A Taste of Progress: A Qualitative Evaluation of Caregiver Experiences in a Tertiary Feeding Disorder Service for Young People With Avoidant Restrictive Food Intake Disorder (ARFID)

Carers’ Experiences of Emotional Overwhelm and Helplessness

Across the interviews, the emotional toll on parents and caregivers was a dominant theme. Many described feeling overwhelmed by stress, helplessness, and exhaustion:

I’m just lying awake at night worrying and crying… how can I help him? I don’t know what to do—I don’t have the tools to know how to help him. And I think that is the hardest thing.

Another parent shared constant anxiety that accompanies caring for a child with ARFID:

It’s anxiety. Constant anxiety, you know, always. And I feel myself triggered at certain point in time, when I know that she’s not had a lot for maybe a few days, a couple of days, whatever, and I can feel myself wanting to lose it at her.

Additionally, caregivers often struggled with others’ lack of understanding, compounding their sense of isolation. One parent shared:

Your worst nightmare is what happens if they get seriously sick and you’re living with that possibility all the time. You end up becoming quite resilient, you don’t need people undermining that worry because it just is what it is. You’re worried.”

These reflections illustrate how ARFID profoundly affects family well-being and parents’ sense of competence. The emotional strain was frequently linked to uncertainty and the perceived lack of knowledge and resources surrounding ARFID, leaving caregivers feeling unsupported and ill-equipped to manage their child’s needs.

Managing Financial Strain and Resource Constraints

Alongside the emotional burden, parents frequently described significant financial pressures associated with caring for a child with ARFID. These challenges were primarily linked to the cost of preferred or “safe” foods, reliance on specific brands, and expenses incurred for travel to specialist appointments. For many families, following clinical advice or implementing dietary recommendations was complicated by budget constraints. One parent explained:

I will go to the shop and buy him anything if he’ll eat it… my food bill is over one and a half thousand pounds a month.

Others highlighted the unsustainable nature of preferred foods:

I know lots of parents that have got stuck going to McDonald’s seven days a week and that’s not financially viable.

One parent also noted that travel for specialist care added further strain:

Appointments at… take 10 minutes, but the travel costs and time off work are huge.

These findings demonstrate how financial strain permeates everyday life for families managing ARFID. For many, these pressures limited their ability to follow clinical recommendations, forcing difficult decisions about which strategies were affordable. This financial compromise often intensified feelings of guilt and stress, illustrating how practical constraints intersect with the emotional burden placed on carers.

Navigating Stigma and Social Misunderstanding

Parents frequently described experiencing judgment from others, both in public settings and within their extended families, regarding their child’s feeding difficulties. Social scrutiny often intensified feelings of isolation and defensiveness, compounded by a widespread lack of awareness about ARFID. One parent expressed frustration:

It’s seen as a middle-class affectation in the press, like parents being dramatic.

The perception of misunderstanding extended beyond strangers to immediate social networks. Families reported that even well meaning relatives and friends frequently offered simplistic explanations or advice, often minimising the complexity of ARFID. Another parent reflected:

We needed strength to block out the noise from society, and I’m gonna include family in that as well. They keep saying give her this and that… It’s about educating—it is not just a fussy child.

Encountering Delays in Accessing Support

Caregivers consistently described significant delays in accessing appropriate support for their child’s feeding difficulties. Carers reported being passed between services, such as secondary care services and paediatrics, without clear guidance or recognition of ARFID:

We were ping-ponged between CAMHS and paediatrics for over a year.

These delays often occurred despite evident clinical need, contributing to emotional distress and a sense of helplessness:

Even though she was clearly struggling, CAMHS said she didn’t meet the threshold.

The frustration was further echoed by another parent:

I thought, how low does his weight have to go before we get help?

These accounts underscore the urgent need for streamlined referral pathways and the absence of clear criteria for ARFID, which left families without timely intervention.

Confronting Lack of Awareness Among Professionals

Caregivers frequently reported that healthcare professionals in primary and secondary care lacked awareness of ARFID, further contributing to delays in diagnosis and appropriate support. Parents described feeling compelled to educate clinicians themselves, often encountering professionals who had never heard of the condition:

I had to educate the clinicians myself because they had never heard of ARFID.

