Table 2 Side by side survey and discussion group/interview data by stakeholder group and theme

Undergoing and delivering ED treatment led to financial costs

Direct Costs: therapist/psychologist/psychiatrist services (58.6%), medication (44.8%), dietitian (37.9%)

Direct non-medical costs: transportation (72.4%), costs with virtual care (44.8%), support for other family members (31.0%)

Cost savings: did not experience any cost savings (55.2%)

Cost of private services, medication, transportation, accommodations, and other resources

Challenges with virtual services

“My parents ended up having to take money out of my RESP [Registered Education Savings Plan] to pay for some of my therapy” (Participant 5)

[Regarding virtual services] “there was the parking savings and maybe a little bit of the gas…the cost was still more for me to not be in person than it would have been to just pay for those things and be there” (Participant 4)

“I had a therapist within the eating disorder program … and she had to leave and that really led to a downhill spiral, which ended up leading to like, because my parents couldn’t afford a therapist in the community so it kind of led to a downhill spiral, which led to like longer term care which led to more expenses” (Participant 6)

The pandemic exacerbated personal, family and work-related stressors

Indirect costs: unable to attend school (55.2%), increased feelings of isolation due to COVID-19 (48.3%), unable to work resulting in decreased work productivity (37.9%)

Isolation because of ED symptoms and COVID-19 restrictions

Impact of ED on other family members, specifically siblings

“Eating disorder itself is isolating and on top of it COVID” (Participant 17)

“I was kind of just very isolated, because I wasn’t working anymore, I wasn’t in school, so I guess I didn’t really know what to do with myself. I think that was really really tough, because I’ve always been like a very bubbly kind of person. Like I’m very social, so I found that really hard to be fully isolated. Even before the pandemic. Like I think I was isolated from the beginning of treatment I would say.” (Participant 12)

“I know that my sister spent a lot of time on her own, kind of like waiting, and like she really suffered from that and struggled with her own mental health” (Participant 5)

Challenges with resources for ED treatment

Barriers for services/treatment: long wait lists (58.6%), lack of ED specific treatment (58.6%), cost of services/treatment (51.7%)

Difficulty accessing services (eligibility criteria, geographic barriers to access)

Long waitlists

Frustration with delayed or cancelled treatment options because of the pandemic

“You had to be like at a certain degree of un-wellness in order to be considered for treatment” (Participant 3)

“All these things are being put on pause, but like my eating disorder is not being put on pause and it just kind of left us just like waiting” (Participant 5)

“You can’t measure sick. Like sick is sick” (Participant 6)

“The only place I’d go would be to treatment, and since it was in the local hospital there was a high risk of contracting the virus. I was scared, but at the time, anywhere was better than home” (Survey response open text)

Systemic impacts of delivering or undergoing ED treatment during the pandemic

Not applicable

Harm from medical professionals’ lack of knowledge in ED care

Changes in treatment options due to pandemic

“They weren’t accepting new patients because of the COVID risks and so I was just kind of waiting in the general medical unit but like it was, it felt very much like they were all kind of learning with me … I felt I was giving like little crash courses in eating disorder care versus them telling me. So, I think they’ve learned a lot but came a bit at the cost of my own care.” (Participant 5)

“I think one of the biggest barriers not pandemic-wise would have been myself” (” (Participant 12)

Undergoing and delivering ED treatment led to financial costs

Direct Costs: special food or nutritional supplements (82.8%), medication (62.1%), therapist/psychologist/psychiatrist services (58.6%)

Direct non-medical costs: transportation (82.8%), supports for themselves as a primary caregiver (58.6%), support for other family members (37.9%)

Cost savings: did not experience any cost savings (41.4%)

Cost of private services, food and nutritional supplements, medication, alternative therapies

Insufficient and challenges with eligibility of private insurance/benefit coverage

Cost savings with virtual care

“The cost of food has gone up and when you have an eating disorder, you tend to want particular types of food, so that can be a challenge too sometimes” (Participant 8)

“It [private service] was very expensive. It was not something that we would have been able to access” (Participant 13)

