in feeding their children with autism spectrum disorder—Managing more than just picky eating. J Dev Phys Disabil. 2012;24:19–33. https://doi.org/10.1007/s10882-011-9252-2 . Adams SN, Dadabhay A, Neille J. An exploration into mothers’ experiences of feeding children with autism spectrum disorder in South Africa. Folia Phoniatr et Logopaedica. 2021;73(3):164–73. https://doi.org/10.1159/000507928 . Suarez MA, Atchison BJ, Lagerwey M. Phenomenological examination of the mealtime experience for mothers of children with autism and food selectivity. Am J Occup Therapy. 2014;68(1):102–7. https://doi.org/10.5014/ajot.2014.008748 . Parr J, Pennington L, Taylor H, Craig D, Morris C, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, Garland D. Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study. Health Technol Assess (Winchester Eng). 2021;25(22):1. https://doi.org/10.3310%2Fhta25220. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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-3824107","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":266193637,"identity":"6131a39e-0968-435f-883e-a4d6be586d03","order_by":0,"name":"Jonah Jirehl Desalesa","email":"data:image/png;base64,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","orcid":"","institution":"University of Kent, Cornwallis North East","correspondingAuthor":true,"prefix":"","firstName":"Jonah","middleName":"Jirehl","lastName":"Desalesa","suffix":""},{"id":266193638,"identity":"98eb9031-d3e7-4a93-a1a7-693c3b677342","order_by":1,"name":"Suzy Mejía-Buenaño","email":"","orcid":"","institution":"University of Kent, Cornwallis North East","correspondingAuthor":false,"prefix":"","firstName":"Suzy","middleName":"","lastName":"Mejía-Buenaño","suffix":""}],"badges":[],"createdAt":"2023-12-30 13:44:06","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3824107/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3824107/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":57040094,"identity":"e0945694-bdad-45e6-a9a6-1da46cb64b90","added_by":"auto","created_at":"2024-05-23 20:31:36","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":634694,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3824107/v1/f80a2499-004e-4c77-9fb3-e2c60042c0d2.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Obtaining an Avoidant Restrictive Food Intake Disorder diagnosis in The UK for Individuals with Intellectual and Developmental Disabilities: A Qualitative Study of Families’ Experiences","fulltext":[{"header":"Plain English summary","content":"\u003cp\u003eThe study investigated families\u0026rsquo; experiences of their child with intellectual and developmental disabilities obtaining an ARFID diagnosis in the UK. Participants interviewed described the pros and cons of the ARFID diagnosis, with differences in the actual diagnostic process. Many said they came to know ARFID from professionals, and some have independently researched ARFID. They were pleased with how professionals assessed ARFID quickly, but also acknowledged how hard it is to get an ARFID diagnosis. Some participants stated cases of good support, but most identified the limited support and battles from schools, support services as well as families.\u003c/p\u003e\n\u003cp\u003eAll participants were hopeful for a better lifestyle in the future with ARFID. From the experiences heard, recommendations were considered for promoting awareness as well as future family-involved research and treatment. This study hoped to enlighten the families and professionals of the lived experience with ARFID, and how the diagnostic process and support had affected families.\u0026nbsp;\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003eIn 2013, Avoidant Restrictive Food Intake Disorder (ARFID) was introduced into the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5) within Eating and Feeding Disorders. ARFID is an eating or feeding disturbance that leads to significant weight loss or unable to attain expected weight gain, nutritional deficiency, a necessity towards enteral feeding or oral nutritional supplements, and interference with one\u0026rsquo;s psychosocial functioning [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Although there are some similarities between ARFID and anorexia around physical symptoms, particularly nutritional deficiency, there is no psychological concern with body dysmorphism, and weight maintenance associated with ARFID [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Individuals with ARFID commonly display signs of emetophobia (i.e., fear of vomiting), negative physiological effects, food avoidance due to sensory issues, and may have comorbidity with mood disorders, anxiety disorders and they may be autistic [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. ARFID has been found also prominent in the youth population (i.e., children, adolescents) but can still progress into adulthood [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe DSM-5 was relied on when diagnosing ARFID since the 10th International Classification of Diseases and Related Health Problems (ICD-10) did not include the diagnosis. Studies have indicated that the DSM-5 was able to demonstrate strong inter-rater reliability when diagnosing ARFID, especially within a paediatric gastrointestinal sample, where the prevalence of ARFID was considerably low compared to other feeding and eating disorders [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Additionally, there have been diagnostic assessments produced to evaluate the presence and severity of ARFID as well as Pica and Rumination Disorder; all which have been newly added to the DSM-5. For instance, the Pica, ARFID and Rumination Disorder Interview (PARDI) was created and used to assess common ARFID characteristics. The diagnostic assessment tool was effective, demonstrating moderate inter-rater reliability and significantly scoring higher on severity and profile for individuals with ARFID compared to healthy controls [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. More recently, research has revealed the strong factor structure and validity of PARDI, indicating that a strong assessment tool for ARFID [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Some researchers have indicated that obtaining a diagnosis for ARFID may be influenced by other neurodevelopmental conditions, like Intellectual and Developmental Disabilities (IDD) [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAccording to the American Association on Intellectual and Developmental Disabilities (AAIDD), intellectual disability was defined as \u0026ldquo;significant limitations both in intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical adaptive skills\u0026rdquo; (p. 1) [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. In terms of developmental disabilities, the Centers for Disease Control and Prevention (CDC) [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] defined this as \u0026ldquo;impairment[s] in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person\u0026rsquo;s lifetime\u0026rdquo; (p. 224) [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Developmental disabilities could include Attention Deficit Hyperactivity Disorder (ADHD), autism, as well as other developmental delays [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFeeding difficulties are common amongst people with IDD [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. It is theorised that ARFID may be more severe when presented with increases in hypersensitivity and rigidity towards foods [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. In terms of co-occurrence, studies have found that around a third of the IDD population also had ARFID [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. With regards to autistic individuals, it was evident that selective eating was highly prevalent alongside the condition, whereby selective eating could be one of the core symptoms of autism with descriptions of repetitive or restrictive behaviour as well as sensory sensitivities around feeding [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Research has also found that severe SE was an indication in the development of symptoms relating to ARFID [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e], which could insinuate potential links between autism and ARFID.\u003c/p\u003e \u003cp\u003eBefore publication of the DSM-5, it was not noticeably explained or understood what features and symptoms were covered within this disorder [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. At times, there were difficulties in separating ARFID symptoms due to symptom overlap with autism due to shared similarities around feeding sensitivities and behaviours [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e], which could often lead to struggles in diagnosing ARFID. Additionally, due to the low prevalence rate of ARFID among other feeding difficulties, ARFID is portrayed as a small disorder compared to mainstream eating and feeding disorders. This was evident in a study that found only 14% of cases were diagnosed with ARFID at a specialist clinic for eating disorder treatments [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAlthough there has been increased awareness around ARFID recently, misunderstandings among health professionals are still presently occurring. Studies have explored the understanding of professionals around children\u0026rsquo;s restrictive feeding behaviours though diagnostic consensus, discovering no consensus on the diagnosis and treatment of ARFID [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. Consensuses for diagnosis and treatment are important as they enable collaborative and multidisciplinary approaches to determining signs and symptoms [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], leading to agreed appropriate treatments and support for individuals with ARFID [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAdditionally, research into children with ARFID found that paediatricians had difficulties in accurately diagnosing ARFID. Research evidence has discovered that out of 657 paediatricians, only 7% diagnosed ARFID correctly. Other paediatricians had overlooked ARFID, misdiagnosing individuals with another disorder [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. It was also found that 60% of paediatricians are unfamiliar with the diagnosis, which illustrates the inadequate knowledge of ARFID, resulting in difficulties in diagnosis [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Similar situations were revealed in the UK. For example, research has examined the barriers to effective healthcare for individuals with ARFID. Professionals demonstrated the need for more education and training around ARFID to effective diagnosis and treatment. The need for ARFID-specific care pathways was proposed to which professionals can appropriately assess, diagnose and support ARFID [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. So far, the literature illustrates how ARFID has had inconsistent and inaccurate diagnostic processes, in which most professionals have not heard of ARFID. In turn, this will have had an impact on individuals with ARFID and their families in terms of accessing support from services.