Experiences of Social Isolation During the COVID-19 Lockdown Among Adolescents and Young Adult Cancer Patients and Survivors

Abstract

Purpose:

COVID-19 is a worldwide pandemic affecting populations by massive lockdowns, including strict precautions and quarantines. Research on the lives of adolescents and young adults (AYAs) with cancer during the COVID-19 pandemic is highly relevant to meet potential challenges regarding their physical and mental well-being. Therefore, the purpose of this study was to investigate how AYA cancer patients and survivors experience social isolation during the COVID-19 lockdown.

Methods:

Individual semistructured telephone interviews were performed with 13 AYA cancer patients and survivors aged 18–29 years. All participants were users of Kræftværket, a youth support center and social organization for AYAs with cancer at The University Hospital Rigshospitalet, Denmark. Data were analyzed by using thematic analysis.

Results:

The following themes were found. The need for giving and receiving support, Difficulty of the community spirit, The lockdown's effect on recovery, Disrupted youth, and Being alone.

Conclusion:

The participants in this study experienced loneliness, anxiety, lack of psychosocial support, and lack of physical contact. In addition, lack of rehabilitation and lack of support during hospital visits, which may specifically influence the disease trajectory, were reported. Thus, health care professionals have an important task to follow up on the AYA's well-being during and after the COVID-19 lockdown. A positive side effect of the lockdown period was the experience of getting a respite to recover physically and mentally after cancer.

Introduction

When the COVID-19 pandemic hit the health care system, many daily routines were changed, and services temporarily put on pause to reduce spreading of the virus. Especially activities in hospitals without a diagnostic or treatment purpose but involving patients with the purpose of receiving information or social activities were canceled. This could be patient education programs, information meetings, social well-being activities, and so on. All vital appointments were maintained including scheduled appointments for adolescents and young adults (AYAs) with cancer, however, consultations for AYAs in follow-up were converted to telephone consultations.

Already at an early stage of the pandemic, social isolation of vulnerable patients such as cancer patients undergoing treatment could be foreseen. Data on cancer patients from the United Kingdom showed that many of them experienced isolation during quarantine at home.¹ Thus, clinicians should pay extra attention to the cancer population as social isolation and COVID-19 concerns may increase psychosocial distress.² There may be many adverse effects of isolation in hospitalized cancer patients, of which anxiety, depression, and fear of recurrence are prominent, and some of these adverse effects may also be present when quarantining at home.^2–4

Before the pandemic, AYAs with cancer at our university hospital had the possibility to meet at Kræftværket, a youth support center and social organization for AYAs (15–29 years) with cancer.⁵ Normally, Kræftværket is the focal point for youth activities such as service user workshops, lunch meetings, theme evenings, and entertainment from invited guests, all of which were closed down due to the pandemic. During the first lockdown in Denmark between March and April 2020, we observed how case stories in the public media described the challenges of social isolation both for patients undergoing isolation in hospitalization and when quarantining at home.⁶ This brought our attention to the fact that AYAs with cancer and survivors, who usually benefit from the offers given by Kræftværket, may suffer especially from social isolation leading to our research question: How do AYA cancer patients and survivors experience social isolation during the COVID-19 lockdown?

Methods

Setting

The study was performed during the first lockdown period in Denmark (from March 13 to April 15, 2020). It was anchored in Kræftværket, which is centrally located at the University Hospital Rigshospitalet in Copenhagen. Kræftværket was temporarily closed during the lockdown period and reopened May 11, 2020. The lockdown affected the entire Danish society as all educational institutions, most workplaces, and cultural and leisure institutions were temporarily closed. Restrictions at hospitals included postponement of all nonurgent outpatient appointments and relatives were denied access to the hospital. During the first COVID-19 period, the Danish government introduced the term “community spirit” to appeal to the Danes to be a part of the social distancing and thereby care for one another. In December 2020, the Danish government initiated a second lockdown period, and thus, the citizens of Denmark are still living under a range of restrictions.

