“Like a rollercoaster”: carer experiences of residential treatment for eating disorders

Abstract

Background

Residential facilities for eating disorders are becoming increasingly common, providing recovery-oriented care in less restrictive environments compared to traditional hospital treatments. Despite their popularity, there is a lack of research regarding parent and carer experiences of residential programs. Furthermore, while the impact of eating disorders on parents and caregivers is well-documented, understandings of their lived experiences remain limited. The aim of this study was to explore parent and carer lived experiences of Australia’s first residential facility for the treatment of eating disorders.

Methods

As part of a clinical evaluation (June 2021 – August 2023), 15 parents participated in a semi-structured interview about their experience of residential treatment. Transcripts were analysed using inductive reflexive thematic analysis.

Results

Analysis generated six main themes from the data: (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 collectively highlight both the burden of caring for a loved one with an ED and parents’ experiences of residential treatment. Overall, participants described residential treatment as providing respite and hope, enabling them to reclaim aspects of their lives that had been overshadowed by the eating disorder. Although not a “magic cure”, residential care was viewed as an essential component of a broader continuum of care.

Conclusions

This research highlights the unique benefits of the residential model and the importance of a compassionate care environment, while underscoring the importance of supporting caregivers throughout the treatment process. Given the critical role of carers in treatment outcomes, further research is essential to deepen our understandings of the carer experience and develop interventions that support both the experiencing person and their primary support people.

Trial registration

This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ANZCTR12621001651875p).

Plain english summary

Residential treatment for eating disorders is becoming more common, yet we still know little about how parents and caregivers experience these programs. Carers of adult children with eating disorders often face unique challenges and frequently play a key role in treatment success, making it essential to better understand their experiences to improve the care and support provided to experiencing persons and their key support people. In this study, we interviewed 15 carers about their experiences with Australia’s first residential facility for treating eating disorders. The analysis of these interviews revealed six main themes that provide insight into the caregivers’ feelings of respite and hope, as well as their journey to reclaim aspects of their lives overshadowed by their loved ones’ eating disorders. Although not a “magic cure”, residential care was seen as a vital part of a broader continuum of care. The study emphasises the need for compassionate support and calls for more research to enhance our understandings of the caregiver experience and to develop interventions that support both the individual in treatment and their primary caregivers.

Background

Eating disorders (EDs) are severe psychiatric conditions that significantly impact not only affected individuals but also their families and significant others, especially parents, who play a crucial role in the treatment and recovery process [1, 2]. Clinical guidelines [3, 4] emphasise the importance of parental involvement in evidence-based treatments such as Family-Based Therapy and Enhanced Cognitive-Behavioural Therapy [5]. Despite this, the caregiving role involves substantial challenges, including early symptom recognition, help-seeking and managing an often-fragmented healthcare system, all while juggling other responsibilities [6, 7].

Recent research highlights the extensive impact of EDs on parents, noting that 96% experienced deteriorated psychological health, with significant declines in physical health (70.5%) and intimate relationship quality (92.7%) [8]. Families also face professional disruptions, averaging 70 days off work per year and financial burdens, with 91.8% seeking private treatment and incurring substantial out-of-pocket expenses. Notably, parents of younger patients report high caregiving burden, with over 30% of parents found to experience moderate to severe levels of distress, and 75% of parents spending 21 h or more per week on direct care [9]. Navigating a fragmented healthcare system can exacerbate the emotional and financial burdens on families, with parents often consulting multiple healthcare professionals before finding effective support [8,9,10,11,12,13,14].

The extensive impact of EDs on family systems is well-documented. In Chapman and colleagues’ study, one mother reflected, “I think it is woven through me, and sadly that means it is woven through our family life.”[15]. Families often report reorganising their lives around the ED, placing the illness at the centre of their lives in the pursuit of recovery [9, 16, 17]. This reorganisation can deeply affect relationships within the family, including those between the experiencing person and their parents and/or siblings, and even between siblings and parents [18, 19]. The challenges associated with EDs can lead family members to respond in ways that, despite being well-intentioned, may inadvertently exacerbate symptoms of the disorder [20, 21].

Parents of adult children with EDs face unique challenges, including grief, chronic stress and balancing caregiving with aging responsibilities [6, 22]. Unlike parents of younger children, those caring for adults often report feeling marginalised and excluded by the treatment process [19,20,21,22]. Research indicates that while parents of adult children with an ED are often intensely involved in caregiving, they receive minimal practical support [16, 23] and often find their need for information and support unmet [24, 25].