\u003c/p\u003e \u003cp\u003eFor over ten years the support for ARFID in the UK has been scarce. Due to the diagnosis being relatively new, professionals have had a difficult time understanding the characteristics of the disorder, where little is known about efficacious treatments [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Plenty of studies have recommended that there should be increased awareness for ARFID from clinicians in order to avoid leaving individuals with ARFID untreated [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] as well as improve or produce good quality assessment tools [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite these limitations to accurately diagnosing ARFID, there are some successful treatments for ARFID. There has been some research into the use of Cognitive Behaviour Therapy for ARFID (CBT-AR) to reduce symptoms of ARFID for individuals [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e] Also, studies have illustrated how the applications of in vivo exposure, systematic sensitisation and cognitive restructuring techniques resulted to improvements in physical and psychological wellbeing (e.g., increase in weight, decrease in food anxiety) [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Recently, most treatments also include supporting and training primary caregivers on behavioural-analytical interventions to be implemented for the individual with ARFID. These interventions consider their increase of safety food range, food intake, and improved mealtime behaviour; even when accounting for their IDD [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e].\u003c/p\u003e \u003cp\u003e Research has also found that families, particularly parents, are highly valued when it comes to supporting their child with ARFID. In such cases where parental support is required for the individual with ARFID, high parental satisfaction and acceptability of treatment is necessary for an effective implementation of treatment and support provision [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Evidence also indicated that professionals can support parents through utilising parent feeding strategies. An optimistic expressive environment during the parent feeding strategy was found to aid in reducing psychosocial impairment and food avoidance [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Additionally, family-based therapies have increasingly been popular for when treating ARFID. Recent studies have demonstrated feasibility of conducting family-based treatments for ARFID [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. This signifies an encouragement in including families in the support and treatment of individuals with ARFID.\u003c/p\u003e \u003cp\u003eTo date, there is little research examining family experiences of the ARFID diagnostic process. Consequently, the study conducted aimed to explore families\u0026rsquo; experiences of going through the ARFID diagnostic process for an individual with IDD in the UK. The research questions were as follows:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eWhat are families' experiences of going through the ARFID diagnostic process in the UK?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eWhat was the impact on families of obtaining an ARFID diagnosis in the UK?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eWhat do families report about their experiences with support services for ARFID in the UK?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eWhat suggestions do families provide about ARFID diagnosis and support in the UK?\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e"},{"header":"Method","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eThis was an exploratory study that undertook a qualitative approach to investigate family experiences of obtaining an ARFID diagnosis for an individual with IDD in the UK. Semi-structured online interviews via video and audio platforms (i.e., Microsoft Teams) were carried out, recorded, and stored securely in Stream. These were then transcribed, and the data were thematically analysed. Interviews were semi-structured to allow the collection of in-depth qualitative data from participants.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eEight participants were recruited via relevant mailing lists and social media with the use of a research poster. The study undertook a purposive sampling method based on predetermined criteria. To be included, participants had to be fluent in English as there was no funding was provided for this study, so provision of translators were not possible. Participants had to also be classified as a primary care giver (PCG) to the individual with IDD diagnosed with ARFID (e.g., parent, relative). In terms of IDD, autistic individuals, and genetic and general conditions that display cognitive, intellectual, or developmental delays were included. The child being discussed also needed to have been formally diagnosed with ARFID. Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e and Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e present the demographic information of parents and their child with ARFID, including their additional diagnoses.\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\u003eParticipant characteristics.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\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 \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCategory\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNumber of participants (%)\u003c/p\u003e \u003cp\u003e\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;8\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRace/ethnicity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhite British\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (87.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIndian British\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (in years)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35\u0026ndash;45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (62.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e46\u0026ndash;55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (37.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of individuals with ARFID participants cared for\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (100%)\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 \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eChild characteristics.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\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 \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCategory\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNumber of children (%)\u003c/p\u003e \u003cp\u003e\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;8\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (87.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (in years)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (50%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10\u0026ndash;19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (50%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiagnoses\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAutism\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (50%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGlobal developmental delay\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (37.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLearning disability\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (25%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRare chromosomal or genetic disorder\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (25%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDowns Syndrome\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMicrocephaly\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eMeasures and Procedure\u003c/h2\u003e \u003cp\u003eInformation about the research was disseminated through relevant mailing lists and social media. Individuals that contacted to take part were pre-screened in relation to the inclusion/exclusion criteria. Eligible participants were sent the study information sheet, along with a consent form and demographic questionnaire. After obtaining informed consent, the researcher (first author) and participant scheduled a time and date convenient to both parties, and a Microsoft Teams (MS) link for the interview was sent to the participant.\u003c/p\u003e \u003cp\u003eParticipants were reminded of their right to withdraw from the study at any time, without reason or consequence from leaving. Interviews for each participant took approximately 1-1.5 hours to complete. All relevant topics were covered using an interview schedule whilst utilising further probes. Lastly, participants were debriefed of the study objectives and then signposted to emotional support services if requiring further support (e.g., ARFID Awareness UK, Feeding Matters resources). After the interview, the recording of the interview was securely stored onto Stream. Interview data was then transcribed and analysed. Participants were also emailed a summary of study findings after study completion.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eAnalysis\u003c/h2\u003e \u003cp\u003eThe analysis followed the six stages of thematic analysis as outlined by Braun and Clarke [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Thematic analysis is a qualitative process frequently used to analyse patterns of data and derive relevant themes from interview material to explain phenomena [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. Thematic analysis was also deemed appropriate since this was exploratory research that followed an inductive process to coding and analysis and sought to identify patterns across participant experiences, rather than research that aimed to generate a theory (e.g., grounded theory) or explore individual participant experiences in depth (e.g., interpretative phenomenological analysis). As such, thematic analysis was appropriate for this study as it produced consensual themes and amalgamated an understanding from the families\u0026rsquo; perspectives on obtaining their ARFID diagnosis.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eEthical considerations\u003c/h2\u003e \u003cp\u003e This study received ethical approval from the Tizard Centre Ethics Committee at the University of Kent, Canterbury. During the interview, participants were informed of their right to withdraw from the study at any point during the interview without consequence. Since it was deemed that participants might become distressed when discussing their child\u0026rsquo;s ARFID, it was outlined that if the participant was distressed at any point, the researcher would stop the interview and ask the participant if they would like to stop, pause or continue later. This did not occur at any point during the interviews.\u003c/p\u003e \u003cp\u003eAs with any online research, it was possible that participants\u0026rsquo; personal data might be exposed if there was a data leak. To mitigate this, MS Teams was used due to its highly secure system for data storage (e.g., Stream, which is linked to a university account which required two-factor authentication to access). During transcription, personal information about participant identities were anonymised into pseudonyms and codes. All data was stored in a password-protected file in a password-protected laptop, with sole access by the authors. Pseudonyms are used throughout this report.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eReflexivity\u003c/h2\u003e \u003cp\u003eThe first author has a background in working with the IDD population, and as such has a personal and professional interest in the topic. The second author\u0026rsquo;s PhD research focused on feeding difficulties amongst children with IDD and she has also worked clinically with children with IDD and their families. As such, the research team had a strong knowledge about IDD. The second author provided supervision to the first author in relation to carrying out qualitative research and subject specific considerations (e.g., feeding and families). The subject matter, however, was a sensitive topic to disclose about, where participants evoked emotional reactions to traumatic experiences. Consequently, a certain degree of professional rapport was established by the first author before the interview, though, the ability to stay neutral during the emotive experiences was difficult, as the first author exhibited compassion for families and dismay towards supporting professionals. Due to the influence of participants\u0026rsquo; experiences on the first author, it was difficult to remain neutral throughout the analysis process, however the supervisory input of the second author supported the first author with managing this complex balance, that ultimately allowed for rich analysis of the data.