Recruitment and participants

Inclusion criteria were users of Kræftværket who were AYA cancer patients and AYA cancer survivors aged 18–29 years (Table 1). The participants were recruited via a written query posted on Kræftværket's closed Facebook site, which in May 2020 had 307 users. All AYA cancer patients at Rigshospitalet are invited to join Kræftværket and Kræftværket's closed Facebook site. A total of 13 AYAs responded to the query, nine women and four men aged 18–29 (mean age 23.5 years). Thematic data saturation was obtained after 10 interviews.

Table 1.

Participants

	Participants (n = 13)
Gender
Male	4
Female	9
Mean age	23.5 (18–29)
On treatment	4
Off treatment	9
Cancer type
Acute lymphocytic leukemia	2
Adrenal cortical cancer	1
Brain cancer	2
Breast cancer	2
Colon cancer	1
Head and neck cancer	1
Hodgkin's lymphoma	1
Malignant lymphoma	1
Ovarian cancer	1
Soft tissue sarcoma	1

Data collection

Data consisted of 13 individual semistructured telephone interviews. The telephone interviews were conducted between April 28 and May 1, 2020, and lasted on average 19 minutes. All interviews were electronically recorded and transcribed verbatim in Danish and quotes were subsequently translated into English. S.H. performed the interviews and transcriptions. The interview guide consisted of questions related to everyday life, including contact with healthy friends and peers from the social organization Kræftværket, and mental and physical health (Table 2).

Table 2.

Examples from the Interview Guide

Sample questions
• How is your day different from before COVID-19?
• Are there things that have become easier or harder for you during COVID-19—which?
• What does it mean to you that Kræftværket is temporarily closed?
• Where do you find support and help during the isolation period?
• Who do you meet with, and has this changed during COVID-19?
• How do you keep in touch with healthy friends and peers with cancer?
• Have you used virtual communities during the isolation period and how have they worked for you?
• Has the isolation period affected your health—how?

Analysis and rigor

We leaned upon an inductive realist approach to thematic analysis based on the participants' experiences and interpretations of social isolation during the COVID-19 pandemic. Data were analyzed using Braun and Clarke's reflexive thematic analysis approach consisting of a six-step analysis process.⁷ S.H., who conducted the interviews, became familiar with data by carefully transcribing data and listening to the recordings several times while noting the first ideas for possible codes (step 1). Codes relevant to the research question were identified by S.H. and H.P. in close collaboration after reading and rereading the transcripts (step 2). Next, S.H. and H.P. developed themes on basis of the codes and produced a thematic map to visualize and clarify the relationship between codes and themes (step 3). Subsequently, the rest of the author group gave input to the thematic map (step 4). Finally, themes and subthemes were defined and named (step 5). S.H. produced the report based on the analysis in close collaboration with H.P. (step 6).

The six-step analysis guide ensured the rigor and trustworthiness of the study. This included a thorough and repeated reading of the transcripts to capture all themes. Also, themes were found independently by the first and last author, respectively, and all themes were discussed between the members of the author group to reach team consensus. Moreover, the interview guide ensured that the participants were asked the same range of questions.

Ethics

Permission to conduct the study was given by the local Data Protection Agency (P-2020-420). The participants received a short project description by email a few days before the interviews were held, informing them of the aim of the study, that they were guaranteed anonymity, and that the interviews were going to be recorded electronically. Written informed consents were obtained electronically for all participants. They received and returned the consent document by email, and signed it using an electronic writing tool.

Results

The analysis pointed to five themes, presented with a summary of the content of each theme in Table 3.

Table 3.

