A reflexive thematic analysis was conducted to explore the lived experiences of parents and carers whose loved ones received treatment at Australia’s first residential eating disorder facility. This analysis generated six key themes: (1) When everything is still not enough; (2) They were giving us hope; (3) I just felt relief; (4) I can resume the role of loving parent; (5) We almost need our own therapist; and, (6) Treatment access: There needs to be a hundred more. These themes were organised temporally to construct the overarching dimension of the carer experience, conceptualised as a “rollercoaster” (see Fig. 2). The nuances of these diverse participant experiences over these timepoints were analysed to generate the super-ordinate features of each theme. Extracts from the interview transcripts are used to demonstrate the interpretative adequacy of the analysis and give voice to the interviewees. Extracts are italicised and words that have been removed or added are identified by […]. Additional extracts are provided in Additional file 3.

Fig. 2

Thematic Map of Participant Experiences. Figure note: The metaphor of “like a rollercoaster” (Donna) was drawn from participants’ reflections on the unpredictable and turbulent nature of supporting a loved one with an ED, including their engagement with residential treatment, as illustrated in the figure

Theme 1: when everything is still not enough

This theme describes the profound impacts and complexity of the parental role in caring for a loved one with an ED. For all carers, this journey was neither planned nor desired: “It wasn’t quite the journey we were thinking when we embarked on parenting. This isn’t quite where we thought it would go” (Emma). Participants shared experiences that revealed significant personal transformations, including the emotional, physical and psychological toll of supporting a loved one with an ED. Nicole captured this shift:

I think at the end of the day, even when [they are] recovered, I’m a different person now.

Nicole’s statement highlights how the caregiving experience is a catalyst for profound change in carers, often altering their identity and worldview in ways that transcend the immediate experience of caring.

For all participants, caregiving became an all-consuming role, frequently extending over years or even decades. This prolonged journey brought significant emotional, physical and psychological challenges. Donna likened it to “a rollercoaster, at times absolutely devastating, thinking that she’s [her daughter] going to die and just having no hope at all.” This metaphor vividly conveys the unpredictable and emotionally tumultuous nature of the caregiving, where fear, despair, and uncertainty intertwined with accounts of both helplessness and hope. The “rollercoaster” evokes not only the emotional highs and lows carers face but also the loss of control they often experienced in the face of their loved one’s illness. This sense of being on an uncontrollable ride amplifies the deep psychological strain that accompanies the caregiving role. Similarly, the caregiving journey was frequently described as “horrific” (Emma, Heather) and “heartbreaking” (Rose), leaving lasting effects that altered both participants’ daily lives and their sense of self. These descriptors reflect the strain carers endured, often leaving them emotionally and physically exhausted. Implicit in these descriptors was a sense of these parents shifting relationship with hope, where it was both “horrific” and “heartbreaking” to witness the impacts of the ED that included a departure from what their hopes had been up until that time for their loved one’s life, and their lives as carers.

Participants often shared how caregiving demands permeated every aspect of their existence. Heather reflected on how the ED “dominated” her life, while Stephanie described feeling displaced from her previous routines: “I felt removed from my normal life.” Caregiving was described as having extensive impacts on carers’ lives, with Megan recounting how she had to “shut down” other priorities, and Rose explaining she had to “put life on hold” for prolonged periods. This unrelenting focus often isolated caregivers, severing connections to their pre-caregiving identities and support networks. Nicole emphasised the isolating nature of the experience:

Anorexia is a very lonely illness. It’s lonely for them [the person experiencing it], but it’s lonely for us too.

Nicole’s statement reveals the dual isolation experienced by both the person with the ED and their carers. The loneliness she described is not only linked to the internal, personal suffering of the individual with the illness but also to the emotional and social alienation that carers face as they navigate the exhausting and emotionally taxing demands of caregiving. Caregiving, in this context, is positioned not merely a set of tasks but a profound disconnection from former social networks and identities, leading to a sense of emotional isolation that is deeply felt and difficult to overcome.