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThis study sought to explore participants\u0026rsquo; experiences of going through the ARFID diagnostic process for their child with an IDD in the UK.\u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e illustrates the themes and subthemes which will be explored further in this section.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes, Accompanying Subthemes and Main Codes Revealed from Thematic Analysis\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\u003eSubthemes\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 1: The ups and downs of diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe initial stage\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAdvantages of diagnosis\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDifficulties of diagnosis\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 2: Pushing for support\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReflections of good support\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhere\u0026rsquo;s the support?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDamaged trust\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 3: Looking into the future\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lsquo;Spreading the word\u0026rsquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLiving well with ARFID?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lsquo;You are not alone\u0026rsquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1: The ups and downs of diagnosis\u003c/h2\u003e \u003cp\u003eParticipants displayed varied feelings about the ARFID diagnostic process. The diagnostic process's merits and faults were highlighted. Three major subthemes depict the discussion around first acquiring an ARFID diagnosis, why it was beneficial, and the reasons for certain complications.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eInitial stage\u003c/h2\u003e \u003cp\u003e Some participants reported hearing about ARFID after consulting a variety of healthcare professionals including \u0026ldquo;paediatricians\u0026rdquo; (Belle), \u0026ldquo;clinical psychologists\u0026rdquo; (Ivy) and \u0026ldquo;gastroenterology consultant[s]\u0026rdquo; (Nancy). One participant described learning about ARFID from a specialised trainer for schoolteachers working in a specialty setting:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;It was somebody that comes in to do training at the school, training the teachers\u0026hellip; because school were like really confused about what to do about Mia\u0026rsquo;s eating\u0026hellip; so they mentioned it to him\u0026hellip; he said, \u0026lsquo;Look up ARFID\u0026rsquo; \u0026hellip; and I\u0026rsquo;ve read it and I thought, \u0026lsquo;my God, this is Mia\u0026rsquo;.\u0026rdquo;\u003c/p\u003e \u003cp\u003eClearly, families reported learning about or receiving information about ARFID from a variety of professionals. Participants also illustrated that those different professionals could work together to confirm the diagnosis:\u003c/p\u003e \u003cp\u003eDaisy: \u0026ldquo;They did a comprehensive assessment of his sensory needs\u0026hellip; he was off the charts really with everything in terms of quite a high level of sensory need. And within a month or two we had a report from the multidisciplinary team saying \u0026lsquo;Yes\u0026hellip; we feel confident that this is ARFID\u0026rsquo;.\u0026rdquo;\u003c/p\u003e \u003cp\u003eIn contrast to participants who learned about ARFID from professionals, some reported learning about ARFID by accident:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;We came across ARFID sort of accidentally. We watched a Channel 4 programme \u0026hellip;and they mentioned ARFID, and it just ticks so many boxes with us.\u0026rdquo;\u003c/p\u003e \u003cp\u003eIn terms of the assessment duration, participants had differing lengths for assessment time, from under an hour to half a day assessments. There were also noted differences in the ways in which ARFID was assessed, with some participants completing this via phone and others having professionals spend the day in their house. Although the diagnosis method differed in terms of assessment, there was a perception among participants that the ARFID diagnostic approach had advantages.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eAdvantages of diagnosis\u003c/h2\u003e \u003cp\u003eParticipants delved into the benefits of receiving an ARFID diagnosis in relation to the diagnostic process, such as the comfort they received after obtaining this diagnosis, the support the diagnosis allowed them to access and the fuel it gave them to learn more about ARFID.\u003c/p\u003e \u003cp\u003eSome participants regarded the procedure of acquiring an ARFID diagnosis to be \"actually simple\" (Ruby) in terms of assessment, though as noted previously, diagnostic processes might differ. Participants also described a sense of comfort after receiving the ARFID diagnosis since they now knew what their child was going through:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;When we got it, I felt relieved because\u0026hellip;it meant that we actually had something to say, \u0026lsquo;Look, he\u0026rsquo;s been diagnosed clinically by this\u0026rsquo;. \u0026hellip;He needs the support and I think without this diagnosis, you don\u0026rsquo;t get more support. You don\u0026rsquo;t get the empathy. And you don\u0026rsquo;t get the understanding.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAdditionally, there was a feeling that obtaining an ARFID diagnosis could be powerful when trying to access support:\u003c/p\u003e \u003cp\u003eDaisy: \u0026ldquo;It gives you some protection and it enables you to advocate for your child better because they've got a diagnosed condition.\u0026rdquo;\u003c/p\u003e \u003cp\u003eImportantly, participants highlighted the importance of luck in the diagnostic process. For instance, in terms of waiting lists, Rose reported being \u0026ldquo;really lucky. It was only about three months at the time\u0026hellip; it\u0026rsquo;s back to years\u0026rdquo;. Alternatively, Belle reported that her luck with obtaining the diagnosis was due to \u0026ldquo;other medical things\u0026rdquo; being present alongside ARFID traits. From a financial perspective, Harriet considered herself lucky \u0026ldquo;because they had some money from her previous job\u0026rdquo;, which led to being able to undertake a \u0026lsquo;private\u0026rsquo; approach for diagnosis and support.\u003c/p\u003e \u003cp\u003eMoreover, participants signified that having the diagnosis led to the desire \u0026ldquo;to go and research more\u0026rdquo; (Harriet) to increase their early understanding of ARFID. There was also a sense that learning about ARFID themselves could support in educating other families about ARFID:\u003c/p\u003e \u003cp\u003eFlorence: \u0026ldquo;It helps you understand as a parent that you can educate extended family members as well that may have them for the weekend or whatever.\u0026rdquo;\u003c/p\u003e \u003cp\u003eWhile there was some positivity from participants about the ARFID diagnostic process, not all families shared the same experience of the diagnosis as a strong instrument for support.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eDifficulties of diagnosis\u003c/h2\u003e \u003cp\u003eSome participants described various difficulties encountered within the diagnostic process. These primarily related to the difficulties associated with obtaining an ARFID diagnosis in the first place, including the intricacies of private versus public assessments and diagnoses, and specific IDD issues like diagnostic overshadowing.\u003c/p\u003e \u003cp\u003eBetween participants, there have been two procedures undertaken to obtain an ARFID diagnosis: the public route and the private route. This means either going through the public sector organisation for a free diagnostic assessment or going privately and paying for the diagnostic assessment. Those who went private spent a lot of money and have asked help from \u0026ldquo;the main ARFID lady\u0026rdquo; or \u0026ldquo;the Queen of ARFID\u0026rdquo;, as Nancy describes her:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;I went direct to [professional] privately as opposed to going through the system. I just literally emailed her privately and explained the history and said, \u0026lsquo;Can you help and how much would it cost or whatever?\u0026rsquo;. A grand. Paid it all privately myself so I didn't have to sort of jump through hoops of funding.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipants expressed differing reasons for taking a private approach to diagnosis. For example, a participant described the need to go private due to their locality and how there is no one to diagnose and support individuals with ARFID in their area. Further compounding the challenge to obtaining a diagnosis were the financial limitations described:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;It\u0026rsquo;s not something that most people can do, and it\u0026rsquo;s not fair because people don\u0026rsquo;t have equal access.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAdditionally, even though private diagnoses were described as reducing the waiting time drastically, participants described waiting times still existing for private diagnoses. Importantly, participants described mixed experiences with accessing support after obtaining a private diagnosis:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;[Professional] diagnosed and then we sent back to his [public sector organisation] clinic\u0026hellip; So we only ever had to pay for the one consultation and then everything else after that was done was through the actual [public sector organisation] clinic.\u0026rdquo;\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;The diagnosis that we got because it was private, was invalid. And we had to get a diagnosis through the [public sector organisation] for it to be considered. So that was frustrating.\u0026rdquo;\u003c/p\u003e \u003cp\u003eOne participant described the difficulties other families may face when seeking to obtain a formal diagnosis, since services providing an opinion about the presence of ARFID, but not a clinical diagnosis:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;It was about asking the right questions for a diagnosis, whether or not it be accepted because a lot of people will offer a diagnosis which isn't a real diagnosis\u0026hellip; There was a place in [location] that I contacted saying if you diagnose him, \u0026lsquo;Oh well, we can't actually clinically diagnose it, but we can say he\u0026rsquo;s got it\u0026rsquo;. And I was like, \u0026lsquo;Well, that's no good\u0026rsquo;. So I think a lot of people may have fallen into that trap.\u0026rdquo;\u003c/p\u003e \u003cp\u003eIn terms of feeding behaviour, there was also an impression that professionals tended to demonstrate diagnostic overshadowing by emphasising co-occurring conditions as an explanation rather than the ARFID diagnosis:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;A lot of professionals are also reluctant to diagnose ARFID with the autism\u0026hellip; because a lot of them will just say, \u0026lsquo;Oh, it's down to the sensory issues around autism\u0026rsquo;\u0026hellip; and I think that's down to misunderstanding as well\u0026hellip; 'cause a lot of children are \u0026ndash; probably do have ARFID, but they\u0026rsquo;re saying now \u0026lsquo;it's just autism\u0026rsquo;.