People who develop cancer are often frequently hospitalized and face physical and emotional challenges, and this is especially true for children and adolescents. Intensive cancer treatment and long hospital stays hamper opportunities for social interaction with peers, which is often crucial for the well-being of children and adolescents and thereby for their recovery process. Researchers from Rigshospitalet investigated how an ambassador programme affects the daily lives of children and adolescents hospitalized with cancer.
The trajectory of cancer often presents many challenges to children and adolescents with cancer. A major one is the lack of interaction with peers during the years when they are developing most rapidly: biologically, cognitively, emotionally and socially. An ambassador programme involves two selected school classmates co-admitted to visit a classmate with cancer. The programme at Rigshospitalet is part of a larger research-based rehabilitation study called RESPECT (Rehabilitation Including Social and Physical Activity and Education in Children and Teenagers with Cancer).
“Children and adolescents need to reflect with their peers to create and maintain their identity. If this process is neglected, the opportunities for constructing their identity and their perception of normality are reduced. Involving the peers in the hospitalization and disease trajectory reinforces the feeling of being the same person as before being diagnosed and helps the children and adolescents with cancer to remain optimistic and to remember that that there is something worth returning to,” explains Hanne Bækgaard Larsen, Senior Researcher and Associate Professor of Nursing, who leads the RESPECT project at Rigshospitalet in Copenhagen.
Cancer patient or a teenager?
Adolescents who previously had cancer describe how these ambassadors reinstated a sense of normality in daily life in the hospital by reducing loneliness and social isolation and by acting as a bridge between the school network and the disease trajectory. Including classmates in the process thus has the potential to improve the psychosocial effects of cancer treatment.
“The RESPECT project comprises several components, one involving nurses visiting schools and teaching classmates about cancer to provide a framework for understanding what a child or adolescent with cancer experiences,” says Hanne Bækgaard Larsen.
The next step in the programme is two ambassadors acting as class representatives, who alternated being co-admitted to hospital for one day every 14th day of the adolescents’ inpatient treatment for cancer. The ambassadors participated for a whole day (9:00–15:00) in the hospital routine of blood tests and scans of the adolescent with cancer to provide insight into what living with cancer is like for their hospitalized classmate. Through interviews, the adolescents with cancer described how their ambassadors gave them the peer interaction they craved, added alternative content to daily life and created the feeling of not being forgotten.
“When the ambassadors visited them in hospital, the adolescents no longer focused on cancer and treatment but rather on ordinary activities. By doing age-appropriate activities, the adolescents were able to maintain their identity rather than being a cancer patient,” explains co-author Marianne Vie Ingersgaard, PhD student at Rigshospitalet.
Marianne Vie Ingersgaard also explains how the adolescents described their ambassadors as behind-the-scenes friends during the illness, getting to see everything related to treatment, side-effects and emotional consequences during the day they are co-admitted in hospital. The experiences observed by the ambassadors were crucial in creating a sense that the adolescents share their cancer story with their healthy classmates, thereby creating a mutual reference about cancer.
Returning to daily life and school
Although the idea of returning to school helps to evoke optimism among children and adolescents with cancer, unfortunately the expectations rarely live up to the reality of leaving the hospital.
“At the hospital, they talk about missing their friends and feeling lonely but say that this is okay, because they expect things to return to normal when they return to school. Unfortunately, they are severely disappointed, ”says Hanne Bækgaard Larsen, who explains that plenty of help is available when the adolescents are ill, but few resources are available to help them return to their everyday life after treatment.
Most adolescents not only felt different when they returned to school but were also frustrated that their peers could not relate to what they had been through. But the mutual understanding created between the adolescents and their ambassadors of the effects of experiencing a cancer trajectory, including treatment, side-effects and emotional and social consequences, comes in handy.
“The adolescents with cancer tell us that they experience a special bond with their ambassadors because they understand better what the adolescents with cancer have been through. The emotional bond is not the only aspect that makes their return easier, since the adolescents also find that the support helped them with academic and physically challenging situations,” explains Marianne Vie Ingersgaard, adding: “The ambassadors are also aware of any physical impairments their classmate may have and can therefore help by anticipating any challenges. One of the adolescent boys who had major back problems after treatment told us how his ambassadors always helped him up the stairs without him even having to ask for help or articulate the need,” explains Hanne Bækgaard Larsen.
Not always a rose garden
Although the research suggests that the ambassador programme is generally appreciated, there are potential thorns in the envisioned rose garden of having classmates present during treatment. Marianne Vie Ingersgaard recalls how adolescents think that inviting a classmate to the hospital while appearing most vulnerable and physically weak can be very daunting.
“Adolescents require a certain level of protection from their ambassadors to maintain the balance of power in the relationship. However, seeing the negative aspects of having cancer is also necessary for developing understanding and insight into what going through the process feels like. Paradoxically, although the experience in some cases can feel humiliating, the adolescents with cancer also clearly knew that these situations resulted in the ambassadors developing the deep insight into the disease trajectory – which they valued highly,” says Marianne Vie Ingersgaard, adding that the benefits of having ambassadors co-admitted with their ill classmate ultimately outweigh the negativity associated with feeling humiliated and inferior.