Traumatic events were frequently woven into participants’ caregiving experiences. Many described distressing moments such as their loved ones resisting treatment, being unable to walk, attempting suicide or requiring physical restraint in medical settings. These experiences left an indelible emotional toll. Donna captured the anguish of witnessing her loved one’s suffering:

It’s the worst feeling as a parent, watching them so unwell and knowing there’s only so much you can do to help.

Her words encapsulate the tension between a parent’s innate desire to alleviate their child’s suffering and the stark limitations they face in doing so, highlighting the emotional impacts that often accompany caregiving.

The caregiving role often eclipsed participants’ own identities, leaving little opportunity for self-care or personal growth. Heather explained:

I don’t see myself outside of that parent role very much at all—as like, an individual. It’s my caring role and then trying to work and support [multiple] children… I don’t have much time for myself.

Her reflection underscores the extent to which the caregiving role can eclipse all other facets of a person’s identity, as carers become consumed by their responsibilities of an expanding carer role. This erosion of self-identity sometimes led to feelings of inadequacy and failure. Linda shared her struggles with self-blame:

You just feel like you’re a failure as a mother. That you didn’t do enough, or you weren’t good enough to stop this from happening.

Such sentiments reflect a troubling emotional burden, where carers internalised the challenges they face and place responsibility for their loved one’s condition on themselves.

These feelings were exacerbated by the immense responsibility placed on parents within treatment frameworks. These models often emphasised parental caregiving and refeeding as central to recovery, creating significant pressure. Megan described this burden:

It felt like it was all on us, and if we didn’t get it right, she wouldn’t recover. That pressure—it’s exhausting.

Megan’s words convey the intense weight of responsibility that carers feel, as they are often positioned as the primary agents of recovery, with the implicit (and inadvertent) understanding that failure to meet these expectations could hinder their loved one’s progress. This pressure appeared to be compounded by systemic issues that left caregivers feeling disempowered and unsupported. Participants frequently recounted feeling judged by healthcare providers, with Emma reflecting:

I certainly felt sometimes I was blamed or judged for how ill she was. Like people were looking at me thinking, ‘What did you do wrong?’

Many participants expressed frustration with the dominant biomedical discourse, which prioritised weight restoration, arguing this narrow approach marginalised their perspectives as parents and disempowered them in effectively partnering with their loved one in their treatment journey. Linda explained:

They only seemed to care about numbers on a scale. But there’s so much more to this illness, and we were often left to deal with it on our own.

Linda’s words reveal the inherent limitations of a biomedical framework that prioritises tangible, measurable outcomes while overlooking the intricate emotional, psychological, and social dimensions of an eating disorder. This approach not only excluded parents from the treatment process but also placed them in the difficult position of trying to manage these complexities without adequate support or validation from the medical system.

Evident in participant narratives was a sense of “powerlessness” (Linda, Hope) and “helplessness” (Nancy) in their parenting role. These feelings were often compounded by misunderstandings and judgment from others, including, for some, the healthcare system and treatment teams. Nancy likened this to feeling “like you’re drowning: you’re doing everything you can, but it never feels like enough.” Nancy’s depiction captures the internal conflict of doing everything within one’s capacity to support a loved one, yet in the absence of lasting change, feeling persistently inadequate and incapable as a parent. This sense of drowning speaks to the exhaustion and frustration that carers experience when their relentless efforts fail to lead to the desired outcomes, perpetuating a cycle of guilt and despair.

Carers frequently internalised blame for their loved one’s illness, questioning their own decisions and whether they could have intervened sooner. Kimberly reflected on the weight of this responsibility, sharing, “You’re always asking yourself, ‘Did I miss the signs? Could I have stopped it?’ It’s a heavy thing to carry.” Beyond retrospective guilt, carers also commented on the unintended emotional toll of being assigned primary responsibility for care and re-feeding—a burden that often left them grappling with guilt, self-doubt and exhaustion from their efforts to “save” (Stephanie) their loved one from the ED. These experiences reflect broader systemic gaps, where families are left to navigate complex care dynamics with often insufficient support.