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAlthough the diagnostic process was clearly valuable for some participants, this appeared to be dependent on factors such as the locality and availability of services that can diagnose as well as provide the necessary support.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: Pushing for support\u003c/h2\u003e \u003cp\u003eClearly, receiving support for ARFID is important for families, and some families in this study described some examples of good support they had received. Of importance, however, is the stark difference between participants, with many describing a lack of support for ARFID. Finally, participants described damaged trust in the support they receive for their child with ARFID. This theme therefore examined the support families received, and the extent families described needing to push for support.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eReflections of good support\u003c/h2\u003e \u003cp\u003e Participants provided a well-balanced description of ARFID by also describing the various ways in which professionals have delivered good support for individuals with ARFID and their families. One parent described the clinical support they received from professionals after obtaining the diagnosis:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;It did open up some channels for further treatment for sure\u0026hellip;It's meant that we've been able to get into the feeding clinic, which we're hoping is gonna be able to start helping him and also it meant that we got a different dietician anyway because, with the tube feeding, we needed someone different. And so, she's working with us to try and build up his tolerance of food and things like that.\u0026rdquo;\u003c/p\u003e \u003cp\u003eSome participants described their experiences of parent feeding strategies (e.g., \u0026ldquo;You could see the iPad. OK, if you refuse to open your mouth, it goes away. Open it. It comes back\u0026rdquo;, Rose) as well as implemented therapy for their child with ARFID:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;We started CBT therapy with them \u0026hellip; it was all private\u0026hellip; we spent all our savings on it. And it had a little bit of effect on him. We managed to get his weight up to 30.5kg and he grew. So, it did make an effect.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAlternatively, some participants experienced good support demonstrated by their SEN schools in the form of support with supporting the children to eat different various foods:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;She goes to a lovely special needs school\u0026hellip; she's allowed to go up\u0026hellip; to the dinner lady, \u0026ldquo;I wanted a little bit of this, little bit of that.\u0026rdquo; So that got her to start eating a few more different sorts of food\u0026hellip; But it's only in that one setting, not anywhere else.\u0026rdquo;\u003c/p\u003e \u003cp\u003eLikewise, Rose had school support through having an educational healthcare plan to meet the needs of her child with ARFID. Interestingly, during mealtimes, participants discovered that being \u0026ldquo;distracted\u0026rdquo; (Belle) was useful for their child with ARFID, where attention diverted to something else other than the food:\u003c/p\u003e \u003cp\u003eDaisy: \u0026ldquo;Noah tends to eat when he's distracted. So if he's\u0026hellip; watching something on the television or something like that, that's when he's most comfortable eating.\u0026rdquo;\u003c/p\u003e \u003cp\u003e Generally, participants described some support around food consumption, however this was contrasted with participants who also described that \u0026ldquo;there isn\u0026rsquo;t a huge amount\u0026rdquo; (Daisy) of support for ARFID.\u003c/p\u003e \u003cp\u003e \u003cb\u003eWhere\u0026rsquo;s the support?\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThis subtheme encompasses the missed or inadequate support families with ARFID that participants described experiencing. The scarcity of support was not only described within clinical settings but also in educational settings:\u003c/p\u003e \u003cp\u003eHarriet: \u0026ldquo;We had to go through the educational healthcare plans with school because there\u0026rsquo;s so much for school, but\u0026hellip;they've not supported him at all with his eating and I think that's why he's plummeted\u0026hellip;because they don't understand it. They just said, \u0026lsquo;Oh well, he\u0026rsquo;ll eat when he's hungry\u0026rsquo; [laughs].\u0026rdquo;\u003c/p\u003e \u003cp\u003e One participant explicitly reported their negative view of support in their area:\u003c/p\u003e \u003cp\u003eFlorence: \u0026ldquo;I\u0026rsquo;m absolutely appalled at our services in [location], even down to the dietitian. Now, when [public sector organisation] discharged Oliver and in a nutshell, they only discharged Oliver because they felt there wasn't anything else they could do.\u0026rdquo;\u003c/p\u003e \u003cp\u003eThis was significant, as Florence described feeling that the public sector organisation only discharged her son when they did not feel they could do anything further for him, not when he had demonstrated a clinical improvement with his ARFID. Further to this, participants described support being offered to understanding overarching diagnoses, rather than ARFID itself:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;Everything is put down to the global delay\u0026hellip; they just say, \u0026ldquo;Oh well it's all down to that and his sensory difficulties\u0026rdquo;. I've always been just underpinned by it. And I think in general doctors tend to just try and brush it under the carpet.\u0026rdquo;\u003c/p\u003e \u003cp\u003eThere was a sense that support was inadequate due to professionals having the \u0026ldquo;lack of willingness to acknowledge\u0026rdquo; (Rose) the complexity of what the ARFID diagnosis entailed or understanding of ARFID, and how they can support someone with ARFID. Unfortunately, even with ARFID diagnosed, one participant described receiving no support from the multidisciplinary team.\u003c/p\u003e \u003cp\u003e One participant clearly outlined the damage that professionals could cause by providing advice about supporting a child with ARFID, without being informed about ARFID:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;A new social worker who\u0026hellip; did not understand ARFID at all \u0026hellip; [said that] Mia\u0026rsquo;s not gonna eat if you sit there and watch her eat. So, this went on for a few months and Mia\u0026rsquo;s weight had dropped\u0026hellip; she\u0026rsquo;s gone down to three foods, and she had to go back on feeds. That's because you have one professional come in, doesn't know what they're talking about with ARFID. They'd do this, do that, and all the rest of it, and did so much damage just in six months.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipants described a sense of pressure in establishing support for their child, before and after obtaining the diagnosis of ARFID. For some families, this was described as leading to the breakdown of relationships between professionals and participants, as well as their families and friends.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eDamaged trust\u003c/h2\u003e \u003cp\u003eThis subtheme explores the damaged relationship between participants and professionals as well as with their families, concerning the support they received before and after obtaining the ARFID diagnosis. Most participants indicated that it was a \u0026ldquo;traumatic\u0026rdquo; (Daisy) experience having issues with ARFID and comorbidities, and to have no help for it:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;Mia\u0026rsquo;s case is very complex, because of the trauma of surgery, the trauma of being very sick as well as the sensory issues with autism, and because it's been allowed to go on for 17 years without any intervention.\u0026rdquo;\u003c/p\u003e \u003cp\u003eFor others, ARFID was believed to have originated during traumatic experiences with food during times when they were receiving support with feeding:\u003c/p\u003e \u003cp\u003eIvy: \u0026ldquo;He actually choked when he was\u0026hellip; almost three years old, during a speech and language feeding programme. And there's your origin of ARFID\u0026hellip; his real fear of gagging from that choking incident was just\u0026hellip; it was irreparable really. It was very traumatic.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAlso, families described constantly putting pressure on professionals to ensure the provision of support required for their child:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;Yeah, we basically had to fight for everything we\u0026rsquo;ve got and you kind of wait months and months for it to come.\u0026rdquo;\u003c/p\u003e \u003cp\u003e This pressure for support appeared to be something participants had experienced previously but also currently:\u003c/p\u003e \u003cp\u003eBelle: \u0026ldquo;We\u0026rsquo;re now still fighting for support.\u0026rdquo;\u003c/p\u003e \u003cp\u003eFurthermore, there were some disagreements within families. Rose described not being listened to by some professionals, her own family and her spouse. She believed that she was the only one to see her child\u0026rsquo;s eating habits, and as a result was called \u0026ldquo;a crazy woman\u0026rdquo;, negatively affecting her mental health. She described that the clinical psychologist supporting the family with ARFID stepped in and helped her to maintain strong-will for her child:\u003c/p\u003e \u003cp\u003eRose: \u0026ldquo;It wasn\u0026rsquo;t necessarily just working with him, she was working with me\u0026hellip; empowering the family and how to move forward with ARFID basically.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAlthough there was some help in trying new foods and increasing the food safety net of the child with ARFID, this occasionally backfired and instead led to food avoidance:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;The advice you get from dietitians is totally awful really [laughs] and it doesn\u0026rsquo;t match the way these kids work. \u0026lsquo;Oh, don't give him what he wants\u0026hellip; he\u0026rsquo;ll eat it if he's hungry\u0026rsquo;. But with the ARFID\u0026hellip; you need to have the safe food there\u0026hellip; and not to give them anything that they're gonna really hate\u0026rsquo;. Because\u0026hellip; he\u0026rsquo;s gonna refuse everything.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAnd so, participants felt that experimenting with safe foods was not the answer it will create \u0026ldquo;an even bigger problem\u0026rdquo; (Florence). This leads to the notion that there is distrust with others supporting the person with ARFID as they may have the wrong approach or advice. This was supported by most participants, where most of the knowledge around support comes from the actual families with ARFID:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;You trust these people to give you the right advice? They\u0026rsquo;re the ones that are trained. But actually, they're not always the ones that have the greatest knowledge. You end up being the one that tells them what is.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Looking into the future\u003c/h2\u003e \u003cp\u003eWhile the support was generally described as inadequate, the negative experiences of support became learning curves for participants. The awareness of their experiences of support provides some knowledge and understanding of what to expect when obtaining an ARFID diagnosis for future families who will have to deal with ARFID, which is discussed in this section. This involves the ideas parents have and want to see in the future for ARFID, including recommendations for the community, professionals, and personal advice for families.