“[Private insurance] covered each one like two-and-a-half sessions” (Participant 17)

“Even with benefits, it’s nothing” (Participant 21)

“Her [psychotherapist] credentials don’t qualify under my benefit plan… even though she’s got 30 years of experience with eating disorders, that’s not good enough to qualify for benefit coverage”(Participant 16)

“[Virtual services] was actually really good for us, and it saved us a whole bunch of money” (Participant 10)

The pandemic exacerbated personal, family and work-related stressors

Indirect costs: unable to work resulting in decreased work productivity (69.0%), increased feelings of isolation due to COVID-19 policies (58.6%)

Personal demands and impact of being a caregiver

Impact on other children and spousal relationships

Isolation with COVID-19 and isolation of ED

“For a lot of years I had work getting in the way” and that “[The pandemic] did provide me with this year where I was able to be home (Participant 11)

“I need to go to therapy now, to deal with all the extra trauma and nobody is paying for that, again” (Participant 21)

“My son became like the forgotten child. He was the one who ended up trying to be responsible for my daughter, because we were so, trying to keep her alive, he just had kind of had to fend for himself, and that’s awful” (Participant 7)

“Because of COVID we both couldn’t visit on site, so she [other child] was often left at home alone” (Participant 8)

“it caused relationship issues between my husband and I” (Participant 7)

Challenges with resources for ED treatment

Barriers for services/treatment: long wait lists (72.4%), lack of access to qualified mental health professionals (69.0%), lack of ED specific treatment (62.1%)

Difficulty accessing services (challenges with primary care, long waitlists, lack of services)

Caregiver burden to become expert with limited resources available

“We had a huge waitlist before we ended up in the ER in life threatening stages and then the doors opened” (Participant 20)

“You have to learn it yourself. Even when the services are technically available. There is no possible way you can get through it without learning” (Participant 11)

Systemic impacts of delivering or undergoing ED treatment during the pandemic

Not applicable

Challenges with ED treatment (autonomy, lack of communication, lack of continuum of care)

“You can’t ask a young person with an eating disorder what they think about it or what they want. I know that’s coming from a good place. You want to empower adolescents, but you are empowering the eating disorder when you do that” (Participant 11)

The pandemic exacerbated personal, family and work-related stressors

Personal costs/impacts: increased work expectations/demands (64.3%), Fear/isolation due to COVID-19 exposure at workplace (58.9%)

Isolation of working during pandemic (relationships with others and family), fear of COVID-19, moral distress, burnout

Impact of uncertainty

Negative work life balance

Appeal of private practice

“I feel like work-life balance definitely has shifted. Before COVID I found it a lot easier.” (Participant 14)

“I think there were lots of times during the pandemic where I did a bad job of taking care of myself and therefore I think was less present at work, was less present with my family and that was difficult and I think that in trying to balance my work, my relationship and my relationship with my kids, it always felt like something was out of whack’ (Participant 2)

Challenges with resources for ED treatment

Not applicable

Lack of resources (staff, space, experienced staff, services)

Disruptions to treatment capacity and availability

“Very experienced clinicians who go and leave to work in private practice because that’s the only [way] that they can afford to live… and so I think we lose a lot of knowledge” (Participant 2)

“At one point we were turning away 70% of the referrals we got” (Participant 1)

“Mental health patients again were being discriminated against and that, you know, basically kids were being discharged because we had to make space for acute respiratory beds” (Participant 19)

Systemic impacts of delivering or undergoing ED treatment during the pandemic

Change in work: provide virtual care/services (69.6%), remote work/working from home (51.8%)

Personal Costs: technology expenses working remotely (41.1%)

Cost Savings: One-time pandemic bonus pay (37.5%)

Managing high rates of patients, challenges with increased work expectations and demands

Benefits and cost savings of virtual care

“Nobody is being forced to work more hours than we’re paid for, but at the same time, we have this idea of like we have a 500-person waiting list and we’ve got to see as many people as we can” (Participant 15)

[Virtual services]“allowed us to then support more rural or remote areas in a more real time way” (Participant 19)