Impact of COVID-19 Confinement on Adolescent Patients with Anorexia Nervosa: A Qualitative Interview Study Involving Adolescents and Parents
2. Materials and Methods
2.1. Participants and Procedure
2.2. Data Collection and Interview Topic Guide
2.3. Data Analysis and Thematic Coding
3.1. Themes Identified from the Patients’ Interviews
3.1.1. A. Restrictions of Personal Freedom
- Feeling of being imprisoned and bored: Patients described feelings of being imprisoned and bored due to lack of the possibility to go to school and pursue hobbies: “This was like, my God, I′m locked up at home now, and I’m sitting around totally unproductive” (#02). Inpatients emphasized that “it is very bad to be in the ward the whole time, not being able to go out, not being able to go home, and being actually locked up for 24 h,” leading to a “cabin fever” (#04).
- Tensions between patients and family members: Being with other patients or family members 24/7 favored negative feelings like irritability. “I notice that the tension between the patients is getting worse. You realize that this closeness is simply unbelievably stressful all the time. You′re stuck together the whole time. The girls are already starting to argue” (#04). “And just being at home with your family 24/7 is pretty hard for me, because then it comes to arguments and you get on each other′s nerves” (#01).
- Less motivation to work on recovery: Due to COVID-19 restrictions, the motivation to work on recovery decreased. Personal goals that patients were looking forward to and motivated them to work on recovery (such as vacation with the family and home visits for inpatients when weekly weight goals were achieved) were dropped, which impeded their motivation to gain weight. ”You can’t have that experience of how it feels once you haven’t tried hard enough to reach your weekly goal, or how it feels just to be able to get out once you’ve managed to do it” (#03).
- Missing close others: Due to the visiting regulations in the hospitals and general COVID-19 measures, close others were missed. Inpatients did not see parents, siblings, grandparents, and close friends for a longer period of time, which was experienced as a burden despite the possibility to keep contact via social media and telephone. Furthermore, having to decide who was allowed to visit the patient in the hospital and who was not was experienced as difficult and stressful: “That is really extremely difficult. It′s actually quite a burden, a really big burden, because you have to think about it for quite a long time: Do I want to see my dad for a week and then my mom, or do I want to see my dad for two weeks and then my mom?” (#04).
3.1.2. B. Interruption of the Treatment Routine
- Risks through self-monitored weight: Reduced outpatient face-to-face contacts and increased remote interventions caused weight control to be carried out by the patients themselves or by their parents. This was experienced as uncomfortable and “very stressful because I’m afraid that it won’t be okay” (#10). These feelings were partly reinforced by not being able to “debrief this with the doctor” (#12). Patients reported that self-monitored weight triggered eating disorder-related cognitions. Weight control by parents was further experienced as a limitation of personal autonomy. Moreover, patients reported hiding weight loss from their psychiatrists and parents: “It went so far that I cheated my mom when weighing by simply drinking a lot of water beforehand, partly because she was terribly worried, and I didn′t want her to worry so much […] But this whole exceptional situation with Corona has also somehow provoked this, because otherwise it would never have come so far. Otherwise, I would have continued to have medical checks in the hospital” (#12).
- Challenges and opportunities of teletherapy: In general, the psychological/psychotherapeutic online treatment was perceived as “rather satisfactory” (#07) by the patients whereby a bilateral video connection was preferred over audio connection only because eye contact, facial expressions, and gestures were regarded as important during the therapeutic process. However, face-to-face therapy was preferred in general as difficult topics stay in the doctor’s office: “For me, it was like, I go to my therapist, I leave my problems there, I go home. […] Now, many things take place in my room, and I have all these problems, these conversations right on the spot. This felt strange for me at the beginning.” (#09). While receiving therapy without having to travel was seen as advantage of teletherapy, privacy concerns when psychotherapy took place in one’s own room were discussed as main challenge: “I can′t really tell everything and be 100% honest, because I′m always afraid that someone is listening” (#01).