Theme 2: they were giving us hope

This theme illustrates the nuanced and dynamic relationship carers developed with hope throughout their engagement with residential care. Across their narratives, participants frequently expressed a deep investment in hope for recovery for their loved one. For many, hope served as both a source of resilience and an emotional anchor in their pursuit of recovery for their loved ones. As Donna explained:

I suppose I’m an optimistic person, so I don’t give up. The alternative is to give up, and as a parent, you don’t ever give up.

Donna’s words reflect a broader parenting discourse in which hope as a parent in the proactive pursuit of recovery for a loved one is assumed to be something “you don’t ever give up”. Within this discourse, the act of sustaining hope is constructed as an intrinsic and unwavering aspect of caregiving, reinforcing the notion that giving up is not a viable option for parents committed to their child’s recovery. This perspective reflects the deeply ingrained societal expectation that parental hope and love must persist until the point of their loved one’s recovery, regardless of adversity, shaping the ways in which carers navigate their roles within the context of residential care.

The depth of carers’ emotional investment was evident in their reflections on the lengths they were willing to go to in pursuit of their loved one’s healing. Many participants described making significant sacrifices, with some expressing they would “give everything… if it means [their child’s] recovery” (Megan). Within this context, hope served not only as a motivator but also as a mechanism for navigating the burdens of caregiving, reshaping carers’ identities and positioning them as relentless advocates for their loved ones.

Despite the significant challenges participants encountered, their narratives revealed an almost unwavering belief in the possibility of recovery. Rose exemplified this determination, stating, “I was going to find a way to get her to beat this.” This enduring sense of hope was particularly evident among those who championed the establishment of Wandi Nerida, viewing it as a critical and potentially transformative opportunity for their loved one to pursue recovery. For these carers, hope was both individual and collective, grounded in the belief that change was possible through new treatment options.

For many, the decision to support residential care represented not just a new treatment option but represented a hope that things could be different. Several carers vividly described their loved one repeatedly reaching severe and critical stages in their illness:

We actually expected her to die. That’s how bad she was…. We didn’t expect her to live. (Claire)

Others described their loved ones as “hitting rock bottom” (Kimberly) in the months leading up to admission, with some requiring extended hospitalisation to meet minimum weight requirements for admission. In this context, the decision to pursue residential care was framed as a “last resort” or “only option” after years of struggle and unsuccessful treatment attempts. Linda captured the gravity of this choice: “It was either Wandi or a box.” Her words starkly highlight the life-or-death stakes at play, reinforcing how residential care was not simply seen as an alternative form of treatment but as a critical intervention at a moment of crisis. This framing underscores the intersection of desperation and hope, wherein carers, despite years of unsuccessful efforts, continued to seek a pathway toward recovery, clinging to the possibility of survival and transformation for their loved ones.

In the face of hopelessness, carers consistently expressed hope that residential treatment would provide a distinctly different experience from prior, higher-intensity treatments and, ultimately, lead to a more positive outcome. Stephanie captured this cautious optimism: “When you’ve tried everything else, it’s like, ‘Well, hopefully this will be what makes a difference.’” She later explained:

They were giving us some hope that things could be different and that things could change. And I think that was really important. Not that we had the promise of the cure—we knew that wasn’t ever offered—but just some hope that things could be different.

This extract illustrates how carers like Stephanie, while acknowledging the absence of definitive promises (i.e., the “cure”), held to the possibility that residential care could bring about transformative change. This account illustrates what was evident in other carer accounts, that included a shifting relationship with hope as they moved away from simple optimism for their loved one’s return to a pre-illness state, towards the pain implicit in the uncertainty of hope (“not that we had the promise of cure”), whilst also holding onto the belief “that things could change… things could be different.” This shift reveals a deep, often paradoxical engagement with hope: it is neither entirely naive nor completely resigned, but rather a delicate balancing act between the harsh realities of the past and the fragile optimism that the future could still offer something different. Through this lens, hope becomes both a coping mechanism and an emotional lifeline, providing a sense of possibility even in the absence of certainty.

Theme 3: I just felt relief

Participants expressed a profound sense of relief associated with their loved ones’ admission to residential care, marking the first time in years they felt unburdened from the constant responsibility of managing their loved one’s ED.

It was actually a relief when I spoke to them, and they said, ‘You don’t have to worry from here, we’re taking over.’ (Hope).