Themes and Summary of Content

Themes	Summary of content
The need for giving and receiving support	Missing peer-to-peer support
The need for giving and receiving support	Missing solicitude and comfort in Kræftværket
Difficulty of the community spirit	Healthy peers feeling responsible by keeping distance
Difficulty of the community spirit	Healthy peers acting selfishly
The lockdown's effect on recovery	Rehabilitation on hold
	Nutritional consequences
	Getting a respite
	Getting new life perspectives
Disrupted youth	Life on hold twice
Disrupted youth	New parental dependence
Being alone	Feeling forgotten by healthy peers
	Alone with concerns and negative thoughts
	Difficulty separating from the diagnosis
	Alone during hospital visits

Theme 1: The need for giving and receiving support

Generally, the participants missed being together with peers with cancer, whom they used to meet in Kræftværket before the COVID-19 lockdown. Both cancer patients and survivors had a special need for peer-to-peer-support, including talking to peers about their cancer situation in general and about the risk of relapse during the COVID-19 period, and to sharing their anxiety about the COVID-19 situation. Some participants explained that peers with cancer had a unique understanding of each other's situation. Thus, being together with peers with cancer gave many of the participants a confidential space to share thoughts and problems related to their cancer diagnosis, which was impossible during the COVID-19 lockdown as they could not meet neither at home nor in Kræftværket. The use of electronic platforms could not replace physical contact as the conversations here became more sporadic, shorter, and less profound and feelings were difficult to express: “you're better at reading people when you meet them face to face compared to through a text message or a chat group and things like that, it's a bit difficult to catch onto if someone isn't doing so well. You feel that straight away when seeing them, if they're doing well or if there's something to take care of” (Participant 22 years). A few participants mentioned that it was specifically difficult not being able to be there for peers from Kræftværket with a short life expectancy. The sense of care for the peers from Kræftværket was strong, and many were extra careful not to pass on the coronavirus to those still in treatment. Thus, meeting was not an option.

In addition, many of the participants missed support from the health care professionals at Kræftværket, taking part in arranged lunches, sharing knowledge, and participating in theme meetings, and to get a hug and comfort from health care workers at Kræftværket: “it is something special to be able to talk to the youth coordinator and the other youth ambassadors who help when times are a little difficult” (Participant 23 years).

Theme 2: Difficulty of the community spirit

Some of the cancer survivors experienced that many of their peers felt the same responsibility for them as during their cancer treatment. Some also experienced that their peers were extra attentive to protecting them by keeping distance or by telling them to stay home: “I don't take any chances whatsoever because my immune system is weaker than before I got sick. My friends respect this so if I tell them that I'm going to do this or that they say nope” (Participant 24 years). However, before the COVID-19 period, several of the participants experienced that their peers were there for them by providing company. During the COVID-19 lockdown, this attentiveness to their need of social contact changed into social distancing as a way of taking best care of peers with cancer and survivors.

In contrast, though, many of the participants experienced that their peers put different meaning into the term “community spirit” by only adhering to the rules of social distancing in appropriate situations. Thus, some peers put their own needs above the community spirit by, for example, going to parties and gathering in larger groups. Several participants found it stressful and frustrating that others acted selfishly because it meant that they had an even bigger responsibility of taking care of themselves: “I have difficulty getting together with people who don't have the same precautions as myself [and] it's difficult to be the one to enforce the rules” (Participant 29 years). In addition, some had a feeling of annoyance, envy, and injustice that the responsibility of social distancing was theirs alone.

Theme 3: The lockdown's effect on recovery

The lockdown both had a positive and a negative effect on the young people's physical and mental health affecting their recovery. Several of the participants had completed their cancer treatment just before the COVID-19 pandemic and were underway in a recovery period. For the majority, the recovery period comprised physical rehabilitation and for others also treatments with physiotherapists or psychologists. The recovery period was temporarily put on a hold during the COVID-19 lockdown, which had physical and psychological consequences for several of the participants. Especially the physical rehabilitation was important for many participants because they wanted to regain the same strength and healthy body from before the cancer treatment and because they had residual symptoms from the cancer treatment that they wanted to alleviate: “it's very important for me to give [my body] the best conditions to recover […] and I find it challenging that it will be even longer before I can exercise in the same way” (Participant 29 years). Several of the participants noted that it affected their joy and mood when they were not able to exercise and when they did not know when they could return to the gymnasium. Moreover, some of the participants missed the community of their sports club, which was motivating and gave a sense of improved mental capacity.

