5g transatlantic lab
How to reduce the negative impact of long term paediatric patients (and families) experience at the hospital and make it as pleasant as possible?
How to maintain and nurture the social bounds pre existing before the hospital?
Being in the hospital when you are a teenager makes you feel different than the other young people. It’s hard to be a teenager, but it’s harder if you are for long periods in the hospital. You feel alone and disconnected from your family, mates and friends. In this context it’s essential to have easy means to be in touch with them and also with the other teenagers that are at the same time as you in the hospital.
When in hospital, young children want to feel socially connected to the internal hospital community as well as to the outside world. Technology can assist to broaden the spectrum of children's social connectivity when in hospital - to home, school and the wider outside world - and create a positive hospital experience.’
Break the routine of being in the hospital (it can be many days in the same room and facilities) it’s important. Support during the process by experts and other patients can help to make better the experience, as in the second case you have peers to share your feelings and emotions. The lack of addressing the issue may lead to:
Depression: Low self-steem, lack of concentration, demotivation, etc.
Experiences of abandonment: Feeling left out, abandoned, closing up, etc.
Maladjustment reactions: Pathological anxiety, neurological reactions (phobias, hysteria, conversion, obsessions), etc.
How can we find ways to create engaging educational experiences for patients?
Teenagers that are for a long time in the hospital feel different from their peers. New feelings beyond the ones related with the adolescence phase appear, and mainly are connected with fears: to lose the course, to lose friends and mates, etc.
Helping children stay connected with regular academic and social activities during their hospital stay has been shown to provide them with a sense of normalcy and helping cope with the management of their illness. The involvement of a teacher in the children’s total care enhances the student’s learning potential while ill, and facilitates a smoother return to school.
The support from the hospital school and for their school it’s essential in order to continue being involved with school activities. It’s important to consider in this scenario that there are many teenagers that are not admitted in the hospital but that are receiving treatments in the day hospital for example three days per week. In this context the support to continue with the regular activities of their schools it’s important.
Dropout from school can be an important impact of their long time in the hospital. They can lose in some cases a year. Feelings of being different, desmotivation and depression can be around and require the support of the professionals working providing educational support to the patients.
How to deal with all the negative feelings that the sickness might trigger in patients such as anxiety/ guilt/ anger/ depression/ loneliness?
Child hospitalisation, regardless of the reason for admission, is a stressor capable of generating emotional and behavioural alterations in the person, which can remain after hospital discharge. This requires its detection and the development of interventions to prevent or reduce the harmful effects that it entails, as it places the child in a situation of weakness and can have a negative impact on physical, psycho-emotional and social development.
Hospitalised children tend to feel afraid and hospital tends to feel like a hostile environment: they cannot go out, they do not see their friends or brothers, the facilities scare them, they do not understand anything, etc.
Adaptive reactions: Opposition, rebellion, anger, submission, collaboration or inhibition.
Defensive reactions: Regression to previous stages of development, denial or identification (“it's not them, it's me”).
Reactions built by mixed emotional - cognitive experiences: Fear of death, feeling of guilt, feeling of helplessness, low self-esteem, experiences of abandonment, experiences of fragmentation, mutilation and annihilation.
Maladjustment and maladjustment reactions: Pathological anxiety, neurological reactions (phobias, hysteria, conversion, obsessions), depressive reactions, abnormal reactions
How can long term paediatric patients find ways to decompress/ have fun/ be entertained and develop new hobbies?
Entertainment is an essential part of children's development, and it can be a key tool to uplift children’s self-esteem and assist in the emotional healing and acceptance of their reality. Additionally, it will help them to adapt to hospital life and ease the stress of their families; but being stuck at a hospital bed makes it more challenging for paediatric patients to carry on with their regular hobbies.
In a patient panel discussion done by the staff of the patient experience area of Sant Joan de Déu Children’s Hospital teenagers mentioned that they want to have:
Sport activities (considering their physical limitations).
Experience in different ambients not only see/be 24h in the same room.
Outdoors contact (while this can be feasible due their health condition).
Celebrate events during their time in the hospital (they asked that the world needs to go inside of the hospital).
Uncertainty: regarding the length of their stay at the hospital and the situation in general makes it harder for children to look for entertainment beyond video games and movies.
Loneliness: Isolation is a common feeling among the patients and entertainment if it’s collaborative can help them to break this loneliness. Patients don't want to feel different from their mates, and most entertainment options are to be enjoyed individually (such as video games or movies).
Hospital interactions: Despite children are highly interest in this, there might be some difficulties to interact with other patients at the hospital. There might also have very diverse interests and age difference is an issue.
Affordability: Entertainment can be expensive, and not all families can afford it.
How can we use this traumatic experience as an opportunity for families to strengthen their bonds?
Child hospitalisation is a traumatical experience for the whole family, not only the hospitalised child. It completely affects the whole family unit and it should not be overlooked. Feeling of guilt, fear and multiple psychological effects can be triggered.
In the hospital there are some initiatives to support family members, but in person. Currently, with the pandemic, some have been converted to videoconferences to share experiences.
These actions arise from professionals, with little structure and resources. A more continuous periodicity would be necessary, with the development of dynamics and technology truly adapted to the new videoconferencing format. Communication technologies adapted to children are lacking.
Brothers: Biopsychosocial difficulties. Loss of parental attention, changes in school performance, emotional regulation difficulties, behaviour problems. Increased anxiety-depressive symptoms. Worse quality of life. Tendency to parentalised role. Increased family cohesion, sensitivity, empathy. Increase prosocial behaviours.
Parents: worse quality of life. Relationship problems. Claudication, hyper vigilance, anxiety-depressive symptoms, loss of identity, anticipated grief. Increase capacities and strengths.