The Place of Sick Peers in Adolescents and Young Adults with Cancer: Advantage,Disadvantage,and What Makes Barriers to the Encounter

Abstract

Purpose:

The appreciation of peer support can vary from one country to another due to the cultural and relational differences. This study explores what perceptions French adolescents and young adults (AYAs) in post-treatment for cancer have of the place of sick peers during their treatment and what can make barriers to meet them.

Methods:

A semistructured interview has been proposed 6 months after the end of cancer treatments. A thematic analysis has been conducted to highlight the major themes and subthemes identified through the participants' discourses.

Results:

Twelve AYAs (mean age 23 y.o., standard deviation = 2.8; min = 19; max = 26) from two French cancer centers were interviewed. Five major themes were identified, but only two were presented in this article: the place of peers and the impact of coronavirus disease 2019 (COVID-19) epidemic on AYA facilities. AYA peers with cancer major theme demonstrated that meeting sick peers has benefits (e.g., identification, understanding, support, feeling of normalcy) but also has disadvantages (e.g., negative emotional influence). The benefits of peer-to-peer meetings seem to outweigh the disadvantages. Nevertheless, AYAs can face social barriers to this kind of relationship (e.g., fatigue, need to focus on oneself, confrontation to cancer and negative events, feeling of unnatural meeting). Finally, patients' encounters and the normal functioning of AYA facilities have been hampered by the COVID-19 pandemic.

Conclusion:

Even if AYA services systematically suggest a meeting with other sick peers, it is important to reiterate this proposal since the needs can evolve over time. It can also be interesting to propose places of life outside the hospital to make the encounters more comfortable and natural for AYAs.

Clinical Trial Registration number: NCT03964116.

Introduction

In the 1960s, the scientific community became interested in the medical specificities required for the care of adolescents and young adults (AYAs) with cancer.^1,2 In 1978, the first medical unit for adolescents was created, but it was not until the 1990s, following the impetus of the teenage cancer trust, that facilities for AYA oncology became permanent and developed internationally.³ In AYA population, the interest is to have a patient-centered approach while taking advantage of a family-centered approach since the family has a significant role in both medical and psychological care, as well as medical expertise of dedicated healthcarers.^3–5

In 2017, in a survey all over Europe, with heterogenous resources, 55% of AYAs diagnosed with cancer did not have access to a dedicated facility, while 76.9% would have liked to.^6,7 According to the charter of international rights of young people with cancer, AYAs diagnosed with cancer should have the possibility to access these structures.⁸

In France, 2300 AYAs are confronted with a diagnosis of cancer each year, including 900 adolescents (15–19 y.o.) and 1400 young adults (20–24 y.o.).⁹ The first AYA facility was created in 2002 in Gustave-Roussy Cancer Center in the Ile-de-France region, and with the impetus of the third Cancer Plan (2014–2019), about 20 AYA structures were created in the 2012–2022 decade to follow-up these AYAs from diagnosis to the end of treatment all over French regions. Some facilities are dedicated units, grouping together young patients in the same department and others functioning with specialized mobile teams which care for AYAs in general wards, either in pediatric or adult services. Both, in addition to specific medical and psychosocial care, offer places and activities to bring these young patients together.^10–12

Health professional teams are multidisciplinary (e.g., doctors, nurses, psychologist, social worker, teacher, and youth support workers). One of the specificities of these facilities is the input of professionals of both pediatric and adult background.^10,11 There are also spaces available to AYAs, giving them the opportunity to follow their treatment in an environment close to everyday life (e.g., television, WiFi, AYA room, computer, video games, library, gym…), where professionals can propose group activities and support group to promote interactions between sick AYAs.^{3,4,6,8,13,14} The aims of these facilities are to preserve the process of adolescence, by promoting the processes of separation-individuation, empowerment, and identity construction, and therefore to overcome the psychosocial and physical consequences of cancer.