Some of the participants, both those still in treatment and survivors, who lived by themselves limited their grocery shopping to a minimum because of the risk of infection in the supermarket and thus delayed their recovery in terms of a healthy and nutritional diet: “I think it's a bother to go grocery shopping because of all the people, so my experience is that corona has been bad for my eating habits because I tend to avoid shopping” (Participant 21 years).

Some of the cancer survivors experienced that the COVID-19 isolation period gave them a much-needed time off—mentally and physically—in which they were shielded from the surroundings while they recovered from a tough period of illness. Some mentioned that it was easier to find peace and quiet and that it gave time for reflection and getting to know oneself better. One of the participants explained that the COVID-19 period gave her an excuse for not meeting her friends' ongoing request to get together after the cancer illness during which they had been apart: “After my full recovery I could feel a pressure towards getting together with people and even though I wanted to see them, it was also exhausting […] so in some way I actually enjoy the break and that I don't need to give an excuse” (Participant 23 years). One also mentioned that one of the advantages of isolation was that lost hair could regrow and that it hence would be a more normal version of oneself meeting the surroundings after the COVID-19 lockdown.

The life at home had given one of the participants who was still in treatment a different perspective of life with cancer because he was even more isolated than before: “I have always felt that I didn't get out but now that corona is here I can see that I actually did get out before and now that I don't go out I can see the difference” (Participant 18 years). Both patients and survivors agreed that the COVID-19 period was worse than the time with cancer because during the COVID-19 period they had to avoid everyone while avoidance only was necessary toward those with noticeable infections during the cancer treatment, which did not limit life outside of the home.

Theme 4: Disrupted youth

Most of the participants experienced the COVID-19 period as a parallel to their cancer trajectory with isolation from friends and family, with an empty calendar, and a disrupted youth. Several of the participants attending follow-up after treatment explained that their lives were now put on a hold twice and that they felt aggravated and annoyed by being held back in life when it was just about to start again. The participants who had overcome their cancer trajectory were also in the process of catching up with social activities belonging to a normal youth life, when the COVID-19 lockdown suddenly put an end to it: “[normally] I would go home and be with friends, go to the movies or go out for a meal or drinks. I was just about to commence something new in my life after having been ill and now this has come and has stopped everything” (Participant 27 years).

Many families took bigger responsibility for the participants during the COVID-19 lockdown. Because of a closer relationship with the parents, some of the participants experienced a stronger dependence on them, which was frustrating as it made them helpless and reminded them of a parent–child relationship. Some felt that the independence was already taken from them during their cancer treatment, and this now continued for an unknown period. For some this resulted in a “suffocating” attention and care: “I just think that there is something about, when you are an adult, and you get your independence taken away from you, and it just means so much to me that I can do things myself […] I should not have any care, I do not want anything, I get suffocated by it” (Participant 27 years).

Theme 5: Being alone

Several of the participants, both those in treatment and survivors, described that they felt disregarded and forgotten by their healthy peers. They could see from social media that their healthy peers still got together and had fun in small groups and that they because of their vulnerability were not invited. It could be challenging to see their peers still socializing when having to be isolated and alone yourself: “I'm doing terribly, it's like during the toughest part of my cancer treatment […] because I can still see everyone around me going about and having fun whereas I'm more alone and isolated” (Participant 20 years).

