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The lockdowns and restrictions during the COVID-19 pandemic disrupted eating disorder services. People with anorexia nervosa experienced a loss of routine, heightened anxieties, and increased symptoms. Carers felt more concern and greater responsibility for their loved ones. Despite these difficulties, some patients and carers benefitted from digital self-management resources.

The TRIANGLE project aims to help patients with anorexia nervosa return home after being discharged from hospital. As part of the wider project, researchers asked patients and carers about the impact of COVID-19 on this transition.

The findings suggest an important role for digital sources of support for people with anorexia.

What’s the issue?

Around 1.25 million people in the UK have an eating disorder and it is thought that up to one in ten (8-10%) of these people have anorexia nervosa. Eating disorders are associated with more deaths than other psychiatric disorders, and anorexia nervosa has the highest mortality rate of any psychiatric disorder in adolescence.

This research is part of the TRIANGLE project, which is trialling online education and skills training for anorexia patients and carers. It aims to help patients readjust to everyday life after intensive hospital treatment.

This part of the project gathered views from anorexia patients and carers about how the COVID-19 pandemic had affected them.

What’s new?

One of the research team interviewed 21 adults with anorexia and 28 people who care for them. The interviews took place in April 2020, during the first national lockdowns across the UK. Patients were in one of 15 specialist intensive treatment units when they agreed to take part. Most carers were parents; three were partners. The majority of interviewees were female.

Most patients and carers struggled. But remote support helped some patients self-manage. For half the carers, having more time at home meant they could offer more support.

The most important themes to emerge from patients’ comments were:

  • reduced access to specialist services, including early discharge from treatment units and a switch to remote support: “I do get my [medical] checks done … usually it would be on a weekly basis but it’s having to be done on a fortnightly basis at the moment…”
  • disruption to routine and activities, including reduced motivation for recovery: “my illness is kinda on overdrive because you can’t do anything really to distract yourself from it”.
  • heightened psychological distress and symptoms: “My head just runs away with me so and then I worry, and then I use the eating disorder to keep me calm and sane…”
  • however, half the patients increased their attempts at self‐management: “Your immune system is really weakened because of an eating disorder and for me, I don’t want that anymore so I’m feeling really motivated to kind of improve my physical health as much as possible.”

The most important themes to emerge from the carers’ experiences were:

  • concern over the level of professional support available: “They’ve suddenly got to weigh themselves and for those who have avoided that for a long time, and suddenly having to do it … very, very scary.”
  • an increase in practical demands, with carers breaking lockdown rules to help patients: “What is happening is people making her feel guilty about things like her mother taking her to do some shopping.”
  • managing new challenges around patient wellbeing, including new food-related triggers and relapses: “I mean the eating disorder was very severe and … is getting worse under this current climate. He’s really, visibly losing weight and struggling.”
  • however, nearly half the carers found new opportunities to provide more support: “It’s almost been a benefit because I’ve been at home … now I’m here 24/7.”

Why is this important?

The findings highlight the negative impact of coronavirus lockdown measures on people with anorexia and their carers. Treatment was disrupted, routine lost, responsibilities increased, and patients were less able to reintegrate into the community. The anxiety of both patients and carers increased and some patients were less motivated to recover.

However, the study reveals some positive effects. Remote support and self-management resources empowered half of the patients to take greater responsibility for their recovery.

The authors believe that this research supports the roll-out of the TRIANGLE project. Its model of involving patients and carers through digital resources may be a useful addition to standard treatment for eating disorders.

What’s next?

The research raises awareness of the challenges faced by people with anorexia who had to rely more on self-management during the COVID-19 pandemic. Many struggle with self-reporting, especially weigh-ins.

People recovering from anorexia may have meltdowns and suffer extreme anxiety if they cannot access certain foods. Preferential access to online food delivery slots would help some in this group.

The research team are now analysing data on severe weight loss reported by this group of patients over the course of the TRIANGLE study. They expect to see an increase in severe weight loss during the first lockdown period in the UK.

Planning, scheduling activities, social support and use of self-management resources were seen by patients and carers to help patients manage at home. A randomised controlled trial of the TRIANGLE digital resource is ongoing. It involves both patients and carers and may be a useful adjunct to treatments.

You may be interested to read

The full paper: Clark Bryan D, and others. Exploring the ways in which COVID‐19 and lockdown has affected the lives of adult patients with anorexia nervosa and their carers. Eur Eat Disorders Rev. 2020;28:826-835

The TRIANGLE study, a research project aiming to optimise the transition to the community following hospital/day care treatment for patients with anorexia nervosa

Information from the Royal College of Psychiatrists about eating disorders and coronavirus

FREED (First Episode Rapid Early Intervention for Eating Disorders), a service that gives young people rapid access to specialised treatment for eating disorders

Information from the eating disorder charity, Beat

Information and support on eating problems from Mind

Funding: This research was funded by the NIHR Health Technology Assessment Programme and was supported by the NIHR Clinical Research Network, and a NIHR Specialist Biomedical Research Centre for Mental Health award to the South London and Maudsley NHS Foundation Trust.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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Study author

We were extremely concerned to hear how lockdown hindered some patients’ progress in reintegrating into their communities following discharge from hospital. Patients had set goals to motivate them, such as starting new jobs or activities, and they were put on hold. Alongside this, the fears expressed by patients and carers about the sudden disruption of treatment and reduced access to support from mental health services was concerning. Patients and carers had extra responsibility and accountability for key components of treatment, such as meal support and weigh-ins. Patients reported increased feelings of anxiety and low mood. Carers often felt increased responsibility for the wellbeing of loved ones.

However, we were happily surprised to discover that some were able to continue treatment. They used remote support, alternative self-management resources and social support via online forums, apps and voluntary work connected to COVID-19. For these people, a sense of self-efficacy had grown or emerged from the challenges of COVID-19 and lockdown.

Patients appreciated services that adapted quickly to remote support and continued to provide some form of consistent communication. Healthcare services will need to readjust to use more self-management strategies. They need to collaborate more with social and professional support delivered remotely.”

Danielle Clark Bryan, Research Assistant, Department of Psychological Medicine, King’s College London

Anorexia & Bulimia Care (ABC)

When life appears out of control, such as during the COVID-19 pandemic and lockdown, anorexia nervosa can get worse. People can revert to their eating disorder as a coping mechanism. Talk about weight gain or exercise in lockdown increased anxiety in people with eating disorders. Panic buying at supermarkets led to fears that the specific items they eat would no longer be available. Almost one in three people with eating disorders have experienced domestic violence and lockdown meant that many are or were back with the people they were trying to escape.

Those in recovery are therefore fragile at the same time as many outpatient services are closed or cut and GP appointments are more difficult to arrange. Carers are also feeling that they lack support from GPs and other services.

Many face to face services went online. Emails, telephone calls and video calls have been effective. ABC had new people signing up to online sessions and has just introduced a First Steps Online Recovery Course which has been popular. We have also seen a 30% rise in phone calls and calls have become 40% longer.

But 80 people who were using ABC’s face to face hub did not take up the online sessions. It can take a bit of time to get used to new systems, which can be difficult for those suffering with anorexia nervosa when their brains are not functioning properly due to starvation.

Some fear that they are bothering people or taking the space of someone else who is more deserving. These people often try to manage on their own. The pandemic has led more volunteers to sign up with ABC as befrienders. But take up of this service has not been more than usual.

Jane Smith, Chief Executive, Anorexia & Bulimia Care (ABC) and a former carer

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