The child’s opinion matters, especially if he is hospitalized and his health is at stake. The pediatric patient also has the right to be informed on all possible treatments that doctors offer for your case and you have the right to express your opinion on the matter. It can even be said to disagree to receive therapies that are still being tested. Parents and healthcare professionals when deciding which path to take they absolutely must involve him from the very beginning and the important thing is that they do it with a simple language suitable for him, perhaps through a story or a game. the provisions of the Charter of the rights of the child in hospital, adopted in 2005 byAssociation of Italian pediatric hospitals (Aopi), on the basis of the three previous European cards born between the end of the 80s and the beginning of the 90s.
The Aopi Charter
But what do children know about this document? Besides, how would they understand concepts formulated for adults? To break down the communication barrier today the Aopi Card available as an app in augmented reality with a text more understandable for children, rewritten on purpose by the Council of the boys of theGuarantor authority for children and adolescents. To download the app on smartphones and tablets just frame the qr code with the camera present on the new version of the Charter, which can be found online on the Association’s website. The purpose rmaking the little ones aware of their rights during the period of illness and hospitalization, with the help of two animated characters, Tommy (a tomato) and Ollie (an olive), with whom they can identify.
Qr code
You don’t have to wait until he’s turned 18, the child always has the right to know his illness and to actively participate in the treatment process so that he develops tools for struggle and resilience he declares Alberto Zanobini, general manager of the Meyer hospital in Florence and president of Aopi. In the 15 pediatric facilities that are part of this national network totems were set up with brochures bearing the qr code. Each pediatric department can replicate the initiative by printing the brochure from our portal explains Zanobini. Have parents close and enjoy recreational activities, from sport to cinema, from pet therapy to clown therapy, are other rights defined by the Charter. Never like now, with this pandemic and hospitals closed like blockhouses, it is essential to protect the needs of hospitalized children. Maintain a relationship with loved ones and life, despite the anticovid restrictions that force us to reduce visits and physical contacts, it’s part of the healing process recalls the director of the Meyer.
The active role
From the age of two or three, the child must be involved in his state of health. Massimo Resti, who heads the medical paediatrics of the Florentine hospital, learned it in the ward: Using a fairy tale or an experience lived in the family must be made aware of the reason for which he is hospitalized and of the treatments he must undergo. It will better withstand the stings and the most painful interventions and react better to treatment. Children have extraordinary resources that we do not imagine. If they know the disease that makes them suffer they will also learn to recognize the symptoms and once at home to manage the therapy independently (right number 14 of the Charter). What is not taken into account enough is that their reaction depends a lot on that of the parent. Mothers and fathers have a considerable weight, which should not be overlooked. Up to the age of six, the perception and understanding of the disease mediated by the parents underlines Resti. We doctors have a fortiori to worry about that have understood the diagnosis and prognosis correctly, we must be available to listen to their doubts, to answer all questions and to repeat things. If the parent has everything clear in mind, the child will give an equally clear message.
Always tell the truth
Children must always be told the truth, good or bad. A recommendation he insists on Alberto Villani, president of the Italian Society of Pediatrics and head of the General Pediatrics of the Bambino Ges hospital in Rome. The little ones also understand non-verbal language, nothing can be hidden. We often tend to overlook the strength they have to react to suffering. Does the truth help them fight the disease? Certainly. But simple concepts must be used. For example, it goes without saying to a seven-year-old that the therapy only fails in 10% of cases, or rather that it works nine times out of ten. What advice should you give to parents? Always take a positive point of view. By shifting the focus on what the child can do rather than on what he can no longer do. Reasoning for close goals, moving forward in small steps, one at a time. The messages of hope are decisive. This does not mean deluding the child but very strongly believing that he can do it, always. Furthermore, his behavior should be reinforced with words of appreciation, such as “excellent, good!”, While he tries to follow the therapy and after any examination and intervention. Among the rights of pediatric patients, which are the least respected? Many wards are not child-friendly, do not have colorful walls, comfortable spaces, games, entertainment activities. But the healing beauty. There is a great deal to be done on this front. There are also few medical and nursing staff with pediatric specialties. When a 12-year-old is seen by an adult doctor the risk of having less early diagnoses.