Despite the evidence highlighting the burden of EDs on caregivers [2, 8] and the development of support interventions to alleviate psychological distress [26,27,28], there remains a significant gap in our understanding of the carer lived experience. A recent study by Day et al. [29] highlighted secondary benefits of residential treatment, noting reductions in caregiver burden, symptom accommodation and psychological distress following a significant other’s treatment. Despite the increasing number of residential programs for the treatment of EDs globally, there is a lack of published literature exploring parent or carer experiences of these services. This study also highlights that while carers are often considered crucial to their significant other’s recovery, their perspectives are often underrepresented in studies evaluating treatment effectiveness, particularly at more intensive levels of care.

While residential treatment facilities typically report involving parents and carers in treatment [29,30,32], it is unclear if the aspirations of the residential model are meeting the perceived needs and expectations of those seeking treatment. To the authors’ knowledge, there are no qualitative studies examining parent or carer experiences of residential treatment for EDs. As such, the current study aimed to explore parent and carer lived experiences of Australia’s first residential facility for the treatment of EDs. This exploratory research aims to provide a deeper understanding of carers’ experiences throughout the treatment journey, including a focus on their sense of self, identity and autonomy. Understanding parent and carer experiences of residential treatment is crucial for the ongoing development of this treatment model.

Methods

Ethics

Data for this study were collected as part of the clinical evaluation of the first residential treatment facility for the treatment of EDs in Australia. This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ANZCTR12621001651875p) and received ethics approval from the Western Sydney University Human Research Ethics Committee (Approval H14742). All participants provided written and verbal informed consent.

Facility

Participants were recruited from a single residential facility (Wandi Nerida) for the treatment of EDs in Australia. The purpose-built facility is staffed by a multidisciplinary team who provide 24/7 residential care and support for up to 13 individuals in a homelike environment. The facility employs the Butterfly Foundation Residential Eating Disorder Treatment (B­FREEDT) Model of Care© described by Day and colleagues [30, 32].

The carer components of the program were delivered through monthly family days and weekly virtual education and support groups. Family days allowed carers to tour the facility, visit their loved ones, and participate in group psychoeducation and peer support sessions, both exclusively with other carers and alongside experiencing persons receiving treatment. Carers were also offered the opportunity to engage in a virtual weekly support and education group led by a psychologist, dietitian or senior clinician, depending on the session’s focus (e.g., a dietitian might lead a group on the evidence informed model of dietetic support, while a psychologist might conduct a psychoeducation session). Additionally, carers could participate in collaborative treatment planning, decision-making and family therapy, although these opportunities were individualised based on the specific needs of the person receiving treatment.

Recruitment

All individuals (n = 84) admitted to the facility during a 25-month period (July 2021 – August 2023) were invited to elect a parent or carer to participate in the clinical evaluation of the residential facility. All nominated carers (n = 53) were provided with information about the study by treatment staff during admission and by research staff at monthly family days. Consenting participants were contacted by the first author, following discharge of their loved one, and invited to participate in an interview about their experiences of residential treatment. This was done to ensure equitable participation opportunities.

The authors anticipated a sample of approximately 10% of carers would be sufficient to generate adequate data to depict a nuanced and multifaceted picture of the patterns pertaining to carer lived experiences of residential treatment [33]. Sample size was guided by the concept of information power, which suggests that sufficient sample size depends on (a) study aim, (b) sample specificity, (c) use of theory, (d) dialogue quality, and (e) analysis strategy [34]. While the study’s aim was broad, sample specificity was high, a theoretical model informed analysis, dialogue quality in interviews was robust, and a cross-case analysis [33, 34] was employed. Recruitment continued in a reflexive manner until the researchers were confident there were multiple representations of a range of possible participant experiences—positive, mixed and negative—resulting in a sample of 28.3% of eligible carers. Recruitment and participation rates are shown in Fig. 1.

Fig. 1

Flow of Participant Recruitment

Participants

Fifteen parents of a person engaging in residential treatment (Age M = 54.67, SD = 6.29) consented to participate in an interview about their experience of the service. All participants identified as being female and Australian of Anglo-European descent. Of those interviewed, 53.33% reported having attained post-graduate tertiary level qualifications, 6.67% reported having attained an undergraduate university degree, 20% reported having vocational education or training and a further 20% reported having completed high school. Additionally, 66.67% of participants reported being employed full-time, 20% reported being self-employed and a further 18.2% described themselves as being employed part-time. All participants reported having modified or changed employment to accommodate caring for their loved one. Of the carers interviewed, 73.33% reported being partnered or married, with 73.33% reporting their loved one residing in the family home at the time of the interview. Self-reported illness duration of their loved one ranged from 4 to 20 years (M = 9.20 years from diagnosis, SD = 5.22), with the primary diagnosis being Anorexia Nervosa (86.67%).