- Changes of staff cohorts and treatment offers in the inpatient setting: Due to the frequently changing staff cohorts in the psychiatry wards, it was perceived as difficult to build relationships with clinicians, which was additionally aggravated by wearing face masks. It was “difficult, because we could never concentrate on one person [doctor], who guides us through our whole inpatient stay, but we always had to switch, and that was a bit tedious” (#05). Furthermore, inpatients partly experienced insufficient agreements between staff from different cohorts. On the positive side, new therapists joined the team and offered new options for treatment and free-time activities like “hypnosis or yoga, which was somehow uncommon, but also pretty cool” (#03).
3.1.3. C. Changes in the Eating Disorder and Other Psychopathology
- Boredom and feeling of being observed, triggering eating disorder symptoms: Feeling bored and isolated at home, experiencing little distraction, and feeling observed by family members during eating and exercising triggered AN-related cognitions, restrictive eating behaviors (e.g., counting calories), obsessive exercising, and binge–purging behavior: “She [my mother] is at home most of the time, my siblings too. Sometimes, I feel a bit observed, and then I feel bad when I’m eating so much” (#01). “I not only control my weight to the gram, but also my food intake. I′ve started to weigh food again, to count calories, and to track steps. […] This was because I′m always at home now. I′m not allowed to go to school because of my blood values […]. I spent lots of time in my “anorectic world” (#12). AN-related cognitions and behaviors were additionally boosted by social comparisons and exchange with peers: “Really every one of my classmates posted something like ‘Shit, quarantine, I’m getting fat now.’ And that triggered me so much” (#13).
- COVID-19-related fears and compulsions: This included worries regarding continuation of psychotherapy and medical checks, continuation of school lessons, professional and financial situation of the parents, and fear of a COVID-19 infection and infection of close others, particularly grandparents: “What I was very worried about was my grandparents […]; my grandma has cancer and is getting chemotherapy, and her immune system is very weak. And my biggest concern was that she will get infected” (#09). Furthermore, fear of not being able to buy certain foods and increased obsessional washing were discussed.
- Improvement in symptoms, indicating a normal treatment course: Other patients reported no direct effects of the COVID-19 pandemic on eating disorder symptoms or exercise behavior but mentioned general improvements in symptoms (e.g., less binge–purging episodes, restrictive eating, AN-related cognitions, and lower levels of depression), indicating a normal treatment course: “I notice that it is getting better now, that I don’t think about food so much anymore, that after the meal I no longer have this mind spinning […] and yes, therapy helps me a lot” (#08).
3.1.4. D. Opportunities of the COVID-19 Period
- Less stress allows to pay more attention to own needs: The patients highlighted that less stress regarding school, leisure, and social contacts allowed to pay more attention to one’s own needs. This has allowed them to better enjoy the time available and to follow their own needs: “I have escaped from this school stress a little bit and was able to better listen to myself [...] Maybe this was also a step that was necessary so that I could calm down myself a bit” (#11). Another patient told, “So I have paid more attention to my emotions and to my needs, what I wanted to do now, and not whether it fits into my schedule. So, I just have done what I really wanted to do and haven’t done things that I didn′t want to do” (#10). Although having more time for oneself bears the risk to get caught in AN-related cognitions, it also opened up the opportunity to “work towards the opposite direction” (#12), towards recovery. Experiencing lower stress levels was further associated with more flexible eating (e.g., trying out new foods) and improved mood.
- Experiencing a more intensive time with the family: As many parents were working from home and siblings were at home due to homeschooling, there was more time for joint family activities and conversations, which facilitated growing together as a family. One patient described a barbecue event as follows: “We were all together, and it was a bit like in a storybook because we often don’t have this family idyll because I don’t eat with them most of the time” (#09). Another patient told that she has start talking with her sister about her eating disorder during this time: “Two or three days ago, it happened for the first time since I had this disease that I talked to my sister a little bit about it, and that was very relieving” (#02). Moreover, visits from parents at the ward were experienced “more consciously” (#03) (e.g., because the patient had exclusive time with them);“I could use the time with my mom more intensively because I spent my time alone with her every day” #08).