Indeed, a cancer diagnosis and its treatments can induce physical (e.g., fatigue, alopecia, scars, pain, nausea, body changes)^15–18 and psychological effects (e.g, loss of independence, altered self-image, new social identity, isolation from nonsick peers, uncertainty, loss of sense of normalcy),^10,17–24 going against to the physical, psychological, and sometimes cognitive developments specific to this population. From a psychopathological perspective, between 7% and 12% of AYAs with cancer present a clinical depressive symptomatology^25–27 and about 12% and 29% a clinical anxious symptomatology during cancer treatment.^26,28

In terms of social support, psycho-oncology research in young patients has shown that the more social support from family and friends is available, the better is the mental health, the lower are the depressed or anxious mood, and the higher is AYAs' adjustment to the disease.^20,21 According to several studies, AYAs prefer to share their experience with patients in the same age group because it allows them to share fears and concerns, many indicates that talking with others in a similar situation helps them feel less alone, to distract themselves from cancer treatment, to make them feel normal again, to be more resilient, to better adjust to their illness, and to feel understood from “being in the same boat.”^2,29–37 These AYAs report feeling greater understanding and more targeted support from sick peers, compared to their everyday friends.³⁸

Being in contact with other AYAs with cancer can also lead to a negative experience such as awareness of the disease, guilt, comparison with others, confrontation with relapses, and the death of a peer.^{29,30,36,38,39} The advantages of those facilities could nevertheless outweigh its disadvantages.⁴⁰ Some adolescents even report positive personal development when confronted with peers, as well as after the death of a sick peer (e.g., continuing bond with the deceased, change in perception of oneself and the world, greater maturity).^39,41–44 Few studies have focused on the social barriers that AYAs may encounter when faced with sick peers (e.g., accept one's new identity as a sick person, exposing oneself to possible anxiety-provoking events).^36,38,45

Aims of the Study

To our knowledge, there is no French study that specifically targets the perception that AYAs with cancer have of their sick peers. Moreover, the appreciation of peer support can certainly vary from one country to another, due to the cultural and relational differences.⁴⁶

This study explores what perceptions French AYA cancer survivors had of their sick peers during their care and what are the social barriers.

Methods

This study is part of a mixed-method, longitudinal research project, PAIRS-AJA, evaluating the evolution of psychological adjustment of AYAs with cancer every 3 months from diagnosis to remission with psychological questionnaires and a first qualitative study investigating the grieving processes of a sick peer during the follow-up protocol.^27,39

The present study focuses on second qualitative aspects of the project, which is to offer an interview to AYAs at the end of cancer treatment to explore the impact of social relationships with sick peers.

To meet the scientific requirements of qualitative research, we use the COREQ criteria.⁴⁷

Participants

The recruitment took place between January 2019 and December 2021 at two cancer centers in France: one in Paris, with a dedicated AYA unit, and the other in Lyon, with a specialized AYA mobile team. AYAs aged between 15 and 27 years, who have been diagnosed with all types of cancer or recurrence of cancer, have been recruited. The criteria for noninclusion are the presence of a psychiatric pathology, the inability to speak French, and being deprived of liberty.

Following the announcement of the diagnosis by the referring physician and the beginning of the care process, the study has been systematically presented to the AYA within 2 months. The physician explained the study to the adolescents and their parents for under-18 and then a research psychologist met them for further information. Free and informed consent were given for signature.

Data collection

A semistructured interview with the research psychologist has been proposed systematically to AYA patients at the end of the study protocol which is 6 months after the end of cancer treatments. The individual interviews were conducted through a recorded videoconference with the research psychologist. The interviews all started with an initial question: “Have you met other AYAs with cancer during your cancer treatment?.” Other probing questions could be asked: “Can you tell me about your relationship with other teens and young adults with cancer?”; “What was it like to be in contact with other AYA with cancer?”; “What impact did it have on you?.” Interviews were conducted until data saturation, when two consecutive interviews did not bring any new subthemes. A sociodemographic questionnaire (e.g., age, gender, place of residence, education or professional status) and a medical questionnaire completed by the referring physician (e.g., type of cancer, treatments) complete these data.

Qualitative analysis method

A thematic analysis, an inductive approach, has been conducted to highlight the major themes and subthemes identified through the participants' discourses.⁴⁸ The methodology follow Braun & Clarke (2006) checklist for a thematic analysis.⁴⁹ First, an in-depth reading of the transcribed content is carried out. Second, the sentences were divided by meaning unit and then coded on the NVivo software. The different codes were grouped, without any theoretical basis, into subthemes that are coherent, consistent, and distinctive, which were then grouped into major themes.⁴⁹ Verbatims illustrate the themes to guarantee the trustworthiness of the study.⁴⁷

The thematic analysis was conducted by the research psychologist and PhD student J.P., under the supervision of C.F., an assistant professor with an expertise in oncology, AYAs, and qualitative analysis.