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eSpreading the word\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eParticipants expressed a hope that there would be an increase in the awareness of ARFID. It was believed that this would lead to some understanding within their community in which people would be able to recognise the issue for what it was, rather than attribute it to another co-occurring diagnosis:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;People can actually pick up it is ARFID. It's not just the autism and start dealing with it as a separate issue. Because it is a separate issue and it needed dealing with correctly from day one.\u0026rdquo;\u003c/p\u003e \u003cp\u003eOthers have also stated that training beforehand would be desirable for professionals in health and school settings:\u003c/p\u003e \u003cp\u003eDaisy: \u0026ldquo;Not even health professionals always really understand.\u0026rdquo;\u003c/p\u003e \u003cp\u003eDaisy: \u0026ldquo;The school day can be absolute hell because\u0026hellip; children with ARFID will be dreading that lunch break. Whether it's being criticized\u0026hellip; what\u0026rsquo;s in their lunch box, or having to somehow navigate what's on offer in the school lunch, tolerating all the smells and sounds\u0026hellip; I think that there needs to be much better training in schools.\u0026rdquo;\u003c/p\u003e \u003cp\u003eThere was a hope that training would also help more families obtain an official ARFID diagnosis, and in turn, will increase the awareness of ARFID:\u003c/p\u003e \u003cp\u003eRose: \u0026ldquo;It\u0026rsquo;s obviously underdiagnosed and under supported\u0026hellip; the more people are diagnosed with it, the stronger voice we have\u0026rdquo;. (Rose)\u003c/p\u003e \u003cp\u003eThough, for ARFID, awareness is still difficult due to the norm around feeding and healthy eating:\u003c/p\u003e \u003cp\u003eIvy: \u0026ldquo;I think there\u0026rsquo;s still that sort of stigma isn\u0026rsquo;t there? \u0026lsquo;Oh, it\u0026rsquo;s a naughty child who just won't eat her vegetables or just won't eat this\u0026rsquo;. It\u0026rsquo;s much more serious than that and I think we\u0026rsquo;re in danger of that. Perhaps dominating and really devaluing the act of seriousness of ARFID.\u0026rdquo;\u003c/p\u003e \u003cp\u003eIt seemed that the more understanding and awareness of the families with ARFID, the possibility of better support that families can provide for their child with ARFID.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eLiving well with ARFID?\u003c/h2\u003e \u003cp\u003eParticipants gave mixed views on how they have tried to live well with the diagnosis. When looking at the negative impacts, participants felt \u0026ldquo;parental blame\u0026rdquo; (Ruby) from professionals and extended families over the feeding patterns of their children, with some parents described defending themselves against criticism:\u003c/p\u003e \u003cp\u003eRose: \u0026ldquo;I look at her and I said to her, \u0026lsquo;Don't you think I\u0026rsquo;ve tried to feed my child all this time? Do you think I'm purposely not feeding him?\u0026rsquo;.\u0026rdquo; (Rose)\u003c/p\u003e \u003cp\u003eAdditionally, participants illustrated the hardship of going out for meals at a restaurant, or even travelling due to ARFID. This resulted in participants describing leading very constrained lifestyles, where some participants have had to quit their jobs in order to support their child with ARFID:\u003c/p\u003e \u003cp\u003eRose: \u0026ldquo;I never went back to work. My job was to keep him alive every day to get enough calories into him so that he was getting sufficient calories.\u0026rdquo;\u003c/p\u003e \u003cp\u003eTo combat these experiences, participants appear to have created ways to get around the negativity from professionals and extended families. Ruby described that the diagnosis provided the validation she needed to counteract that criticism:\u003c/p\u003e \u003cp\u003eRuby: \u0026ldquo;[It] validates that, no, it's not your fault. This is a genuine thing.\u0026rdquo;\u003c/p\u003e \u003cp\u003eOthers conveyed that in order to support their child and live well with ARFID, they must focus on believing that there is hope in the future, even if the path is difficult. Moreover, participants have reported that having some sympathy and empathy towards their child with ARFID is necessary to live well with the diagnosis:\u003c/p\u003e \u003cp\u003eFlorence: \u0026ldquo;I think the worst thing any parent could do is pressurise and try to get him to eat something. I wouldn't like it\u0026hellip; if someone puts something in front of me that I didn't like. How would I cope with that? You know, I\u0026rsquo;d wanna push it away and be adamant. No, I'm not trying it. I don't like it.\u0026rdquo;\u003c/p\u003e \u003cp\u003e In contrast, there were some participants that showed their acceptance and optimism about their child living well with their diagnosis as they get older:\u003c/p\u003e \u003cp\u003eFlorence: \u0026ldquo;I do remain positive and hopeful that maybe he will change\u0026hellip; I\u0026rsquo;m very relaxed about it. I don\u0026rsquo;t get myself stressed. I don\u0026rsquo;t want to upset him. I have to take on board that he\u0026rsquo;s very sensitive as well.\u0026rdquo;\u003c/p\u003e \u003cp\u003eAnd most importantly, when the changes do happen, \u0026ldquo;you should celebrate the wins\u0026rdquo; (Daisy). Moreover, Rose reports that \u0026ldquo;in the long run, it\u0026rsquo;ll be beneficial for your child to understand ARFID\u0026rdquo;. But what is important to note is that families do not have to go through with supporting their child with ARFID alone. There is available non-professional support out there, which the next section will explore.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eYou are not alone\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e Participants in this study wanted to impart the notion that families are not alone in supporting people with ARFID and that there is support for them out there. Participants\u0026rsquo; advice to future ARFID families centred around reassurance that they are \u0026ldquo;not getting it wrong\u0026rdquo; (Daisy) and reassurance around the diagnosis itself:\u003c/p\u003e \u003cp\u003eFlorence: \u0026ldquo;It can be quite daunting and you can feel quite alone with it, especially in that acceptance period because \u0026hellip;.for some people, it's really hard to accept that your child's got this.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipants highlighted obtaining a diagnosis as the top priority for access to support, as it was understood that the diagnosis was the mechanism through which \u0026ldquo;people will listen to you more\u0026rdquo; (Harriet):\u003c/p\u003e \u003cp\u003eNancy: \u0026rdquo;If they don\u0026rsquo;t have a diagnosis, you find it really hard to get anywhere with support. That for us is the most important that we can access the stuff he needs through different means\u0026hellip; if that means that he needs a diagnosis to go along with it, then so be it. We need something to give us that understanding for other people, not just for us.\u0026rdquo;\u003c/p\u003e \u003cp\u003eOne participant expressed optimism that the diagnostic process may have improved from when this was a new diagnosis:\u003c/p\u003e \u003cp\u003eFlorence: \u0026ldquo;It was a new diagnosis out there. The professionals were still trying to get their head around it. So, someone getting a diagnosis now might be in a better position than I was because maybe their professionals are a little bit more on board with it and\u0026hellip; there's probably a lot more research on it now.\u0026rdquo;\u003c/p\u003e \u003cp\u003eMany participants expressed a belief that from trying to obtain the ARFID diagnosis and access to support, you will need to \u0026ldquo;get your battle gear on, prepare for a fight\u0026rdquo; (Ivy). And for this, participants have suggested that families with ARFID should join online support groups:\u003c/p\u003e \u003cp\u003eNancy: \u0026ldquo;I would definitely say you need to join these groups because they\u0026rsquo;re pretty much the best place to get any kind of support or advice from.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipants indicated that it may be scary joining support groups, but it provides the reassurance that families need, and crucially, as other families understand the situation, there is \u0026ldquo;that sense of there is a community out there that understands what you're going through\u0026rdquo; (Nancy).\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e The findings from this study illustrated the experiences of participants around the ARFID diagnostic process for their child with an IDD. There were highs and lows in the diagnostic process, and this juxtaposition of positive and negative experiences also carried through to families\u0026rsquo; experiences of support received for their child\u0026rsquo;s ARFID after the diagnosis process. Importantly, there was a sense of damaged relationships and broken trust between professionals and families. Families in this study also highlighted a few ways forward, mainly ARFID awareness and support, and advice to families who are in similar situations.\u003c/p\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eEncountering the ARFID diagnosis\u003c/h2\u003e \u003cp\u003eInitially, participants gave descriptions of how they came to know ARFID. They indicated their encounters with a number of professionals, similar to those mentioned in literature [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Participant experiences also illustrated the differences in the type and duration of assessments for ARFID. This supports prior research which has highlighted the variety of assessment and screening tools for ARFID [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e], suggesting assessments and treatments may be tailored to symptom presentations (Nicholls, 2018). It would appear that the variations in the assessment process that families described are similar to those previously outlined in the literature [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eSome participants in this study shared their \u0026lsquo;luck\u0026rsquo; into obtaining an ARFID diagnosis, where some have had the finances for a private care pathway for diagnosis and support. This is significant as obtaining a diagnosis for ARFID was clearly challenging for participants, and some noted financial constraints as they had to self-fund their child\u0026rsquo;s diagnosis. Notably, this diagnosis related difficulty affected the recruitment of participants for this study. Many potential participants were excluded due to their child having suspected ARFID, but not having obtained the clinical diagnosis. This presented a situation where families were unable to participate due to the minimal support for ARFID diagnosis available to them, as having a clinical diagnosis was part of the inclusion criteria for the present study, however it also reflected the challenges of obtaining an ARFID diagnosis for their children.\u003c/p\u003e \u003cp\u003eHowever, the American Psychological Association [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e] has recently updated the diagnostic manual as text revised (i.e., DSM-5-TR) to improve the accuracy of ARFID diagnoses. Also recently, the World Health Organisation (WHO) proposed the ICD-11, which included ARFID [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Using the ICD-11 diagnostic criteria was demonstrated to obtain good accuracy in diagnosing ARFID as well as distinguishing it from other eating and feeding disorders [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. These updates to diagnostic manuals could improve the diagnostic process of ARFID within the UK and more widely. This is also particularly relevant given that participants in this study reported challenges in obtaining an ARFID diagnosis.