Hope’s reflection captures the emotional weight of caregiving and the deep sense of liberation that came with the acknowledgement that someone else would now bear the responsibility for their loved one’s care. This relief was not merely a practical respite from the day-to-day management of the ED but also held profound psychological and relational significance for carers. Carer narratives consistently highlighted how this respite was not merely practical but also held profound psychological and relational significance. In stepping away from the relentless vigilance of caregiving, parents were afforded space to reflect, recharge and re-engage in their roles as individuals and as family members, rather than solely as treatment providers.

The physical environment of Wandi Nerida appeared to play a crucial role in amplifying this sense of relief. Many participants likened the facility to a “retreat but hospital-based”, with Donna describing it as “a beautiful place”, noting that “the hospital aspect was very unintrusive.” This stood in stark contrast to their descriptions of previous inpatient treatments as more clinical. The natural surroundings and the “home-like” residential design were frequently described as “conducive to healing” (Lisa), implicitly reinforcing the facility’s philosophy of “respect for the whole self” (Nancy). Parents reported feeling more at ease, knowing their loved ones were in an environment intentionally designed to facilitate recovery.

I thought the environment was brilliant. It wasn’t like a clinical hospital environment. I think that helped a lot. (Hope)

This shift away from a clinical setting to a more homely, restorative one created an emotional and psychological distance from the intense clinical atmosphere many parents had previously experienced. The “non-intrusive” approach of the facility was not only appreciated for its aesthetic qualities but also for the emotional space it created for both patients and carers. This change in physical surroundings reinforced the broader, more compassionate treatment model at Wandi Nerida, which was fundamentally different from the more rigid, impersonal settings that carers had encountered in the past.

In addition to the physical environment, narratives consistently highlighted the professionalism and compassion of the staff, which appeared to reinforce trust in the treatment process. As Claire reflected:

I was taken around the facilities. I was made to feel that this was a very professional experience. That they took it seriously, and that everyone there, everyone working there, was devoted to the recovery of someone with an eating disorder.

Carers highlighted how the recovery-oriented attitude of the facility and staff fostered a sense of shared purpose and partnership. This approach was particularly meaningful for carers who had felt misunderstood or at odds with previous treatment teams.

Until I went to Wandi, there’s always a perceived conflict with the treating team… they clearly identified us as part of the problem, and not necessarily part of the solution. Whereas at Wandi, you were certainly made to feel like you’re part of the process, in a very non-judgemental way. (Lisa)

This shift from a conflict-ridden relationship to one characterised by mutual respect and collaboration was transformative for many carers. It created a sense of shared purpose, where parents no longer felt isolated in their journey but rather included in the recovery process in a non-judgmental and supportive manner. The establishment of this collaborative dynamic fostered a sense of trust and security that was not always present in their perceptions of prior treatment experiences.

The presence of staff with lived experience of EDs added another layer of comfort and security. Many carers expressed relief knowing that some staff members not only had professional expertise, but also personal understanding of the challenges associated with EDs. Kimberly noted:

I just felt relief… Because they all knew what they were doing. They were specialists in that field and some of them had gone through it [an ED] themselves. They were professional in their approach. It was all those things put together that when I left [Daughter], I knew she was in the best hands.

The combination of professional expertise and lived experience bridged the gap between clinical knowledge and personal empathy, fostering a deeper sense of security and optimism for both carers and their loved ones. This dual-layered expertise created an environment where carers perceived their loved ones as having been treated with both competence and compassion, enhancing trust and reinforcing hope in the recovery process. Carers felt the lived experience staff not only offered a sense of shared understanding but also served as a tangible reminder of the possibility of recovery, further strengthening trust in the process.

Theme 4: I can resume the role of loving parent

This theme explores how participants’ relationships with their loved ones, and their identities as carers, shifted during and following residential treatment. Narratives consistently highlighted how the presence of an ED had disrupted family roles, compelling participants to assume responsibilities beyond that of normative parental care. As Stephanie shared:

I guess [the ED] changed our relationship from mother-daughter to caregiver, psychologist, psychiatrist and chief financial supporter.