Results

Sample

Twelve AYAs in remission from cancer were interviewed 6 months after the end of their treatment, including eight women and four men. Nine were from the Lyon cancer center (with a mobile AYA team) and three from Paris (with a dedicated unit). Mean age was 23 years (standard deviation = 2.8; min = 19; max = 26), and the interviews lasted about 46 minutes (Table 1).

Table 1.

Sociodemographic and Medical Information

Fictive names	Gender	Age	Facility	Cancer type
Amelia	Female	19	AYA unit	Medulloblastoma
Astrid	Female	21	AYA unit	Carcinoma
Henry	Male	19	AYA unit	Germ cell tumor
Anna	Female	24	AYA mobile team	Sarcoma
Claire	Female	25	AYA mobile team	Hodgkin lymphoma
Daphne	Female	25	AYA mobile team	Medulloblastoma
Elizabeth	Female	25	AYA mobile team	Germ cell tumor
Linda	Female	26	AYA mobile team	Hodgkin lymphoma
Tiffany	Female	25	AYA mobile team	Hodgkin lymphoma
Matthew	Male	25	AYA mobile team	Germ cell tumor
Oliver	Male	25	AYA mobile team	B cell lymphoma
Theodore	Male	19	AYA mobile team	Hodgkin lymphoma

AYA, adolescent and young adult.

Eight AYAs (66%) have met and exchanged with other peers with cancer, while the other did not and gave their opinions on the potential benefits of these meetings and on what can make barriers.

Qualitative analysis

The thematic analysis identified five major themes: the relationship with AYA peers, the medical framework, the family and friends support, the relationship with other patients, and the psychological adjustment (Fig. 1 and Table 4).

FIG. 1.

Thematic tree.

In this study, we focused on the major themes about the relationship with AYA peers and the medical framework and their subthemes.

The place of AYA peers through the cancer experience

The wish to meet with sick peers

Half of the participants (n = 6, 50%) wanted to meet other AYAs with cancer during their treatments, and two participants (17%) would have liked to meet them after the end of treatment (Table 2). This lack of desire to meet with other AYAs is partially explained by enough support from family and friends.

Table 2.