The mood also matters
His state of mind will also influence him a lot. When we enter the room, the child immediately turns his gaze to his mother or father to understand what is happening – continues the pediatrician -. Whatever we doctors say is received by him with the eyes, words and mood of the parent. If this accepts the path without fear or mistrust, so will the child. It is therefore worthwhile prepare the family member apart especially if easy to anxiety. When the case is serious there are parents who do not trust the diagnosis, they proceed on their own and do not warn us. just to hear another opinion, but the child should not be subjected to persistent therapy because the course of the disease is not accepted. Resti refers to another worrying phenomenon from which to protect the little ones: Every week we hospitalize children with symptoms made up by their mothers which, after all the checks, we discover to be very healthy. Once it was rare, today it is more and more frequent. These are frail mothers, seeking attention, who may be experiencing a moment of crisis with her husband.
Against the fear of Covid
Finally, the lockdown blew up the emergence of mint discomfortamong the boys. Cases have increased exponentially, from the mildest to the most aggressive forms, such as suicide attempts, anorexia, those who no longer walk due to leg pain. Even in these cases it is difficult to convince the family that the son or daughter has a serious disorder comments Resti. The pandemic has introduced an additional fear: that of contagion. Against this fear the Gaslini pediatric hospital in Genoa in April it launched a new interactive application: Space for children, in which a nice robot that comes from a planet that has already defeated the coronavirus explains to the user’s avatar, through quizzes and games, how to protect yourself from contagion, what are pads and masks for. The story can start in 16 different ways, based on avatar profiling, and there is a grand prize (comics, music videos) for grasping the reasons why everything will be fine despite everything.
Palliative care and pain therapy
There are not only sick children who can heal. There are also those suffering from incurable diseases, with sudden aggravations and complex care needs, which can receive a concrete help response through the network of palliative care and pain therapy (law 38/2010). One of the fundamental health rights but still the least guaranteed of all. The activity provided by a team multidisciplinare and organized, according to the intensity of the intervention requested, in hospital, hospice, home and other outpatient facilities in the area. The target to ensure a better quality of life for the patient and for the whole family. How? By controlling pain and all other disturbing physical symptoms (such as asthenia and respiratory fatigue), offering daily assistance (including feeding, by vein or tube) and psychological support (to parents, siblings and grandparents) and social, to facilitate his reintegration at school, in sport and recreational activities.
Global takeover
These children must be followed at home as much as possible, an ideal place for growth and affection. it is a mistake to associate palliative care exclusively with the dying child – says Franca Benini, head of the pediatric hospice of the Padua polyclinic and member of the specific commission of the Ministry of Health -. A widespread prejudice that generates closure by families and must be overcome with correct information. When parents discover this service they tell us “ah if I had known before!”. We offer a global care with professional figures available 24 hours a day. The pathologies involved are many: neurological, muscular, respiratory, cardiological, metabolic, chromosomal. Many of these are rare, while children with cancer are less than 20 percent, the rest suffering from other incurable disorders. But, in fact, treatable in the sense described above, thanks to medical advances. The duration of the palliative care team can be lifelong.
Pochi hospice
Unfortunately in Italy only five percent of pediatric patients access palliative care and 15 percent in the terminal phase. We have only six pediatric hospices, in Padua, Genoa, Turin, Milan, Naples and one in the province of Potenza. In a couple of years we will have another four – Benini declares -. The whole network must be strengthened, more hospices are needed for the most difficult phases and home interventions throughout the territory. Having a working network means reducing improper hospitalizations in the hospital. When the late report, or does not arrive at all, it is possible to do very little for the child, who ends up in intensive care too much suffering and here often dies. The hospital is not the right answer to manage the chronic patient, a place destined for acute care, the child needs to live in an environment tailored to him, with his own rhythms, friends and relatives, concludes the expert.
May 24, 2021 (change May 25, 2021 | 09:51)
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