This shift highlights an impact that an ED can have on family dynamics, compelling parents to navigate complex roles that blur the lines between caregiving, treatment provision, and financial management.

Participants expressed a deep need for respite from caregiving duties. Many felt they had been unintentionally thrust into the role of treatment provider, managing not only their loved one’s illness but also the logistical and emotional burdens that came with it. Rachel reflected on this burden:

I don’t want to be the one that’s treating it anymore. I just I want someone else to do it for a little while.

This sentiment echoed a broader desire among participants to step away from the emotional exhaustion of managing not only their loved one’s illness but the logistical and relational complexities that accompanied it. Residential treatment, in this context, provided parents much-needed respite which, for some, was the first time in years they felt free from the constant burden of managing their loved one’s illness. As these parents shared:

I got 8 weeks off from the eating disorder for the first time in [several] years, where I was not responsible for whether or not it would take my child’s life. (Rachel)

I think Wandi took the weight off my shoulders for me. In that I didn’t really have a choice. (Megan)

Many participants felt that this respite enabled them to step back from the all-consuming role of caregiver and reclaim their preferred identity as loving, supportive parents. This respite, while brief, offered the opportunity for carers to reclaim some semblance of autonomy and relief, not only from the physical duties of caregiving but from the emotional turmoil that often accompanied the role and anxieties of caring for a loved one living with an ED. This shift also empowered carers to pass the primary ownership of the recovery journey back to their loved ones and their treatment teams. As these parents shared:

I feel like I can resume the role more of a loving parent that maybe just checks in on a medical condition—the way you would with any other medical condition—and allow her and her outpatient treating team to be the ones actively managing the eating disorder. (Lisa)

[It is] her battle… all we can do is sort of gently prod and support. (Sonia)

Despite the relief of respite, some carers experienced challenges in their interactions with staff. Trust between carers and staff was described as fragile at times, particularly in contexts where communication was perceived as inconsistent or unclear. Tensions emerged when participants perceived the treating team priorities conflicted with their own. Several carers described feeling the need to advocate for their loved ones in situations where they felt certain treatment protocols or non-negotiables—such as leave allowances tied to treatment phases and a focus on weight restoration—were misaligned with their loved one’s best interests. For example, Linda reflected:

I was advo cating trying to get it [a treatment extension], but it didn’t happen.

Furthermore, while residential care offered respite and relief, the transition remained emotionally challenging. Parents often struggled with the difficulty of letting go in trying to balance their involvement in care while respecting their loved one’s autonomy. As Hope explained, “[Our daughter] didn’t want us there…. I respected that because of her stage in life.” While many parents recognised their loved one’s need for space, others, particularly parents of adult children, struggled with feelings of exclusion:

It felt that we were just the bank… trying to work out where we fitted was hard. (Stephanie)

This statement highlights the disconnect between parents’ previous roles as primary caregivers and their newfound position, where their involvement was perceived as being reduced primarily to logistical or financial support. The emotional labour involved in this shift highlights the difficulty of reconciling the instinct to protect with the evolving independence of their loved one. These feelings of exclusion underscore the emotional labour of parents as they sought to redefine their roles, often struggling to reconcile the instinct to protect with the evolving independence of their loved one.

Following discharge, carers continued to navigate the delicate balance between support and autonomy, particularly when confronted with signs indicative of a setback or increased medical risk. As one mother expressed:

It’s hard as a mum because you don’t know whether to push it… I don’t want her to avoid me because I’m bringing that subject up. (Kimberly)

Similarly, Stephanie described the internal struggle of letting go:

It’s really hard to live my own life and not try and still just save her at the same time… letting her do the wrong thing is really hard.

These sentiments illustrate the emotional complexities that continue after residential care. The process of letting go was not linear and involved an ongoing internal struggle of wanting to protect while also allowing loved ones the space to reclaim a sense of autonomy in their own recovery.

Despite the challenges, many parents observed meaningful shifts in their family dynamics as they stepped away from the assumed identity of “caregiver” toward that of “supportive parent”. By stepping back, carers enabled their loved ones to take ownership of their recovery journey. This transition realigned family systems, ameliorated systemic distress and fostering a sense of normalcy, which led to meaningful changes in family relatedness. As Rose stated:

It’s allowed us to be a family again. We are less anxious. There is certainly a whole lot less worry. We see friends again. I think just as a family unit we are back together again and leading a much more normal life.