\u003c/p\u003e \u003cp\u003eImportantly, participants have also highlighted some advantages of obtaining an ARFID diagnosis. They described this as having resulted in self-motivated information seeking around ARFID and the desire to educate others, especially family and support services who have limited knowledge around ARFID. Nonetheless, the diagnosis still presents a low prevalence rate when compared to other disorders [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. as well as professionals having minimal understandings of ARFID [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e] which could influence the challenges with obtaining a diagnosis of ARFID. This shows that despite parental efforts to increase ARFID awareness and self-educate about ARFID following an ARFID diagnosis, there are likely to still be limitations in relation to professional knowledge of ARFID.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eThe push for support\u003c/h2\u003e \u003cp\u003e Participants described an important juxtaposition whereby support services for ARFID were minimal, yet essential for these children. Participants also displayed negative connotations towards professionals due to their limited support.\u003c/p\u003e \u003cp\u003eIt was clear that participants portrayed mixed access to support services including health care and educational services, where support seemed minimal for the individual with ARFID. Participants identified the use of psychological therapies (e.g., CBT-AR), which studies have found to be an efficacious treatment for ARFID [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Though, in comparison to the neurotypical population, research has highlighted the difficulties of individuals with IDD in accessing support and treatment, where there may be potentially limited use of psychological therapies.\u003c/p\u003e \u003cp\u003eFurthermore, some participants appeared to gain more medical support rather than psychological treatment concerning their weight. This highlighted the feeling of not being heard in which they experienced that medical professionals were more likely to focus on and address physiological conditions rather than to consider the effect of mental conditions on the individual. This appears to be a repeating discovery in the feeding literature around support, where families felt that medical professionals do not listen or believe their accounts [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. It could be said that perhaps the holistic view of the patient with ARFID is unconsciously ignored and is in favour of addressing specific medical conditions. This is significant in the support for ARFID as it signifies that the medical conditions alongside ARFID could be easier to deal with than the diagnosis itself. Consequently, this shows that, perhaps through multidisciplinary collaboration, treatments can be individually tailored to the core needs of the individual with ARFID as well as their medical conditions [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. However, the actual implemented support for participants was still scarce within clinical and educational settings, where negative connotations were displayed towards professionals due to their limited support.\u003c/p\u003e \u003cp\u003eDiagnostic overshadowing was also prominent during support. Participants have felt that professionals used the complexity and severity of their child\u0026rsquo;s IDD to explain the difficult feeding behaviours rather than recognising ARFID. There is compelling evidence of feeding difficulties within the IDD population [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e], where ARFID can co-occur [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Still, the support for the person with ARFID and co-occurring IDD is perceived as minimal by families, which could perhaps complicate the receipt of support for children with IDD exhibiting ARFID-like behaviours.\u003c/p\u003e \u003cp\u003eFurthermore, the view of damaged trust was observed from participant experiences where untrained professionals made recommendations which led to negative impacts towards individuals with ARFID from the services which families trusted would be able to support their children to improve their food consumption. Research into individuals diagnosed with feeding disorders alongside autism have shown this to be a common case where at times families had their views dismissed and were just generally viewed as \u0026lsquo;bad parenting\u0026rsquo; [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eBut despite families receiving criticism and judgement for the ways in which they supported their child with ARFID, they are clearly instrumental in supporting their children. The findings from this study highlighted the importance of families being able to accept the diagnosis in order to be able to divert their focus towards supporting their child with ARFID with their eating behaviours. Research shows the encouragement for parents to continually support their child with ARFID using feeding strategies, albeit continuing to observe some degree of food avoidance [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. This signifies the value of families, where the knowledge and training of support for the child is abundant. For example, research has shown the importance of the family influence in support in feeding of those within the IDD and feeding population [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. This demonstrates the effectiveness of working with families in order to implement good standards of care, especially during meal times.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eThe future with ARFID\u003c/h2\u003e \u003cp\u003eParticipants shared their experiences and proposed recommendations for ARFID. Increased awareness was thought to be key. Many studies have also supported the idea of increasing awareness, particularly for clinicians to be educated and trained in supporting people with ARFID [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Perhaps the more understanding and awareness there is, then the better accuracy of diagnosing ARFID and implementation of support available.\u003c/p\u003e \u003cp\u003e Although participants accepted the diagnosis and have tried to be optimistic of the future, there was the hardship of living with the guilt and anxiety of trying to support their child with ARFID. The stressful and overwhelming experience of supporting an individual with feeding difficulties is not new and has been a significant concern within the feeding literature [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. The study by Rogers et al. (2012) strongly reiterates the negative feelings of parents, especially mothers, as they worry about the health consequences of their child with feeding difficulties. Despite this, parents try hard to maintain a positive atmosphere around the individual with ARFID, where research has shown an optimistic perspective around food intake could possibly aid in improving their feeding behaviours [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Studies have also shown the family value in support for individuals with ARFID, especially during interventions where parents could independently support their child at home [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Though, from the participants\u0026rsquo; views, this does not appear to be happening. Through constant battling with support services, it was found that only one family had support from a clinical psychologist. Perhaps it would be effective for clinicians to include families in supporting the individual with ARFID (i.e., family-based treatments), which may be the way forward to allow families and professionals to collaborate in supporting the child with ARFID. Consequently, this highlights the benefits of a good collaboration between professionals and families when developing and discussing tools and interventions for individuals with ARFID that have intellectual disabilities [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFinally, all participants provided some encouraging and practical advice for families with ARFID who are struggling. It was generally highlighted that their initial difficulties arose before obtaining the ARFID diagnosis; therefore, obtaining the diagnosis is the first step in support. However, even though it is emphasised as a priority, it is important to reconcile that obtaining the diagnosis may not always be possible. Accordingly, participants voiced the lack of support from feeding services when having an unofficial ARFID diagnosis, also having no availability of support within the area they reside. But more importantly, this could be because the understanding and known prevalence of ARFID is still thought to be insignificant within eating and feeding disorders for families as well as professionals [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Therefore, the increased awareness of ARFID is necessary to invite better access to support services with educated and trained clinicians [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAdditionally, there was a sense of community with parents whose children have suspected or clinical diagnoses of ARFID, where recommendations were to join social media ARFID groups to contact other families in similar situations. The findings from this study indicated that while there may be limited support from services, the community is able to be part of the third-party support families may need.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eNotably, this diagnosis related difficulty affected the recruitment of participants for this study. Many potential participants were excluded due to their child having suspected ARFID, but not having obtained the clinical diagnosis, which posed a limitation for the study. This presented a situation where families were unable to participate due to the minimal support for ARFID diagnosis available to them, as having a clinical diagnosis was part of the inclusion criteria for the present study, however it also reflected the challenges of obtaining an ARFID diagnosis for their children.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003eImplications for research and clinical practice\u003c/h2\u003e \u003cp\u003eThe findings from this study could provide significant insight to professionals about the family experience during ARFID diagnosis, and the relevant professionals should consider this when supporting families through this process. In terms of research, as only individuals with an official diagnosis were recruited, future studies should seek to include families who suspect their child has ARFID but whom have not obtained a clinical diagnosis. This is in order to explore their experiences and potentially compare with those who have a clinical diagnosis, where some have been referred to specific care pathways [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAdditionally, this research has shed light onto the challenges of obtaining an ARFID diagnosis, which would be important for clinical commissioning groups in the NHS to consider to improve accessibility of services for families in need. Moreover, given the findings highlighted from this study about the potential for diagnostic overshadowing, it would be important for future research to examine the differences in diagnostic processes and support when IDD is not present alongside ARFID. This would allow for a clearer picture of what ARFID might look like both in typically developing and IDD populations, and this may support with minimising difficulties like diagnostic overshadowing.