Most groups organise once a year or more often an
informational meeting for parents. To help starting groups, we give you some
tips and a list of topics that might be of interest. One of the doctors, nurses,
psychologists, social workers, teachers or parents will certainly be willing to
read a paper.
General
Place: Choose a central place, this can be the hospital but keep in mind that
some people don’t like to come (back) there. Sometimes a neutral place -
conference centre - is a better choice.
Time: Choose a time when as many as possible parents can come, e.g. a day in
the weekend. Reckon with distances and travel time, so don’t start at 9h00 in
the morning and don’t close at 9h00 in the evening.
Other: Organise a program for the children and a babysitter for the young
ones. That way parents don’t have to bother about “who is taking care of my
kids?”
Announcements: Announce the meeting in your newsletter, on posters
on the ward and in the out- patient clinic, in local media and, if you have a
membership list, send invitations to all group members. Inform the medical staff
about the meeting a long time ahead so that they can tell the parents.
General medical
topics:
cancer in children
diagnostics
multidisciplinary treatment
trials and protocols
quality of care
bone marrow transplantation
home care
pain management
long term effects
long term follow-up
new treatments: the future
Disease related
topics:
treatment of leukaemia, Hodgkin and non-Hodgkin lymphoma's, brain
tumours, bone tumours, solid tumours, retinoblastoma, etc.
bone marrow transplantation in the treatment of ALL, neuroblastoma etc.
Psychosocial
topics:
coping strategies
family dynamics
the parent as part of the treatment team
school re-entry
long term cognitive effects and remediation
siblings
grieve and bereavement
long term psycho-social effects
rehabilitation
Other
topics:
ethical issues
nutrition
alternative treatments
genetics