When going to class is a break from illness

Esplugues de LlobregatIt's 10:30 a.m. on a winter Friday, and when we arrive at 12-year-old Martín's room, we find him with his hospital teacher, Alba Sau. Together, they're trying to identify the fruit scent of each of the perfume bottles arranged on a tray. The young boy, who suffers from a rare metabolic disorder called sulfite oxidase deficiency, laughs every time he correctly identifies one of the fragrances, showing off his keen sense of smell. The day before, they had been painting, improvising a paintbrush with a straw and a pencil that Martín used in his mouth. "We try to adapt as much as possible to each child's tastes and interests to connect with them," Alba explains, while trying to set up Tobii, the tablet Martín uses to communicate through his eyes, on Martín's bedside table. "For me, it's essential that Martín can communicate, not only with me, but also with his mother and the healthcare staff; it's part of his recovery," she emphasizes.

A right of hospitalized children

Alba has been spending about an hour a day with the young man, who has been hospitalized for 10 days. He arrived from his native Granada, accompanied by his mother, María José, because he needed hip surgery. Days earlier, Martín's femur had dislocated, and in addition to reconstructing the bone, the surgeons had to lengthen his tendons because the bone was growing faster than the tendon, preventing him from straightening his legs. The hospital in his hometown didn't dare perform the surgery, so María José didn't hesitate to go to the San Juan de Dios Hospital, a center she now considers "home." The first time they were there, the boy was three years old: Granada had been diagnosed with Leigh syndrome, but María José wasn't entirely convinced by that diagnosis and tried everything she could to get Dr. Jaume Campistol, a neurologist specializing in rare diseases, to examine her son. He first went to the Barcelona clinic where he had a private practice, but soon afterward he referred him to Sant Joan de Déu, where he also collaborated.

"Now we have appointments with Dr. Campistol's team, since he no longer works here, but we still feel supported and cared for. And feeling this every time Martín has to come for a check-up or diagnostic test, or undergo any procedure, is priceless," says María José, who also acknowledges the work of the neurologist who follows up with the boy in Granada. This mother says she feels "very confident, supported, and informed" every time they have to be admitted to the center, a sense of security that she also sees her son Martín experience during his stays. Even more so, in his case, since Alba came into his life. "When we learned that there was a possibility of Alba coming to my son's room for a while, I didn't hesitate for a second," recalls María José. "For Martín and the other children who have to be hospitalized for a period of time, it's essential to be able to continue their education, even if it's in an adapted way," she emphasizes. This mother, who defines contact with hospital teachers as "a right of hospitalized children," is aware that the teachers cannot dedicate four hours a day to her son, which is the amount of time Martín spends at school in Granada, but she appreciates that, in the case of bedridden children, the teachers come to their room.

A unique bond

But the general practice at Sant Joan de Déu is for children to travel to the hospital school for classes accompanied by a hospital teacher and some fellow patients. This is confirmed by Alba Sau, a teacher who works in the general pediatrics building, especially in the dialysis unit and in the rooms on the 9th and 10th floors of the hospital; Sandra Canals, who works at the SJD Pediatric Cancer Center in Barcelona (PCCB); and Anna Martínez, who works in the partial hospitalization unit of the Mental Health Autism Unit at the center. The fact that children of different ages and with diverse conditions share a classroom also has numerous benefits for them, especially maintaining some social life. "They get to know each other in the hospital classroom, but then, in the afternoons, they go to the playroom to play foosball, or they go into each other's rooms to chat," Alba points out. Sandra also adds that, especially with teenagers, who are sometimes more reluctant to participate in the classroom, when she encourages them to help with the younger children, "their perspective changes and they see that, during their stay, they too can do something worthwhile, like helping others." In turn, sharing experiences, understanding each other better than anyone else, or being able to tell their peers about the tests or treatments they will have to face—but from the honesty of having lived through it firsthand—creates a unique bond.

At the San Juan de Dios hospital school, where a total of six hospital teachers work, many types of illnesses are addressed. Some require longer hospital stays and others shorter ones, but if the total number of days is already expected to be significant enough to prevent children from keeping up with their regular schooling, the hospital school anticipates that they will benefit from this service. "In some cases, such as in oncology, where we know from the moment they are admitted that they will not be able to attend school for a very long time, the criterion is already met," notes Sandra Canals.

Those responsible for screening cases that will need support from homebound teachers, as well as anticipating whether any child will need a homebound teacher after discharge, are the Child Life team members. This role is filled by nurse psychologists who prepare children and professionals to lessen the impact of hospital teachers. They also coordinate the work of volunteers and music therapists, dog-assisted intervention, the Pallapupes (a group of children who assist children), and all those involved in the San Juan de Dios "Hospital Amigo" (Friendly Hospital) humanization program, within which the hospital teachers operate.

Coordination with the school of origin

When Child Life determines that a hospitalized child meets the criteria for admission to the San Juan de Dios hospital classroom, there is first a bonding period. "We know that many of them have just received a diagnosis, sometimes a very serious one, so, beyond the clinical approach, in the first few days we try to get to know the patient, show interest in what they like, and convey that it's a time for enjoyment and learning, etc. They end up internalizing it as a brief respite," says Alba.

Sandra points out that, sometimes, there are children, and especially teenagers, with whom the barrier never quite breaks down. "However," she adds, "when we arrive at the room during the adaptation period and see that the patient isn't receptive, we try to rethink our planned activity, linking it, for example, to their interests, and if the child is willing to talk about it, the session will have been worthwhile." And in any case, she emphasizes, they always try "to find a way to link the proposal to the curriculum that their home school is currently working on."

In the hospital classroom, where five to seven patients can gather, group activities are also created, and the teachers ask the children how they usually work at their home school. They maintain constant contact with their home school. "This is because," Alba emphasizes, "we coordinate with the school, we request materials, and after the children complete the assignments, we return them to be evaluated by the school itself." Sandra points out that maintaining contact with the home school is also important because "it's essential that the child continues to feel part of their class group and that their teacher is their school teacher; we are not their tutors, but rather an extension of their school during a specific period when they cannot attend." This is why mental health services also dedicate considerable time to coordinating with the children's home schools. Anna Martínez also points out "the implicit need to raise awareness about all the prejudices and stigmas surrounding most mental disorders."

Future outlook

Constant contact with the children's home schools is especially important for teenagers in their fourth year of secondary school or second year of high school, "who are very worried about their grades, and we have to draw up a plan with the school so that their admission penalizes them as little as possible," Sandra points out. This is because their physical and emotional state will likely prevent them from progressing at the same pace as their classmates, who are in the classroom for an average of six hours a day, and the schools must take this into account. "Likewise," Alba clarifies, "we're not simply aiming for them to pass, as we're sometimes told by the schools, because that's not what they want." Ultimately, it's about replicating their daily lives as much as possible, where education is paramount, while they are hospitalized, because, as Alba, Sandra, and Anna note, "part of their progress in terms of health, both physical and mental, depends on their educational support."

Another benefit that hospital teachers provide is giving these young people a sense of future direction, especially during transitional periods such as the end of secondary or high school, when they feel added pressure to achieve their academic goals. Therefore, conveying to them that the ultimate goal is for them to eventually return to their original school often becomes a motivating factor. This is particularly evident in adolescents admitted to the Eating Disorders Unit, who, as Anna emphasizes, "when they realize they can continue their education in the hospital, are committed to attending classes as many days as possible to recover and return to normal life outside as soon as possible."