The Boy Who Loved Kites
Corresponding author: Prof. Magda Carneiro-Sampaio, Clinical Professor of Pediatrics at FMUSP, Instituto da Criança – Hospital das Clínicas da FMUSP, Av. Dr. Enéas Carvalho de Aguiar, São Paulo SP, Brazil, Tel: 647 05503-900; Email: firstname.lastname@example.org
Keywords: Hospital Humanization; Chronic Diseases in Children; Child Playing; Occupational Therapy; Hospital Playroom; Pediatric Hospitals
Inaugurated in 1976 in the central zone of Sao Paulo City, the Children’s Hospital of University of Sao Paulo Medical School (FMUSP) has been regarded as a reference center for complex, rare and of difficult diagnostic elucidation diseases, and has received patients from all over Brazil as well as neighbouring countries. As a center also for liver, kidney and hematopoietic stem cell transplantations, a wide range of chronic and severe diseases are treated at this Children’s Hospital (in Portuguese, Instituto da Criança – ICr). It is worth mentioning that ICr is a public hospital, maintained by the government of the State of São Paulo, and offers free of charge care to most of the referred patients, who usually come from low income families.
In order to assist patients in such conditions, in addition to a clinical team with a variety of specialists, the hospital relies on a diversity of professionals such as occupational therapists and psychologists amongst others, which aim at providing not only advanced diagnostic procedures and treatments but also, and equally as important, humane treatment to all its referred patients. Thus, large cohorts of patients with chronic diseases are followed-up until the end of adolescence, when they are sent to the Internal Medicine Department at the same Academic Medical Center.
Chronic diseases represent long-term medical conditions that are generally progressive and require continued treatment for which patients may need frequent, and
eventually, prolonged hospitalizations . With scientific and technological advances in health care, further alternatives for treatment arise every day, increasing considerably the survival of patients suffering from such diseases. Consequently, implications resulting from prolonged treatments are the cause of significant disruptions in the daily living of patients and their families.
Amongst childhood daily activities, playing is one of the most relevant ones, since it is an inherent aspect to this phase of life and essential to a child’s healthy development . It is through play that children establish contact with the external world, connect with challenging situations, and fulfil their curiosity. Moreover, playing contributes to psychological maturation and development of personality, empowering individuals to grow into integral human beings. On the other hand, when a child is hospitalized, particularly for long periods, their everyday life is abruptly interrupted, having to be kept away from the whole family, friends and social groups as well as from their own toys, and sometimes pets. Permeated by constant noise, food withholding, sleep disturbance and featuring unfamiliar equipment and devices, hospital routines are stressful and painful. It requires liaising with strangers, sharing space with other patients in circumstances of pain and suffering and undergoing an array of tests and medications, and sometimes invasive procedures. Pain, physical impairment and de-personalized environment give rise to negative responses that directly affect patients’ understanding of their illness and their collaborative response to their own treatment .
In this sense, providing children with playful spaces for recreation and leisure is crucial when it comes to promotion of a holistic approach to child health care and quality of life, for it allows for a reframing of their everyday life that was interrupted due to hospitalization.
The establishment of the National Humanization Policy for Hospital Care took place recently in Brazil , and amongst its guiding principles are the commitment to hospital ambience, and the organization of spaces aimed at forging more comfortable experiences for patients, families and healthcare staff.
Since 2005, hospitals in Brazil are required by law to cater for the setting up of playrooms , which have as their main objectives: i) to support patients in becoming active partners in their treatment process, whilst enhancing their acceptance in relation to hospitalizations and, consequently, turning them into more pleasant stays as much as possible;
- to amalgamate positive stimuli for the recovery process, having play as recreation, a means to stress relief, and an exceptional factor in child growth and development, iii) to expand the influence of play to family and companions of hospitalized children, by which opportunities for dialogue amongst family members, children and healthcare staff can be promoted, along with integration between patients and hospital working staff. Nonetheless, the Brazilian legislation does not underscore the importance of open spaces for hospitalized children in order to enable outdoor activities.
In this brief report we describe the case of a boy with a chronic severe disease who expressed the need of having time to play outdoors, an activity that initially seemed impossible to be offered to him. Nevertheless, the hospital staff, with creativity and good will, could successfully satisfy his needs, and thus, from such experience, he leaves us with important lessons of how to better approach patients with long lasting hospitalizations due to severe diseases.
AHSS was a boy with diagnosis of Prune Belly syndrome, who lived until the age of 6; he presented early signs of renal insufficiency, needing permanent dialysis since his second year of life. He was submitted to a failed kidney transplantation in 2013, when he was 5 years old. He spent most of his life time in the hospital, and his mother always accompanied him, however contact with other family members was rarer.
Following the renal transplantation and due to postoperative complications, AHSS was maintained for approximately two months on corticosteroids and other immunosuppressive drugs, which limited to a greater extent his participation in recreational activities. During this long lasting stay in hospital, despite his poor physical conditions, AHSS enjoyed joining in the activities carried out in the ward playroom, and those moments seemed to be one of the few when he could experience joy and relaxation. With the purpose of giving a new meaning to his daily routine in hospital, he was asked
what he enjoyed doing most, to which he unhesitatingly replied: “flying kites” – something he would frequently do with the help of his mother and friends in a nearby field close to his home. Considering the severity of his clinical condition and the remote perspective of an imminent discharge from hospital, fulfilling his wish became imperative for the staff, despite the hospital absence of infrastructure for such … up until now.
The proposal and process of crafting the kite with the view of enabling AHSS to carry out an activity of his wish, whilst taking into consideration his life story, social and cultural values, preferences and own potential were considered of crucial importance to giving a new significance to his long stay in hospital. The kite was made by himself with support from the hospital staff, who realized that there was a large open space at the rooftop of one of the hospital buildings waiting to be concluded as a new infirmary when additional resources were available. To witness the delight in AHSS’ eyes when, taken to the hospital rooftop, he succeeded in flying his kite in the sky was beyond words! From that day on, AHSS could be seen walking along the ward corridor, with the kite under his arms, telling everyone that indeed that was a kite which could fly very high! (see Figure 1).
Figures 1A, 1B and 1C – Aspects of AHSS flying his kite on the
rooftop of the hospital.
The legacy left by AHSS includes many lessons for our hospital, as well as for others, along with public policies in the field of humanization of care for hospitalized children. Among these lessons are:
- The need for pediatric hospitals to have specialized staff and appropriate infrastructure in order to enable adapted recreational activities to be offered to patients, even in cases when financial resources are limited. Such activities should be regarded as essential if humanizing and integral treatment is to be provided, and never perceived as secondary in relation to traditional medical activities.
- Within this framework of integral attention to patients, it seems necessary to individualise care, taking into consideration age, tastes and preferences, as well as socio- cultural values and habits.
- Outdoor activities, which for most of the hospitals are difficult to be provided, can be of great importance to a number of children; particularly contact with nature, natural light and fresh air may contribute towards the recovery process in some cases, and enhance quality of life in circumstances when cure is not possible.
The authors would like to thank Ms. Claudia Venier for her careful revision of English language.
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