These reflections highlight the complex journey parents undertake as they adapt to new roles in their loved one’s recovery. The process of reclaiming the role of loving parent in the context of commencing residential treatment marked a critical turning point, enabling participants to move beyond the exhaustion of caregiving. As Sonia reflected, “It became a relationship… because someone else was doing the caring.” This shift allowed parents to reallocate responsibility for their loved one’s recovery to treatment providers that had a range of positive effects. This made room for Sonia to reclaim a sense of “relationship” with her loved one that had been lost to the ED carer role and for Rose to reconnect as “a family again”. The adjustment to this new role created space for family members to reconnect in healthier ways, ultimately fostering a sense of normalcy and well-being.

Theme 5: we almost need our own therapist

While the carer supports provided by Wandi Nerida were generally perceived as beneficial, parents and carers expressed a desire for increased guidance and support throughout their journeys with residential care. Participants noted how the weekly education meetings were the first time they received targeted support from a treatment provider specific to their loved one’s condition. These meetings were described as “a support group for parents” (Donna), providing practical content and fostering a sense of community and collaborative care. The monthly family days made room for carers to engage with their loved ones in a group setting and meet treatment team members in person. Despite these positive experiences, parents of children with longer treatment histories expressed disappointment that such support had not been available in earlier treatment contexts. They reflected on how the absence of targeted education and guidance throughout their journey intensified feelings of isolation and helplessness, particularly within a system that prioritised care for the individual in treatment rather than providing adequate support for carers.

A recurring discourse within carer narratives was the internal conflict surrounding their own need for support. Many carers feared that seeking assistance would divert critical resources away from their loved ones. As Megan noted, while she “would love to have had independent professional support,” she felt conflicted:

If the parents are taking the resources… you have to take the resource of that person away from the girls who perhaps needed it a hell of a lot more….

This dilemma highlights the emotional and ethical burden carers felt when considering their own well-being, demonstrating the tension between caring for themselves and fulfilling their role as primary supporters for their loved ones. The implicit expectation is that a “good parent” must prioritise the needs of their child, often at the expense of their own. This conflict is further amplified by broader societal discourses on parenting, which emphasise self-sacrifice and emotional resilience in caregiving contexts. The societal pressure for parents to remain unwaveringly strong, always available, and entirely dedicated to their child’s needs exacerbates the already demanding nature of caregiving. These expectations, coupled with personal and systemic resource constraints, lead many carers to feel guilty or inadequate when considering their own need for support, fearing that seeking help would be perceived as selfish or irresponsible.

In this context, the education sessions provided by Wandi Nerida represented a significant breakthrough for many participants. These sessions reframed the disorder, externalising it and alleviating the intense feelings of guilt and personal responsibility that many carers carried. This shift allowed carers to see the ED as a separate entity, fostering a healthier forward-focused perspective that reduced self-blame.

[The treating team] were very clear in saying, ‘Yes, we know there are all these precipitants of an eating disorder, but we can’t do anything about that now. Let’s just move forward and move on… plan from here. (Rose)

This reframing helped carers shift their focus from guilt to providing more effective care. Participants highlighted the need for less emphasis on ED education and more targeted support addressing their “role as a carer” (Heather), including practical guidance on how to care for themselves throughout the journey. As Emma explained:

It would have been more helpful if they had shifted away from language… and shifted more towards developing your own toolkit of skills to be able to look after yourselves through the journey.

While carers were frequently reported being encouraged to prioritise “self-care”, many struggled to operationalise this advice. Moreover, they felt the treatment lacked a clear roadmap for rebuilding relationships with their loved ones outside of the structured context of ED treatment. As Kimberly reflected, “You almost need your own therapist, to talk about this. Because we don’t really have the tools as a parent.” This carer experience highlights a gap in available support for caregivers, particularly at times where they felt their coping resources were overwhelmed with carer responsibilities. Other carers requested a dedicated liaison, opportunities to debrief with psychologists or treatment team members and increased involvement in discharge planning, especially when their loved ones lived at home. These observations suggest that carers are seeking increased support and focus on rebuilding individual and relational identities, particularly in terms of strengthening their sense of themselves as parents and as individuals.