Major Theme: The Place of Sick Peer in Adolescents and Young Adults with Cancer

Theme and subtheme	Participants (n = 12)	Participants (%)	Number of occurrences	Verbatim
Relationship with AYA peer	12	100.0	735
Meeting with peers	12	100.0	105
Proposition to meet peers	5	41.7	16
Wish to meet peers	10	83.3	36	“I was always looking for someone my age in the hallway to talk to” Linda, 26 y.o.“Now that it's behind me [cancer], I want to talk to people about it” Astrid, 21 y.o.“I had so much support around me and people who were listening that I didn't necessarily need other people [peers] to talk to and share it with” Daphne, 25 y.o.
Yes	6	50.0	22
No	4	33.3	11
Retrospectively	2	16.7	3
Meeting with peers	12	100.0	37
Yes	8	66.7	30
No	4	33.3	7
Short-lived relationship	6	50.0	15	“It was a kind of temporary relationship, that we supported each other during the treatments […], it was certain that there would be less discussion once the treatments were over” Linda, 26 y.o.
Similarity and differences	12	100.0	97	“I was happy to meet someone who had gone through almost the same thing, but it is always different, because we are different in character and also in our social environment” Amelia, 19 y.o.
Similarity	10	83.3	63
Differences	9	75.0	33
Benefits	12	100.0	279
Reference point	11	91.7	62	It's kind of reassuring because if I had something that was weird or that I had for the first time, whether it was her or me, we would ask each other “did you have that too?” Linda, 26 y.o.
Lower sense of isolation	10	83.3	38	“To say to myself ‘this person is almost my age, and she is also struggling,’ it made me feel less alone” Claire, 25 y.o.
Support	9	75.0	79	“We felt the same things […], we live the same things, so we understand each other better”; “I wanted to protect this person, to tell him that it would pass, not to think about such a thing [cancer and its treatments] […], to think about something else. I often made jokes, to make people laugh to think about something else” Amelia, 19 y.o.
Understanding	9	75.0	40
Distraction	5	41.7	23
Relativism	8	66.7	31	“I found it important to be able to put things in perspective toward other people. Because you realize that it's not fun to be in that situation, but that there are people in worse situations than you are” Oliver, 25 y.o.
Sense of normalcy	5	41.7	6	“It's strange but I had the impression that we were no longer under treatment and that we were back to normal” Henri, 19 y.o.
Emotional influences	11	91.7	48	“If someone had told me that I was going to live through the chemo and treatments as well, it would have relieved me. But if my neighbor had told me that he had gone through them much less well, it would have stressed me out” Matthew, 25 y.o.
Negative impact	8	66.7	19
Positive impact	7	58.3	29
Barriers of socialization with peers	10	83.3	135
Personal barriers	10	83.3	66
Psychological barriers	9	75.0	43	“I am someone who sometimes likes to be solitary, and in addition, I needed to be with myself, so I didn't have this need, this desire to go out and create relationships” Matthew, 25 y.o.
Physical barriers	8	66.7	23	“I didn't feel well at all, sometimes I didn't even have the strength to move around, I didn't feel… physically… I didn't feel fit to go socialize with other young people” Elizabeth, 25 y.o.
Barriers with respect to peers	7	58.3	58	“I didn't necessarily want to have to talk about it [cancer] again, and I think that it would made me even more part of the patient group […]. Talking to young people who are sick is even more like entering into the disease and I didn't want to” Claire, 25 y.o.
Cancer confrontation	6	50.0	21	“If on top of that I have to meet people who have other problems… It's really not what I need and so it was to protect myself from too much emotion” Theodore, 19 y.o.
Emotional apprehension	5	41.7	13
Psychological and health states differences	5	41.7	13	“I didn't want to hear complaints from other patients […]. I was more focused on what went well, so I wanted to stay in my bubble” Matthew, 25 y.o.
Socialization effort	3	25.0	11	“It wasn't something that interested me because I didn't have the strength to go out and meet people and make a social effort” Theodore, 19 y.o.
Needs	5	41.7	11
Emotional supervision	2	16.7	3
Other places out of the hospital	1	8.3	1
Relation and communication	7	58.3	35	“It was better that she was the same age as me because I thought that I had more ease to speak with her […] I would have had perhaps less ease to speak with someone of about fifty years old” Tiffany, 25 y.o.“I felt more comfortable but also because he dared to ask questions that others didn't dare to ask, that my friends never dared to ask me” Astrid, 21 y.o.
Mentoring	7	58.3	23	“I am happy to help some people who are starting their treatment. […] I learned a lot of things and I am happy to teach these things to other people who are starting or who don't know the same things” Claire, 25 y.o.
Events occurred to sick peers	5	41.7	13	“Clinging to people and becoming very fond of them, and that it doesn't necessarily end well, I think at that point it would be very difficult because it also brings up one's own weaknesses and fragility” Daphne, 25 y.o.

Number of occurrences: total number of quotations of a subtheme or major theme in participants' discourse on NVivo software.

The relationship with sick peers and its benefits

For 58% (n = 7) of participants, being with other AYAs was a facilitating factor for relationship building and communication. AYAs felt a greater closeness and more ease in speaking freely. Half of AYAs (n = 6, 50%) described the relationship as occasional encounters and short lived, lasting only as long as the treatment.

\As well as feeling similar to the situation of other AYAs (n = 10, 83%), it is possible to differentiate oneself (n = 9, 75%). AYAs may identify with their peers in terms of cancer type, treatments, cancer experiences, age, and interests, but they may also differ from them, such as not having the same way of adjusting psychologically to cancer, not having the same side effects, or sometimes being too far apart in age.

The identification to peers and the differentiation from them allow AYAs to have their own subjectivity of cancer experience. This enables AYAs to have individual as its point of reference (n = 10, 83%), of comparison, and something to put into perspective with their own medical situation (n = 8, 67%).

Being in contact with other young patients allowed AYAs to feel less alone (n = 10, 83%) and to regain a sense of normalcy (n = 5, 42%).

According to participants, peers have a better understanding of the cancer experience (n = 9, 75%) than family, friends, or health caregivers. Peers also provided emotional and informational support (n = 9, 75%), as well as distraction (n = 5, 42%).

