sent by parents of Claudia
Sambucci, Roma (Italy)
Principles
The family must feel it is being acknowledged, that its wishes and aspirations are
being taken seriously and that its responsibility towards its child is being respected.
The first appointment must be taken rapidly (within one week of the first phone
call) and the anxiety of the family has to be addressed. The treatment should follow the
guidelines available for each pathology. Appointments at the doctor's office, at home as
well as emergency phone numbers have to be organized precisely. The prognosis and future
needs of the child, both as an adolescent and an adult, should be discussed with the
parents and the child as soon as possible.
Diagnosis and Disability
The parents and the child have to be told the correct name and description of the
child's condition, as well as the prognosis and functional implications. All the necessary
exams have to be made. If no precise diagnosis can be made, the family has to know what
exams were made and the meaning of their results. Each new proposed exam has to be
explained. Each family has to receive a report, either written in an understandable
language or recorded, or both. The family's opinion has to be asked prior to sending that
report to other professionals. The family must be given the opportunity to ask questions
about the report. The latter should, as far as possible be delivered personally and not
sent. It can be sent if the professional cannot be reached easily.
Treatment and Therapy
If the child takes medication, the parents have to know what it is, why the child
has to take it, for how long and in what dosage. If the child has to take several
medications, the parents have to be given a written note as to how they should administer
them. The family has to know what kind of therapy or rehabilitation the child is
receiving, what the objectives of the treatment are and how the family can participate.
The objectives have to be clearly defined. The family and the child have to know the main
objectives and, if the treatment were to be postponed, the reasons for it. The family must
know what other methods are available for treating their child's condition (including
controversial or alternative medicine ones). They must know why the therapeutic team has
chosen a specific treatment over another. They must be informed that some treatments of
questionable efficiency may be a source of stress to the child. A family that chooses
other methods should not be abandoned by the therapeutic team.
Information
The family has to be given all the information on their child's condition and its
prognosis. It should also be given the possibility of meeting parents of a child that has
a similar condition, as well as the name and telephone number of a local organization for
disabled children. And finally it should have a genetic exam on the child's condition done
by a genetic or pediatric expert.
Medical Assistance
The child must have an accurate vision and hearing exam. It should also have a
thorough dental exam. The parents must be given the addresses of hospitals that can assist
them in making a diagnosis as well as those that accept day patients. The parents must be
told about their social rights, as foreseen by the law. The child with cerebral paralysis
that is at risk of Congenital Hip Dislocation must have regular orthopedic exam and hip
X-rays. Every child must have the compulsory immunization shots, as well as the
recommended ones, except if there are any contraindications. The growth of every child has
to be monitored regularly. The family has to be able to access all the aids useful to the
child without delays. The parents must know their rights to help with schooling
(additional teacher, special assistance) as well as all the other rights included in Law
104/1992. Any limitation of the resources has to be explained.
By F.Ciotti
From "Quaderni ACP, Associazione Culturale Pediatri" ("ACP Journal,
Cultural Pediatric Association") 1997, vol. IV n° 6:54
in Italiano