Several of the participants who were still in treatment and those with impaired immune systems were cut off from seeing peers and some of them felt very lonely. Also, some of those who had completed treatment felt a resemblance to the loneliness during their cancer treatment. Some of the participants expressed the sense of being alone with their concerns and some reported being alone with negative thoughts, increased anxiety, emotional instability, frustration, irritation, tiredness, and bad mood and symptoms related to depression: “I don't really care that much about my life at the moment, I sit alone for the most part, either reading or listening to music […] I fell that I'm mentally on my way down, I'm not doing well mentally at all” (Participant 20 years).

Also, for one of the participants, who was in treatment, the isolated life at home had made it difficult to separate herself from the diagnosis. Everything in her home reminded her of the illness and she could not escape from it: “I think it's hard to work at home all the time because […] I can't get away from the diagnosis, I can't get it at a distance” (Participant 28 years).

During the COVID-19 period, no accompanying relatives were allowed at the hospital. The participants therefore had to manage all hospital contacts by themselves: “I'm a bit worried about going to the hospital alone because it's not possible to bring friends with me to treatments” (Participant 28 years). The participants were as a result of these restrictions left alone with questions for the doctor and they had to manage negative scanning and test results. A couple of the participants had gotten their diagnosis during the COVID-19 lockdown, which meant that they were alone when informed about their cancer diagnosis. Thus, they had to make all vital decisions in consultation with the doctor on their own.

Discussion

This study contributes with rich data and new knowledge regarding experiences of social isolation among AYA cancer patients during the severe worldwide COVID-19 pandemic. Our analysis led to the following themes. The need for giving and receiving support, Difficulty of the community spirit, The lockdown's effect on recovery, Disrupted youth, and Being alone. The participants missed meeting with both healthy peers and peers with cancer, whom they knew from Kræftværket. Peers from Kræftværket had a unique understanding of each other's situation and some of them also had a need for discussing the COVID-19 situation from an AYA cancer view. A mutual understanding of living with cancer is recognizable from other AYA cancer communities.^8,9 Moreover, AYAs with cancer are in the midst of a life crisis in which intimacy and someone to talk to are crucial.^10,11 As reflected in another COVID-19 cancer study, e-communication could not replace communicating in real life.¹² The AYAs in follow-up who had already returned to a normal youth life experienced that their lives were put on hold once again. Seeing life passing by without being able to take part is commonly reported by AYA cancer patients and may as well have a negative impact on their quality of life.¹³ Even though several participants had been isolated during their cancer trajectory, the COVID-19 lockdown hit even harder in terms of isolation. The increased experience of isolation was rooted in fear that everyone could potentially be infected with coronavirus also without knowing it, thus spreading it far and wide. In line with other COVID-19 pandemic research, the participants were forced to protect themselves by keeping a distance to other AYAs in their surroundings as they experienced other AYAs put their own needs above the community spirit.¹⁴ At the same time, however, several participants felt that they were being kept out of their usual communities because some peers were trying to protect them by not seeing them, which furthermore increased the feeling of isolation. In addition, some even felt forgotten by their peers as they via social media could follow their peers' social activities, which they were not invited to participate in. Another important issue for many participants was lack of physical activity, which because of the lockdown was challenging as they could not meet the doctor's recommendations and apply to planned rehabilitation. Thus, they took longer to recover, which could have consequences for getting back to work and for their general well-being.¹⁵ On the positive side, the COVID-19 lockdown period also gave some participants a much-needed respite to get some peace, quiet, and resting. Benefits of the COVID-19 lockdown in terms of reductions in social pressure and exposure to chronic psychosocial stressors have been reported among adult cancer patients and by the general public.^12,16 We acknowledge that many of the consequences of the COVID-19 lockdown may not be AYA cancer specific but generic to the AYA population. However, it is important to notice that some consequences might be of outmost importance for the disease trajectory such as when visiting the hospital alone without relatives. When society imposes a ban on relatives following AYA cancer patients to the hospital, it may have consequences for the most vulnerable patients in terms of lack of psychosocial support and missed information as relatives play a significant role to provide effective psychological and emotional support to patients during in- and outpatient visits.^17,18 Several participants reported loneliness, and some had symptoms related to depression such as bad mood, decreased energy, anxiety, and worries. Loneliness and emotional distress during the COVID-19 pandemic have been reported by AYAs with cancer as well as by healthy AYAs.^19,20 Increased anxiety and symptoms of post-traumatic stress are highlighted as a specific challenge to childhood cancer survivors because they are reminded to isolate themselves, wash their hands, and be aware of symptoms of illness equivalent to the time of cancer treatment.²¹ Loneliness among AYA cancer patients due to isolation is commonly reported, however, according to the participants in our study, the feeling of loneliness further increased during the lockdown.²² AYAs with severe illness often balance their life by caring for their illness at home, while living a normal youth life with social activities outside home.²³ During the lockdown living a youth life away from home was strictly limited, and thus, the participants experienced a huge deprivation for their peers, which further increased the feeling of isolation. Another consequence of living in isolation at home was that some of the AYAs experienced a stronger dependence on their parents, which is a well-known reason for increased conflicts.²⁴