\u003c/p\u003e \u003cp\u003eUltimately, this study has focused on the experience of families during the ARFID diagnostic process. It would be beneficial for research to be conducted on professionals\u0026rsquo; experiences of the ARFID diagnostic process and their diagnostic confidence, given that families expressed concerns about professionals\u0026rsquo; abilities to identify ARFID. This should also closely consider the IDD population. With regards to support, there is limited research involving families in understanding diagnostic processes and the expectations. Consequently, it may be important to consider family values when obtaining a diagnosis, possibly encouraging clinicians and professionals to involve family suggestions when obtaining an ARFID diagnosis and reflect on what services have been very beneficial for families. Future research could also be conducted with families supporting individuals with ARFID. This may support collaboration between clinicians and families, which may result in good therapeutic alliance between the family and clinician.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eTo date, the exploration of family experiences on the diagnostic process of ARFID is little-to-none. This study has provided insight into the lived experience of families of children with co-occurring IDD and ARFID of going through the diagnostic process. This study has also highlighted the ways in which families have been impacted by this process. Findings have illustrated the mixed views on ARFID, including the diagnostic process, the limited awareness for ARFID, and how these may have impacted the support available. Although there were challenges with recruitment, implications for research and practice are provided. Additionally, as there are more updated diagnostic modules (e.g., DSM-5-TR, ICD-11), there is hope that there will be less misunderstandings and misdiagnoses of ARFID.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eARFID\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eAvoidant Restrictive Food Intake Disorder\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eIDD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eIntellectual and Developmental Disabilities\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eICD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eInternational Classification of Diseases and Related Health Problems\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eDSM\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDiagnostic and Statistical Manual of Mental Disorders\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003eAcknowledgements\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003eAuthor contributions\u003c/p\u003e\n\u003cp\u003eThis project was completed in partial fulfilment of J.J.D\u0026apos;s Masters degree with S.M-B as their supervisor. J.J.D recruited participants, gathered and analysed the data, produced initial tables, and wrote the main manuscript text. S.M-B came up with the idea for the study and oversaw the project and provided supervision. S.M-B also supported with piloting interviews and provided guidance and suggestions on the writing of the manuscript. Both authors have reviewed and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003eFunding\u003c/p\u003e\n\u003cp\u003eThis research received no funding.\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials\u003c/p\u003e\n\u003cp\u003eThe datasets generated and analysed during the current study are confidential due to the need to protect the privacy of participants.\u003c/p\u003e\n\u003cp\u003eEthics approval and consent to participate\u003c/p\u003e\n\u003cp\u003eThis study received ethical approval from the Tizard Centre Ethics Committee at the University of Kent, Canterbury. All participants gave written and verbal consent for participation and for their data to be included in this research.\u003c/p\u003e\n\u003cp\u003eConsent for publication\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003eCompeting interests\u003c/p\u003e\n\u003cp\u003eBoth authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003eAuthor details\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e1\u003c/sup\u003eTizard Centre, School of Social Policy, Sociology and Social Research, University of Kent, Cornwallis North East, Canterbury, United Kingdom. \u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAmerican Psychiatric Association. Eating and Feeding Disorders. Diagnostic and statistical manual of mental disorders. 5th ed. APA; 2013. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1176/appi.books.9780890425596\u003c/span\u003e\u003cspan address=\"10.1176/appi.books.9780890425596\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNicholls D. ARFID and Other Eating Disorders of Childhood. In: J. Hebebrand \u0026amp; B. Herpertz-Dahlmann, B, editors \u003cem\u003eEating Disorders and Obesity in Children and Adolescents\u003c/em\u003e. 2018. p.29\u0026ndash;33.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFisher MM, Rosen DS, Ornstein RM, Mammel KA, Katzman DK, Rome ES, et al. Characteristics of avoidant/restrictive food intake disorder in children and adolescents: a new disorder in DSM-5. J Adolesc Health. 2014;55(1):49\u0026ndash;52. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.jadohealth.2013.11.013\u003c/span\u003e\u003cspan address=\"10.1016/j.jadohealth.2013.11.013\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNicely TA, Lane-Loney S, Masciulli E, Hollenbeak CS, Ornstein RM. Prevalence and characteristics of avoidant/restrictive food intake disorder in a cohort of young patients in day treatment for eating disorders. J Eat disorders. 2014;2(1):1\u0026ndash;8. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s40337-014-0021-3\u003c/span\u003e\u003cspan address=\"10.1186/s40337-014-0021-3\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBryant-Waugh R, Micali N, Cooke L, Lawson EA, Eddy KT, Thomas JJ. Development of the Pica, ARFID, and Rumination Disorder Interview, a multi‐informant, semi‐structured interview of feeding disorders across the lifespan: A pilot study for ages 10\u0026ndash;22. Int J Eat Disord. 2019;52(4):378\u0026ndash;87. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.22958\u003c/span\u003e\u003cspan address=\"10.1002/eat.22958\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBryant-Waugh R, Higgins C, editors. Avoidant restrictive food intake disorder in childhood and adolescence: a clinical guide. Routledge; 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMurray HB, Bailey AP, Keshishian AC, Silvernale CJ, Staller K, Eddy KT et al. (2020). Prevalence and characteristics of avoidant/restrictive food intake disorder in adult neurogastroenterology patients. \u003cem\u003eClinical Gastroenterology and Hepatology\u003c/em\u003e, 2020;18(9): 1995\u0026ndash;2002. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.cgh.2019.10.030\u003c/span\u003e\u003cspan address=\"10.1016/j.cgh.2019.10.030\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEddy KT, Thomas JJ, Hastings E, Edkins K, Lamont E, Nevins CM, et al. Prevalence of DSM-5 avoidant/restrictive food intake disorder in a pediatric gastroenterology healthcare network. Int J Eat Disord. 2015;48(5):464\u0026ndash;70. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.22350\u003c/span\u003e\u003cspan address=\"10.1002/eat.22350\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCooper-Vince CE, Nwaka C, Eddy KT, Misra M, Hadaway NA, Becker KR, et al. The factor structure and validity of a diagnostic interview for avoidant/restrictive food intake disorder in a sample of children, adolescents, and young adults. Int J Eat Disord. 2022. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.23792\u003c/span\u003e\u003cspan address=\"10.1002/eat.23792\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDinkler L, Yasumitsu-Lovell K, Eitoku M, Fujieda M, Suganuma N, Hatakenaka Y, et al. 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. 2022;2(3):e12094. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1101/2021.11.08.21265646\u003c/span\u003e\u003cspan address=\"10.1101/2021.11.08.21265646\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSchalock RL, Borthwick-Duffy SA, Bradley VJ, Buntinx WH, Coulter DL, Craig EM et al. \u003cem\u003eIntellectual disability: Definition, classification, and systems of supports\u003c/em\u003e. American Association on Intellectual and Developmental Disabilities. 444 North Capitol Street NW Suite 846, Washington, DC 20001. 2010.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCenters for Disease Control and Prevention. \u003cem\u003eCauses and Risk Factors\u003c/em\u003e. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.cdc.gov/ncbddd/developmentaldisabilities/causes-and-risk-factors.html\u003c/span\u003e\u003cspan address=\"https://www.cdc.gov/ncbddd/developmentaldisabilities/causes-and-risk-factors.html\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e [Accessed 28th April 2022].\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSchalock RL, Luckasson R, Tass\u0026eacute; MJ. The contemporary view of intellectual and developmental disabilities: Implications for psychologists. Psicothema. 2019. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.7334/psicothema2019.119\u003c/span\u003e\u003cspan address=\"10.7334/psicothema2019.119\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eManikam R, Perman JA. Pediatric feeding disorders. J Clin Gastroenterol. 2000;30(1):34\u0026ndash;46.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZickgraf HF, Richard E, Zucker NL, Wallace GL. Rigidity and sensory sensitivity: Independent contributions to selective eating in children, adolescents, and young adults. J Clin Child Adolesc Psychol. 2020;1\u0026ndash;13. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1080/15374416.2020.1738236\u003c/span\u003e\u003cspan address=\"10.1080/15374416.2020.1738236\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSharp WG, Volkert VM, Stubbs KH, Berry RC, Clark MC, Bettermann EL, et al. Intensive multidisciplinary intervention for young children with feeding tube dependence and chronic food refusal: an electronic health record review. J Pediatr. 2020;223:73\u0026ndash;80. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.jpeds.2020.04.034\u003c/span\u003e\u003cspan address=\"10.1016/j.jpeds.2020.04.034\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZimmerman J, Fisher M. Avoidant/restrictive food intake disorder (ARFID). Curr Probl Pediatr Adolesc Health Care. 2017;47(4):95\u0026ndash;103. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.cppeds.2017.02.005\u003c/span\u003e\u003cspan address=\"10.1016/j.cppeds.2017.02.005\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eARFID Awareness UK. \u003cem\u003eARFID \u0026amp; AUTISM\u003c/em\u003e. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.arfidawarenessuk.org/the-link-with-autism-1\u003c/span\u003e\u003cspan address=\"https://www.arfidawarenessuk.org/the-link-with-autism-1\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e [Accessed 28th April 2022].\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJackson BN, Turner LA, Kevany GL, Purdy SC. Five years of Avoidant/Restrictive Food Intake Disorder: no consensus of understanding among health professionals in New Zealand. Speech Lang Hear. 2022;25(1):37\u0026ndash;45. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1080/2050571X.2021.1926620\u003c/span\u003e\u003cspan address=\"10.1080/2050571X.2021.1926620\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOrnstein RM, Rosen DS, Mammel KA, Callahan ST, Forman S, Jay MS, et al. Distribution of eating disorders in children and adolescents using the proposed DSM-5 criteria for feeding and eating disorders. J Adolesc Health. 2013;53(2):303\u0026ndash;5. