It is noteworthy that there was no common pathway to tertiary level specialized eating disorders treatment. The majority of parents (eight of the ten participants) described hospitalization for medical stabilization preceding their child’s admission to the specialized eating disorders program. Yet, within the pathway for those who were hospitalized, there was diversity in the contacts that families had prior to hospitalization, with several parents reporting having taken their child to a therapist/counsellor and family doctor prior to their child’s hospitalization, while other parents reported hospitalization as the first intervention their child received. It is also noteworthy that all parents reported experiencing challenges at some point during their child’s treatment journey. Three parents reported having an assessment and admission at BC Children’s Hospital without barriers to the referral process or bounces through different health care professionals. Yet, the emotional toll on parents in the early stages of the eating disorder was a common consideration. Figure 1 depicts an overview of the typical key milestones reported by parents, with conceptual categories relating to challenges and facilitators that arose. The high level concepts that emerged across the milestones noted by parents are detailed below.
Delays in identifying eating disorder symptoms
Parents highlighted a gap between first noticing changes in eating behavior symptoms and being concerned and getting connected with health professionals. Several parents indicated that they did not initially recognize eating disorder symptoms, or were not initially concerned about changes (e.g., perceiving that their child was increasing fitness, focusing on healthy eating, or going through a period of being a “picky” eater). One parent shared the challenges in detecting changes that were gradual: “I saw him every single day, I wasn’t able to see the changes. Whereas these people who hadn’t seen him for several months, noticed the change immediately.” [Parent 2; mother of an 18-year old boy]. Parent 2 also discussed that it was difficult to notice changes in the context of her child growing taller, and initially attributed some of her child’s body changes to a growth spurt. Some parents shared that they had initially not been concerned with some of the eating-related changes they noticed their child making, but when others in their community (e.g., teachers, dance instructors, friends) raised concerns they “took notice and started trying to get things in place” [Parent 7, father of a 17-year-old girl].
Four of the five parents of boys highlighted gender as potentially contributing to delays in recognizing eating disorder symptoms. One father (Parent 9) suggested that age and gender contributed to delays in linking his child’s behavior with an eating disorder, indicating that “we didn’t even think of anorexia. […] it just wasn’t on our radar, and he was a 10-year-old boy”. Another father (Parent 6, father of a 14-year-old-boy) shared that he had “they’d diagnosed him with anorexia. […] And then—so it was like, holy—okay, what is this? […] And I’d never heard about it with guys, right?”
Challenges in accessing eating disorder services
Several parents experienced barriers after recognizing eating disorder symptoms in their child, and shared their impressions that health professionals that they visited (e.g., family doctors) were not taking their concerns seriously. A mother of a 14-year-old girl (Parent 5) shared her experience with expressing concerns about her child’s eating to a family doctor, and being “assured that she is okay” and to “come back and see [the doctor] in a month”. In the meantime, the parent continued to feel that something was wrong and sought out support from a second doctor, who advised her to bring her daughter to the emergency room, leading to a hospital admission for medical stabilization. Similarly, a father of a 12-year old boy [Parent 1] shared the rapid onset of medical instability after his son’s initial changes in eating behaviour:
Um, it happened in a—in a very short space of time. […] —he started to eat more healthily because he wanted to get fitter to—primarily, to play soccer. So we thought, “Okay, that’s a good thing.” […] Um, and it just seemed to accelerate and snowball from there initially.
Parent 1 explained that he took his child to the doctor and was told “he’s okay.” However, like Parent 5, he continued to have concerns over the next days, and took his child to the emergency department. He shared that his child “was in a bad way. His heart rate was low. He was, uh, underweight, dehydrated.”
System-related barriers, including a lack of resources in non-urban communities, and waitlists for services also emerged. For families outside of urban centres, limited resources and a lack of experience of local health professionals with pediatric eating disorders were barriers to accessing appropriate treatment.
Parent 7: And the trouble with us and the most frustrating part with us is that there are zero resources for this in [family’s home community]. There is nothing for child and youth mental health up there. There is no one for eating disorders. Um, so that was a frustrating struggle to get the ball rolling in the first place.
In contrast, other families who lived in urban and suburban areas had eating disorders programs in their home community, yet parents described facing waitlists for these services.
Parent 10 [Parent of a 15-year-old girl]: Uh, so I called [local community] Eating Disorder Program. They said they’re full, she’s on a waiting list. I said I cannot wait, and what—what should I do? And they said bring her to emergency. I said, ‘What are they going to do in emergency? They’re not going to help me, like, psychologically.’