The relationship with peers can have a positive (n = 7, 58%) and/or negative (n = 8, 68%) emotional influence depending on the events peers may encounter during their care (n = 5, 42%). It can give hope and reassurance to hear about a peer's remission but sadden and increase anxiety when a peer's health status is more fragile or relapsing or even die.

Although contact with other AYAs may influence their emotional state, 7 out of 12 (58%) participants at the end of treatment said that they would like to mentor other AYAs who are undergoing treatment to answer their questions and provide support.

Social barriers with AYAs' peers

According to the analyses, there are obstacles preventing AYAs to meet their peers.

From a personal point of view, 9 out of 12 (75%) AYAs mentioned the need to refocus on oneself during hospitalizations, a need for loneliness, or not being in the mood to socialize. Other AYAs faced physical barriers (n = 8, 68%) such as fatigue or practical issue with AYA facilities.

From perceptual point of view, AYAs emotionally apprehend the meeting with peers (n = 5, 42%) since being in contact with them can confront them with cancer, sometimes with poor psychological conditions of peers or even negative events (relapse or death) (n = 6, 50%).

Other barriers were also mentioned such as the difference in psychological state between the patient and their peers, a difference in the progress of cancer treatments, or an age difference among 15–27-year olds (n = 5, 42%). Moreover, meeting new people requires a socialization effort and it can be difficult to integrate an established group of people, and these meetings seem unnatural (n = 3, 25%).

The impact of coronavirus disease 2019 and the place of AYA facilities

The impact of coronavirus disease 2019 (COVID-19) was undeniable (n = 7, 58%) (Table 3). Indeed, this epidemic had a major impact on the functioning of AYA facilities and, due to social isolation, hindered meetings between AYAs but also with visitors (e.g., parents, siblings, friends, associations). Nevertheless, for the AYAs, this epidemic had a positive aspect since it put a brake on the life of the general population, like cancer with AYAs.

Table 3.

Major Theme: Adolescents and Young Adult Facilities and the Impact of Coronavirus Disease 2019

Theme and subtheme	Participants (n = 12)	Participants (%)	Number of occurrences	Verbatim
Medical framework	12	100.0	284
Structures	12	100.0	128
AYA facilities	11	91.7	63	“I felt really well accompanied. […] Honestly, it's really a great service. […] I felt well followed and considered. […] I realized that I had a lot of privilege” Astrid, 21 y.o.
Specialized AYA professionals	11	91.7	49	“She [nurse coordinator] was a great listener, she would text me to see how I was doing. […] She took care of everything, and it was good. I felt really supported” Elizabeth, 25 y.o.“The nurses respond to the slightest question, who respond within a day or even an hour. Whenever I had a problem, they were there” Tiffany, 25 y.o.
Nonspecialized AYA professionals	6	50.0	9
Medical treatments	12	100.0	125
Effect of treatment	11	91.7	26
Stages of care	11	91.7	68
Post-treatment	3	25.0	6
Cancer treatment	7	58.3	25
COVID-19	7	58.3	31	“Because it was COVID pandemic, she [activity leader] told us that we could play a game or talk to each other online. […] But I was not able to be in direct contact with young people. […] I think it's quite a barrier, the fact of talking through a screen or by message. And so we didn't talk so much about the disease, about life” Amelia, 19 y.o.“COVID put everyone's life on hold and it allowed to put us back on equal footing” Astrid, 21 y.o.

Number of occurrences: total number of quotations of a subtheme or major theme in participants' discourse on NVivo software.

COVID-19, coronavirus disease 2019.

Table 4.