There were very few differences in the experiences between the AYA cancer patients and survivors. Thus, the need for peer-to-peer support, fear of going out and meeting people, fear of deterioration in health, parents' attention and overprotection, as well as the feeling of loneliness, were the same among all participants. Specific for survivors was that they enjoyed the opportunity to get a respite during the lockdown, and some of them also felt their life was put on hold twice. These very similar experiences of the COVID-19 lockdown among AYA cancer patients and survivors may be because some of the survivors' immune systems were still impaired. In addition, the survivors' own interpretations of health status and caution after a period in life with a life-threatening disease may have influenced their behavior and experiences.

Limitations

A limitation of the study may be that telephone interviews often become shorter than interviews performed through physical meetings, and the researcher misses the possibility to read the participants' body language. Thus, data may have become more comprehensive through face-to-face interviews. Due to the COVID-19 pandemic, however, we could not meet with the participants. Also, discussions in the author group were performed via e-communication, and thus, nuances may have been lost. However, a common agreement on the final analysis and article was achieved. Another weakness of the study may be that the study was not designed to show specific challenges for individual diagnoses. Nevertheless, the participants' diagnoses were representative of the cancer diagnoses of AYAs in Denmark. Moreover, experiences with the need for peer-to-peer support during the lockdown are not transferable to settings and populations with no such initiatives.

Conclusions

The consequences of the COVID-19 lockdown were significant for AYAs during and after cancer treatment. The participants experienced loneliness, anxiety, lack of psychosocial support, and lack of physical contact. In addition, and of specific importance to the disease trajectory, lack of rehabilitation and lack of support during hospital visits were reported. Several felt doubly affected as the COVID-19 pandemic was perceived as an extra stressor alongside the cancer diagnosis. However, a positive side effect of the lockdown period was the experience of getting a respite to recover physically and mentally during and after the cancer trajectory. Based on the results of this study, we recommend that the health care system provides extra support to AYAs after the lockdown period. It may be important to implement online peer-to-peer groups and strengthen the AYAs' physical and mental health, for example, through online rehabilitation and consultations as long as it is not possible to meet in real life. Independent of the results of this study, a range of initiatives were introduced in Kræftværket after the first lockdown period, which may inspire clinicians in other health care settings. Weekly outside peer-to-peer picnics were restored in a park (according to the authorities' recommendations) where significant issues were raised, and the COVID-19 situation was on the agenda. In addition, the AYAs had the opportunity to talk to a priest about loneliness, anxiety, future, and thoughts that may occupy them, and all AYAs were invited to virtual meetings with the Kræftværket staff twice a week. Finally, the Kræftværket staff offered all Kræftværket AYA members companionship for treatment appointments and consultations at the hospital since relatives were still denied access after the lockdown period.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding received.

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