Theme 6: treatment access: there needs to be a hundred more…

This theme highlights the critical role of continuity of care, both during and after residential treatment. Participants emphasised the need for long-term support when their loved ones transition back to everyday life. While participants acknowledged that Wandi Nerida was “not a magic cure” (Kimberly) and recognised the limitations of residential care, many saw it as a pivotal step in their loved one’s recovery. As Sonia reflected, “I hoped it would be life-changing for [my daughter], and it has been.” During the process of member checking, 18 months after treatment, she described her daughter as being “the happy, chatty, socially confident, funny, engaged, ambitious, thoughtful and loving daughter we thought we had lost forever.” This highlights the enduring impact of residential care on the emotional and social transformation of the individual.

Participants consistently noted improvements in their loved ones’ physical, emotional, social and psychological wellbeing after treatment. Donna’s reflection captures the emotional relief experienced by many caregivers:

She’s physically well, she’s thinking more clearly, and making better decisions. She knows what she needs to do to keep herself well and is very motivated to do that… It gives us hope.

Donna’s statement reflects more than symptom relief; it signifies her daughter’s regained autonomy and responsibility, key markers of recovery. This shift restores a sense of normalcy and stability to the family, with the daughter’s motivation to maintain her health offering renewed hope. The regained autonomy benefits both the individual and the family, emphasising the importance of caregivers transitioning from active caregiving to supportive roles, fostering independence and resilience within the family unit.

Many participants reflected that Wandi Nerida had been “the best [treatment] experience we’ve had” (Claire, Lisa), with some crediting it for saving their loved one’s life: “[She]’s alive now, and I honestly don’t think she would have been” (Rose). However, they also acknowledged that the program was still in its early stages of development. Megan described it as “only a fledgling at this stage,” and Nancy summarised:

It is so much better than anything that is available here… I don’t think it’s a miracle cure [but], I would definitely recommend it.

Access to residential treatment posed significant barriers for many participants, with the financial cost being the most prominent. As Hope noted, “It was expensive. Phenomenally expensive.” Most participants relied on private health insurance or bursaries to finance treatment, with some withdrawing funds from their superannuation or savings when insurance was insufficient. Participants from interstate also faced additional barriers, including the time, financial and logistical challenges associated with interstate travel.

Participants also expressed frustration with long wait times and a lack of communication while their loved ones were on the treatment waitlist. As Lisa described, “She was on the wait list for 6 months before she got in.” Heather, meanwhile, shared how “it would have just been nice if they [Wandi] even sent you an email just to say, ‘We know you’re still waiting.’” Underlying these concerns was the emotional distress felt by caregivers who were trying to manage their loved one’s care while awaiting treatment. As Sonia reflected:

[My daughter] applied… 9 months before she actually first got a place… [The experience was] very frustrating… [and] very challenging, because you don’t know how long [they’ve] got to stay alive.

The participants were unanimous in stressing the need for enhanced discharge planning, continuity of care and improved transition pathways into community services. Many reported that their loved ones encountered significant challenges in accessing appropriate care post-discharge, particularly in rural or remote areas, where specialist support could take weeks to arrange. Nicole expressed the abruptness of the discharge: “The discharge out of Wandi is like, ‘Catch Ya.’ And it’s done,” while Emma stated: “I didn’t feel [my daughter] was as prepared as she could have been for living independently.”

These reflections indicate that, despite the positive impacts of residential treatment, the absence of a robust, supportive discharge process risks exacerbating the challenges of recovery, leaving both the individual and the family vulnerable during this critical phase. Participants advocated for more comprehensive care pathways that include a range of services, such as step-down programs and better collaboration between residential treatment teams and community-based providers. As Sonia passionately stated, “There needs to be a hundred more Wandis, ideally one in every state.” This reflects the desire for more accessible, localised care that acknowledges the complexity of recovery and the long-term needs of individuals with EDs and their families.