Data collection

Data were collected through a semi-structured interview following the participants’ loved one’s discharge from the facility. The interview was purposefully designed by the authors in collaboration with a lived experience advisory group (see Additional File 1). The interview followed the Experience and Identity Interview [35], which is informed by a narrative therapy framework, with questions designed to scaffold between participant experiences, meaning, identity and identity negotiations across their engagement with the service.

All interviews were conducted by RR, a researcher and clinical psychologist external to the facility, and lasted approximately 60 min (M = 57.67 min; SD = 10.64). To accommodate participant locations and scheduling preferences, interviews were conducted via Zoom™ (Version 5.10.6–5.15.13) and audio recorded. Following the interview, participants were debriefed by the first author and reimbursed $50 for their time.

Analysis

Interview recordings were transcribed and de-identified with participant-chosen pseudonyms. Identifying details (e.g., locations, dates, affiliations, names) were removed. The de-identified transcripts were analysed in NVivo 2024 (Version 14) using reflexive thematic analysis within a social constructionist framework [33, 36]. This approach viewed language as integral to the social (re)production of meaning [37,38]. The choice of interview schedule further reflected this analytic framework.

Transcripts were coded and a set of themes and sub-themes were developed (RR) using Braun and Clarke’s six-phase approach to reflexive thematic analysis [33, 36]. This involved familiarisation with the data, coding, identifying key ideas, developing and refining themes, and naming final themes. An inductive coding approach, driven by participant experiences rather than pre-existing theories or researcher preconceptions, was adopted due to the exploratory nature of the research. Coding notes were collaboratively reviewed iteratively by the authors (RR, JC, LR, PH) to address overlap and redundancy. Similar themes were grouped into overarching themes and sub-themes. Extracts that best represented these themes were incorporated into an analytical narrative to create a meaningful representation of participants’ experiences. The analysis process was iterative and consultative, with regular author meetings to discuss coding, findings, and interpretations.

Member checking was conducted at two stages to enhance analytical rigor [33]. First, interview transcripts were sent to participants for review, with several choosing to add reflections and detail while others provided clarification of specific statements and meanings. Revised transcripts were used in the analysis. Second, following initial data analysis, themes and sub-themes were shared with participants for their reflections on the relevance of these themes to their experiences. Participant reflections and feedback were reviewed by the authors and incorporated reflexively into the final manuscript. This process refined the thematic analysis through filling in gaps in understanding and prioritising participant voice in the representation of their experiences.

Positionality

In employing reflexive thematic analysis from a social constructionist perspective, the authors acknowledge the influence of researcher positionality in the processes of data generation, analysis and presentation. Detailed author positioning statements can be found in Additional File 2.

Results

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.

Discussion

This study examined carer lived experiences of residential treatment for an ED, revealing a complex and multifaceted caregiving journey. Participants often used the metaphors, such as a “rollercoaster”, to depict the ups and downs of caring for a child who experienced an ED. These metaphors underscored the burdens and volatility associated with caregiving, and the discoveries carers made about themselves as they negotiated these challenges in caregiving, thus reflecting findings in existing literature that emphasise the multifaceted challenges placed on carers [15,16,17, 19, 22, 23]

In contrast to previous intensive treatment experiences, participants described residential care as offering hope and respite. The facility’s taking on of day-to-day treatment responsibilities allowed parents to step back from what was frequently described as a complex and, at times, conflicting, intertwining of roles as carer and (partial) treatment provider/coordinator, and reclaim aspects of their lives and identities previously lost to the ED (e.g., social interactions, hobbies, family). These findings align with Goffman’s theory of role performance [39], which suggests individuals adopt roles in their daily interactions, such as that of a carer, and significant changes in the performance of these roles can profoundly impact a person’s self-identity and willingness to reprise previously held roles [40]. In the context of residential treatment, this shift allowed parents to step back from what had become a complex role of balancing caring for their child with the provision and coordination of their treatment for an ED. This facilitated a reassertion of identities and roles—including that of a parent—that had been lost to the ED.

Participants consistently reported that stepping back from the all-consuming role of “carer/treatment provider” enabled them to embrace their preferred role as the “carer/loving parent”. This shift changed their perceptions of their relationship with their loved one and the ED. It enabled them to let their loved one, along with their treatment team, take primary responsibility for recovery after discharge. This relational transformation aligns with Erikson’s [41, 42] theory of psychosocial development, which describes a natural progression from intensive caregiving to supportive guidance as a child ages. These findings add to the literature suggesting that EDs can disrupt normative identity development trajectories, extending the intensity of the parent’s caregiving role as they are often recruited as primary treatment providers [10, 42,43,44,46].

The supportive and compassionate environment of the residential facility contrasted sharply with previous experiences of treatment [22, 45], with participants frequently reporting feeling seen and supported through education in their roles as parents. This positive experience stands in contrast to literature where carers often report feeling blamed or judged [10, 16, 43]. These findings underscore the importance of compassionate care in enhancing carer satisfaction and wellbeing [12, 16]. They also highlight the importance of ‘backstage activities’, such as the care environment and dynamic teamwork, in creating a credible and compassionate consumer experience [15, 46, 47].