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.jadohealth.2013.03.025\u003c/span\u003e\u003cspan address=\"10.1016/j.jadohealth.2013.03.025\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNorris ML, Katzman DK. Change is never easy, but it is possible: reflections on avoidant/restrictive food intake disorder two years after its introduction in the DSM-5. J Adolesc Health. 2015;57(1):8\u0026ndash;9. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.jadohealth.2015.04.021\u003c/span\u003e\u003cspan address=\"10.1016/j.jadohealth.2015.04.021\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHarrison A. Falling Through the Cracks: UK Health Professionals\u0026rsquo; Perspective of Diagnosis and Treatment for Children and Adolescents with Avoidant/Restrictive Food Intake Disorder. Child Care in Practice. 2021;1\u0026ndash;11. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1080/13575279.2021.1958751\u003c/span\u003e\u003cspan address=\"10.1080/13575279.2021.1958751\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eARFID Awareness UK. \u003cem\u003eTREATING ARFID\u003c/em\u003e. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.arfidawarenessuk.org/treatment\u003c/span\u003e\u003cspan address=\"https://www.arfidawarenessuk.org/treatment\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e [Accessed 28th April 2022].\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDavis E, Stone EL. Avoidant restrictive food intake disorder\u0026mdash;more than just picky eating: a case discussion and literature review. J Nurse Practitioners. 2020;16(10):713\u0026ndash;7. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.nurpra.2020.08.011\u003c/span\u003e\u003cspan address=\"10.1016/j.nurpra.2020.08.011\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOliveira SB, Kaul A. Invited Commentary Re: Prevalence and Characteristics of Avoidant/Restrictive Food Intake Disorder in Pediatric Neurogastroenterology Patients. J Pediatr Gastroenterol Nutr. 2022;74(5):547\u0026ndash;8. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1097/MPG.0000000000003431\u003c/span\u003e\u003cspan address=\"10.1097/MPG.0000000000003431\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDumont 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\u0026ndash;58. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.23053\u003c/span\u003e\u003cspan address=\"10.1002/eat.23053\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eThomas JJ, Becker KR, Kuhnle MC, Jo JH, Harshman SG, Wons O, et al. Cognitive-behavioral therapy for avoidant/restrictive food intake disorder: Feasibility, acceptability, and proof‐of‐concept for children and adolescents. Int J Eat Disord. 2020;53(10):1636\u0026ndash;46. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.23355\u003c/span\u003e\u003cspan address=\"10.1002/eat.23355\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eG\u0026ouml;rmez A, Kılı\u0026ccedil; A, Kırpınar İ. Avoidant/restrictive food intake disorder: An adult case responding to cognitive behavioral therapy. Clin Case Stud. 2018;17(6):443\u0026ndash;52. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1534650118795286\u003c/span\u003e\u003cspan address=\"10.1177/1534650118795286\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTaylor T. Use of an exit criterion for a clinical paediatric feeding case in-home. J Dev Phys Disabil. 2021;33(3):475\u0026ndash;88. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s10882-020-09759-5\u003c/span\u003e\u003cspan address=\"10.1007/s10882-020-09759-5\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTaylor T, Blampied N, Roglić N. Controlled case series demonstrates how parents can be trained to treat paediatric feeding disorders at home. Acta Paediatr. 2021;110(1):149\u0026ndash;57. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/apa.15372\u003c/span\u003e\u003cspan address=\"10.1111/apa.15372\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKim YK, Di Martino JM, Nicholas J, Rivera-Cancel A, Wildes JE, Marcus MD, et al. Parent strategies for expanding food variety: Reflections of 19,239 adults with symptoms of Avoidant/Restrictive Food Intake Disorder. Int J Eat Disord. 2022;55(1):108\u0026ndash;19. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.23639\u003c/span\u003e\u003cspan address=\"10.1002/eat.23639\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLock J, Sadeh-Sharvit S, L'Insalata A. Feasibility of conducting a randomized clinical trial using family‐based treatment for avoidant/restrictive food intake disorder. Int J Eat Disord. 2019;52(6):746\u0026ndash;51. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.23077\u003c/span\u003e\u003cspan address=\"10.1002/eat.23077\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRosania K, Lock J. Family-based treatment for a preadolescent with avoidant/restrictive food intake disorder with sensory sensitivity: a case report. Front Psychiatry. 2020;11:350. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3389/fpsyt.2020.00350\u003c/span\u003e\u003cspan address=\"10.3389/fpsyt.2020.00350\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77\u0026ndash;101. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1191/1478088706qp063oa\u003c/span\u003e\u003cspan address=\"10.1191/1478088706qp063oa\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCoolican H. Research methods and statistics in psychology. Psychology press; 2017.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmerican Psychiatric Association. Eating and Feeding Disorders. In: \u003cem\u003eDiagnostic and statistical manual of mental disorders\u003c/em\u003e. text rev) APA. 2022. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1176/appi.books.9780890425787\u003c/span\u003e\u003cspan address=\"10.1176/appi.books.9780890425787\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. 5th ed..\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWorld Health Organization. Feeding and Eating Disorders. International Statistical Classification of Diseases and Related Health Problems. 11th ed. WHO; 2019. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://icd.who.int/\u003c/span\u003e\u003cspan address=\"https://icd.who.int/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eClaudino AM, Pike KM, Hay P, Keeley JW, Evans SC, Rebello TJ, et al. The classification of feeding and eating disorders in the ICD-11: results of a field study comparing proposed ICD-11 guidelines with existing ICD-10 guidelines. BMC Med. 2019;17(1):1\u0026ndash;17. 10.1186%2Fs12916-019-1327-4.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTan J, Cocks N, Claessen M. Mothers\u0026rsquo; perspectives of support for their child with feeding/swallowing disorders. Speech, Language and Hearing., Norris ML, Obeid N, Santos A, Valois DD, Isserlin L, Feder S et al. Treatment needs and rates of mental health comorbidity in adolescent patients with ARFID. \u003cem\u003eFrontiers in Psychiatry\u003c/em\u003e, 2021;1144. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3389/fpsyt.2021.680298\u003c/span\u003e\u003cspan address=\"10.3389/fpsyt.2021.680298\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKambanis PE, Kuhnle MC, Wons OB, Jo JH, Keshishian AC, Hauser K, et al. Prevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/restrictive food intake disorder. Int J Eat Disord. 2020;53(2):256\u0026ndash;65. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/eat.23191\u003c/span\u003e\u003cspan address=\"10.1002/eat.23191\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBurkett K, Haggard ML, Van Rafelghem D, Harpster K. Restricted eating in preschoolers with autism: Mother stressors and solutions. J Autism Dev Disord. 2021:1\u0026ndash;9. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1007/s10803-021-05078-6\u003c/span\u003e\u003cspan address=\"10.1007/s10803-021-05078-6\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRogers LG, Magill-Evans J, Rempel GR. Mothers\u0026rsquo; challenges in feeding their children with autism spectrum disorder\u0026mdash;Managing more than just picky eating. J Dev Phys Disabil. 2012;24:19\u0026ndash;33. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1007/s10882-011-9252-2\u003c/span\u003e\u003cspan address=\"10.1007/s10882-011-9252-2\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAdams SN, Dadabhay A, Neille J. An exploration into mothers\u0026rsquo; experiences of feeding children with autism spectrum disorder in South Africa. Folia Phoniatr et Logopaedica. 2021;73(3):164\u0026ndash;73. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1159/000507928\u003c/span\u003e\u003cspan address=\"10.1159/000507928\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSuarez MA, Atchison BJ, Lagerwey M. Phenomenological examination of the mealtime experience for mothers of children with autism and food selectivity. Am J Occup Therapy. 2014;68(1):102\u0026ndash;7. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.5014/ajot.2014.008748\u003c/span\u003e\u003cspan address=\"10.5014/ajot.2014.008748\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eParr J, Pennington L, Taylor H, Craig D, Morris C, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, Garland D. Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study. Health Technol Assess (Winchester Eng). 2021;25(22):1. https://doi.org/10.3310%2Fhta25220.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"ARFID, diagnostic process, family experiences, Intellectual and developmental disabilities","lastPublishedDoi":"10.21203/rs.3.rs-3824107/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3824107/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e \u003cb\u003eBackground\u003c/b\u003e The prevalence of Avoidant Restrictive Food Intake Disorder (ARFID) is generally low among the eating and feeding disorders population. The complexity of the diagnosis, along with its potential comorbidities (e.g., Intellectual and Developmental Disabilities), had led to difficulties in diagnosing ARFID, with limited support and treatment available. This study therefore asked families with lived experience of the ARFID diagnostic process and their access to support for diagnostic evaluation and understandings of available support.\u003c/p\u003e \u003cp\u003e \u003cb\u003eMethod\u003c/b\u003e Data was collected through a qualitative approach using online semi-structured interviews investigating eight participants\u0026rsquo; experiences of their children undergoing the ARFID diagnostic process and their access to support. Responses were subjected to thematic analysis.\u003c/p\u003e \u003cp\u003e \u003cb\u003eResults\u003c/b\u003e From thematic analysis, three major themes were identified: the ups and downs of diagnosis, pushing for support, and looking into the future.\u003c/p\u003e \u003cp\u003e \u003cb\u003eConclusions\u003c/b\u003e Participants\u0026rsquo; experiences surrounded the \u0026lsquo;lucky\u0026rsquo; encounters with the ARFID diagnosis, where the limited support was emphasised. The findings highlighted the need for an improved ARFID diagnostic process for better awareness and support availability for families living with ARFID. Recommendations from study findings were provided for readers and researchers.\u003c/p\u003e","manuscriptTitle":"Obtaining an Avoidant Restrictive Food Intake Disorder diagnosis in The UK for Individuals with Intellectual and Developmental Disabilities: A Qualitative Study of Families’ Experiences","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-01-10 06:09:05","doi":"10.21203/rs.3.rs-3824107/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"c2a0cef8-de09-42af-913c-0d5d22d21152","owner":[],"postedDate":"January 10th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-05-23T20:23:30+00:00","versionOfRecord":[],"versionCreatedAt":"2024-01-10 06:09:05","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3824107","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3824107","identity":"rs-3824107","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}