Other Themes and Subthemes

Theme and subtheme	Participants (n = 12)	Participants (%)	Number of occurrences
Family and friends support	12	100.0	142
Family support	12	100.0	73
The place of family	12	100.0	53
Family history of cancer	6	50.0	18
Difficulties	9	75.0	31
Friends support	5	41.7	14
Relationship with other patients	11	91.7	123
Pediatrics	7	58.3	45
Adults and elder	6	50.0	37
Other	4	33.3	18
Social network	3	25.0	23
Psychological adjustment	12	100.0	363
Cancer negative impacts	12	100.0	161
Uncertainty	10	83.3	43
Sadness	10	83.3	26
Sense of abnormality	8	66.7	23
Sentiment injustice	8	66.7	21
Anxiety	7	58.3	23
Dissociative state	3	25.0	8
Post-traumatic sign	2	16.7	6
Sense of regression	2	16.7	3
Loneliness	2	16.7	2
Self-blame	1	8.3	3
Insomnia	1	8.3	2
Suicidal thoughts	1	8.3	1
Cancer positive impacts	7	58.3	25
Changes in self-perception	7	58.3	20
Changes in the world perception	3	25.0	5
Coping strategies	12	100.0	118
Positive thoughts	11	91.7	58
Defined goals	9	75.0	24
Avoidance	7	58.3	23
Humor	3	25.0	5
Behavioral disengagement	3	25.0	8
Perception of others	8	66.7	24
Image given to others	8	66.7	18
Cancer taboo	2	16.7	3
Perception of other	2	16.7	3
Body issues	5	41.7	21
Physical consequences	5	41.7	10
Perception of oneself	4	33.3	11
Representation of cancer	3	25.0	12

Number of occurrences: total number of quotations of a subtheme or major theme in participants' discourse on NVivo software.

Despite this epidemic, AYA facilities play a major role in the management of these patients. According to 11 out of 12 participants (92%), whether in a dedicated unit or with a mobile AYA team, it offers an appropriate and containing hospital setting.

AYAs emphasized their satisfaction and the importance of these multidisciplinary teams dedicated to AYA due to a system of referral caregivers, the support and information provided, and the understanding of the teams and their availability (n = 11, 92%).

Discussion

Consistent with the literature, AYAs value the relationship with sick peers as they feel a greater closeness, facilitating more honest and transparent communication.^34,36,50 Indeed, it provides sources of identification,^14,51 comparisons with peers in terms of type of cancer, experiences with treatments or psychological adjustment, and thus allows to put one's own medical situation into perspective.^31,36,52 Being with other AYAs with cancer reduces feelings of loneliness and improves feelings of normalcy.^{14,24,31,34,35,53,54} Peers are perceived as having a better understanding of the cancer experience,^38,55 and can provide support,^{14,34,55–60} distraction, and hope.^10,34,37 The key is to be in the “same boat” while having her/his own subjectivity.³⁰ Indeed, according to the theory of psychosocial development, peers have an important place in adolescence, a period of identity “crisis.”^61,62 Being part of a group would support identity formation and bring a greater sense of understanding from peers than from parents.^63,64 Peers can influence thoughts, behaviors, emotions, and self-concept.^65–67

It can also have disadvantages, such as anxiety, fear, or sadness when AYAs are confronted with negative events that occur in their peers (e.g., fragile mental or physical condition, relapse, and death).^29,30,40 Nevertheless, the benefits of peer-to-peer meetings seem to outweigh the disadvantages, and some AYAs in remission are interested in mentoring AYAs in treatment.^34,36,40,68

Ultimately, with so many benefits, why do some AYAs not want to meet peers of the same age?

Studies have shown that meeting peers means having to accept one's new identity as a sick person and thus belong and identify with a group of sick patients. Meeting cancer patients also means exposing oneself to possible anxiety-provoking events (e.g., relapse or death).^{36,38,45,60,69,70} During treatment, other elements can make barriers to these encounters as it requires a socialization effort, which AYAs sometimes do not have due to both physical and psychological fatigue from cancer treatments.^55,70,71 As a result, 9 out of 12 AYAs spoke of their need for self-centeredness and solitude. Moreover, according to AYAs, meeting sick peers in dedicated facilities do not happen naturally compared to fortuitous encounters as in everyday life. It has an opportunistic aspect (e.g., exchange of experience, comparison to others) generating discomfort to the elaboration of a relationship. Subjectively, some AYAs prefer to meet with peers who are further along in their treatment, while others prefer to meet with peers who are also beginning their treatment to avoid any apprehension.^31,34 According to Holland et al., these barriers can be explained by Maslow's pyramid model, as AYAs need to feel safe, both emotionally and physically, before they can allow themselves to socialize.⁷¹

Finally, AYAs' encounters and the normal functioning of AYA facilities have been hampered by the COVID-19 pandemic.

Because of isolation measures, some AYAs were unable to benefit from peer-to-peer exchanges, except virtually.⁷² In contrast, some AYAs felt a sense of equity as the daily life of the general population was paused, just as cancer pauses the lives of AYAs.⁷² The functioning of the French AYA facilities was strongly modified during the first year of pandemic: prohibition of visits (with some exceptions)^72,73; closed dedicated room; and virtual adaptation of group and/or individual activities (e.g., adapted sport, teaching, artistic activity), and gradually resumed their normal functioning 2 years after the beginning of the pandemic.