Parents reported encountering waitlists across the treatment journey, including at assessment and seeking initial connection with eating disorder specialists, and at the time of transfer from regional services to specialized provincial services (e.g., from hospital in the family’s local community to the specialized pediatric hospital). Waitlists were also reported at discharge, as families transitioned out of the tertiary care program. For some families who were discharged from the tertiary program to secondary level community eating disorders programs for follow-up, the tertiary program offered bridging services. Bridging services allowed families to continue to attend outpatient appointments and medical monitoring at the tertiary site while on the waitlist for services in their local community program.
The Right Treatment at the Right Time
Across interviews, parents highlighted bouncing between care providers and treatment services, a lack of psychological care/unhelpful therapeutic interventions, logistical challenges when accessing care, and less than optimal timing of intensive treatment. These challenges related to the conceptual concept of finding the right treatment at the right time for their child.
Several families reported experience with multiple health care professionals and teams during their child’s treatment journey prior to admission to the specialized pediatric eating disorders program. Challenges arose for individuals in rural or remote communities while receiving treatment in their home regions and waiting for transfer to specialized care. One parent [Parent 3; mother of an 11-year-old boy] described her child’s deterioration in the local hospital while waiting for transfer, indicating that it felt like the delay in accessing specialized care was “setting him up for failure […] So we just sat there and waited and waited. […] Yeah, as things got worse and worse and worse [laugh]. Yeah.” Parent 3 highlighted a lack of communication, and miscommunication across team members within the community hospital, as well as between community and tertiary care, that was associated with delays and challenges. Several parents also shared challenges with navigating how to access appropriate specialized pediatric services. Parent 2 described her thoughts about determining how to access specialized eating disorder services “I needed somebody to help me provide a plan of attack, how was I going to go about helping my son?”
Bouncing between treatment services and care providers also occurred for families whose child was admitted to the specialized pediatric hospital, between medical hospitalization, mental health teams, and different teams within the eating disorders program (outpatient, day treatment, and inpatient services). Part of the frustration raised by parents about the bounces between care providers related to a lack of continuity in care providers, with rotation through health professionals.
Parent 1: “I guess the system, the way that system is designed isn’t a good thing for a kid with eating disorders. He needs continuity throughout his care here, I think […]”
Parents also described a division between medical and psychological care, with initial treatment focused only on medical stabilization:
Parent 10: We were there to stabilize medically, and that’s what they were basically doing. You know, diet, high calorie diet. She was monitored 24/7. She was not able to leave the bed, right? They were very strict, but nothing like mentally that was done for her.
Parents commonly raised their desire for more mental supports for their children during the treatment process. Yet, several parents highlighted the importance of timing when offering mental health supports to children who were malnourished or medically unstable. For example, parents whose children had accessed mental health supports in the early stages of the eating disorder indicated that the individual treatment that was initially offered to their child as not a good fit:
Parent 9: Um, so we went to a counsellor for a couple of sessions. It was not useful. […] I think the reason that—you know, when you’re malnourished and your brain isn’t working properly, you can’t—counselling just doesn’t work.
Logistical, staffing issues, and challenges with communication between health care professionals also led to barriers in the treatment processes. For some families, staff holidays and reduced programming (e.g., over the summer and December holiday periods) led to delays and gaps in services, and longer waits to see specialists. Challenges also occurred with communication across health professionals. One parent spoke about the long process in working towards a process of communication and ensuring all members of the inpatient treatment team were on the same page as parents, leading to challenges that were perceived to have a significant impact on the treatment process:
Parent 9: Um, and so it’s how that information gets communicated down for each patient. So eventually, like I said, everyone got it and it was fine, but it took, you know, a month, um, which is [laugh] a long time.
Seven of the ten participants experienced their child stepping up to more intensive services (e.g., outpatient to day treatment, or day treatment to inpatient) during the admission. This step up to more intensive treatment was perceived to be helpful; however, four parents indicated that a more intensive treatment option would have been helpful earlier on. Parent 1 indicated “It’s just a shame he couldn’t get in here [to the inpatient program] earlier”. Concerns about the timing of transitions to more intensive treatment also emerged in the interviews. A parent who had been attending outpatient services for an extended time with her child described her advocacy for a step-up to the day treatment program.
Parent 8 [mother of a 14-year-old girl]: I said, ‘This is—none of this is working, right? She’s—I think we need to go to the next level here. We need to go to the next step.’
This parent also suggested that starting a more intensive treatment earlier could have been helpful, while recognizing that recovery is a process:
[laugh] it was like, maybe we could have done something, um, you know, earlier in terms of putting her into a—into it [day treatment]. But—but again, you know, sometimes you just have to walk the road, right?
