Catatan

The genesis of this book arose from research carried out towards my
doctorate into the post-transplant experiences of a group of children with
severe combined immunodeficiency syndrome (SCID), and so the central
focus of this book deals with the long-term quality of life experienced by
those children who have survived bone marrow transplantation (BMT) for
SCID. However, experiences of working with children and their families
with various other disorders have shown that the problems experienced
by the children with SCID and their families are not unique. Any child who

undergoes hospitalisation at an early age, particularly if there is some de-
gree of isolation involved (although just being in hospital infers that there

is some isolation because the child is separated from all that is familiar) is
at risk of facing the same stressful events and experiences as is the child
with SCID, and consequently developing similar psychosocial sequelae
as these children. Such similar experiences can be found in children who
have required intensive care as a neonate or a young child, as well as those
children who have been hospitalised as a result of trauma or such diseases
as cancer. In addition, these potential problems can arise with children
who have chronic diseases, such as asthma, cystic fibrosis and diabetes,
and who require many hospitalisations due to acute exacerbations of their
chronic disease.