This lack of recognition often resulted in misdirection to services that were not equipped to manage feeding difficulties, hindering early engagement and prolonging distress. As one parent explained:

Primary care services haven’t heard of it… or where to go when you feel this concern for your child, and how to find the right help within the care system.

These accounts underscore a systemic gap in professional knowledge, highlighting the need for targeted training alongside clearer referral pathways to ensure timely and appropriate support for families.

Adjusting Expectations in the Face of Uncertainty

Given these systemic knowledge gaps and fragmented referral pathways, setting realistic expectations emerged as a critical component of care. Parents emphasized that, in the absence of clear information from professionals, they often entered treatment hoping for rapid improvement, only to experience frustration and self-blame when progress was slow:

You think you’re doing something wrong every day because nothing changes quickly.

However, parents noted that honest conversations about the likely long-term nature of ARFID were essential for reducing anxiety and fostering resilience:

Don’t expect this is going to be your answer, it is a lifelong journey… let’s hope one day he does expand his diet, but I think that if you know beforehand you will not get him miraculously eating again, it is quite useful.

Taken together, these accounts suggest the importance of managing expectations as part of an early intervention, particularly alongside ongoing systemic barriers and an overall lack of awareness of ARFID.

Negotiating the Role of Enteral Feeding

Alongside psychological interventions, parents expressed complex and often conflicting feelings about enteral feeding interventions. While many acknowledged its critical role in safeguarding neurological development and overall health, they also questioned whether it was always necessary:

I sometimes think, could I have gotten away without that PEG (percutaneous endoscopic gastrostomy)? But then I think, I don’t know if developmentally that would have been putting her at risk.

Despite recognising its protective role, several parents reported that once their child became reliant on tube feeding, oral exposure to food often declined or ceased altogether. One parent noted:

It was sort of sold as a bit of a lifeline when really, I felt it should have just been like it's there as your safety net. Because it was used as her main food source for everything, I felt like the rest of it kind of got put to the side and got in the way of oral intake.

This reflects concerns that enteral feeding, if not paired with ongoing oral exposure strategies, may inadvertently hinder progress toward oral feeding.

Parents also spoke about the stigma surrounding feeding tubes and the lack of understanding from others. One parent expressed frustration:

There’s already, like, there’s a negative approach anyway, I think around feeding tubes, to then be compounded by seeing a child with a feeding tube, is eating pasta, well, actually, you have no idea how we got to the bowl of pasta, this is Olympic gold standard for us.

This quote illustrates how outsiders may misinterpret milestones, overlooking the immense effort behind small achievements and reinforcing stigma.

Prioritising Child-Led and Low-Pressure Approaches

A prevalent subtheme across interviews was the positive impact of interventions adopting a child-led approach. Parents consistently described how prioritising the child’s voice, pacing enhanced engagement, and adapting interventions based on developmental stages strengthened the therapeutic alliance and improved treatment outcomes:

The sessions were amazing because it was at [child’s] pace, but also with that mindfulness—of yes, I know you want to play, but it’s going to bring in a bit of tasting.

Parents also described how adopting a child-led approach themselves reduced pressure and reframed expectations around mealtimes. This approach was viewed as essential for promoting gradual progress and reducing anxiety for both children and caregivers:

Maybe just have that understanding. Yeah, your child doesn’t need to finish everything on that plate. You know, not to be as fearful.

Alongside this, carers highlighted the importance of continued exposure and repetition, recognising that ARFID interventions often require revisiting strategies over time as developmental stages and motivation shift. One parent reflected:

I tried to learn as much as I can. If I’ve tried something, it didn’t work and I’ve forgotten about it—if I revisit it at a later stage, she’s potentially going to respond differently because she is older and bigger.

Taken together, these quotes illustrate that ARFID treatment may benefit from a dual focus: child-led, low-pressure approaches tailored to developmental readiness.