Parent 1 summarized the challenges his family experienced in finding the right treatment at the right time for his son:
But the mental side of things where obviously he did need help, was hopeless really, and—and that was very frustrating. And—and again, not—now, I get it’s not that easy. I know it’s easy for me to see it afterwards and say, “Oh, you know, if we could have done this or done that,” but—but maybe there’s a better way […] to try and get the right fit for the right person to the right patient I guess is what I’m saying really.
Despite the challenges families described, all parents highlighted their positive experiences with the treatment team in the tertiary eating disorders program. Parents described the team as “very supportive, very good.” (Parent 4; mother of a 16-year-old girl). Another parent indicated that the program was “topnotch” and described the environment as “very welcoming.” (Parent 2).
Emotional impact on parents
Many parents shared the negative emotions they experienced during the early stages of identifying the eating problem, and seeking out treatment for their child. Parents described feeling guilty or angry at themselves for not identifying the eating problem earlier, or losing time in getting connected with appropriate services. Parent 2 shared: “And, [sighs] I guess there was anger at myself too for not seeing the signs earlier or accepting the signs earlier I guess.” Setbacks after initiating treatment for the eating problem were also frustrating to parents. Parent 9 stated: “…when we got discharged from hospital, immediately, meals became difficult […] we’d worked really hard […], and then all of a sudden he—it felt like he was throwing all that good work away, um, for those couple of weeks, and it was frustrating.”
Anxiety, stress, and feeling unsure about how to best proceed was also common across interviews. One parent shared the strong emotions she experienced after initially trying to connect with health professionals about how to support her daughter in the context of continued weight loss (Parent 10): “And then, um, I was—like, I was desperate. I didn’t know what to do with her.” Similarly, parents spoke about the challenges with getting connected with care providers. Parent 9 shared:
Um, so anyway, we did try the mental health route before, but that was originally one of the most difficult things.I had no idea how to reach into the mental health world, um, you know, how to get support, how to get access.
Parents commonly noted anxiety, frustration, and feeling at a loss about how to proceed in the early stages of accessing care for their child, suggesting challenges in the transitions between services in the community and specialized eating disorder care. The pathway to tertiary care varied across interviews, though the majority of children were assessed by the BC Children’s Hospital eating disorders program after being hospitalized for medical instability (either at BC Children’s Hospital or at a community hospital).
There was a division in experiences after parents connected with specialized eating disorder services. Some parents described significant relief upon connection with the specialized eating disorders program. Parent 3 described her emotional experience upon her son’s admission to the inpatient eating disorders program:
Relief. Yeah, relief that we were where we needed to be and just hearing from other people that have been to the eating disorder clinic from [the family’s home community] and how amazing it is and how much they help […]
In contrast, some parents described frustration throughout the treatment process. Parent 4 described her experiences after her daughter’s admission to the specialized program, sharing her impression that further medical investigations and psychiatric interventions would be needed to support her child’s recovery, and feeling that parents were not on the same page as the health care team:
Well, certainly [pause] you know, disappointed and, again, helpless […] But um—so yeah, I still—I’m still beating my head against a wall […]
Similarly, Parent 7 spoke about the slow process of change and on-going eating disorder symptoms leading to frustration during his daughter’s admission to the inpatient program:
I—at the time, I was frustrated because um, I was wondering why the thinking wasn’t changing, right. Why—I mean, she’s here being treated. Um, why isn’t there enough being done on the mental um, you know, the—the cognitive uh, shift?
One father also recognized the need to manage his emotional state, in order to best support his child’s recovery, and described the process of adapting after his child’s admission to the eating disorders program:
Parent 6: But I mean, it’s stressful, but you know you’d—you’d do anything for your kids, right? So you just adapt. It’s like when they were—when they were born, you don’t get any sleep, but you adapt, right? So you just—I just adapted to the situation and just kind of—okay, I’m going to get through it. […] So I try not to be too emotional about it ’cause I have to be the strong one for him. And so the thing is, if I’m falling apart, then it’s going to be no use to him.
For the majority of parents, the negative emotional state that was typical in the early stages of the treatment journey shifted to feelings of confidence and hope around the time of discharge from the tertiary eating disorders program. Parent 9 shared that both parents had been leading their son’s care over the course of inpatient treatment, which helped to bolster the family’s confidence about discharge:
Well, I feel like for a long time, we’ve been the main supports. […] so I think we’ve been feeling quite confident for a long time about the home piece.