- Promoting autonomy and self-organization skills: Finally, patients acknowledged that the interruption in everyday and school routines enabled the promotion of autonomy and self-organization skills, including working autonomously on school assignments and planning of the day structure. For example, a patient positively highlighted “that I am a bit more on my own, that I have to look after myself, that I have to create a daily routine for myself, that the school doesn′t do that for me, that the parents can′t always do that for me” (#13).
3.2. Themes Identified from the Parents’ Interviews
3.2.1. E. Changes in the Daily Routines
- Challenges regarding the organization and creation of a day structure: Parents of adolescents with AN faced various changes regarding daily structures and routines, which were challenging for them. These include changes regarding their job situation (working from home, professional reorientation, increased workload), family life (partner and siblings spent more time at home), and social life (fewer social contacts). Additionally, care responsibilities for the child with AN needed to be fulfilled. Parents felt that they needed to create new routines for their children’s lives (e.g., helping with school stuff, keeping the children “occupied”, enabling social contacts with peers): “They [the children] have needed help with their school stuff […]. Every two weeks, they have got new assignments. Each new assignment was a bit more of work. This was really a challenge. And at noon everyone is hungry. This has to be managed at the same time. And each of us has its own videoconferences […]. That caused me stress” (#06). In particular, managing the visits of the child in inpatient care was challenging for the one parent who was allowed to enter the hospital building. This was perceived as “exhausting, travelling to the hospital every day, all the responsibility that you have to bear alone” (#08).
- Experiencing more time with family: The changed family routines have enabled more family time, which was perceived as positive: “I have had all my children around me; it was very harmonious. We played a lot together, did a lot of things, even prayed, whatever the children wanted to do. Many things were initiated by them. From that point of view, we experienced a lot of positive things as a family out of the fact that we were all together” (#02). More family time has also fostered more intensive conversations between parents and the sick child, between siblings and between the parents, which has “brought us together even more” (#12). For example, one mother described the relationship between the sick child and her siblings as follows: “It’s simply a fact that she [the sick child] has managed to talk with her siblings, especially very intensively with her sister […]. I think this has made a big difference that she has improved so much recently” (#02).
- Slowing down for the whole family: COVID-19-related restrictions enabled the whole family “to slow down” (#13) and to strengthen self-care behavior. Less school and social stress due to school closures took the pressure off the child diagnosed with AN and provided the opportunity to work on recovery without the fear of missing something, “an opportunity that can be seized” (#05). A mother described, “What is good for her is that the school stress has gone. […] This ‘you have to study now’ and this self-imposed ‘you have to be good at school’ has dropped completely” (#10).
3.2.2. F. Parents’ Perspective Regarding the Outpatient and Inpatient Treatment
- Reservations about reduced outpatient monitoring and increased teletherapy: Parents reported that outpatient face-to-face contacts did not take place at all or were significantly reduced, although they acknowledged the clinicians’ effort to keep them going. Nevertheless, face-to-face appointments would have been necessary as “it is important that they [the patients] are weighed and their urine is checked […] and clinicians see, how they look like, whether there is a relapse or things have improved. This cannot be seen online; this could be totally distorted” (#02). Remote therapy was seen as an important “back-up, that she has someone she can talk to […] However, it is, of course, quite different when it takes place face-to-face” (#10). Providing a place guaranteeing a confidential atmosphere for teletherapy was seen as a basic requirement so that teletherapy can work. Due to the reduced outpatient face-to-face appointments, parents reported to have listened more attentively to any changes in the child’s eating disorder symptoms (”Of course I was more alert. Otherwise I would have had the feeling that all slips away; and she can tell everything online” #02) and felt that they should take over the doctors’ responsibility to a certain degree.