Adapting Interventions for Comorbid Conditions

Given the high prevalence of co-occurring conditions such as autism and ADHD among children with ARFID, parents consistently highlighted the need for tailored service adaptations. These adaptations were seen as essential for ensuring interventions are effective and sensitive to neurodivergent needs.

One parent described a negative experience with an inaccurate social story, a tool commonly used to prepare children for upcoming appointments by providing a simple, visual narrative of what will happen and what is expected:

Some of the information on the social story didn’t happen in real life when we got there… Now in our case, this wasn’t a big deal… But I would say more broadly speaking, for families, it’s important if it’s on a social story, it happens—for some kids, it’s a deal breaker.

This underscores the importance of predictability and routine for children with autism, where discrepancies between expectations and reality can significantly impact engagement and trust in the service.

Another parent emphasised the value of structured approaches, specifically the use of graded exposure, a technique within CBT encompassing gradual exposure to feared situations, and scaling techniques within therapy to reduce anxiety

Grading was useful… I think his autistic brain uses that to help anxiety. If you can put a number to something, it feels like how his brain works, and that helps

Lastly, one parent stressed the need to recognise diverse communication methods within the service, ensuring that a child’s voice is not overshadowed by adult assumptions:

If you were a grown adult, you wouldn’t be allowing me to make a non-informed choice. If I’m clearly communicating in whatever means a child chooses to communicate, like non-verbal… I think that actually any action is a form of communication, and that’s being lost.

The Value of Clinician Empathy and Responsiveness

Carers consistently emphasised the importance of clinicians who are responsive, empathetic, and able to build trust through clear communication. Responsiveness was described not only in terms of timely action but also in the ability to listen and validate concerns. Empathy was seen as a cornerstone of effective care, reducing parental anxiety and fostering a sense of partnership:

I was so grateful when we got to you guys because you understood. I felt listened to, he felt listened to, and he formed a really good relationship with (therapist)—the only one he’s ever really formed.

Additionally, one carer highlighted the value of timely and responsive digital communication with their named clinician through the service’s messaging platform:

She’s amazing. Anything I need to know, or I am confused about, I just go onto the app and ask. And I’m so glad. I feel like someone’s listening.

Such reflections suggest that timely, empathetic communication, both face-to-face or via digital platforms, was viewed as essential for building trust within the service.

Finding Strength Through Peer Support

A further sub-theme identified was the availability of peer support throughout the service, particularly in relation to the Parent Intervention Programme (PIP). Parents described the significant emotional impact of connection with others who shared similar experiences. Additionally, being part of a structured intervention helped normalise their experiences and reduced feelings of isolation, which are often exacerbated by the invisibility of ARFID:

When you get there (PIP), it makes sense that you’re not the only parent or your child isn’t the only one suffering.

However, a gap in peer support provision was noted for young people themselves:

He’s never met anybody else with ARFID. I’m on a Facebook group… and we support each other. (He) has asked if he could meet somebody else with ARFID.

Although PIP fostered a sense of community among caregivers, children with ARFID might continue to feel isolated in their experiences. Parents expressed a desire for future service development to facilitate safe peer connections, recognising the potential psychosocial benefits of knowing they are not alone.

The Benefits of Coordinating Care Across Systems

Carers highlighted the importance of ongoing collaboration between the service and wider professional networks, including schools and local healthcare providers. Given the complex and often comorbid nature of ARFID, effective communication across agencies was seen as essential for ensuring consistent care.

When coordination was facilitated, parents described feeling supported and reassured:

We had a multi-agency meeting that was really beneficial for me… it was with our GP and our local CAMHS.

Such proactive communication helped align strategies across settings, reducing the burden on families to advocate alone and ensuring that interventions were reinforced beyond the tertiary service.

Conversely, when communication broke down, parents reported significant challenges obtaining accurate records of their child’s food intake at school, and in one instance, this was despite the child being in a small class with additional support.

I look at a class of eight children, and I still can’t get written into a book what she actually ate.

This lack of integration left parents feeling isolated and concerned about gaps in care, particularly when schools or local services were unaware of the child’s needs or feeding plan. Overall, these accounts highlight that multiagency communication and shared understanding is essential for a child with ARFID, reducing risk of interventions being undermined.