This study is not without limitations. Despite the saturation of qualitative data with 12 interviews, the sample could have been increased according to Mason's (2010) recommendation of a minimum of 15 interviews.⁷⁴

As this research was a longitudinal study, AYAs did not experience their cancer treatment under the same health conditions because of COVID-19. As a result, some AYAs did not meet peers. It can be hypothesized that not meeting other sick AYAs because of COVID-19 might have decreased their perception of the positive effects that can allow those encounters and that they were then more focused on oneself.

From a clinical point of view, even if AYA services systematically suggest a meeting with other sick peers, it is important to know at first if the AYA wishes to meet some or not and to reiterate this proposal throughout the care since the needs can evolve over time.^{23,33,60,71,75}

Even though the activities already in place within hospitals are already adapted and well perceived by AYAs, we can recommend a delocalization of a part of these activities by proposing places of life outside the hospital to take the AYAs out of the hospital setting and thus promote encounters perceived as more natural (e.g., place outside the hospital, associative place, café/game bar).^29,36,58 In the same idea, in France, some associations propose outdoor activities, and sometimes week-ends and camps (e.g., “Siel Bleu,” “Aïda,” “Princesse Margot,” “À chacun son cap,” “Rêve d'Enfance”).

One of the most important points, especially in France, is the post-treatment period. Indeed, AYAs sometimes feel neglected by the medical structures since appointments are made more remotely, twice a year, whereas they were used to meeting their health professionals at least every month and often more. When transitioning to survivorship, AYAs do not know what resources can help them and where to find it when they have questions or when there are confronted with anxiety of relapse.⁷⁶ With the benefit of hindsight with cancer experience, survivorship might be when AYAs need more to exchange with other survivor peers. According to Barnett , 75% of AYA perceives the need of support group in remission.²³

After receiving that much care to heal from cancer, some AYAs want to give back what they received by helping others.³⁴ It would be advantageous to propose a mentoring system between AYAs in remission and those undergoing treatment, as proposed by the French association “On est là.”^14,36,68

For future research, it would be interesting to follow the effects of social support, particularly from peers, on anxiety and depression symptoms over time. In addition, further French studies on the psychological adjustment of AYAs to cancer remission and their needs would be rewarding.

Conclusion

The aim of this study was to investigate how AYAs with cancer perceive the place of their sick peers during their experience of cancer. Results demonstrate that positive aspects (e.g., sense of normalcy, understanding, distraction) of sick peers' encounters outweigh the potential negative effects (e.g., anxiety, sadness) and point out what can make barrier to it (e.g., fatigue, confrontation to cancer, COVID-19). Those results encourage the development of dedicated facilities for AYAs with cancer.

Ethics

This research was approved by the North-West III Persons Protection Committees—France, on 08/09/2018, N° ID-RCB: 2018-A01526-49, declared to the National Agency of Medicinal and Health Products Security and registered in ClinicalTrials.gov

Footnotes

Acknowledgments

A special and obvious thank-you to the AYA patients, without whom this study could not be done, for having given their time, their energy, and for having exposed themselves during these interviews. Another warm thank-you goes to both teams of the Curie Institute—Paris and the Institute of Hematology and Pediatric Oncology—Lyon, for their significant investment in this research.

Authors' Contributions

J.P.: conceptualization, data curation, formal analysis, funding acquisition, investigation, project administration, visualization, and writing—original draft. V.L.: conceptualization, funding acquisition, methodology, project administration, supervision, and writing—review and editing. P.M.-B.: conceptualization, funding acquisition, methodology, project administration, supervision, and writing—review and editing. C.C: investigation, resources, and writing—review and editing. C.R.: investigation, resources, and writing—review and editing. C.F.: conceptualization, formal analysis, funding acquisition, methodology, project administration, supervision, and writing—review & editing.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research would not be possible without our financers: the Gilles Thomas Foundation, Medicine Enterprises for Access to Care Foundation under the aegis of France Foundation, and the financing of Human Cognition, Behavior and Conduct Doctoral School (261 – 3CH) of Paris Cité University.

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