As highlighted in previous research [10, 11, 43, 48] parents consistently expressed a desire to be actively involved as partners in their loved one’s treatment journey. However, they often encountered tensions in managing interdependence and navigating shifts in relational and personal identity as they transitioned from “primary carer” to “caring parent”. Participants described the inclusion of education and family days as part of the residential treatment experience as beneficial in improving understandings of their loved one and the ED. Carer education was experienced as serving to externalise the illness, relieving participants’ feelings of guilt and shame regarding their perceived role in the development of the ED. Several participants expressed disappointment that these supports had not been offered earlier in their loved one’s treatment journey [16, 24, 25]. These findings emphasise the limited supports offered to those caring for a loved one with an ED.

Consistent with previous literature [19, 22, 23], participants expressed a desire for additional direct carer supports, such as a dedicated liaison, ongoing support groups, and opportunities to speak with a psychologist about their own experiences of treatment. Carers frequently spoke of the financial and logistical barriers to accessing appropriate care for themselves and their loved ones, emphasising a need for care that is ED informed and delivered by compassionate and appropriately qualified providers. This finding underscores the importance of ensuring care systems are not only clinically effective but also responsive to the needs of both the experiencing person and their key support people. Participants also emphasised the need for clear and consistent communication pathways within treatment protocols to promote transparency and foster carer trust in residential treatment processes. They suggested that providing regular updates (e.g., weekly or fortnightly) on treatment progress could strengthen collaboration between key stakeholders—such as the person experiencing the disorder, carers and community treatment teams—and enhance the overall care experience.

In reflecting on previous treatment experiences, parents voiced concerns about the prevailing biomedical focus on weight restoration within intensive treatment settings. They felt this approach marginalised their perspectives and left them feeling disempowered in their efforts to support their loved one effectively. These concerns align with literature suggesting that an exclusive emphasis on weight gain can overlook essential aspects of overall wellbeing and inadequately prepare patients for discharge [45, 49]. This misalignment between clinicians’ biomedical priorities and broader patient needs may result in adverse interpersonal dynamics and feelings of invalidation [50, 51]. Within this context, residential care was experienced as unique. Participants felt residential treatment offered respite and hope, enabling families to reclaim aspects of their lives and identities that had been lost to the ED. While not a “magic cure”, residential care was regarded as “the best” option available and a “much needed” component of the broader continuum of care.

Limitations and future directions

A strength of this study was the recruitment from multiple participant cohorts over two years of service operation. Further, several participants reported this was their first time engaging in research related to their own experiences. However, the findings need to be interpreted in the context of participants being recruited from a single service and elected by their loved one who was a recipient of care at this facility. This recruitment approach may introduce biases, as those who chose to participate might have had varying levels of satisfaction or dissatisfaction with the service, as well as differing motivations for involvement in research. Additionally, the participant cohort was exclusively female, reflecting existing patterns of carer burden reported in the literature [22]. This highlights the need for further research examining the male carer/parent experience as this may elucidate ways in which all carers can be better supported in their journey.

Despite these limitations, the study offers valuable insights into carers’ experiences of residential treatment. Being a qualitative study, the findings should not be interpreted as a solution or diagnostic answer but seen as a representation of a set of individuals’ experiences [38]. The study’s reliance on hermeneutic interpretation is acknowledged as a limitation; however, the authors addressed this by maintaining reflexivity, transparently documenting their interpretive decisions, and involving all authors in thematic analysis to incorporate multiple perspectives [36, 38]. They also contextualised findings within participants’ specific settings and used member checking to corroborate interpretations [33]. Given the critical role of carers in patient outcomes, further research across other residential services is essential to deepen the understandings of carer experiences and to develop integrative interventions that support both individuals in treatment and their key support people.

Conclusions

This study is the first to give voice to carers’ lived experiences of residential treatment for EDs. The findings underscore the unique advantages of the residential model, such as providing respite, particularly from their role as treatment facilitator/co-ordinator, fostering hope and facilitating the reclamation of aspects of life and identity, including as a parent, affected by the ED. However, the study also highlights challenges in navigating interdependence, such as balancing patient confidentiality with caregivers’ legitimate need for information. These insights highlight the necessity of a compassionate care environment and the importance of incorporating caregiver education and support, including in renegotiating their roles as parents throughout the treatment process. Given the pivotal role caregivers play in influencing treatment outcomes, further research is essential to enhance our understanding of their experiences and to develop comprehensive interventions that support both the individuals receiving treatment and their primary support networks and inter-relationships.