- Altered family contact with the child during the inpatient treatment: Parents and patients were burdened by the visiting regulations at the ward as the personal contact between the family and the child was strictly limited and “normal” family life was not possible. Particularly, visiting restrictions to the same one parent per week was experienced as burdensome: “It is difficult for me to understand that it was not possible for the parents to alternate. And for my daughter, this was twice the challenge. I always had the impression that she really suffered from the fact that only one of us could come and that she always had to decide who should come next week” (#04). A mother described a visit as follows: “I sometimes felt as if I were visiting her in prison. She also felt like that. She has sometimes stood in front of the windows and said, ‘The people here can go where they want, they can get out, and I′m trapped here.’” (#08). The short visiting hours and the insufficient availability of space allowing retreat in the visiting area and the obligation to wear face masks during visits were mentioned as burdensome by the parents.
- Maintaining contact between parents and treatment staff: Keeping regular contact between parents and clinicians/therapists during COVID-19 confinement to exchange relevant information was regarded as important. While some parents felt well informed, other parents pointed out that they had too little contact with the clinician after therapy has shifted to teletherapy or due to being not allowed to enter the ward during inpatient treatment of the child: “Sometimes, I would have liked more information as a parent, because I had no contact with the nursing staff at all, because I could not enter the ward. Issues remained unresolved” (#08). Furthermore, parents emphasized the importance of receiving parental support regarding how to deal with the eating disorder of the child.
3.2.3. G. Challenges and Benefits of the COVID-19 Confinement for the Eating Disorder Symptoms and Mental Health of the Child
4.1. Clinical Implications
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Patients’ Interviews||Parents’ Interviews|
|A. Restrictions of personal freedom|
A1. Feeling of being imprisoned and bored
A2. Tensions between patients and family members
A3. Less motivation to work on recovery
A4. Missing close others
B. Interruption of the treatment routine
B1. Risks through self-monitored weight a
B2. Challenges and opportunities of teletherapy a
B3. Changes of staff cohorts and treatment offers in the inpatient setting b
C. Changes in the eating disorder and other psychopathology
C1. Boredom and feeling of being observed triggering eating disorder symptoms
C2. COVID-19-related fears and compulsions
C3. Improvement in symptoms indicating a normal treatment course
D. Opportunities of the COVID-19 period
D1. Less stress allows for paying more attention to own needs
D2. Experiencing a more intensive time with the family
D3. Promoting autonomy and self-organization skills
|E. Changes in the daily routines|
E1. Challenges regarding the organization and creation of day structure
E2. Experiencing more time with family
E3. Slowing down for the whole family
F. Parents’ perspective regarding the outpatient and inpatient treatment
F1. Reservations about reduced outpatient monitoring and increased teletherapy a
F2. Altered family contact with the child during the inpatient treatment b
F3. Maintaining contact between parents and treatment staff
G. Challenges and benefits of the COVID-19 confinement for the eating disorder symptoms and mental health of the child
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Zeiler, M.; Wittek, T.; Kahlenberg, L.; Gröbner, E.-M.; Nitsch, M.; Wagner, G.; Truttmann, S.; Krauss, H.; Waldherr, K.; Karwautz, A. Impact of COVID-19 Confinement on Adolescent Patients with Anorexia Nervosa: A Qualitative Interview Study Involving Adolescents and Parents. Int. J. Environ. Res. Public Health 2021, 18, 4251. https://doi.org/10.3390/ijerph18084251
Zeiler M, Wittek T, Kahlenberg L, Gröbner E-M, Nitsch M, Wagner G, Truttmann S, Krauss H, Waldherr K, Karwautz A. Impact of COVID-19 Confinement on Adolescent Patients with Anorexia Nervosa: A Qualitative Interview Study Involving Adolescents and Parents. International Journal of Environmental Research and Public Health. 2021; 18(8):4251. https://doi.org/10.3390/ijerph18084251Chicago/Turabian Style
Zeiler, Michael, Tanja Wittek, Leonie Kahlenberg, Eva-Maria Gröbner, Martina Nitsch, Gudrun Wagner, Stefanie Truttmann, Helene Krauss, Karin Waldherr, and Andreas Karwautz. 2021. "Impact of COVID-19 Confinement on Adolescent Patients with Anorexia Nervosa: A Qualitative Interview Study Involving Adolescents and Parents" International Journal of Environmental Research and Public Health 18, no. 8: 4251. https://doi.org/10.3390/ijerph18084251