Similarly, Parent 2 described her positive emotional experience that was associated with her son’s progress in treatment:
Elated. [laughs] Elated because he had reached um, well within what was acceptable [weight] range for his height and age. So I was very pleased that, uh, that he got there so quickly. […] Like, it was, it was monumental.
This parent also recognized recovery as an on-going process, describing her feelings at the time of her child’s discharge:
A lot more confidence. A lot more at ease about it. Uh, I know that there’s still a ways to go. But I think we’re on the right track, and, you know, he’s at a, he’s at a good place.
However, a subset of parents spoke about the challenges of leaving a team that was familiar with their child’s history and the uncertainty of some of the follow-up options in their local community leading to worries and fears. Parent 4 described the mixed emotions associated with her daughter’s upcoming discharge: “Um, I think we’re all a little bit scared and worried but, you know, hopeful that she will do well.”
Parental involvement and expertise
As a program offering family-based treatment to outpatients, and centered around family involvement for higher levels of care (day treatment and inpatient eating disorders services), all parents were engaged in a collaborative treatment process from the time of assessment through to discharge. The health care professionals in the program worked with children and parents to develop an individualized care plan that incorporated parental expertise of their child. Several parents expressed concerns about certain elements of the treatment program, and worked collaboratively with the team to mitigate their concerns, which facilitated positive treatment experiences. For example, Parent 2 described her involvement in developing an appropriate treatment plan for her son upon his admission to the inpatient program:
Um, I had a huge concern about um, him interacting with some of the other uh, patients, only because the fact that he hadn’t explored other types of behaviours that would help him lose weight, such as purging or using um, any kinds of drugs or um—I didn’t want him to be exposed to that. […] So that’s why I insisted that [he] not be involved in any group therapy sessions.
Another parent described gaining confidence and skills throughout her child’s treatment, with the support of the team and skills groups offered to parents (Parent 5): “That’s a great thing that started helping, just trust my—you know, my own decisions.” In the context of the negative emotional impact of eating disorder treatment on parents, one parent described feeling helpless at times, particularly with supporting her child in the context of other family stressors, while at the same time recognizing “I’m just, you know, a mother that’s never gonna give up on her.” (Parent 4).
Parental involvement throughout treatment, and parents taking charge of the recovery process also emerged across interviews. The family-based therapy approach involves parents taking charge of their child’s eating, and asking parents “to be “directly responsible for changing eating-related behaviors at home” (Lock & Le Grange, 2005, p. 138). Across treatment modalities that families received in the program, parents described finding ways to take charge and support their child’s recovery. One parent spoke about her thoughts when starting FBT:
Parent 10: I was hoping that she would be admitted here or, like, something more intense done for her. Uh, so I was pretty sceptic first when it started, and then actually […] I don’t know when exactly—I noticed that actually I’m learning a lot from this to manage […]
Parents also described their firm stance in decision-making during their child’s treatment. One mother shared her approach in planning for her daughter’s step up to day treatment from outpatient care.
Parent 8: She was quite resistant [about day treatment]. She was crying and she didn’t want to, right? And she was afraid. She was frightened of the whole idea about it. And, um—but I was, uh, pretty strong about it and pretty adamant that that’s what has to happen, and there really—this is not a debate. [laugh]
This parent went on to describe her firm attitude in supporting her child’s eating at home, and continuing with rules and expectations about eating that were established during the day treatment program:
[…] you know, these 14 year olds, 15 year olds, you know, they just want to be the boss. It’s going to be their way. And you have to recognize, no, you’re the parent, and they’re the child, right? [laugh] And this is how it’s going to be.
Finally, parents described improved understanding about the recovery process as their child’s treatment progressed. Several parents shared their shift from expecting a focus on psychological support for their child in the early stages of treatment, to understanding that weight restoration and normalization of eating are necessary prior to changes in their child’s psychological well-being. For example, Parent 6 described:
Um, but I understand now um, that that’s—you know, you can’t start that until the body’s healthy. Body has to get healthy first. Brain has to get healthy before that kind of treatment can start. Otherwise, you know, it’s potentially a waste of time and can be detrimental even too.
Parents also spoke about their change in behavior over the course of treatment to support their child’s recovery, as they learned more about eating disorders and how to be supportive and navigate triggers for their child. Parent 9 reported:
… there’s all kinds of pitfalls with this disease. You know, like, I learnt early on that you can’t say, ‘You know, I really think you look a lot better.’ That’s a bad thing to say. [laugh] […] Um, so you know we choose our words now around height in particular, that you’re growing upwards, and you need to support that growth for growing taller and growing stronger”